One year with PA any more surprises I should expect?

[atmkd]

It all started over a year ago with these little blisters that suddenly appeared on my right index finger then my left index finger. Then next finger on r hand and l hand. Then my fingernails started lifting off the affected fingers Very painful!! Numerous doctor trips then to derms, several of them all with a different diagnosis. "Fingernail fungus" , "It is not Psoriasis"******etc..

Fingernails started pitting bad skin blistering off fingers very painful. Treated for fingernail fungus. Bam major case of pink eye in left eye, eye doctor, pink eye drops ieeeeeee.... Back to derm refered to Mayo Clinic dermatology what a joke! Biopsies, "You have a wart growing under your fingernail", WHAT? how come the other three nails are lifting off? Don't know could be warts? WHAT?

Right elbow starts hurting, left foot, now I have a sore on right foot that will not go away.

I begin researching internet~ SELF DIAGNOSIS~ PA~

Made appointment with rheumy, CONFIRMED~PA~

Started on MTX and Sulfasalizne, wound up in ICU from Stevens Johnson Syndrome from newly aquired Sulfa drug allergy.

Stay on MTX, fingernails returning to normal. Put on Plaquenil, now I'm allergic to that.

Good grief now my left achilles tendon feels like it is going to explode, back to rheumy, oh yes, that is another symptom tendonitis and bursitis.

IS THERE ANYTHING ELSE? can I expect an appendage to fall off or something?

At least so far I'm tolerating the MTX.

[Ihurt]

It was man years before I was proprerly diagnosed.

Only one toenail is completely pitted, other nailsthick and ridged, but the blisters are on the fingers, and now the bottom of the foot. Achilles is killing me today, and it's hard to put the front (under the toes) doen on the floor.

What can you expect? It;s hard to say. Each of us is very different, and our symptoms vary. For me it depends on my stress level most times. Especially if that stress is emotional-the flare can be intense and involve every joint I own! The skin just seems to want to follow suit. There have been times that the fatigue and pain overwhelmed me so much that I had to sleep constantly just to check out of life for a while-take my pain meds and close down. Then there have been other times mostly in warmer weather when Im completely calm that I can still function like I used to, and the pain is at a minimum.

In any event, the pain in constant and always there, but the levels vary. Most times I try to ignore it because there's not much other than living on pain meds that going to take it away.
This disease is not yet curable, but it can be treated, and we have to keep at it. I've made many lifestyle changes in order to dealwith it.

Your limbs are not going to fall off, but some people with severe destruction from PA have had reconstructive surgeries.

Stick with it, you've come to the right place. Many people here deal with this everyday, and with muh sucess so I don't want you think all is lost. We can still lead a productive life, just with a little bit more of a challenge. Good luck with the MXT-Im still on it two years later, and it is helping me.

Elaine

[luvwinnie]

I now expect the unexpected! You just never know what will happen next. Best of luck to you!

[RichJ]

hi atmkd,
sorry i can't help much but welcome to the pfamily. you will find alot of great info and find alot of wonderful people on here. welcome and nice to meet you.

have a good night all

richard

[tmartha]

Hello - sorry to hear about your troubles with pa and complications from drugs. I've had it for a year also and tho' my pains have been different than yours, they 'roam', also. (Newest one, wrist and fingers pain from enthesitis - tendon complication) Seems that's one constant with pa, it's always changing. :( But my hips and shoulders which were SO bad for months are now much better. :)

But I'm glad to hear you've tolerated the Mtx so far - I'm only 2 weeks along on it myself - when did you start it? There's a thread started where some of us newer users of Mtx are posting our experiences so far (I hope people stop back there in the next week again!). It's a thread in the 'Psoriasis' forum, actually, titled "methotrexate" started by jwbigg.

Keep us posted - I'm sure you'll find as I have that this is a very helpful place for info and understanding. Plus a guffaw or two now and then.
Tani

[atmkd]

I do know one thing, when I was in the hospital in ICU from the Stevens Johnson Syndrome the IVIG immunoglobulin treatment I received completely removed "ALL the PSORIASIS" from my body. It also stopped the Stevens Johnson Syndrome completely. The doctors were amazed at the results. My psoriasis stayed in remission for about 4 months afterward.

One major leauge drawback COST $65 a gram. My IVIG bill for 5 days 24hr intense IV therapy was $150,000.00

Thank God for insurance and catastrophic coverage. My deductible will be $3000 on a $180,000 hospital stay.

I am currently taking a colostrum supplement that is a bovine immunoglobulin derivative, it appears to be helping the psoriasis.

[JesseLou]

You have one of the most impressive histories I've ever read here, so I doubt you'll find anyone with worse luck with this disease. Since all that is behind you, that's good news, right?

I'd have to agree with the statement that you have to expect the unexpected and blame everything that happens to you on your PA. That way you'll get treated before whatever it is gets really bad.

Welcome to the Board!

P.S. I have never read a post here from a researcher, but your experience with immunoglubin is interesting. There is someone who is studying the idea of bone marrow transplant for autoimmune disease treatment. In order to do that though, you have to be willing to kill your immune system with chemo first, and nothing that has happened to me so far is bad enough for that.

Have you ever heard the saying "So sick I thought I'd die, but afraid I wouldn't"? You might wish a body part would just fall off now and then, but it won't.

[quickcobra2003]

After having had p 25 years or so up to 40% coverage pa showed up in the summer of 2002 with a sore big toe. In 18 months I was bedridden, my career and life were in a shambles. First Mtx then Enbrel have helped medically to get my life back in some order. The life lessons I have learned.

1. Laugh
2. Cry if you need to
3. Laugh
4. Help someone else
5. Laugh
6. Love your family more, we are all imperfect
7. Laugh
8. Change your life to reduce the stress
9. Laugh
10. Know you are not alone, bad things do happen to good people
11. Laugh
12. Lean on your friends they can help sometimes when no one else can

Your arms and legs will not fall off, we just are not that lucky :-)

[SandraJean]

quickcobra,

I liked reading your lists! Very good!

Sandy

[quickcobra2003]

quickcobra,

I liked reading your lists! Very good!

Sandy

Thanks Sandy!