Questions: PP and PA in the long-term

[JesseLou]

Will I be in a wheelchair in 20 years?

Will aggressive therapy early in the disease + exercise keep me on my feet?

Will I get cancer because of the drugs I'm taking?

What will happen the next time I get a 3 week flu from my young niece and nephew? Can I afford to spend 2 weeks with them in May?

Will my body just wear out from all of this 10 or 20 years earlier than it would have without the disease and the drugs?

I am an artist. I am 53, diagnosed with PP last fall, and with PA in January, although I now realize I've had psoriasis (individual pustules and probably guttate on my toes) come and go for 23 years, and PA for maybe 4 years. I'm doing paint PUVA for my hand (I have it only on 1/4 of my right palm) because it was completely untouched by everything else, and for the PA I take MTX injections (on my 7th week), plaquenil (my rheumy says 2 drugs work better than 1), and vioxx. I also do weight training 3x a week, and though I'm not skinny, I'm okay for my age and height.

I still have the patch of PP on my hand, though it's livable now - it wasn't before. I'm still having some joint symptoms - I've tried giving up the vioxx, without success, and I have early signs of "frozen shoulder", morning pain in my feet, and my knees swell up if I go without a work-out more than 2 days.

I spent the first month of my drug regimen depressed and generally feeling sorry for myself. Now I just worry about what my future will look like...

I realize no one can predict what will happen to me, but it helps me to read about your experiences with the progression of these things. Even though I'm married to an orthopedic surgeon, he has no experience with any of this, but I can tell he's worried...and my doctors (in the space of a month I went from 1 doc to 3, and from no drugs to a box full!) my doctors are quiet on the subject of long-term.

[BonnieVick]

I'm not sure about long term prospects or about the PA part. I had PP on my hand that was awful and it has cleared up for the last year. I think Psorcon was what did it and now whenever it is a bit bumpy Dovonex seems to keep things at bay.
I have it on my pinky too. frequently the nail falls off. I just try to keep it clean and keep the nail trimmed. Dovonex seems to be helpful when it's not too bad. Psorcon sometimes when it's oozing. I put cotton gloves inside garden gloves and my golf glove so I can tolerate chores.
Exercise sure makes me feel better too. I'm working with weights etc and walking on the treadmill. But seems like I have a problem with my foot breaking out at least once per month. Last month I couldn't walk for about 10 days. That was the worst, but seems to only happen once a year. Wrapping helps that sometimes.

Hang in there.

[krissy]

Wow! It sure is nice to hear others have the same questions and concerns that I have.

I am 24 and have had psoriasis since I was 5 and psoriatic arthritis since I was 15.
I have recently been questioning how I am going to be able function when I am older. For the last six months I have had severe pain in my knee. This pain is affecting the quality of my life because I can not sleep at night. Upon visiting my orthopedist he told me that the nasty sound that my knee makes every time I bend it is due to arthritis "chewing up" my knee cap. I had both of my knees cleaned out when I was 19 in order to eleviate some pain I was having. It actually got worse afterwards. Then I had my ACL replaced when I was 22 which was followed by a clean up and screw removal 6 months later.
I lift weights 3 days/week and try to do cardio 3 days/week. I have changed my eating habits. All in an effort to live a healthier lifestyle and hopefully save my body.

What am I going to look like when I am 40? 50? 60? I already unconsiously limp and have constant pain. Now once again I have to go back to the rheumatologist in hopes that they will be able to make this better for me.

I also worry about cancer. I have used UVB light treatment, tanned excessively in the summer and now go to tanning beds. My chances for skin cancer have greatly increased and I am still young. I have a few spots that prsently look suspicious. However, I am scared to go to the dermatolist to have them looked at. Have I caused myself to get cancer? I hope not.

Psoriasis and Psoriatic Arthritis often creates more questions than answers.

I am still hoping that there will be a cure one day. I believe that my family has been plagued by this disease for many years with my grandmother and father greatly debilitated by the arthritis. I hope that I do not pass this on to my children. I am wondering if I should even have children.

Good luck with your treatments, I hope that everything works out well for you.

Krissy

[nrasher]

Krissy-
PLEASE get yourself to a dermatologist if you have any "suspicious" spots. We are all in this for the long haul and I know that wonderful things are right around the corner for all of us.I just got the PA diagnosis and it really made me feel scared, angry and sad all at the same time. But in spite of this I believe life is to be lived, so damn the torpedoes and full steam ahead.Take the best possible care of yourself now ( which you are obviously doing) so you'll really be able to enjoy it when they whip this disease. Please go to your derm!!!!
Nick

[web63]

I have been DXd with PA for about 3 years now.
I take:
Enbrel - 2 shots per week (10 weeks)
MTX - 1 shot per week (.10mg)
Azulfidine - 1500 mg per day
Prednisone - 10 mg per day.
Folic Acid - 1 mg per day, except on MTX shot day.
Then for other problems:
Lipitor - 20 mg daily (High Colesterol)
Cardiazem - 120 mg daily (High Blood Pressure)
All this, and I just turned 40 last week :-(

Hang in there, things will get better.

BTW - Enbrel is doing a pretty good job for me now.

Thanks,
Scott in Atlanta, GA

[whatsup]

JesseLou,

I, like you, was very frustrated that my rheumatologist would not respond to my questions about the longterm outlook for someone with PA. I was diagnosed 1 1/2 years ago when I was 42. At first, I thought he was trying not to tell me really bad news, but now that I've been seeing him regularly I think he honestly does not know. I am currently taking Remicade infusions every 8 weeks, MTX, sulfasalazine, naproxin sodium and a high blood pressure medication. The Remicade has really knocked out the psoriasis lesions and significantly helped the PA. I'm hoping that aggressive treatment will keep my joints in fairly good shape, but only time will tell. So I keep exercising as much as possible and hope for the best. Its frustrating to not know what the future holds but I'm glad that the drugs are doing something! I hope it helps to find out that other people are "in the same boat." Good luck!
Stacy

[JesseLou]

everyone - I really appreciate your comments. A lot!