Raising psoriasis awareness

There recently was a fashion show sponsored by two pharmaceutical companies, Amgen and Wyeth, featuring eight people that have psoriasis. Tim Gunn from Project Runway served as the host.

What was the purpose of the fashion show?  From the fashion show’s official website:

The fashion show was the culmination of an awareness campaign designed to help people with plaque psoriasis get more information about managing their disease and feel more confident in their everyday style.

Though I have plaque psoriasis and I’ve blogged quite a bit about having it, I don’t really understand why it’s important to raise awareness about psoriasis. I blog about having it mostly to vent, not to raise awareness. You either have it or you don’t. It’s a genetic disease that affects your autoimmune system. The result is dry, scaly patches on the skin that can bleed and itch. It can be quite painful and quite debilitating. I get it on my hands, but many people get it on the bottom of their feet. I sometimes have a hard time picking things up and doing simply routine things. People who get it on their feet have a hard time walking.

I don’t see how raising awareness about psoriasis changes anything. Raising awareness isn’t going to help me tie my shoes in the morning. It isn’t going to help people with cracked feet walk across the room without experiencing excruciating pain.

I guess I don’t get it.

On the other hand, I see why it’s important to raise awareness with other diseases such as AIDS or breast cancer. People can learn about AIDS and take that knowledge and use it to decide to refrain from activities that raise the risk of contracting HIV, the virus that causes AIDS. When you raise the awareness of breast cancer, women learn the importance of early detection, either via the self exam or the mammogram.

With these two examples, awareness literally saves lives. With psoriasis, that’s not the case.

Enbrel can cause multiple sclerosis?

stantis FDA

I read this on a psoriasis message board this morning:

I am a 39 year old male and I took Enbrel for two years for moderate psoriasis. I stopped taking it last November (2008). I stopped just because I was tired of injecting myself.

A few weeks ago the skin on my right leg went numb. Like pins and needles. Shortly after my left hand became week.

My general practitioner sent me immediately to the ER and a waiting neurologist. They gave me a barrage of tests (CT, 2 MRIs, a Spinal Tap). The results showed a plaque on my cervical spine. The doctor told me that there is evidence that Enbrel can cause demyelination. Demyelination is the when the immune system attacks the nervous system. This can be MS. I believe that this problem was caused by the Enbrel. To relieve the symptoms they gave me prednisone by iv for five days. That made me so incredibly ill I thought I might die from it. The only good that came from it was that it cleared 99% of my psoriasis temporarily.

I am not a doctor, but I urge anyone taking Embrel to consider the consequences. It clearer skin worth other health issues? Please be wary and weigh all your options.

enbrel_sure_clickNot once did my dermatologist speak to me about Enbrel leading to multiple sclerosis. She mentioned that it could lesson my ability to fight off infection. She didn’t say anything about it effecting my nervous system.

It’s all a big crap shoot. Though I’m willing to risk getting an infection, I am not willing to get MS. And it’s not even a sure thing that Enbrel will successfully treat my psoriasis. It very well may turn out to be as worthless as the other infective medications I’ve taken for psoriasis.

I just want to have normal hands that don’t hurt or bleed. Is that asking too much? I want to be able to tie my shoes without getting blood on my shoelaces. I want to be able to use tools at work without causing my hands to crack and bleed.

I took an Enbrel injection earlier this morning. I think it will be my last.

68th day on Humira and these are the results [pic]

left-hand-10-july

As this photo of my left hand illustrates, Humira doesn’t seem to be doing anything for my psoriasis. My last injection was on July 5th. I take my next injection on July 19th. I was originally going to run out of Humira on June 21st, but I was able to order a partial shipment of the drug.

I don’t go see my dermatologist till July 20. Hopefully she will have me stop with the Humira and have me try something else. Something that will hopefully work.

I’m actually wondering if my Humira injections were really just placebos in that Humira is supposed to weaken your autoimmune system. That’s kind of the whole point. The negative side to an autoimmune inhibitor is that it makes you highly susceptible to infections and other similar communicable diseases. For example, I came down with pneumonia while taking Raptiva, another autoimmune inhibitor used to treat psoriasis that has since been taken off the market because it kills people.

Sheri came down with a pretty nasty cold last week. Normally I am the one in our relationship who gets the flu and/or colds, while she doesn’t. I figured since I was on Humira, it was only a matter of time before I started sneezing too.

I never got her cold. This is the first time I can remember her getting a cold and me not getting it.

I’m getting to the point where I have just about had it with psoriasis. Though in retrospect I’m glad that I never bothered to learn how to play the guitar or got into making clay pots on one of those spinning wheels, I wish I had pursued a career in something where I didn’t need to use my hands. As luck would have it, I became an electronics technician. Unfortunately, I am required to use my hands quite a bit. Not only are there many days where I just cannot use my hands properly because the psoriasis is so thick, my hands are constantly in pain.

It makes doing things like surface mount soldiering all but impossible. Working with my hands often causes my fingers to bleed.

I just feel as though I am quickly running out of options. I’ve tried ointments, steroids, UV laser treatments, chemotherapy, Raptiva, and now Humira. What’s next? I feel like I’m getting to the end of my options.

43rd day on Humira and these are the results

Something tells me nobody from Abbott Laboratories, the makers of the psoriasis drug Humira, will be approaching me to be their spokesmen. This photo shows what my hand looks like on the 43rd day of being on the Humira. I do not see any improvement.

I’m scheduled to take my final Humira shot this Sunday, June 21. After that, I have to be seen by my dermatologist before continuing with it. The problem is, she’s booked up till July 20. I would find it hard to believe she would continue having me take Humira. Even if she does, it would mean going at least a month between doses.

That’s probably not good.

Take my advice and don’t get a skin disease. Psoriasis is not a skin disease, it’s an autoimmune disease, but the medical community insists that dermatologists treat it. The problem is too many dermatologists dedicate a good portion of their practice to elective cosmetic procedures.

It means that if you have a legitimate health issue, and you need to be seen by your dermatologist, he or she may be too busy injecting botox into wrinkly foreheads to see you.

How my former primary care doctor screwed me over

I thought I had my psoriasis licked. I was taking Raptiva, a medication I inject myself once a week. After taking it for two months, my hands were finally clear of psoriasis. It was in full remission.  It felt so good to have normal hands for a change.  I felt like a normal human being. No pain, no thick scaly areas, no cracks, no bleeding.

It was great.

All that changed when my former primary care doctor withheld a referral to continue seeing my dermatologist. When he originally referred me to see my dermatologist, he wrote a referral for 20 visits. Unbeknown to me, my insurance company refused to honor the referral for 20 visits. They required a new referral after every four visits.  I never knew this.  My dermatologist was contacting my doctor after every four visits to get another referral faxed to them.

To the best of my knowledge, the initial referral for 20 visits was still in effect.

When I arrived at the dermatologist’s for my appointment to gauge the success of the Raptiva, the person at the front counter asked me for my referral.  She proceeded to tell me about needing a new referral after every four visits and that my doctor said he would no longer issue a referral over the phone.  From now on, he would only issue them in person.  She told me that someone from my doctor’s office should have contacted me and told me this.

Nobody bothered to tell me.

This meant I could not be seen by my dermatologist.  This meant I could not continue taking the Raptiva.  I needed another prescription if I wanted to continue taking it.  That’s something I could not get without seeing my dermatologist.

I immediately went about looking for new doctor.  One that wouldn’t screw me over like that.  By the time I found one taking new patients and got an appointment to be seen and got a new referral to see my dermatologist, the psoriasis was back.  If anything, it was worse then ever.

I don’t understand why I need a referral to see a dermatologist. Psoriasis is a life long, chronic condition that I will have for the rest of my life. Seeing a dermatologist is something I will be required to do for the rest of my life. My insurance company knows this.

By requiring me to get a referral from my doctor, they are in a sense having him re-diagnose my psoriasis.  That’s something he is not qualified to do. If he was skilled and knowledgeable enough to diagnose psoriasis, he would be skilled and knowledgeable enough to treat psoriasis and I would not need to see a dermatologist.

It’s middle-man medicine.  Putting my primary care doctor in the process adds absolutely no value. It doesn’t make for better care.  All it does is drive the cost up.  By requiring me to come in and be seen every time I needed a referral, he gets to charge me a $30 co-pay along with whatever he bills my insurance.  It becomes an unnecessary obstacle to receiving quality medical care.