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Location: Houston, Texas, United States

I'm forgetful. I'm old. I have a phobia about having my hair cut. I'm just plain weird. Better than being weird weird.

Tuesday, November 08, 2005

Here's one the reasons for my long absences from this blog: I have psoriasis and psoriatic arthritis and while I've been getting treatment for the psoriatic arthritis, I've had a few problems with the conditions. But let me tell you a little about the psoriasis.

I first developed what I assumed were warts on my elbows when I was 29 years old. I went to my then family doctor who said, "Oh, that's psoriasis. You can get some over-the-counter creams and it will clear up." Yeah, right. I used the tegrin and whatever else I could find and the wart-like lesions blossomed. Soon, I had spots on both elbows, my knees and little dots all over my legs. Not knowing much, I looked for help and found the National Psoriasis Foundation in Seattle, Washington. They sent me some literature and learned a lot.

I made an appointment with a dermatologist who prescribed lots of creams and gels and goos. The psoriasis didn't go away but it got a little better. I learned from the NPF, that there is no cure for this condition. They know it's hereditary (yet no one in my family has had it or knows of any other family members who had it) but not sure how one acquires it. I think if you have the genetic marker and something triggers it, then you will develope psoriasis. Strep throat is a known trigger.

But for whatever reason, I had it. Once diagnosed you are treated with low-level steroid creams. They are messy, messy, messy. Since the condition usually involves elbows and knees, your clothes will get ruined. Unless, you have a really strong stamina, you could wear sleeveless or short-sleeved tops and dresses and/or shorts and you wouldn't necessarily ruin your clothes. Covering the steroid-topped psoriasis with bandages is a big no-no. Wearing shorts and/or short-sleeves will provide the psoriasis stricken individual with lots of gawking, gasping and downright discrimination. In my case, I chose to wear pants and long sleeves. Thus, my clothes were stained with grease spots.

After months of this, graduating to stronger and stronger steroids, and not seeing much improvement, I gave up on the creams and goos. It just wasn't worth it to me. I'd go nine months, a year or longer without treatment and let it get so bad that I'd go back for another round of the steroids.

Then one day in 1997, after having no treatment for about a year, I woke up and realized I had no psoriasis. I cleared all by myself. Not sure what caused that, but it was glorious. It was summer and I could actually wear shorts and even swim without feeling like a leper.

That lasted about a year before the little lesions appeared once again. Soon it was much worse and I was back on the bandwagon with the creams and goos. But something new had developed in the meantime.

Aches and pains in my knees and ankles. Like arthritis, I guess. Sometimes it felt like a sprain or a broken bone (and I know what those feel like). I figured I had psoriatic arthritis, but knew there was nothing I could really do about that. No way, I was going to take Vioxx or or the other Cox-3 inhibitors. I knew in my heart that these were not good drugs.

Years later in 2004, I was having such a difficult time with my feet (I would be crying by the time I got off from my retail job) and back, I finally made an appointment with a rheumatologist, who confirmed that I did have psoriatic arthritis. My psoriasis was pretty active at this time and had even begun to invade my fingernails (a tell-tale sign or PA, I'm told).

He recommended a treatment plan that included 15 mg/weekly of methotrexate and remicade. To me, this was both good and bad news. I knew remicade was a terrific drug and that it would not only stop the damage from the PA, but also clear my psoriasis. But all that came with dire warnings about a suppressed immune system -- particularly involving the upper respiratory system. Tuberculosis. Lymphoma. I won't even go into the dangers of MTX.

So, I was a scared and excited. I talked with my family doctor and decided to proceed. Things were going swimmingly. The psoriasis lesions started to clear right away. It seems that within weeks I was almost completely clear. I had one smallish spot left on my right foot, but I could wear short sleeves again! I could swim, etc. I didn't get any infections but by about the 3rd infusion of remicade I had noticed that I would develope these hard lumps on my shoulders and scalp. Sort of like those giant pimples that don't get red but just hurt. Cysts, I think they are called. Those would start a couple weeks after the infusion and go away within a week of the next infusion.

Then the psoriasis started creeping back. The right ankle/foot. Knees. Elbows. And then I developed blisters on the palm of my right hand. Five - seven blisters. I was sort of alarmed by these, as I didn't know what they were. Rheumatologist said they were psoriasis. I told him I had never seen psoriasis look like that.

I found a dermatologist who could see me right away and she told me they were something called palmo-plantar pustulosis and acropustulosis . Sure enough I had it on my feet, too. This is very bad news as this is a disabling form of psoriasis. I can't begin to convey how painful this condition is. It's fine if you don't use your hands. But the minute you start doing things like handling papers or opening boxes or moving or washing dishes, etc, the hands just hurt so bad. They become red and inflammed looking. They swell and nothing seems to make the pain go away. I plunge mine in ice cold water. That seems to help a bit.

Now, I have started making boils. Currently, I have many of them. Many in areas, I'd rather not have them. These boils are extremely painful. I am waiting for the doctor's office to call to find out if I might have an underlying staph infection that might be causing all this.

Here are some recent photos of what my various forms of psoriasis look like. Not for the squeamish.





















4 Comments:

Blogger WendyWings said...

Oh man Rebecca I am so sorry you have to deal with all that pain and "more crap"
:(

4:10 PM  
Blogger RebEllen said...

It's crap alright.

Sometimes I just wish I had something terminal. Not really, but having something like this is just totally depressing.

12:51 AM  
Blogger Meira{FB} said...

I sat here an read this and cried. I've had psorasis for 2 years now. I'm bleeding, sore, miserable, it's on my hands. My patient's ask me what it is. I pay $60 a week in creams, I'm on my second dermatologist.

I understand the hearidity factor. Got this from my mothers side of the family.

It's in my nails now. I feel like a leper.

Wish they'd come up with a cure!

I understand what your going through. Wish there's was something that would work.

Helps knowing someone else that is going through it.

12:36 PM  
Blogger Meira{FB} said...

So how'd the blood test come out???

I'm gonna try UV light treatment next week. Wish me luck.

11:33 AM  

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