Thursday, October 16, 2008

Decisions

As I have mentioned before, I have psoriasis. Psoriasis is a non-contagious, incurable, autoimmune disease that affects the skin. Simply put, a normal skin cell will mature and fall off of the body's surface every 28-30 days. With psoriasis, a skin cell will mature every 3-4 days and move to the skin surface. In the most common form of psoriasis--what I have--patches of skin, called lesions, become inflamed and are covered by silvery white scale. The scale is the dead skin and is what makes the flakes--the most recognizable symptom of psoriasis. Psoriasis can be mild to severe and can affect most every area of the body.

Some people have patches of psoriasis that will cover large areas of their body--such as the entire lower leg or back. There is always the possibility of cracking of the skin and infection setting in, but it isn't very common. In some cases, the lesions look like a very large area covered by a rash with dead, scaly skin covering it. Not a real pretty sight. While I have most areas of my body showing signs of psoriasis, mine isn't nearly as bad as it could be. My scalp, fingernails, stomach, knees, elbows, back, chest, and butt cheeks do--now or at one time--have psoriasis lesions. Even though I have quite a few compromised body areas, I am undergoing a bit of a remission at this time. Now, that DOESN'T mean I am uncovering parts of my body any time soon, it just means that things are going better than they have been for a while. A lot of my body lesions look like flat, white patches--and aren't very dry looking at all. The areas on my knee and elbows are dark pink to red and shiny, but, again, aren't scaly. As a matter of fact, it looks as if I have burns more than anything else--something on the order of what it looks like right after burning yourself on an iron--only larger.

A lot of people with psoriasis find it itchy--and some will scratch to the point of breaking the skin and causing bleeding. Thankfully, I don't have itching. My worst time with itching was the REST of my skin--and I pretty much eliminated that problem a few years ago when I quit using detergents, etc, with any fragrance. I either have a sensitivity or allergy to some fragrances--and I don't know how much, if anything, it has to do with my psoriasis.

Because of the scale, a lot of time people spend taking care of themselves has to do with removing it. Removal of the dry skin is important so that any topical medications can reach and be absorbed by the 'new' skin underneath. I am lucky in that I usually can remove any dry skin in the shower--I just have to stay under the water long enough. Once the dry skin softens, I can remove it with a loofah or other means of exfoliation. Because of my skin problems, I MUST shower every day--and because I shower every day, I am able to keep up with removing the dead skin. If, for whatever reason, I am not able to shower one day, it can take me up to two weeks to get my skin back to the way it was before the non-shower day. Psoriasis takes up a good part of my life.

At the very least, I must apply topical medications to every lesion on my body once a day. I try to get some of the areas--mainly my elbows--twice, at least. Some of my meds are creams and they go on quite easily. Other meds I have are ointments--NOT nearly as easy to apply. The ointments are the exact texture of Vaseline. Stop and think about it for a second: you have to apply--AND rub in until absorbed--Vaseline to LARGE areas of your body. (For me, this involves most of the stomach and the upper half of my back--as well as other areas.) The more you rub it in, the less mess you make on your sheets or clothing. BUT, the longer you rub it in, the more time you are spending NOT sleeping or doing something else you would rather be doing. I spend anywhere from 15 minutes to a half hour each time I apply my meds. This is on top of the 20-30 minutes I spend in the shower. Psoriasis robs you of a lot of your time.

I have, and use, A LOT of medications for my disease. Mostly, I use topical meds and most of them are extremely potent steroids. And the newest meds are very expensive. For example, one of my meds costs more than $200 for a 60gm tube--about the size of a medium tube of toothpaste--and this might last me for a month. (I have insurance--the ONLY reason I am able to use what I do.) Right now, I have 8 different meds for my body and scalp that I use on a rotating basis. Why rotating? Well, meds have a funny way of becoming ineffective over time with psoriasis, so I try not to use any one thing for too long of a time before changing to something else. Also, I find that I have to use different meds on different parts of my body--not everything works the same everywhere. I can't use most of my meds on my face or in the folds of my body--like under the boob or armpit--because they are too harsh and the side effects can be bad. Side effects of the steroids include thinning of the skin--which can cause the skin to split open--stretch marks, rash, inflammation of the skin, and discoloration. Of course, I do often wonder how the absorption of all those steroids are affecting me physically. Hmm, I could probably blame quite a few of my problems on that. Right now, other than prescription meds, the other thing I do to help my skin is I go to the tanning salon twice a week--with my dermatologist's reluctant approval. (Tanning DOES help me, but it, too, loses its effect over time.) I also get cortisone injections periodically. Unfortunately, my dermatologist won't do them as often as I would like because of side effects. Besides, they, too, have limited benefits--some areas will get better, some won't. That's way that goes.

Speaking of meds, I have used most everything out there. Over the years, I have used many prescription meds, most of the over-the-counter ones that are made, and a number of mail/internet order things--even some that can't legally be sold in the US. I have tried the 'diet'--or a reasonable facsimile--and various other things that 'have worked' for other patients. (I find out about 'remedies' online or at the National Psoriasis Foundation website.) Unusual things I have used: cider vinegar, Dead Sea water, coal tar in various forms, every skin moisturizer known to modern--and maybe even ancient--man, sulfur soap, goat's milk soap, oatmeal soap, and various soaking products, including Dead Sea bathsalts. I can't remember everything I have bought, but it is like someone suffering from cancer: if it can't hurt--and sometimes even if it CAN--you will try anything to cure what you have.

Even with all I go through with my psoriasis, I am one of the lucky ones. Very rarely will I have any amount of pain associated with any of my lesions and I don't have bleeding episodes often. (My cousin has psoriasis on the palms of her hands and they crack and bleed.) I don't have many itching episodes and I am pretty much able to keep the scaling to a minimum. Other than my thinking I am on the verge of developing psoriatic arthritis, my biggest problem with my disease is of an aesthetic nature: I don't want anyone else to see what my skin looks like. This has made me into more of a recluse than I want to be, as I can't go to places if I don't have the proper wardrobe. This also makes me hate the summer--it is hard to go out in 90 degree weather when you have to wear long pants and long sleeves. My wardrobe consists of 3/4 to long sleeved shirts and jeans--and not much else. It has been over a year since I actually wore a short-sleeved top outside of the house. The closest I will come is elbow-length and that is because most of my elbow will be covered. There are days when I just want to sit down and cry over my situation--it can be VERY depressing.

This brings me to the decision I have to make. There are some fairly new drugs that are being used for psoriasis and they are called biologics. Biologics work on T-cells and have a remarkable success rate. Now, they don't CURE psoriasis, but most patients have great success using them. One bad part of these drugs are the fact they work on the immune system. There are side effects and one of them is the possibility of infections or not being able to ward off infections easily. Another bad thing is that you have to use these long term--possibly forever--for the results to continue. These drugs have to be administerd by needle--either self-injection or by IV at an infusion center. And the biggest negative is the cost: $4000 for three months. (My insurance would probably pick up most of the cost.) I have to weigh whether or not the negatives are mild enough for me to do something for my self-esteem, or is it just not worth it? I have to talk to my primary care physician before taking this step, as he can help guide me--he would know if any of my other medical problems might be a reason for me not to use a biologic. I LOVE the thoughts of possibly being able to wear anything I want again, but then I have to ask myself, "At what cost?" A big decison that I will make before the end of the year. I only hope I make the right one.

5 comments:

ordinaryjanet said...

wow! This was very informative-I know next to nothing about psoriasis and don't know anyone who suffers from it. I'm sorry you have to go through this.

My two cents-since you say it could be a lot worse, I'd say that for now I'd pass on the new treatment since the side effects might not be worth it. If you were cracking open and bleeding, you might feel you don't have anything to lose and a lot to gain. You never know-maybe in a couple of years they'll come out with a treatment that won't be as iffy.

Burg said...

My mil has a disease that effects her immune system. She's constantly sick.. She gets sick going to the store. If the side effects of the treatment are a lowered immune system, you may not be able to go out anymore than you do to keep yourself from getting sick. I'd hate to see that happen to ya.

cmk said...

This is why I am SO lucky to have a PCP that has won as many awards as he has. (He just was named one of the top physicians in America.) I am completely comfortable talking to him and accepting his advice.

I DO worry about the immune system thing, but my dermatologist says she hasn't seen that side effect with any of her patients. She also said the drugs have been used by people with arthritis--both 'regular' and psoriatic--for 15 years or so and the majority of people DON'T show any side effects. And, I KNOW that 15 years isn't really that long to know the long-term effects of a medication, but...

janet: I understand what you are saying about how I'm doing well right now. The trouble is, with psoriasis--at least for me--it can look like I am going into complete remission one night and have everything flare up the following day. Things turn around so quickly with my skin that I can never be sure what the condition will be like from one day to the next. So, I ALWAYS act and feel as if tomorrow will be worse--every good day is a gift and that's how I take it.

meleah rebeccah said...

psoriasis must be terrible to deal with. UGH.

As far as medications that interfere with your immune system? I am an expert.

Most of the medications I have to take for my medical issues leave me unable to fight off anything. I get a cold? two days later its bronchitis.

I am forever sick but, I can say that I have NOT had a crohn's attack in about 8 months *knock* wood.

So, Its really up to you. do YOU think its worth it to rick being sick all the time?

cmk said...

meleah: These are the kinds of questions I can't answer on my own, so I am happy my PCP is as good as he is. AND this is why I haven't made the decision yet. My PCP has a lot of older people as patients--and POSSIBLY quite a few that are using biologics for arthritis--so he might have experience with the side effects. It IS a big decision, so I have to tread lightly here.