Lately I've intended to make a few different posts, but every time I am in the mood I'm either too busy or my DSL is out. The busy part is good - I don't mind it if I'm doing something that is interesting, which is how work has been lately. The DSL problems have really annoyed me, though. I'm glad I can work from the NOC when my connection goes bad at home. Anyway, this will probably be a fairly random post since I haven't made one in a while.
In my case I vary from moderate to severe, with it covering 5 to 15 percent of my body at any given time. I consider myself fortunate that it is confined to my arms and legs, since some people have it on their faces or in parts where you really don't want it. On the other hand it has changed my life in some negative ways. Before it was so severe, 6 or 7 years ago, I was more active. I liked to go camping, swimming, that kind of thing. As it got worse I became more and more embarrassed to go out in public in shorts or short sleeved shirts. In Florida's climate that puts a damper on what you can do. It also destroyed much of my self esteem. I started to withdraw too much and found it easier to just live through the computer.
While I have dealt with a lot of those issues, they still come up and I have a hard time dealing with them sometimes. I find that it helps to remember that I am fairly lucky. It's not on my face. My legs may be covered in thick red and white scales, but they work. I can walk. It is horrible looking and painful, but I am not dying or disabled as a result of it. I tell myself that I'm lucky. It works sometimes.
The reason for all this preamble is that I have a chance to participate in a medical study that would include an experimental drug to treat the condition. I would very much like to try cutting edge treatment and I feel it is important to step up and volunteer if there is any hope of making progress. Unfortunately the things I have read about this drug include a lot of risks. Liver damage. Edema. Weight gain (another problem area for me). Oh yeah... and heart failure. It also sounds like the drug doesn't have amazing results.
To further complicate issues, I've finally started responding a bit to the medicine I've been using. Normally I would be ecstatic, but in order to get into the study I would have to abandon the current treatment. Eventually I'll stop responding to the steroids, but for now it's helping.
At this point I'm trying to decide what to do. I have an appointment for Friday morning to be evaluated for the test. I honestly don't know if I will go. I don't know if it's worth risking the other health issues when the condition I have isn't as dangerous as the possible side effects. On the other hand, I'd like to go outside when it is humid and not feel like I am on fire with ants crawling under my flesh. It would be nice to look at my legs and see normal pink skin again.
Taking the risk is the factor here. Everyone responds differently to medications and you could be the one to profit from it.
Hope all works out well for you.
Posted by: Moxt on March 5, 2003 06:43 AM - linkWhatever you decide to do, best of luck to you on it, Scott.
Posted by: Ezrael on March 5, 2003 09:43 AM - linkI'm not helping matters here, for my view is the opposite of Moxt's: You could be the one to experience serious ill effects. Believe me, I don't wish to trivialize the effect of psoriasis on your day-to-day life, but the benefits:side-effects ratio of this experimental drug doesn't inspire much confidence. Personally I would err towards caution, but I don't think you were asking for our advice with this entry, so I'll shut up now. :->} And all the best on whatever you decide to do.
Posted by: Maurice on March 5, 2003 11:50 AM - linkI have psoriasis on my face. Fortunately, it's relatively minor and I can usually keep it controlled. But when it isn't controlled, it's mighty ugly.
I would suggest (since everyone who blogs their issues wants advice, of course) at least going to the appointment. No harm in that & no reason to close the door right away. See what they have to say. See if they even think you would be good for the testing.
If they approve you, then make the decision.
Posted by: kevin on March 5, 2003 03:35 PM - linkI may be more sympathetic than you think, Xkot. My father has the disease, and probably more severe than you. His is so bad, it looks like a sheet of scab armor on his arms and legs, mostly at the joints. He always says how painfully itchy it is. He uses that cream in the green tube, but the only way to kep it under control is to shower like 4 times a day. So far, neither my brother or I have shown signs if it passing to us, so I guess we are lucky. I don't know how I would handle it at all, even if it were minor. I'd say if there is a chance for you, give it a listen. You can alays stop if it gets worse or other complications arise.
Posted by: dabloone on March 5, 2003 06:47 PM - linkThat sucks, Kevin. Good luck with it. I used to get it on my forehead sometimes and it was really difficult to deal with so I can imagine how unpleasant that can get.
Pete... sorry to hear about your dad. If you saw my arms and legs you might think differently about the difference in our severity. The showering thing is interesting, since that usually causes mine to become more painful for a while. Any humidity will do it, really.
For you and your brother, the best thing to do is avoid people with strep throat like the plague. Strep is one common trigger that can cause people with the genetic chance for psoriasis to develop it. Hopefully you didn't get the gene(s) at all, though.
Posted by: Xkot on March 5, 2003 07:27 PM - linkI have eczema, another skin disease, although it's not really as bad as psoriasis. I never really took any medication for it, I just live with it. The only thing that really bothers me is that my skin is always so dry, even if I bathe in lotion. I flake dead skin everywhere. It doesn't really hurt just embarrassing, that's why I've never asked a doctor about any medication. My point is that if you're not at any health risk currently, just that you're not comfortable with it, then maybe it's not as important to pursue treatment for it.
Posted by: kevin on March 5, 2003 11:27 PM - linkTo my knowledge, no one in my family (that I know of) has had psoriasis. I have never had strep.
However, 2 years ago a new Manager was hired, I endured a lot of stress (as others did) and I developed a small spot on my thigh. It then appeared on my left leg, left foot, right leg and right foot.
The spot on my thigh had developed to the size of a saucer and was very painful at times. I recently was off work for 6 weeks and my thigh is completely clear, no signs of all. I firmly believe mine was/is caused by stress.
I no longer wear skirts, dresses or shorts in public. White, silverish, small spots are something I endure. I count my blessings that I am well and happy, however, those of us who have it, feel unattractive and keep the emotions to ourselves.
Posted by: Moxt on March 5, 2003 11:41 PM - linkI may be totally stupid here, but I have a friend with this condition, two friends actually, and from what I gather from both of them is that if they tan in a tanning booth it helps their skin and they don't have it as bad. I'm almost 100% positive that it is psoriasis, but they might just be saying that to pacify everyone.
If you have not tried it, you might give it some thought to see if it helps.
Posted by: Buzzman on March 6, 2003 02:38 AM - linkA friend of mine has eczema, but not very bad at all, or she treats it. She DOES go tanning a lot because she says it really helps. But are the negative side effects of possible skin cancer worth it? Hers only developed like last year though, and I think I heard her say it can go away for no reason and then come back later on. It doesn't affect her much, though, she is still a very attractive person.
Sorry to hear about your eczema, Kevin. From what I understand it's somewhat treatable, so maybe seeing a doctor when you get that free air force care will help :)
About the tanning booths... I do hear that they help some people. I looked into it a while ago and was told that I'm too tall for the tanning beds at the places I checked, though I think I'm going to try again.
Posted by: Xkot on March 6, 2003 11:23 AM - linkMoxt,
My mother had simliar symptoms to that which you described. It turned out to be Shingles, and it is a stress-related thing.
Posted by: Netsloth on March 6, 2003 04:19 PM - linkI go to the North Florida Dermatology Clinic in Riverside and have received several prescriptions for creams and ointments. They suggested light treatments combined with medication. You have to take the pills 30 minutes prior to the light treatment. I plan on looking into it.
Posted by: Moxt on March 6, 2003 06:47 PM - linkI really feel for you on this one Scott.
In the past my scalp, forehead and neck looked and felt like they had been scrapped raw from the very same condition. It often just bled and was very painful. Unfortunatley I wasn't able to cover it up and was therefore very concious of it.
I used to use a cortisone wash called diprosone to obatin relief, which worked, but you are not supposed to use it that often.
I'd go along to the appointment to find out what's on offer but wouldn't commit to it until I understand *any* of the risks. It may be that once you start taking the tablets you will never be able to stop them.
As you are looking at solutions try going to a naturopath. Whilst I understand these types of things are often taboo it's just another option to try. I have adjusted my diet (wheats mostly) and it's been great.
look into ultraviolet b treatments offered by some dermatlogists. it's like a phone booth/tanning bed - you can stand up - and it is a recognized treatment for severe puritis.
Posted by: bob the corgi on March 6, 2003 09:22 PM - linkWow Damian. That's one of those things that makes me grateful my situation isn't worse. Since you said "in the past" I'm hoping it's better now. I've heard a lot about wheat possibly playing a role. I did notice a slight improvement when I tried low carb dieting for a while, but I don't know if I could really wean myself away from anything with wheat in it. I am considering greatly cutting down on those products, though. I already avoid nightshade plants, alcohol and am working on the coffee.
Posted by: Xkot on March 7, 2003 12:15 AM - linkYeah much better thanks. In fact it's been about 2.5 - 3 years since it last flared up. I'd say, touching wood, it's whipped.
Of course I avoid things like bleaching my hair, and use organic product etc.. oh and I use Baby Shampoo too ;)
I didn't cut out wheat completely I just did some little trials of my own to see what did and didn't seem to affect it - I see it more of an individual problem.
The whole naturopath way seems to extreme for me but I was able to get some practical stuff out of it, and used what I thought I could work with.
Posted by: Damian on March 7, 2003 06:01 AM - linkIt's interesting, the number of people here who have it, or who have it in the family. My father has a pretty bad case of it, with red and scaly stretches covering most of his chest, stomach, and back, along with varying spots that come and go on his face, arms, and legs. He's gone through a number of meds over the years, and now only uses them when he has a bad flare-up (usually stress-related, like when my mother died).
I have it, too, although mine is (thankfully) still minor. At the moment I have a small fading spot in the center of my forehead. (When it first appeared a few years ago, it looked like a small-caliber bullet-wound.) You have my sympathy, my friend.
Posted by: mkh on March 7, 2003 04:40 PM - linkI have mild psoriosis myself. You just have to find the right dermatolagist. The one I have been working with, uses a Grenz Ray machine, which is radiation, it penetrates the first layer of skin, and side effects. It also treats eczema. This method gets rid of patches within 2 treatments. He also uses the ultraviolet ray, which is a stand up booth. This along with the Grenz Ray has helped people that have tried steroids, pills and creams with little or no results. I was one of them. The Grenz Ray machine he uses, is from the 1930's. You will have a hard time finding anyone that still uses it. But you should look into the ultraviolet ray, at least. You just need to find the right doctor that is more concerned with these kinds of conditions, instead of making money popping pimples.
Posted by: fsl on November 27, 2003 11:57 PM - link