Autoimmune Psoriasis

[NYgirl]

Week 65 on Friday of 72.  I can no longer take it, ARGH!

I have developed a serious case of the autoimmune psoriasis that for some reason has attacked only my face at this point.  It started slowly with two little patches - now I have seven and they are growing.

Has anybody experience with this?  

It's the most uncomfortable ugly itchy red thing I've ever gone through.

I have an appt. with the hep doc this afternoon.  Couldn't get one with the derm doc. I'll ask him about getting Daivobet Ointment.

HELP!!!!!!!!!!!!!!!!!!!!!!

[merlino]

He Deb, so sorry your going thru another side. You are one tough lady. I don't think I could have come as far as you have. I truly hope it gets better. Your almost done. Pretty soon you will put all of this behind you. You are in my thoughts and prayers. D

[jmjm530]

I had pustular psoriasis on hands and feet. Tx was X-Trac Laser, which sometimes (but not always) is covered by insurance. Not sure if they would use it on the face however. The drugs mentioned are liver toxic and of course would have to be run by your hepatologist. I was told to avoid them if at all possible.

An alternative to the mentioned systemics are a newer class of drugs called biologics such as Etanercept (Enbrel) which is given as self-administered injections. I have heard good and bad on Enbrel, but the best advice was to only use it as a last resort since it's also an immunosuppresive and may interact with the tx drugs in some unknown way. The advantage is that it appears not to be liver toxic. My first derm suggested Enbrel but I declined.

[jmjm530]

The liver toxic drugs I was referring to were  acitretin and methotrexate.

Also, who suggested Daivobet? Daivobet I believe is a strong vitamin derivative and I strongly suggest you NOT use it on your face without talking to a dermatologist as it may make things worse. I've tried another vitamin derivative (Dovonex) on my face and it only made things worse.

Here's a blurb on Daivobet and "pustular" psoriasis which you think you might have:

Do not use Daivobet ointment for
severe widespread psoriasis, or the
types of psoriasis known as
generalised pustular or
erythrodermic exfoliative
psoriasis.

More here: http://tinyurl.com/smc3n

[NYgirl]

Thank you Jim I have been waiting and hoping you'd post before I left for the doctors today.

I knew you went through this and now I see how BAD it really is - was - everything.

Thank you for posting. THANK you.

[jmjm530]

Good luck. Bottom line is don't do/take anything (especially that Daviboet)until you see a good dermatologist. Most dermatologists will see you the same day under emergency/acute conditions -- which you have. The important thing is to make the acute/emergency nature of your skin condition known to whoever books the appointments.

All the best,

-- Jim

[copyman]

sorry you have to go through this nygirl. i hope your appointment with the doc helps you. you got some of the best advice from jmjm because he went through it. best of luck and my prayers go out to you.

[scubadiver30]

Sorry to hear this Deb. I don't have psoriasis but I'm starting to see wartlike moles I could swear I didn't have 4 weeks ago...
I wonder if maybe should be your time to quit....64 weeks are a lot, adn your thyroid and now this. Maybe is the way your body says enough is enough..You still UND right?

saludos

[bobbyullc]

man, i had and still have psoriasis from autoimune loss. NOTHING they gave me worked. it did start to clear after tx ended. months after. it never went below my hair...thank GOD, hang in i know you have 72 weeks and that is a load to bear.

happy holidays and merry CHRISTMAS to all you heppers.
bobby

[NYgirl]

I'm just worried I'll crack if I do relapse - even though common sense TELLS me pretty much that 8 week shouldn't matter that greatly either way...I'll ALWAYS wonder if I JUST finished the 72 would it have happened?

If it gets much worse I don't know if I WILL be able to go on...I'm just praying that nothing ELSE goes wrong.


My body really hates this stuff and I don't know how I've made it this far. Except...I'm a stubborn New Yawka and I DONT want this disease to get the best of me!

[Lady E]

I feel SO bad for you that now you have to be going through this. You've been through so much already, I'm sure you don't need this problem added to it all. You are SO close to being finished with this nightmare. I hope your doc can help you with it today... I will say a prayer for you.

Hang tough Yankee Fan!!! With all of us supporting you..you can do it!
Best wishes,
-E

[scubadiver30]

Let me quote Madonna on this:
I don't like cities but I like New York
other cities make me feel like a dork ;-)
Paris and London baby you can keep
I luv Neee Yoorkkk
New York is not for little pussies that scream ;-)
Just go to Texas, isn't there where they golf?

I luv NY and NYgirl... You really r resilient...I'm sure you achieved SVR already!!! just don't do it anymore.

big hug from accross the Atlantic

scuba

[mikesimon]

I have a friend who is treating in NY and he developed psoriasis around his 14th week and it was so bad that they stopped his ribavirin temporarily - they hope. He's at a major clinic of some sort - I'm thinking NIH - and when he started he stayed at the facility for a week or so and I believe they double dosed his Peg for the first 2 weeks so it seems like a hip center as far as I can tell. But he had to stop because the psoriasis was all over his face and upper torso and it was horrible as he tells it. Mike

[crazycanuck]

sorry to hear of the psoriasis. my husband has had it for approximately 7 years about the time i was dx with reumatoid arthritis. he tried every medication and cream there was, but to no avail. he developed psoriatic arthritis and they put him on a injection drug called himura. it was experimental in canada for psoriasis but since then they have approved it. it is the only thing that has worked. he will unfortunately probably be on it forever. i have an appointment with his specialist for my ra but i am pretty sure i can't take it because of the hcv. we'll see in january. sunshine helps a lot as well a salt water oceans. (like we have lots of that!) don't scratch!  good luck with it. hopefully it will go away when you are done treating.

[Kalio1]

Is it just patches?  Or like an all over thing?

Yes, I did have the patches of rashy psorasis looking stuff on my face. I have psorasis on  my elbow, and it looked like that. It did not itch, just ugly. It went away. Took 3 or 4 weeks.It's happened a few times. I don't know if it is the same as you have of course.

[northstar]

Your not stubborn,................

YOUR ONE TOUGH COOKIE!!!! My hat is off to ya.
I really hope you get some relief from this.

[NYgirl]

After doing a bit of research I found this"
well known cutaneous side effect of IFN include
(all of which I have big time)
*dry skin
*Pruritus
*Hair loss
*Psoriasis
*Vitiligo  (which explains the PEACH FUZZ FACE that I've been complaining about forever!)

Oyk. that's all. Just in case anybody else gets all these things happening to them. Oh yeah - it's very common in people who developed AUTOIMMUNE THYROID CONDITIONS

[NYgirl]

This is what I have if it happens top anybody else...you'll have a potential cure

Primarily seen in adults, pustular [PUHS-choo-ler] psoriasis is characterized by white pustules (blisters of noninfectious pus) surrounded by red skin. The pus consists of white blood cells. It is not an infection, nor is it contagious. It may be localized to certain areas of the body

[jmjm530]

You may remember, that psoriasis was one of my most difficult sfx for most of treatment.

I could be mistaken but don't believe there is anything called "autoimmune psoriasis" -- all psoriasis has an autoimmune component, so in that sense it's all "autoimmune".

What happens on treatment is that the Peg does a number on the immune system and if you have any latent tendency at all for psoriasis, it will most probably bring it out. If you already have it, it will make it worse.

Because it's on your face you will have to be *very* careful with any topical steroids that may be suggested as they can actually make things worse in the long term, including thinning of the skin and even steroid rosacea which can be quite unpleasant to say the least.

For this reason, make all efforts to be treated under the guidance of a good dermatologist who will know what topicals are safe and for how long. MDs who are non-dermatologists have a tendency to prescribe steroids that are too strong and for too long with sometimes bad consequences.

One non-steroid approach is topical Elidel, however Elidel is used more in the mainteance stage and not in the acute stage. You should know that Elidel has a black box warning but almost all the derms I consulted with use it on a regular basis, even with young children.

Another reason for seeing derm is to make sure that indeed you have psoraisis. As your doctor has probably told you, psoriasis is not common on the face so indeed it could be any number of skin conditions mimicking psoriasis, again such as seb derm, atopic dermatitis, rosacea, etc.

From personal experience, you may soon start to find that your psoriasis -- if that's what you have -- will soon be "layered" with other skin ailments such as the mentioned. Seborrhoeic Dermatitis, atopic dermatitis, and possibly rosacea. They all run in the same family.

In addition to whatever medications might be prescribed, be very careful using any OTC products, including moisturizes, as they may irritate more than help. I know you favor Gold Bond, but I would avoid that on your face until you speak to a derm.

My regimen was Cetaphil mild cleanser for the face. No soap. And Cetaphil Cream Moisturizer and only during the day.  Sometimes less is more and you don't want to clog up the pores or end up setting your skin up for fungal growth which is common with seb derm.

Lastly, keep a watchful eye out as psoriasis (or any of these skin conditions when being treated with interferon) has a tendency to spread quickly.

Hope things resolve soon.

-- Jim

[mremeet]

Jesus, you poor child you've been through HELL. You are one super tough chick to have made it this far, my GOD 60+ weeks and heading for 72? I'm barely into 17 weeks and my a$$ is WHOOPED already!

Is the rash on your face like the "malar rash" that's associated with AIH? It tends to have a butterfly like shape and typically goes over the nose and onto the cheeks. I had what I belive was a manifestation of that during my VX allergy rash. If it does look like that, I'd get myself checked out for AIH. If it's coming on, I'd stop treatment and hopefully get things to settle down. Your grit and determination is really quite inspiring. I can only imagine going through what you've been through. One thing's for sure, you're one TOUGH customer. Take care of yourself, you're gonna beat this thing!

[chcnme]

awww!!!   NYG!!   I am so sorry.  You have been through so much and have been such a trooper.  Don't you stop tx now !! or... gosh, <strong>try TRY </strong> not to, but I could understand if you wanted to and if you did stop.  I am not in your shoes, and so I'm not one say "don't stop".  I would just hate to see you stop on account of this.  My husband had psoriasis so bad - oh it was so awful for him.  It didn't bother me no matter where it was  (it was all over him).  His worst fear was that it would eventually involve his face.  It never did, and the story of the treatment for him is a long one - one I won't get into here, only to say I know the agony that can go with psoriasis, not personally, but from watching him.  I can't imagine your being on treatment for so long and enduring all the sides and then THIS happening.  My heart goes out to you. It'll get better! It will!  Just hang in there like you always have!  

[Tallahassee]

Based on my experience, I ditto Jim's comments.  Right now I'm also in "watching & waiting" mode and I don

[Tallahassee]

Correction: instead of "lesson" read "lesion" :)

[sailinlady]

Deb I am so sorry.  I have no clue, I just feel your pain.  You are a trooper and have been thru soooo much.  The out come has GOT to be good.  Just want you to know I'm thinking of you always.

[Skepsis]

I had - and have now again 5 months after las Tx - all kinds of autoimmune phenomena, including strong but RF-negative polyarthritis and corneal eye disease along with and skin problems, over the eyebrows and symmetrically around the nose. SS (Sj