For those who have Psoriatic Arthritis

Good Morning everyone! I am kind of a "lurker" around here but one the shoe
point I would like to throw in my two cents worth.
I have the worst feet! They hurt constantly. They are ALWAYS swollen so I
have to buy double wide width shoes. They are so dry the skin cracks and
bleeds!
I finally found this shoe. Actually my Dr. recommended New Balance or
Saucony. I like them but I needed something nice also. Well, Soft Spots is
great. I was going out of town for Christmas so I bought a few pairs. Walking
in the airport is bad enough with PA, but when your feet are hurting...
geez....
There is a few places that sell them on the Internet. I got one pair from
www.123shoes.com. The only reason I bought from them is because they have
free shipping and on your first order you get $5 off.
At one time I bought Easy Spirit a lot, but after trying Soft Spots, I don't
think I will be going back. I also like the stretchy kind of shoe, especially
the one by Eassentials. (sp?)
I'll go back to lurking... hope this helps someone.
Danielle

It is printed in some literature that PA CAN be in the jaw. TMJ
means tempro-mandibular-joint.....so everyone has TMJ <grin
I have been through all kinds of hell due to TMJ disorders and will
share my story if anyone is interested. The short version is that I
had two jaw surgeries about three years ago and it helped
tremendously. At that time I couldn't even eat and surgery was an
act of desperation. The oral surgeon went in and removed debris from
the arthritis and vasculitis, much like a knee is cleaned out.
Today I am having pain again (although not as awful) and my jaw
misalignment is damaging my teeth a lot. I have an appointment this
month with a trusted orthodontist to consider braces! I would get
braces just in time for my 40th birthday...imagine! I wear a mouth
splint at night and it does help with the headaches and neck/jaw
pain. LaRita

to the woman who is having hives and is on plaquenil.
call your md IMMEDIATELY and get off of it!!!
i started having bad pain in april 95, went to a rheumy
who put me on plaq, prednisone and relafen. i didn't
feel comfortable with the combo but didn't have the nerve
to question. within a week i had hives, that led to my skin
peeling off from head to toe for 3 months. it was so painful,
it was like having a sunburn. so many layers peeled off
i was always cold even though it was 90 degrees out.
before the reaction, my arthritis was minimal. during,
i became anemic, and the pain was eventually so bad
that i couldn't even get out of bed. my life was ruined.
i had to quit work and 3 yrs later get disability. i took
4 years and countless meds to get where i am today.
i had no psoriasis before the reaction and now i am
covered scalp to ankles. i don't anyone to ever
have the experience i had. please call your dr.
and don't take no for an answer.
susan in ohio

Can anyone recommend a good pair of shoes with soft springy heels?
I have no cartilage in my left knee and very little in my right,
and sometimes get a sharp pain in my knees with each step. It seems
like having "shock absorbers" built into the heels of shoes would
be a good idea, but so far haven't found any that retain their
cushioning effect for very long.
By the way, after reading many of the messages on this board, about
the only part of the body that I haven't seen mentioned as being
affected by PA is the jaw. Anyone else have arthritis of the jaw? I
know it's an unlikely place since it isn't exactly a joint, but
it's where my PA first showed up (about 15 years ago at around age
36) before I even knew there was such a thing as Psoriatic
Arthritis. At the time I thought it was just a bad toothache or ear
infection, but neither the dentist nor Ear/Nose/Throat (ENT?)
specialist could find anything wrong. It finally went away after
about a week, and only affected the left side. Ever since then it
sometimes crackles when I open my mouth wide, as in a yawn, but it
wasn't until many years later after I'd developed PA in some other
joints that I mentioned it to my rheumatologist. He X-rayed the
jaw, and sure enough, there were bone spurs sticking out all over!
So now I crackle when I cackle ;-)
-- Ron

Hi I have been on MTX inject (15) for 12 weeks now
with no luck. I havent seen any results. I am assuming
I am one of those unlucky ones that it just isnt a
good match for. I was curious if anyone knows what I
will do next? (I dont see my Rheumy for 3 weeks still)
The last time she took xrays she saw some joint damage
in my hands. I am so afraid that if I dont get on a
DMARD I will end up in a wheel chair with perm damage.
Is this correct? Is there any other good drug out
there?
Also I currently only take 2-4 Motrin a day with the
mtx. I think I am getting immune to that. Vioxx and
some of the of the other prescription anti's made me
sick. Can anyone suggest anything over the counter or
another really good anti?
Lastly does anyone know if during our routine blood
tests if they check for Kidney problems?
You are all so wonderful and helpful.
TIA
Judy in CA PS My PA started in my left pinky also :-)
(That is so wierd)

Pat B.. I was just reading some of your posts . And i'm amazed at
your sense of humor... Especially all the medical stuff you have going
on... Thats a really good thing... Keep staying positive.. Its the only
thing we can do.......
I havent posted in a while.... But i'm still in alot of pain... (shoulders ,
lower back mostly) And the cold weather in newjersey isnt helping either...
Anybody know if enbrel is approved for PA yet? My stupid doctor wont give it
to me because it isnt approved yet.. only for RA...... And i'm not taking
any meds until enbrel gets approved... (yea i know , i might be waiting a
long time)
take-care all.....
Newjersey aka Mike,
I found out that my Doc put RA on the letter to get Enbrel approved
for me. What kind of world do we live in that doctors have to "fib"
in order for their patients to get relief? PatB

happy new year!
i am one of the left and right pinkie people. my right one
is still bendable. i haven't written in a while because
nothing major has been going on here. my psoriasis is
still out of control, so much so, that i finally gave in and
went to the dermie yesterday. it gotten to where i felt
like i was going to jump out of my skin. i would scratch
til i bled and it felt raw. i have it from scalp to ankles and
have never been able to get it under control. the dr
decided to finally try a cyclosporine. he was going to put
me back on mtx but it damaged my liver last time.
i had to get blood drawn first and i will have to be monitored
while taking the neoral. it is suppose to be a last resort med
for p sufferers and arth. too. it is also suppose to work quickly.
have any of you taken it, and if so how did it work, and
side effects. i would appreciate any feedback. i haven't
taken any meds in 2 years, but i had to do something.
i hope this works, w/out the side effects i got with soriatane.
well, that's all from here. have a great weekend.
susan in ohio

Greetings everyone. I have had psoriasis for the past 10 years - getting
progressively worse. It started out just covering my hands... now I've also
got patches on my scalp, back, thigh, bellybutton, foot, and face
(sometimes). Over the past month or two, I've developed PA in my left ring
finger.
My question is:
Will my arthritis "spread" just like my psoriasis?
I am a professional musician (piano) and rely on my fingers greatly. I
haven't seen a Rheumatologist yet. I'm currently looking for a good one in
Boston, so if anyone knows someone...
Thank you all for providing so much information about this disease. Your
posts have helped me and I am grateful.
Thanks again,
Zac

Hi my name is Ywellen and mty daughter was just dxed with PA and it
really has me puzzled at this time. She was dxed almost 2 years ago
with Polyarticular Juvenile Rheumatoid Athritis(JRA). Let me tell you
about her medical condition. She has Tourette Syndrome,Asthma,Excema,
ADHD and JRA.It's frustrating not knowing here this disease is headed
as it is and seeing my baby hurting and not being able to stop the
pain.So I need someone to shed some light on this type of arthritis
PLEASE. Thanks, Ywellen

After a very long wait, Im finally getting to see a rheumy in a few weeks. Im told that it will be easier for him to make decisions when I see him on the first visit if I come armed with test results from my GP. My problem is my GP hasnt ordered any tests and I dont want to go all the way to the rheumy a whole days trip only to be sent home for the tests and return again in a month or two. I hurt too much to go through all that. My GP is the kind of guy who doesnt think ahead. The good thing is if I tell him I want to do something, hell do it. So Ive made an appointment to see him next week.

What I need from you is

What is typical of the kind of tests youve had to make the diagnosis and to follow up on treatment?

Specifically, for those of you who have major problems with pain and swelling in finger and foot joints and a swollen ankle that is nearly incapacitating do you normally get x-rays taken of all these joints? Do you have blood tests too?

If there is a family history of other types of arthritis along with the PA do you get testing for those types too? And how are they done?

Other information I can give him verbally and there is no doubt about my GPs diagnosis of the PA. But I just cant handle the trips back and forth before someone decides to treat me. Im desperate. I swear Im going to die or something because no one can keep living like this and go on.

Any information I can get as soon as possible would be greatly appreciated!!!!

Heather Watson

Marcie recently asked about her husband having PA but not P, and Gayle wrote
that she didn't think this was possible. It is possible - a small
percentage of people with PA do not have P at all. Often, there is P in the
family (as it seems for Jerry), but sometimes there isn't even that. I
don't know what the percentages are, and I think it is pretty small, but
it's certainly medically possible so Jerry needn't go looking for the P - if
it comes, he'll know, and if it doesn't, then lucky him!
Marcie might also be interested to know that only about 5% of P sufferers
develop PA, so her brother-in-law has only a small chance of getting PA too.

My husband was diagnosed with PA about 8 months ago although he doesn't have the P. After reading some of the past posts I am wondering if anyone else has this. His brother does have P but no signs of PA.

Also, the rheum. never prescribed mtx-just went from celebrex, vioxx and some other one straight to Enbrel which he has had one dose of and is amazed that much of the pain is gone already.

Any input will be greatly appreciated!

Marcie

wife to Jerry-PA suffer

I would like to hear from any members who have had blood tests or liver biopsies that indicated liver disease after taking sulfasalizine. I have recently been diagnosed with non-alcoholic cirrhosis and feel that it must have been caused by some of my medication. I have also taken prednisone, relafin,mobic,votarin,zoloft and elavil.

Allayne

hi everyone! I haven't been reading my mail the last few weeks with all the holiday busy-ness, but I see the shampoo topic has come up. I have been using paul Mitchell's Tea Tree Shampoo and it does control the P . I use a temporary color on my hair and it doesn't seem to strip it. I use the shampoo about every third time. I also bought tea tree oil itself to use on my P nails. I had 4 of them and am now down to 1. That probably has more to do with the fact that I inject 22.5 mg of mtx weekly , but who knows. Hope everyone has a happy, healthy new year! Take care, Kelly in Fl

Hi, hope everyone is ready for a good 2001. I am
determined to make it a good one :-)
I am currently on 15 mg of injectable mtx (hasnt given
any relief yet after 12 weeks :-< ) but am also
taking 3-4 motrin a day for the chest pain I am
experiencing. I have posted this before and have found
some relief through the use of heating pads. My
question is is it ok to take 3-5 motrin's a day? It
seems I cant get through the day without it. I think I
am going to ask my Doc when I go in Jan for some added
help. I cant stand the thought of adding more drugs
though.
Also does anyone have any recommendations for
mattresses that provide relief for sleep? I would like
to get a new mattress but want it to be comfy for my
better half as well (hubby) Someone told me once that
it might be covered under insurance as well, any
thoughts?
Lastly, I have been hearing a lot about EPO and was
wondering if someone could give me a quick down and
dirty on the supplement? I am hesitant to try new
herbs with all of the warnings out there.
As always thanks and happy new year to all
Judy in ca

I am very thankful to have found this site. I was diagnosed with PA
about 2 years ago. It seems to be getting worse, especially at
night, and I haven't been getting much relief from the medications
I've been put on. Glad to see that there are some alternatives which
I can try. I'd love to know of any natural remedies for managing
this condition.

thanks for someone mentioning a type of shampoo
that will help the scalp and not strip the color. i like
denorex, but it strips the color right out.
i have given in to so many things over the years because
of the pa, but i will not show my gray! i am only 36, too
soon to even feel old, much less look old.
is tazorac a psoriasis or arth. med. i am going to have
to go back on a med, because topical meds are no
longer helping. soriatane gives me uncontrollabe stomach
problems if i take enough to help. i would appreciate
any suggestions.
thanks,
susan in frozen ohio.

Judy writes:
Has anyone ever experienced your local pharmacy telling you they are out
of mtx? I went to get my
prescription filled and they told me that most of their providers are
out of it.
Same thing happened to me last month. I get a 25 ml bottle which lasts
about four months. Last month my pharmacist told me the same story, "out
of it and NO DEFINATE DATE FOR AVAILABILITY" . Took two weeks to get a
supply in and I was back on orals until it arrived. I discovered (by
calling ten pharmacies) that NOBODY stocks this stuff so when the
wholesalers are out, everybody is out. It's a "low use" drug with a
small profit margin. No incentive for the manufacturer to make a huge
supply. Seems to be an occassional problem but not anything we have to
be terribly concerned over. Forget about getting some from the rheumy or
the derm. They don't stock it and they can't get it either if the
wholesaler is out.
Remedy: Don't wait until your almost out (as I did) and reorder with a
two week supply in reserve. If there is a temporary shortage, you get
into the list early. If you don't mind spending the extra money, I found
out it is also available in 10 ml bottles that may be avaialable when the
25's are out of stock.
Barry

Hi, Has anyone ever experienced your local pharmacy
telling you they are out of mtx? I went to get my
prescription filled and they told me that most of
their providers are out of it. He said that the notes
in the computer just say out of production, kind of
like the recent flu vaccine problem.He said to call my
DR and see if they will give me some. (yeah right!) He
said it was only the injectable kind that was out. He
did find one local pharmacy that had a couple bottles
in stock. This scares me! I am going to call my Doc
and see what she says. Wierd!
Judy in CA

Greetings for the Season!
I continue to make my health my #1 priority. Most of my energy is
focused on the goals of making my daily life more comfortable and
ensuring that I remain as mobile as possible for as long as possible.
Of my time - outside of being with my family - it is spent mostly on
health, educational, and employment issues. Being closer to family
support was one of the more significant reasons that I relocated "home"
to SE Louisiana and that is very much working to my benefit now.
The wheels of progress on the employment front turn painfully slow, but
they do turn. In this area I am still mostly in a "research &
education" phase as I sort through what it is I can "do" for both the
short and long term that will balance all of my needs, especially those
relating to my Psoriatic Arthritis (PA) condition.
My health situation has remained fairly steady. I progress in some
areas while I slowly regress in others. Time and fatigue are no doubt
my biggest enemies. If I were to do all that I could to improve my
health and mobility, that is all that I would do every day. Of course
that would get pretty boring for me so there are sacrifices. Yet I have
made significant progress on educating myself about my illness,
especially in the past few months, and have even found a place where I
can share some of these efforts with others that are just like me! This
has been marvelous.
One of my best forms of daily entertainment continues to be my
motorcycle. It is a 50mi round trip for my swimming routine and since
it is mostly through rural & wooded areas it makes for a rather pleasant
ride. As crazy at it sounds, this is still the easiest vehicle for me
to operate. Of course it is ALSO the most FUN! Zoom - ZOOM!!!!!!
<GRIN
sailboard equipment has remained virtually untouched for two years.
Contra Dancing is on my mind continuously but the activity itself exists
for me mostly in my imagination (for now). I managed to again visit the
wonderful folks at the Spring dance weekend in Huntsville, AL (on my
bike) and was my only dance this year. <frown
Swimming has no doubt been the most substantial glue for my existence
and has been responsible for my most significant accomplishments this
year. This Spring I "took it up a notch" and rounded out my routine to
a 1x600 breast, 2x300 back, 3x200 free, in about 50 min. I also started
doing Yoga again. I thought this was pretty darn good. In Summer I
then managed to squeeze off a few strokes of butterfly. This was too
good to be true and figured I'd peaked for the year, nothing could top
that! I was wrong.
This Fall I decided that, at the rate things were going, it did not seem
unrealistic that I could get active again with US Masters Swimming and
possibly even compete again. Just showing up seemed like a good enough
accomplishment to me. I intended to sign up now and possibly visit a
meet this summer. As I browsed for registration information I noticed
that the only local event listed for many months to come was a two-day
meet in less than five weeks. I did not feel mentally prepared but
figured I'd get through it physically so I signed up five days before
the deadline. This was a huge leap outside my "comfort zone".
My goals for the meet were to finish all my events without being
disqualified or injuring myself. Less than ten minutes before my first
event I wrenched my shoulder in a practice start and doubted if I would
get through the day. By the end of the meet I had four medals (2
bronze, 1 silver, 1 gold) and was the 3rd highest point scorer in my age
bracket (and no DQ's). Not too shabby for a "feels old" crippled guy
with a lame shoulder! From the end of day one until I got home after
the meet I could not seriously consider what I had accomplished without
my eyes welling up with tears.
It is impossible for me to express in this simple message how much this
years accomplishments in my swimming program mean to me.
I am a firm believer in the power of laughter as a healing force so I
have followed this update with a bit of humor that answers a burning
question that has plagued me for many years. Hope you enjoy it.
I wish you all a Joyous time this season and a fruitful New Year. Your
dreams will come true if you believe strongly enough in them.
Nameste,
Conrad
Engineering Guy Extraordinaire
(Pretty good Swimmer Guy too!)
"An Engineer's Christmas - or: How does Santa DO that?"
There are approximately two billion children (persons under 18) in the
world. However, since Santa does not visit children of Muslim, Hindu,
Jewish or Buddhist (except maybe in Japan) religions, this reduces the
workload for Christmas night to 15% of the total, or 378 million
(according to the population reference bureau). At an average (census)
rate of 3.5 children per household that comes to 108 million homes,
presuming there is at least one good child in each.
Santa has about 31 hours of Christmas to work with, thanks to the
different time zones and the rotation of the earth, assuming he travels
east to west (which seems logical). This works out to 967.7 visits per
second. This is to say that for each Christian household with a good
child, Santa has around 1/1000th of a second to park the sleigh, hop
out, jump down the chimney, fill the stocking, distribute the remaining
presents under the tree, eat whatever snacks have been left for him, get
back up the chimney, jump into the sleigh and get onto the next house.
Assuming that each of these 108 million stops is evenly distributed
around the earth (which, of course, we know to be false, but will accept
for the purposes of our calculations), we are now talking about 0.78
miles per household; a total trip of 75.5 million miles, not counting
bathroom stops or breaks.
This means Santa's sleigh is moving at 650 miles per second -- or 3,000
times the speed of sound. For purposes of comparison, the fastest man
made vehicle, the Ulysses space probe, moves at a poky 27.4 miles per
second, and a conventional reindeer can run (at best) 15 miles per hour.
The payload of the sleigh adds another interesting element. Assuming
that each child gets nothing more than a medium sized LEGO set (two
pounds), the sleigh is carrying over 500 thousand tons, not counting
Santa himself. On land, a conventional reindeer can pull no more than
300 pounds. Even granting that the "flying" reindeer can pull 10 times
the normal amount, the job can't be done with eight or even nine of
them -- Santa would need 360,000 of them. This increases the payload,
not counting the weight of the sleigh, another 54,000 tons, or roughly
seven times the weight of the Queen Elizabeth (the ship, not the
monarch).
600,000 tons traveling at 650 miles per second creates enormous air
resistance - this would heat up the reindeer in the same fashion as a
spacecraft re-entering the earth's atmosphere. The lead pair of
reindeer would adsorb 14.3 quintillion joules of energy per second each.
In short, they would burst into flames almost instantaneously, exposing
the reindeer behind them and creating deafening sonic booms in their
wake. The entire reindeer team would be vaporized within 4.26
thousandths of a second, or right about the time Santa reached the fifth
house on his trip.
Not that it matters, however, since Santa, as a result of accelerating
from a dead stop to 650 m.p.s. in .001 seconds, would be subjected to
acceleration forces of 17,000 g's. A 250 pound Santa (which seems
ludicrously slim) would be pinned to the back of the sleigh by 4,315,015
pounds of force, instantly crushing his bones and organs and reducing
him to a quivering blob of pink goo. Therefore, if Santa did exist,
he's dead now.
Merry Christmas!

I have been reading the postings on this list for several months and
would like to thank you all for the encouragement and support I have
found here. Although I have been dealing with the skin problems for
nearly 20 years, I have only just recently been diagnosed with PA.
But, I had a feeling for a long time that the physical problems I was
experiencing were somehow related to my psoriasis.
So now I'm taking Sulfasalazine and Vioxx (my spouse and I are
wine collectors, so Methotrexate seems like too big a sacrifice
for now) which have made things better, but made my skin worse. So,
I've started Tazorac, but only a few days ago so it is too early to
tell how it is working.
Anyway, Happy New Year and Hang in there. It may feel like a roller
coaster, but every day brings new adventures and discoveries.
Andy

Hello out there
I have been diagnosed with PA for about 6 months. I am currently on 20
mg of Methotrexate orally , but I am about to begin injections as I am
not getting relief at all.
I would like to talk to others that can understand my pain, which is
chronic. The pain is concentrated in my hands and wrists, but is also
in my knees neck and shoulders.Occasionally it shows up in my jaw and
seems to move around my body, settling in joints for a while then
moving on.
I am 36 years old, married with 2 children. Although my family know
what is going on they don't really know how to help me
I am really miserable and find the pain very hard to handle I am also
taking 10mg of prednisolone just to get me through this bad period. my
rheumy is surprised I haven't had much relief with the current level
of medication. He has hoped to be able to control it and send it into
remission and has now explained that it may not happen. The thought of
spending the rest of my life with this amount of pain is hard to
accept and I seem to have spent the last 48 hours crying trying to
accept my condition.
My emotions are forever on the surface and I know the extra stress is
not doing me any good
All I want from anybody who reads this is some regular chatting so
that I know I am not alone
I am not normally such a depressing person but it has gotten the
better of me at the momentand I am having difficulty adjusting to my
situation
Looking forward to talking to somebody who understands
:)
Sheryn

Have had psoriasis for 3 years. Started on the scalp. Started
appearing on arms and torso after hysterectomy a year and a half
ago. Not extensive coverage. Went for a first appointment with a
rheumatologist today. Both ring fingers have swelled up like
sausages. Diagnosed with PA. Started on methotrexate. SIGH. Was
told the PA can be crippling if left untreated. The Psoriasis has
been mentally tough. Now this. I am a little overwhelmed.

As to the paraffin with mineral oil.....using the "crock pot" method
from Arthritisnet.net (new addy, don't know it) it was 4 pounds of
wax and a cup of mineral oil. You'll have to get out a calculator to
figure out how much for your individual usage:)
I got up to 30mg of mtx before my P cleared up on my scalp. Even then
I had to use Dovonex etc.. to help it along. Never had good results
from the mtx but was off it and onto Enbrel a little over a year ago
and am doing soooo much better. Went for a little over a week (while
I had a virus) with NO pain meds!! Why does our body fight the Art.
only when we are sick with something else?
With this cold weather the burning joints probably help people feel a
bit better/warmer :)
PatB

12.5mg/week currently
It took a month or two for me to get good benifit, and we sorted dosages for
a year or two.
happy trails - Rob Glover

If anyone using MXT could tell me how many mg. of the drug they are on, and
how long it took for them to be relieved of the stiffness of joints and/or
swelling, it would help me. Thanks
Edie
CT

Can someone compare the treatment for fibro and/or PA between an RD
and a neurologist -- or direct me to a web site that does?
A friend suggested that I should see a neurologist rather than a
rheumagologist for the fibro. I've noticed that some on the various
lists do see a neurologist and I'd like to know if they see a
rheumatologist as well.
How can one tell the cause of 'pain in the neck' -- whether it's PA
or fibro or both. Today nothing seems to get rid of the spasms and
headache. :(
Patty B in a windy, cold Pineywoods of East Texas

hallelujah!
i am not a freak! i used to think i was the only one in
the world whose p didn't get better in the sun, but
actually gets worse. i am sorry there are others
who suffer like that too, but i'm glad i'm not the only one.
also, i used to take epo faithfully when my a was really
bad, it would help. i quit taking it when the pain became
manageable. well, i have a finger that the swelling won't
go down on, and i am afraid i am going to have to go
to the doctor. my husband saw it and freaked. he is
worried the circulation is going to get cut off. anyway,
i started back on the epo to see if would help, 3 days
after i started, my whole body hurt, my finger was more
swollen, i felt worse than i had in years. so i quit taking it,
and i am back to normal(?). i don't what that was about.
anybody else had such a reaction?
well, here in sw ohio, it rained all day yesterday, melted all
our snow from last week. then last night, the water froze
and it is snowing again, suppose to get about 4 inches.
not as bad as you guys out west of us, but this is a little
scary this early. we might actually have a winter this year!
l love the snow, now that i don't have to drive in it to work
everyday!
well, have a great week everyone.
susan in ohio

Hi I have heard that Paraffin wax baths are great for
arthritis suffers. Does anyone have one? If so would
you recommend it? Any particular brand?
Judy

Does anyone know what it means when your fingers keep falling asleep?
Jayne

hey everyone,
here's a few comments I wanted to share -
as far as diet goes, I stopped caffeine, citrus and nightshade veggies
(too hard to stop dairy!). I'm not sure if it helped when I stopped,
but I do know that when I eat any now it does seem to make the pa
a little worse by the following day. I think my doc made a valid
point - she said diet probably helps a lot if you have mild pa but if
your pa is really bad the effects of diet will not be very
significant. so I try to avoid those trigger foods but I'm not as
militant as I was at first. it's too stressful to restrict my diet
when the results aren't that noticable and I'm still in pain. I mean,
nothing's more comforting than a hot plate of mashed potatoes and a
hot chai...
anyone there on voltarin (diclofenac)? my insurance co is making me
try 2 nsaids other than ibuprofin or naproxen before they will
authorize the vioxx. the voltarin is making me sick! nausea and
intestinal cramps and it doesn't kill the pain much either. well, a
little, but not as well as vioxx. just thought I'd provide you with
some feedback. don't know what my next nsaid will be.
the mtx still isn't having a noticable effect. it's been about 9
weeks, I'm on 10 mg per week. patience! patience! but thanks to you
all my attitude is so much better. for the people who don't think
their pa is as bad as others on this group ... please participate
anyway! I think pain is relative, we get accustomed to it and the
baseline level that we gage ourselves on changes. I think I'm about
in the middle - the pa is better and worse than others on this group.
but we all perceive our pain in similar ways and we all have to deal
with changing our lifestyles in some way or another.
speaking of pain, heh, I got some tattoo work done on my leg and got
tattoo-ed right over a small p patch. the ink didn't hold well, it's
a bit faded, but the p is gone! guess that's an extreme "cure"
though...
well everyone, thanks for reading my ramblings. just felt like
writing while I feel gooood so I'm not always complaining. warm
wishes to all you chilly folk.
mika
Moderator note: Mika, my doc told me to take a Prevacid every day to help with
the Diclofenac. But watch out, it lets you feel better tummy wise and you could
eat more:) PatB

Hi, Jeff,
I am in a similar position to you: have had psoriasis since a child, mild
arthritis since a teenager, with the biggest flare starting 1 1/2 years ago and
still continuing - but not nearly as bad as a lot of what I read on this
newsgroup. However, that is partly due to what I have learned here, such as
taking EPO, which gave me back a lot of my 'old' energy.
So, I'd be happy to talk BC (I get the digest version, and your email wasn't on
it).
On another topic, I also have fibromyalgia (confirmed by my rheumy) and
myofascial syndrome (often go together, and sometimes confused). Seems like we
should do a survey on this one?
Happy holidays to everyone!
Geri
gactor@...

Hi Nancy,
Your's sounds a lot like mine, P around the hair line (we won't even
discuss what's in my ears, yuck) and painful joints. I have been
using off-the-shelf cortisone cream and it helps as long as I use it
which I don't want to do.
My elbow hurts like hell, my tailbone (I tried to spell it but gave
up..I'm talking to ladies after all) hurts when I stand up BUT..I'm
not depressed, and as we have noted, my symptoms are very minor
compared to everyone else so I count my blessings. Besides, I'm here
in sunny San Diego so I don't have to deal with the cold anymore!!!!
Happy Holidays!
Jeff

Hi people,
I have had very minor psoriasis for most of my life, the ocasional
rough patch or face a little flaky, and have had arthritis in one
place or another for at least 15 years (I'm 48).
The arthritis goes from joint to joint, sometimes causing reduction
of
movement (like in my neck). Then, after a random ammount of time, it
goes away until it hits somewhere else. Usually, its asymtrical as
it
is now, only in my right elbow.
The pain is such that I can use 800mg of Motrin twice a day, but now
I
am on a prescription NSAID and it help...sort of. 400mg of Motrin is
still necessary on bad days.
With that said...reading what other people have gone through makes my
disease sound minor. Sure, a bit of depression or anxiety, nothing
that some St. John's Wort can't handle. My doctor wants to put me on
Methatrexate but I say no since it's so toxic. Besides, I'm a pilot
and can't afford to raise any red flags with the FAA. (These are the
guys who say that being depressed is OK, receiving treatment grounds
you)
I don't have fibromyalgia (at least I don't think so), I have no
problem sleeping (don't remember my head hitting the pillow), and
besides feeling like my elbow was run over by a truck (wonder where
it
will hit next), I seem to be in good shape.
I wonder if there is anyone else out there with semi-mild PA so we
can
exchange notes.
Cheers and Happy Holidays!!
Jeff

Hi Jeff,
I feel guilty sometimes when I read how bad a lot of the people on the
list have it. I complain a lot, hurt a lot (also from place to place and
always in the neck and low back/hip) have P which stays pretty limited to the
lower legs (really ugly) and minor spots on my scalp. Aside from a bad
initial flare that has had residual effects on my jaw, one toe and r
wrist/hand, I feel enormously fortunate! I have been on MTX for 2 years now,
currently tapering it and plan to go off entirely after the holidays.
Mentally feeling brighter already, and noticing that I have more energy than
in a long time.I started taking EPO (oil of evening primrose oil)
(1300mg/day) about 3 months ago and also have been using grapeseed oil after
bathing on the P, Both seem to be helping. BTW-- I noticed a very expensive
facial moisturizer out there (Lancome, I think) that had the first
ingrediant listed as grapeseed oil---ha!) It has tremendous antioxident
effects . My complexion has improved and the scalp line P spots have
disappeared, which is very unusual for me especially in the winter. The best
topical pain reliver I have found is called "stop pain" and that helps the
hands get through the work day.... as well as the NSAIDS, which I cannot seem
to go without for more than a day or two or the stiffness and pain grinds me
to a halt.
All in all, compared to a year ago, I feel greatfully great!
Nancy in cold and snowy Wisconsin
<< My PA sounds minor

Hi everybody.
For those of you who haven't seen my name before, I recently
subscribed to this group and I thinks it's great. I enjoy reading all
of your emails and seeing how you encourage each other. It's nice to
have support.
As I wrote in my first posting, I'm in quite a bit of pain most of
the time but the real killer for me is the lack of sleep. I used to
get by quite well on six to eight hours but now I get between ten and
fourteen hours a night and I still don't feel rested.
On Friday I found out that my exhaustion can be explained by the fact
that in addition to PA, I also have fibromyalgia. This is a fact that
my reumatologist has apparently known for a while but he didn't feel
it was necessary to share it with me. (Jerk!)
Anyway, I'm wondering if anyone knows whether it is common to have
both PA and fibromyalgia.
Also, my understanding is that the meds that I'm already taking for
PA are supposed to help with the FMS. Of course exercise is
recommended for people with FMS but a herniated disc prevents me from
do anything too rigorous. I plan to look into aqua-fitness and yoga.
If anyone wants to recommend any other types of non-strenuous
exercise, I'm open to suggestions.
Staying positive,
Gayle
PS. I recently saw a saying that I've decided to adopt as my new
motto. "Everything is okay in the end. If it's not okay, then it's
not the end."

hi,
after my biopsy, when i couldn't take mtx, and no other
meds out at the time, my dr put me on 10mg of prednisone.
it worked great, i really felt good, but as i'm sure a lot of
you know, i swelled up, i was ALWAYS hungry, and
i hated it. but it started getting my arthritis under control.
i took it for a year, then my dermatologist put me on
soriatane, and it helped my arthritis, but not my psoriasis,
so i quit taking prednisone. been doing great since. quit
taking soriatane in 1999. now i take aleve, and just started
back on epo for my finger swelling. nothing helps the psoriasis,
i use a liquid of zinc pyrthione/clobetesal and that helps,
but doesn't eliminate. i have it everywhere, but i have gotten
to where i just don't worry about it. i used to try to hide it,
especially in the summer at the pool. not anymore, people
usually kids, ask and i tell them.
i have a friend with fibro, who went to a chiropractor and
he really helped with the "pressure points" that hurt so bad.
it is snowing here this morning, while chicago got snow,
we got over an inch of rain then 60 mile an hour gusts last night.
it was scary. going to be a heck of a winter.
take care and stay warm.
susan in ohio

Probably spelled wrong.....but...this is the type of pa that I currently
have and have only had...........only in that
area...OUCH.......throbbing, stabbing pain alot like back
labor......comes and goes..........ususally responds to the old
anti-inflammatories.....sometimes something stronger is needed.......but
it is my hope, it will never go any where else.........it hasn't in
three years and this boggles my rd...says it should have already....
Jayne

I'm new to this site and not sure what mine doing so bear with me.I
have been on mTx.shots i take 1/2 cc once a week,and up till now I
have been doing good.My hushand past away in march 25,2000 and he was
my reason I was handing this.He talk me into short in the summer.He
kept me going and dealing with this.Today is a bad day 4 me I can't
move my finger and the pain is getting unbaerable,So I'm getting this
off my chest, I,m not trying to cry on people or feel sorry for myself
but today I just need to talk to someone who know.I'm 39 and I have
lived with psoriasis with 25 years and PA for 15. My psoriasis coves
75% of my boby right now,becaues winter in sitting in,I ty you people
for here me out,and I,m gald to find I'm not the only one
thank you (ty) so much
chris

I take mtx shots once a week1/2 cc.I have been doing good up till now
I lost my hushand in march 2000. so I have been really down he woudl
alway build me up.He talk me in to shorts in the summer.He help me to
deal with my psoriasis and PA. I believe its bad now caues I,m
letting it get the best of me.I just found this site and it nice to
know i'm not the only one out there with this. Hope to here form
anyone. chris

Hi! I have been sitting back and reading the groups messages, and it has
been very helpful to know that other people are experiencing some of the
same things. I know that it is hard for my fiancé and mother to always
understand the pain and everything that I go through. They are very
sympathetic but I know it actually is very hard on both of them to see me in
pain (so I try to hide a lot of it from at least my mom).
Most of my pain has been in my feet, and I just started having problems with
my hands, specifically a couple of my fingers. Which pushed me to go back
to a Rheumatolgist.
To make a long story short: Last spring I was put on Arava and took it for a
few months. I started doing okay, but I got engaged and both my fiancé and
I started talking about starting a family after we get married this January
I stopped taking all medications except ibuprofen and lived in misery but
thought it was worth the pain, until my hands caused me to really have some
difficult functioning in life.
When I saw the Rheumatolgist, she was shocked that my internal medicine
doctor would put me on Arava because of the amount of time it takes to get
it out of your system (2 years) being that I am 32 and have not had children
yet. (My Dr. told me not to get pregnant as it would cause birth defects,
she did not say anything about the 2 years in your body) When I return from
my honeymoon January, I will start on the Arava elimination protocol and
treatments so that it can be removed from my body. Has anyone out there had
to go through this process. My Rheumy has only had to do this one other
time for a patient that was losing her hair, and they only did a partial
elimination (enough that she stopped losing her hair) She has basically said
that it causes diarrhea and I have to take 13 treatments before they send my
blood into the pharmaceutical company.
The good thing about this whole thing, and I will admit I was rather bitter
that my hand was flaring a month before my wedding. (and started to do the
"Why me? again, can't I have one of my most important days in my life, pain
free? attitude) it forced me to take care of my PA. at least we found out
because we probably might not have been as careful about not getting
pregnant
after the wedding.
To get to my question: Has anyone out there gone through the elimination
process? Will you let me know how it went.
Lori in Arizona

Hi everyone,
I have been kind of quiet lately. I am still not doing very well. The
Remicade started working about five weeks ago- after the fourth infusion ( I
had one at week zero, week two, week six and week twelve). At week fourteen I
felt marked improvement. Unfortunately, at week sixteen it "wore off". The
doc told me that others are finding that the infusion wears off after four
weeks in a large amount of patients, so if they can get it approved, they
schedule you every four weeks instead of every six weeks. I am praying that
in the next few days, the Remicade starts working again. MY insurance
company is contemplating whether to cover me every four weeks or not. Say a
prayer for me if you can that this works out!
My psoriasis on my hands and feet is rebounding back, and is infected again,
so I called the derm and got a refill on the antibiotic and an appointment in
two weeks. That is the soonest he could inject again into the lesions. For
now, I am using Psorcon-E and Bactroban ointments. It hurts like the dickens
to walk on my heels and ball of the foot though. My left knee is trouble
again as well. I had fallen on it and damaged the knee cap and the cartilege
on the ends of both large bones while I was in Australia. Everytime I go to
physical therapy and begin doing the home exercises- even modified very
careful exercises- the swelling and pain come right back! I don't know what
to do. This makes the third time I have begun therapy and had this reaction.
I can't live with the knee this way, because functionally, it is impossible-
no stairs, instability, etc... I got one steroid injection in the knee last
week to see if that would keep the inflammation down during therapy- but that
obviously did not work. Nor has icing after exercises etc... Can it be that
surgery is the only hope? Has anyone else run into this problem- that
therapy aggravates the condition and makes it impossible to rehab the joint?
Michelle

Jeanne,

My Doctor explained my Sacroiliac problem as an inflammatory disease in the Sacroiliac joints, (Like Ankylosing Spondylitis) You might want to check out this link for a more detailed description.

http://www.spondylitis.org/html/psoriatic_what.htm

Becky -- Elko, NV

I'm 31, and have managed the
disease pretty well by following these guidelines, and taking Vioxx daily.
The only thing that REALLY bothers me right now are my feet. Everything
else is great - but my feet bother me so much, I'm actually considering a
DMARD. I'm going to see a specialist about this in a couple of weeks, but
I'd like to get a sense from some real people out there about what finally
pushed you over the edge to start taking a DMARD, and how old you were when
you started. I've also heard people say that Methotrexate, although
effective on controlling the overall symptoms of PA, had little effect on
their feet. Anyone out there with foot problems and solutions - I'd love
to hear from you!!!

Hi Kristin,

I think you will be interested to hear my experience with MTX. I am 34and have been it about 16 mos. I really resisted taking it at first but when my sed rate was in the 50's and I needed help sitting up in the morning, I knew it was time. Incidentally, my PA started in my feet about 2 years ago. It got to the point that I could barely walk and literally preferred to crawl around my house rather that stand on my feet. I became a virtual recluse. Anyway, it took a long time to get to whwere I felt well enough to go shopping or take a short walk, but I did eventually get there. I self-inject 22.5 mg of mtx weekly. i also take Vioxx, Folic Acid , Doxycycline and Darvocet for pain. My pain now is greatly reduced and usually I am fatigued and achy most of the day and only feel stiff and in pain in the evenings. I think that's because I take the Vioxx in the evening so as it wears off, I feel a little worse. I do have a life now and manage muc, much better since going
on MTX. If you have any other questions I can help you with, feel free to email personally.

Kelly in FL

Sarah,
Your emails were quite tame actually!!! especially considering how
upset you must be. I made the mistake of not only allowing myself to
slip into a deep depression... but worse... i stayed there for
years before I allowed anyone to help me. I love this group. Lucky
al of you... i am more comfortable complaining here than anywhere
else.
To everyone else, not including my dr's... I LIE
how ya feel, "ok", "good", "ya know", "alright", "rough
day/week/month/year" <- take your pick
This is the perfect forum for you. I can't take the guilt in having
my mother worry about me. My friends are either concerned or
clueless...
And PA is very tough to deal with both emotionally and physically.
I've found so at least. We all have PA here... we will all support
and pray and hope for you. Give you a place to complain. No one
here will think you crazy and you'd be suprised at how well we can
relate to each other's problems. For years i felt like an enigma.
Don't you love asking Dr's..... WHAT IS WRONG WITH ME???
I'm 29 and i've had PA for a looooong time. since i was like 10.
The P moves around but the A has gotten progressively worse. Thanks
to my mom and my first pediatric rheumatlogist, we've always treated
it aggressively. I can't imagine how bad i would or could be
without propper medical treatment.
When I was in school, like you are now.... i had a very tough time
with my health. I really had to make sigificant lifestyle changes
for the first time. The changes started in high school, bu t i
didn't "notice" them until college. Hard part is... everytime I
accept a change... i'm already being forced to make yet another
concession.
Educate yourself regarding this disease and all its aspects.
And another thing, write down your questions b4 you see the Dr, and
don;t go alone. I always get very nervous and upset when i see the
Dr. I get flustered and i always forgot to ask the q's i wanted to
ask. embarrasingly enough, my mother insisted on starting to come
also to ask her own questions.
And don't quit school. Please, you'll never forgive yourself. Go on
the 10 year plan if you have to. But some how, some way.... finish
it. Mind you this is coming from someone with a 1/2 completed
masters degree... someday I'll finish it. maybe even soon. i don't
know. i hope. I want to again... thats a step.
Never feel bad about venting here. ever.
You can be sure I'll be doing my fair share also.
I too need out of "this state of mind".
be well, Ari

hi,
first, linda, thanks for the recipe, i am going to try it,i am glad
you send it to our group by accident!
secondly, in answer to the question about supplemental
insurance to medicare. yes, it is available. once you are
on medicare, every fall you will receive a workbook about
the benefits, and it will include a section about insurance.
this year, as i told the group the other day, i chose
a plan thru anthem bcbs, that is inexpensive and has
good coverage. the workbook will list what county each
plan is available in. i chose mine in nov and it went into
effect 12/1. it doesn't matter the age, as long as you
are enrolled in a and b. my medicare started 6 months
after i was approved for disablility. i was approved in
nov, and i got my big backpay check jan 3 of the next
year. i think the review part is just formality. i was very
surprised how quickly the check came after it took so
very long to get approved. also if anyone has kids and
is on disability, the kids are eligible for benefits.
you have to sign them up, soc. sec. won't do it
automatically. hope this info helps.
susan in coollld ohio

Hi Ilene,

I was supposed to receive most of my back payments of SS disability on Nov. 1st. I still have not received it. The money was to be directly deposited, so you would expect no problems. WRONG!!!! Someone put the wrong routing number on the account. I worked for the bank for 13 years, so I could quote the routing number in my sleep. I know I gave them the correct number. It was sent to another bank in my city. I called on the 15th to check on it and the mistake was found and corrected. I was told that it would take 10 days or less to redeposit my money. I called again last Friday and it still hadn't been redeposited. They said it should be in my account in about 10 days. With luck, I may get it in time for Christmas next year.

Hope you have better luck than I did.

Allayne

I am SOOO sorry! Just realized that a recipe for a slowcooker list I belong to was sent to this list by mistake and posted. My apologies.

Linda

Poulsbo, WA.

Dear Sarah
Like you I have psoriatic arthritis, and I am in my twenties, and luckily my
PA is not as bad as many others on this list. Hopefully you will get other
replies as well, but I would like to pass on a few pieces of advice that
have worked for me. Your pain is presumably due to inflammation, so
therefore you are probably already taking anti-inflammatory drugs. But it is
worth considering your alternatives here and talking to your doctor(s).
Don't assume that if one drug doesn't work, none of them will. There are
many different non-steroidal anti-inflammatory drugs out there! I take 500mg
of Naprosyn twice a day when my joints flare up, and I have also found the
nimesulides to be very effective (e.g. Aulin). Reducing the pain will help
indirectly to reduce your anxiety and help you to sleep better.
You can also help your body to relax by cutting out all artificial
stimulants. If you haven't already done so, then switch from tea, coffee and
soft drinks to fruit juice and herbal tea. The more you can relax and
maintain a positive outlook, the better you will feel. You already say that
you suffer from stress, partly because of your studies, so certainly
caffeine is not a good idea.
Gentle movement of the affected joints will gradually reduce your pain - if
you have the possibility, talk to a physiotherapist and find out about some
exercises that you can do. If not, book in to a swimming pool and do some
gentle exercise in the pool. This will also reduce your stress and anxiety.
If you have a lot of pain in your extremities - feet and hands - the
judicious use of hot or cold baths can help to restore movement (heat) and
reduce inflammation (cold). If the pain is elsewhere, a hot bath with epsom
salts or Dead Sea mineral salts will help to relieve the pain.
As far as sleep is concerned, I would advise you to drink camomile or
whitethorn tea before going to bed, as it will help you to relax. Avoid
studying in the last hour before going to bed and just listen to some music
or watch TV - an over-active brain will take longer to switch off!
As far as your energy levels are concerned, I have found that diet changes
are the only thing that will make a real difference, and a correct diet will
also help the PA. As you are in the middle of studying you should probably
avoid making dramatic changes, but start by cutting out or reducing foods
like chocolate, that contain lots of refined sugar, white bread (refined
flour etc.) and try to reduce your consumption of red meat and alcohol.
Replace these foods with extra fruit and vegetables, nuts, seafood and
pulses. If you are feeling down in the dumps, St. John's Wort extract is a
natural, mild anti-depressant. When I have been studying, I have found that
it helps my concentration also. It is sold over the counter here (Italy) in
liquid form, produced by a Swiss firm.
The above has helped me to manage my PA quite effectively. It is important
to find a way of 'fighting back'! The worst thing is to let yourself slip
into a depression. But don't forget that there are systemic treatments with
a good track record, so search the archives of this discussion group and you
will find out that many people have had a very positive experience with
methotrexate, for example.
Good luck,
Jonathan

Jim,
As my Rheumy explained it to me, the injection gives slightly less
abdominal symptoms as you are by-passing the digestive track (Don't
believe it). Injection also tends to be more "efficient" for the same
reason, therefore, a lower dose with the same effectiveness may be
possible. Assumming your liver enzyme studies remain normal, you do not
need a liver biopsy until you have reached a certain level of the SUM OF
TOTAL medication taken. I should have listened to the amount of total
meds more closely (I think it was 1 gram but don't hold me to that), but
when he said liver biopsy, my brain shut down. In any event, if the
dosage can be lower with injection, you can put off the liver biopsy for
an extra year. I went from 15mg oral to 10 mg injectible with no change
in effectiveness but also no great change in symptoms from the
medication. Hope that helps.
Barry

This is how I do my whole chickens in my large oval CP. Would not do one any other way now. Always turns out juicy, tender and no grease. Season any way you like for whatever flavor you desire. I use a lot of paprika just to add color to the skin. Good luck.

Linda

Poulsbo, WA.

Baked Slow Cooker Chicken (this recipe sounds really, really weird
but it turned out beautifully)
1 (2-3 lb) Whole Chicken, cut into pieces
Salt and Pepper to taste
1 tsp Paprika
Wad up three pieces of aluminum foil into fist-sized pieces and place
them in the bottom of the crockpot. Rinse the chicken and pat dry
with paper towels.
Season and place on top of foil. Set crockpot to high for 1 hr then
turn down to low for 8-10 hrs. This turns out just like roasted
chicken. The foil keeps it from cooking in its own juices, and the
chicken browns just like you roasted it in the oven. Next time, I'm
going to put some onion beneath the foil so that maybe that will
spice up the chicken a smidge.
Hope y'all like!
Angie
Baked Slow Cooker Chicken (this recipe sounds really, really weird
but it turned out beautifully)
1 (2-3 lb) Whole Chicken, cut into pieces
Salt and Pepper to taste
1 tsp Paprika
Wad up three pieces of aluminum foil into fist-sized pieces and place
them in the bottom of the crockpot. Rinse the chicken and pat dry
with paper towels.
Season and place on top of foil. Set crockpot to high for 1 hr then
turn down to low for 8-10 hrs. This turns out just like roasted
chicken. The foil keeps it from cooking in its own juices, and the
chicken browns just like you roasted it in the oven. Next time, I'm
going to put some onion beneath the foil so that maybe that will
spice up the chicken a smidge.
Hope y'all like!
Angie

hi,
for those who have no experience with trying to get
disability, be patient. check the fine print too. when i
finally gave up the fight and quit work, i went straight
to apply for ssi. i was denied and i appealed and was
denied again. they said i wasn't sick enough for
disability. it wasn't until i got a lawyer that i found out
that you have to actually be off work for, i think, a year
before you qualify for ssi. the time period may be
different, i haven't looked at my paper for a while.
that was so frustrating because i might not have needed
a lawyer if i had known to wait. it is a fight to the death,
because social security does not believe we are truly
disabled, and will be stay disabled. even a rheumy i
saw doesn't believe in it.
stay patient and don't get frustrated.
susan in ohio

Before my current Rheumatologist wrote my first prescription for MTX,
she surprised me by asking me if I wanted "injection" or "oral"
doses. She said it didn't really matter medically and was only the
preference of the patient, (unless the oral doses were intolerable).
Anyway, I chose the oral dose so I wouldn't have to mess with the
needles.
Even with my current dosage of 17.5 I haven't had any real problems
with the pills, but I've always wondered if maybe there aren't some
"hidden" advantages to the injections. Maybe some "long-term"
advantages to the body, especially the digestive tract.
I've searched and searched but can't find anything on the subject. Is
there anyone on the list who's read or heard anything on this topic.
Speculation is fine.
Jim

Hi, I am about to start self injections for Mtx and a
wee nervous. Does anyone have any advice for where to
do it? My Dr suggested the fat of the stomach? Any
other advice to make this a less frightful event?
Is there anything I need to be careful of? My Dr went
over it like it was no biggie but I am pretty scared
of hurting myself or something.
Judy

Theresa,
I get these pains all the time. I call it my lightening pain, because it
hits so hard and then as quick as it comes it goes again. I consider it the
hardest pain to live with. All the other aches and pains I have gotten used
to.
I wanted to thank everyone for their input on the twitching nerves. It
probably is most likely due to lack of rest. Seems it's getting harder and
harder to sleep. (you have all eased my mind a little)
Shelly
in St. Louis, MO

Important for all Enbrel Users:
Hi all -- Immunex, the makers of Enbrel, are asking
that people register as a condition of receiving the
medication in the new year. There may well be
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Below I have copied a section from their page
--including the URL -- that offers more information,
as well as the phone number to call in order to begin
the registration process. NOTE: Calling the number
and providing the information takes about ten minutes,
but does not itself comprise registration. One must
give them the info they ask for, and the company will
send a packeage for the patient to fill out and
return. One is not registered until that package is
returned!
Please do not write me asking for more information --
I have just exhausted my knowledge on the subject!
Robert Harris, North Jersey Highlands
raharris@...
===== http://www.enbrelenrollment.com/default.asp
=====
To register, call the toll-free Patient Support Line
for ENBREL:
1-888-4ENBREL (1-888-436-2735), 24 hours a day, 7 days
a week.
Starting January 1, 2001, you will need an ENBREL
Enrollment Card in order for your pharmacist to refill
your prescription for ENBREL. You'll simply show your
Enrollment card or provide your Enrollment card number
to your pharmacist. The pharmacist will then order
ENBREL to fill your prescription. (Click here if you
receive your ENBREL by mail and not at a pharmacy.)
Why was the Enrollment program created? To help ensure
that you and others on ENBREL continue to receive an
uninterrupted supply of ENBREL.
Since its introduction 2 years ago, doctors have
increasingly prescribed ENBREL and demand continues to
grow at a rapid pace.
Immunex and Wyeth-Ayerst have committed substantial
resources to support this growing demand. ENBREL,
however, is a highly complex medicine to manufacture,
and new production facilities must be built before we
can increase supply significantly. These facilities
are already under construction. Until they are
completed, it is likely that future supplies of ENBREL
may be temporarily limited.
The objective of the ENBREL Enrollment Program is to
help ensure that current ENBREL patients receive an
uninterrupted supply of ENBREL. The only way to help
ensure that your therapy with ENBREL is not
interrupted is to enroll in the Enrollment program. If
you do not enroll, you will not be able to receive
ENBREL beginning January 1, 2001.
This program will allow us to identify and accurately
count the number of ENBREL users so that we can
reserve a place for each of you.
Important: Please do not confuse the ENBREL
Enrollment Program with the EnlivenTM Support Program;
they are separate, unrelated programs. Even if you are
a member of Enliven, you must register with the
Enrollment program in order to receive your ENBREL
Enrollment Card.
How to Get Your Enrollment Card
To register, call the toll-free Patient Support Line
for ENBREL:
1-888-4ENBREL (1-888-436-2735) 24 hours a day, 7 days
a week
After you return the form, we will send you a
confirmation letter and your personalized Enrollment
card.
====================================================

Don't be too freaked out about the drugs. Most people don't suffer any major
side effects from MTX. I remember having a bit of a crook gut the first few
times, but nothing since (18mths). It has done wonders for me. Read up on
the side effects of MTX, but remember most don't get them and you only need
worry if you do. There are some long term serious side effects to long term
pred use, and they are common. Voltarin can have serious side effects but
with MTX you will be able to cut back on them. I'm down to one a day (from
six, twice the rec dose, at the worst of my PA).
Your GP didn't do you any favours.
Paul.

Swollen fingers and stiff wrists. I've had many cortisone shots in both and boy do those finger shots hurt!. I wait until the pain's so bad that I don't care about the shot. My doctor said this was o.k as long as I didn't have more than 4 shots in the same joint in one year. I haven't past 2 shots yet.

Anyone ever hear of this guy "Nutritional Warrior?" I am in the NY
area (where he is based) and I am considering going to one of his
lectures. Supposedly he offers insights into healing arthritis from
more natural means (I saw a show where he said he used to suffer from
psoriatic arthritis). I too try to deal with the condition from
natural means, but take drugs when I have to (which is rare nowadays,
thankfully!). Anyone hear him speak?
Please email me at: cayce@...

First I would like to thank those who have responded to my Hard Data?
post (#10618). For those of you who replied with inquiries I ask that
you please be patient and I will get back to you (soon) as time allows.
Actually this is rather appropriate because it will require a lot of
patience to implement some of the ideas I proposed in that post.
Follow-ups are forthcoming.
The response to this post was basically all positive. This seemed a
bit surprising, especially after it was brought to my attention that
there was a rather intense, and emotional, exchange regarding issues of
an appropriate level of sharing just a few weeks before I joined this
group. Its not that I expected a lot of flames, but anytime you even
hint at censorship or control (especially in the good ol US of A) it
tends to open a can of worms.
I recently wrote a note to a friend and have decided to share part of
it with this group. I guess you can consider this my formal
introduction. I hope this will shed some light on some of the
questions posed to me that I have not directly answered (yet).
As always: You decide if the quality of the content is worth the
quantity. (i.e. Take what you like and leave the rest.)
* * * * * * * * * * * * *
I figured Listservers, listservs, newsgroups, and message boards were
all the same things. Ive been up to my eyeballs in dealing with the
Psoriatic Arthritis board at eGroups that I recently discovered. This
(www.egroups.com) is a really slick FREE service and I highly recommend
you check it out. Along with having a normal e-mail subscription list
with searchable archives, each group can have: A shareable files
area. A database table creation area (searchable). Area to create
Polls. A web link page (that allows folder creation so you can
separate by category). A calendar. A chat room. And maybe a few
other features I cant remember now. All this is web based and,
depending on the list owners choices, input is allowed to all these
areas by every member of the group! (Too Cool!) Apparently you can
import archives from existing traditional newsgroups as well. Not a
bad deal for the price <smile
I dont think Ive effectively apprised you of my current situation but
here goes a try:
My health is OK but my HMO sucks. Not enough $ available to afford
better. I spend most of my time on swimming and doing research on
the web. My life seems to be a big catch-22 right now. The main
issues are time, money, personal energy level, and health (i.e.
reducing the amount of damage to my body, which basically translates to
a fear based existence).
Some of the research is related to health, some effort is for
starting a home based business, some is goofing off. Goofing off is
not really how I see it, but that is probably what it amounts to
because I REALLY need to get my own income going and that area of
development is painfully in need of attention. What it generally
amounts to is that I have been fascinated by the education process
lately and since my time is rather freeform Ive just been following my
nose towards whatever interests me. (Unfortunately I have not found
anything of interest that also PAYS! <ROTFL
supporting me for over a year and that situation does not come without
a price of stress. Im convinced that stress is the #1 factor of my
illness.
I know I do not have the energy to work fulltime AND maintain the level
of self-care I currently give to myself. I live in a very rural area
in a rather depressed economic area. Ive looked briefly into SSA
disability and Im betting my condition is not bad enough to qualify,
and I know that I do not want to go through the aggravation of applying
for it now. Meanwhile my finances are razor sharp.
Before moving back home (I had to go SOMEWHERE to get away from the
frigid Mid-West), I strongly considered an urban area that had robust
employment capabilities for my professional skills. The catch there
was that I almost certainly would have had to work fulltime, which most
likely would detract from my self-care program. (Thus we come full
circle back the fear issues.)
My self-care program does not really involve my HMO. The Docs keep
the bulk of my illness under modest control with drug therapy, but the
care from the clinical professionals I see through my insurance
pretty much stops there. I used to get extras, like massages, out of
my own pocket when I was making good money, but that has not happened
for a while. My pool/club membership is the limit for my extras for
now.
Were it not for the discipline that I adhere to in swimming 1,800yds
5x/wk I think I would totally derail right now. If you factor in my
illness, I think I am in better shape now than I ever have been. (And
that says a LOT. I was quite the stud-muffin in my carpenter days
<grin
helpful. And my diet is going well too. It seems I always eat better
when Im poor because I cant afford all the junk food (processed,
restaurant, etc.)<GRIN
I recently decided to re-up with US Masters Swimming and in that
process discovered there is a meet nearby in just a few weeks. This
may be my only shot for a year to have an event like this so close by
so I think I am probably going to participate. I defiantly have to
step outside my comfort zone to do so however, especially on such
notice, but I have found that if I do NOT venture out of my comfort
zone occasionally, then I dont typically experience any real growth.
So what it boils down to is that it is all a big puzzle. (But thats
life so whats new eh?) As I slowly improve my Mental, Physical, and
Spiritual self however, this puzzle seems more solvable, more often.
As usual, despite the situation, I seem to be delivered what I need at
the time I need it. As you obviously know, there is a certain amount
of comfort gained by being amongst folks who share similar thoughts,
feelings, and yes, fears. The PA support group I recently stumbled
upon bears an uncanny resemblance to my Al-Anon ACOA days. And Im
pleased to say that the tools and skills I developed in Al-Anon are
coming in very handily (as I dredge them up <smile
be amazed at the apparent plan my life follows, despite the
difficulties and obstacles it presents. As they say in Arabia: It is
written!
Nameste,
Conradical

Nancy, I have some experience with thyroid issues, drugs and
arthritis. I was diagnosed with PA about 18 years ago at the ripe
age of 10-11 when my fingers started to swell. I've had the P for as
long as I can remember. i currently take synthroid, celebrex, MTX,
zantac, tylenol and on occasion xanax. Until recently I was also
taking alternating between flexeril and valium for my back and I just
took myself off prozac a few weeks ago.
While a senior in college, I was diagnosed with Graves disease. My
thyroxin levels were like 200 times the high limit on the chart. I
had no appetite at all and lost a ridiculous amount of weight, i'm
talking about 40 lbs or so) i almost completely stopped sleeping and
I had a resting heart rate of 120. Lets not even get into what it
did to me psychologically. i can only say for sure that i'm
currently sane because I've been on the other side of the fence!!! I
lost most of my friends that year. or should i say, I got rid of
them. i was a much different person for those few months.
AND OH OH OH.... i had the worst heartburn ever for the first time
in my life, and having been a smoker at the time (i finally quit 5
years ago), I was convinced i was dying of lung cancer. I was sure
of it. That was the only conclusion i could come to with all that
was going wrong. I refused to go home for months. I almost missed
my own grandma's funeral which happened to have been on my 22nd b'day
because I refused to answer the phone for weeks on end.
Point is, your problems with PA and your thyroid are both autoimmune
problems with triggers or problems in the genes. I was actually just
told (i'll get more info) that 91% of people with graves disease had
a parent with it also. I was adopted so i can't contribute further
here.
Environment may help trigger these things, but there is something in
the genes that at the very least allows it to happen. "They" still
arent sure. i just read this week that a new study showed that
coffee drinkers were 4 times as likely to develop rheumatoid
arthritis. But i cant believe that being 30lbs overweight caused
your PA or your thyroid to go nuts. The medical community just
realized the autoimmune connection a few years ago. I can avow that
a flare up in my PA is usually a harbinger of things to come.
It seems like my "whole system" goes nuts at once.
good luck & be well,
Ari in ny

hi my name is rosemary
i'm new to this group. i have had p for many years but have recently been
diagnosed with pa. i am currently taking vioxx and methotrexate. my doc in
addition wants to start me on enbrel ( a self injection every 2 weeks. ) can
anyone tell me if they have a similar situation. or have had any experience
with enbrel.
worried in ny
ro

Hi everyone,
I would be really grateful for any input on this. I've been on MTX for
2 years now--- along with folic acid , oruvail, synthroid, also EPO . This
all seemed to start about 15 years ago when I developed hyperthyroidism. I
spent the better part of a year on meds to reduce thyroid levels, was ok for
another year, and then the thyroid completely stopped functioning---enter
synthroid. I developed P about 6 yrs ago, along with a couple bad spells
with my neck and low back. Then 2 1/2 yrs ago, started flaring in my srist,
hip and toe. That's when the PA was diagnosed. Up till the last few months,
I have always had pretty low BP---never higher than 110/60. Also, I never
had significantly high lipid levels. TILL NOW.... Last winter I tried VIOXX
for about 6 months and it worked really well for the pain, but I noticed my
BP was slowly on the rise. I have a really bad family hx for CAD, so my RD
put me back on oruvail.
I am 52, admittedly overweight by 30# or so, and now struggling with
hypertension and hyperlipidemia (chol= 270 and triglycerides and LDL really
high. I have been trying really hard to get it down with diet. Walking is
really my only exercise as everything else seems to flare the PA. It is
now time to add to more meds to the "chemical stew" in my body. I am
starting to have "liver nightmares" like the old Monty Python movies ("I've
come for your liver")
My question is--- is this just the result of bad genes and excess weight,
OR, has anyone else had similar responses to any of the wonder meds???????
I really am working overtime trying to keep a positive attitude right now
and am starting to feel pharmaceutical phobic....... I could just stop
eating and lay all the pills on a plate and call it breakfast!!!!!!
Nancy in (snowing) Wisconsin

I have an appointment tomorrow with a "Certified Natural Health
Professional" I had found her in a small community newspaper called "The
Bright Side" and had her advertisment sitting on the table for several
weeks. Just Tuesday I decided to call.....She was not in the office so I
left her a message.....The next day she called me back and left me a
message....I did not have time to call back until later that day when I was
at work....I left her a message again and within minutes she called me...She
said, "Are you calling about the flyer I left yesterday at your office?"
No, I answered, I was not aware you were at my office yesterday... I was not
here and I called you from home.
To make a long story short it seems that while I was trying to call her on
Tuesday she was out delivering pamphlets about her service and one of the
places she stopped was the church where I work. She was trying to reach me
as I was trying to reach her....even though we had never met and she did not
even know yet that I existed..... I hope this is a good bit of karma and
that it bodes well for my visit.
Has anyone out there ever worked with a natural health professional? What
will happen tomorrow is that we will spend two or three hours going over my
history, diet, health problems, etc. Then we will work on tools and
strategies to increase my health and energy without drugs....I have already
started with EPO but hope for more guidance....
Please share any experiences you may have had along this line!
Thanks
Grace and Peace,
Ada
Nostalgia isn't what it used to be.

"the dr said stress causes his,
which they do, but also i think excessive sugar does too.
he always seems to get one at easter and halloween
and sometimes christmas. those are the only times the
boys are allowed to od on candy. "

Did it ever occur to you that it could simply be the stress/excitement of the holidays themselves and NOT sugar? Or the stress/excitement of getting to finally eat the sugar!! HA!

Linda

Poulsbo, WA.

I'm so tired today. I'm tired of being tired I woke up tired today,
and even after a nap I'm still tired. I tried to do laundry today
and my arms were too tired to hang up the clothes on the hanger. The
house is a wreck and it bugs me but I'm too tired to do anything
about it. The sun isn't out today and that doesn't help improve my
energy level. I am greatful that my husband is understanding, but I
feel that I let him down, that I don't do enough. I wish that I
would finally get pregnant so I would start to feel better. I miss
feeling good, like a whole person. I'm tired of hurting all the time
and not being able to move. I'm just so tired.
Denise
Tempe, AZ.

Something I found at the http://arthritis.about.com
site -- Robert, North Jersey Highlands
SMOKING DOUBLES RISK OF SEVERE ARTHRITIS
New research, presented at this year's American
College of Rheumatology
Scientific Meeting, confirms a connection between
smoking and an increased risk of
rheumatoid arthritis.
http://arthritis.about.com/library/weekly/aa111100a.htm

hi, i also have nail separation. every dermatologist i
have seen has told me that it can't be corrected.
before i took mtx my nails curved almost straight up.
mtx helped bring them down. i have also recommended
to you all soriatane, a psoriasis medicine that worked
miracles on my arthritis, but not on my psoriasis.
i will say that it did help my nails, i couldn't stay on it
long enough to tell you that they are normal. however,
they are almost normal. my pinkie nails, which the fingers
are screwed up, are still curved, but the others alternate
from normal to just a little separation. if anyone wants
more info let me know.
susan in ohio

Anyone have an experience with Sulfasalazine? Also sold as
Azulfidine. Anyone been on cyclosporine (Neoral)??? Would like to
hear feedback! Thanks, LaRita

Hi, not sure if I asked this one already and couldnt
find in the archives so here goes......
Is it ok to take colds mds (like tylenol cold) when
you havea cold and sore throat?
TIA
Judy
Moderator note: I didn't have a problem taking Tylenol-related cold meds. I
didn't combine cold meds containing aspirin or ibuprofin (sp?) with my
anti-inflammatories, however. I'd put a call into your RD to find out if he/she
has any recommendations for what to take when you have a cold.
Patty PHDRWD@...

Hi all. I saw 2 messages responding to my inquiry about Arava experience.
Hasn't anyone else been on this?
They were both on the negative side; which is good to know about, but I was
also wondering if anybody had anything positive to say about this drug.
thanks
April

Hi Ari,

We are glad that you found us, too. We all understand the feelings of frustration that you have. I, also, would like to be able to do the normal day to day things that I took for granted before this hit. It does make us appreciate any good days that we have.

Allayne

hi,
my fingers and sometimes toes will swell. right now
my ring finger on my right hand has been swollen
for a month or so. it is now going down and getting
back to normal. my first finger on my left hand has been
swollen for a week. it was very bad the first few days.
i don't take any meds right now, so i find that if i massage
the finger and keep working it, i get some relief. the left
finger is almost ok. when i first got sick, my little fingers
swelled, but i had so much pain everywhere else i didn't
pay attention. my left pinkie is now locked stiff, it doesn't
bend at all, my right pinkie is locked at the top joint, and
fights bending at the bottom joint. they look awful, but
i have no desire to consider how(or if) they could be
corrected. i hope you can get some relief, i have
never gone to the dr about my fingers. i have gotten to
where i don't even think about going unless i have
a "real" illness, because i feel like a whiner if i go
for every ache and pain. also i haven't had much luck
with most of the arthritis meds. either they don' t work
or i'm allergic, or they screw up my liver.
i have to say, one advantage(?) to having pa is that
my boys have had to learn to be responsible around the
house. i had always planned to teach them to cook, clean
laundry,etc. but now they understand why it is important
for them to do it. if it weren't for my husband when i was
at my worst, we never would have made it. he kept us
together. i hope all of you have spouses or mates who
are as supportive as my husband. it makes all the difference
in the world.
have a good weekend.
susan in ohio

Hi everyone, thanks for the post regarding drinking
occass and taking mtx. The messages were loud and
clear-DONT DO IT! It is not worth the risk. I am such
a fan of good wine and beer that it is such a big
bummer, but I totally love my liver more!!
Does anyone know if it is ok to drink non aloholic
beer and wine? Anyone know of any good brands?
TIA (Thanks in Advance)
Judy

I'm new to this list, but I'm not new to PA. I don't remember ever
not having psoriaris and my arthritis first revealed itself in my
fingers when I was 10 or 11ish. Since then, the arthritis has
progressively gotten worse. I have daily pain and/or stiffness in my
fingers, neck and spine, wrists, elbows, shoulders, knees, ankles,
hips, toes and various points in my feet.
I also have Graves disease and sjorgens.
My health, or lack thereof is always on my mind.
My health has taken away almost everything I once enjoyed doing.
I was a gifted athlete in my youth. Despite my arthritis I was a 10
time state champion in karate and a member of the United States
team. I also played soccer and baseball.
Now I'm 29 years old and I have a hard time making it to my seat at a
mets game.
I'm terrified of what i won't be able to do tomorrow... or
when i'll next find myself hospitalized.
How do you make plans when you never know how much pain you're going
to be in... how fatigued you'll be.... what kind of mood you're
going to be in... will you be able to walk that day? Will you be
able to tolerate people that day? Will you even feel well enough to
eat? Can you at least try to look healthy that day?
will you have to answer that dreaded question? "How ya been feeling
lately?" Do you lie? Decline to answer? Or complain? I may be in
need of support, but I can't stomach sympathy. People used to ask
about my karate or what girl(s) I was seeing that month. Now
everyone wants to know how I feel.
And... how can I forget, I stutter... My first word was m-m-m-maaaa.
I've always been a fighter. I'm trying to find a way to get the fire
back. I want to be me again. I need to be again.
Especially since my thyroid problems, I can't tolerate most people.
Based on what I've read in here thus far however; it seems I've
finally found a forum where people can truly relate to what I
endure. I've read many brave stories in here. I just want to feel
brave again.

Today I had the joy of yet another throat culture..and it was
positive...what a surprise. I have to say that strep throat has
something to do with pa...because I seem to get it all the
time...............................here we go
again...........................
Jayne

In a message dated 11/10/00 4:28:17 AM Central Standard Time,
PsoriaticArthritis@egroups.com writes:

I am one of the people who have very little P but have PA in many joints.
The NPF newsletter arrived the other day. In it was an article about
different types of P. I have separated nails but only about 10 pimple size
spots of P on my body. Before being diagnosed with PA I had only about 2
of
those spots and didn't have a clue they were anything more than dry skin.
Now, I have a few more and they are silver or gray and rough textured.
My question is:
Since I appear to be in the beginning stages of developing P, is there
anything I could do now? And does P develop slowly like this? Is there a
cream or special lotion that may help to delay the development? Any other
advice?
Thanks,
Jeanne In Idaho

Jeanne,
I, like you, have PA but very little P other than the separated nails.
Your post sounds like you're assuming that your P is going to get worse. I
don't think that's necessarily true, is it? Input from others?
Dwanna

.. Does anybody know who made up this stupid "electoral vote"
system?
Some guy named Thomas Jefferson. I think two guys named Adams helped
him. It was so long ago and you know how your memory gets with PA. I do
remember being there, however :-)
Barry

Hi Guys, I started Mtx three weeks ago andhave been
pretty lucky with minimal side effects. Today I have a
raging burning feeling and have a low grade fever
95.5. The stomach pain comes and goes every 10 minutes
or so and is really uncomfy. Would it be common to not
have the side effects for the first three weeks then
Whamo! ?
Judy

Does anyone have this problem?? I have had 'involvement' in my shoulder for years and so lots of pain there. Now I find that my coat hurts my shoulders if I wear it too long! (especially driving). Apparently it is too heavy, and I really wanted to get a leather car coat, but that would probably be waaay too heavy. Any advice?

Right now they say that they temporarily took the decision away from
bush.... But I believe he will get the electoral vote, Even though gore will
win the popular vote... (The vote that all of us in america combined make)
It just drives me nuts that this stupid nation goes by this "electoral vote"
crap. where when a candidate wins a certain state , those electoral votes
will go to him.. And it varies with each state... Why doesnt the president
get elected by the majority vote? It makes me feel like never voting again
because if I would of known this before, I wouldnt of voted... Everybody
already knew that gore was going to win new jersey... I wouldnt of even
bothered..... Does anybody know who made up this stupid "electoral vote"
system?
Newjersey the Electrol vote is to protect the States and the people. How would
you like it if no one ever even bothered to ask for your vote because your State
didn't matter because there were not enough people living there. It goes back to
wanting representation and not just taxation. Also, it used to to take days and
weeks to gather the information. We might be voting via the Internet in the near
future. 345 military voted using the Internet with a pilot program and it used a
variety of States of which Florida was one. PatB