Psoriasis Decrease rating??

[ArmyVet1981]

Hello everyone!

 this is my first post on this site, but I have been stalking it for a while now.

I have a question that maybe someone can address.

I'll try and make it short and sweet....

I received my SC disability for psoriasis 30% in 2009.  At the time I was only on topicals that did nothing for me... For the last 2 years I have been on Humira which has been a blessing!   I just received a phone call from a rep stating that I was coming up for an exam on my psoriasis... I told them I was on auto-immune suppressants, so of course my skin is clearer.. She stated that would drop my rating.....??  My issue is this... if they take away my 30% for my psoriasis... who would pay for my Humira?? And isn't the fact that I am on auto-immune suppressants enough to keep my rating as is??

 

any advice would be greatly appreciated:)

[ArmyVet1981]

Also spoke with my VSO and he stated ...

I will ask the VA to reconsider the 30 percent evaluation and the need for future exam.

 

I hope that works...

 

[justrluk]

I spent a lot of time fighting with the VA about my rating for psoriasis. Even though I take biologics, because they were prescribed by the rheumatologist and not the dermatologist, they said the rule didn't apply to psoriasis, but to psoriatic arthritis. You have to go down the road of taking photos of break-outs, things effected when you have flare-ups (e.g., can't go swimming, can't do 'things' with my spouse, etc...) and a journal of the days/weeks/months these happen. I've also had the VA stop my biologics for various reasons and I documented what happened as a result. Also, don't forget to file a clothing allowance for the damage to clothing the use of topical treatments creates.

[ArmyVet1981]

Justrluk, Thanks for the response.  However I don't take topicals anymore as they did nothing for my psoriasis... After so many years I was grateful that the VA Dermatologist FINALLY prescribed Humira... Although I hate the every other week shots..... They keep my skin clear!  My VSO stated even though I don't have a flare up now, its only BECAUSE of the Humira, which I have been taking for over a year now... that would at least keep me at the 30% if not, higher... Fingers crossed that it stays at the 30%....if it goes higher.. even better. But I'm not pushing it;)

[justrluk]

I'm on the same med. Just be careful: your (and my) skin may be clear, but read the warnings. I spent last year in and out of the hospital because I wasn't producing white blood cells and perforated my colon = really bad scene. Also, I developed breathing problems after starting Humira over a decade ago. Never smoked, but developed asthma. Just be aware (as I am sure you are) of the warnings that come with Humira. Right now, the VA is going to re-evaluate the drug for me as the best option. It has worked to slow the disease (psoriatic arthritis and psoriasis) but at a cost.

Also, even if they propose a decrease in rating, you should appeal. Your reasoning above is correct. Unfortunately, you have to re-educate people on what your psoriasis looks like without the medication (take photos when/if you have a flare-up).

[ArmyVet1981]

I am so sorry to hear your experience with Humira.  Fortunately for me, I have not experienced those issues, and they constantly check my blood work, which is good.  I'm hoping the letter from my VSO is enough for them to at least stop and think about it before making me go through another exam..... I mean I get seen by a VA Derm every 6 weeks... all my records they can see..... But if I do have to have another exam and they try and decrease me solely based off my skin being clear now, ..... I will definitely file an appeal.

[Navy04]

Glad to hear the Humira is working and sorry for the VA issues. I was on Humira for my Crohns a few years ago and it almost killed me. Caused me to bleed out, and required a second blood transfusion. Good luck and keep us posted. God Bless