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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.
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
I knew you went through this and now I see how BAD it really is - was - everything.
Thank you for posting. THANK you.
All the best,
-- Jim
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
happy holidays and merry CHRISTMAS to all you heppers.
bobby
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!
Hang tough Yankee Fan!!! With all of us supporting you..you can do it!
Best wishes,
-E
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
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.
YOUR ONE TOUGH COOKIE!!!! My hat is off to ya.
I really hope you get some relief from 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
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–for example, the hands and feet. Pustular psoriasis also can be generalized, covering most of the body. It tends to go in a cycle–reddening of the skin followed by formation of pustules and scaling.
Pustular psoriasis reportedly may be triggered by internal medications, irritating topical agents, overexposure to UV light, pregnancy, systemic steroids, infections, emotional stress and sudden withdrawal of systemic medications or potent topical steroids.
It is not unusual for doctors to combine or rotate treatments for pustular psoriasis due to the potential side effects of systemic medications and phototherapy.
More than one study has shown that Soriatane (also known by its generic name acitretin) and methotrexate in combination produced a rapid remission in the acute state of pustular psoriasis and an eventual clearing of the skin.
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 (psoriasis). 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
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!
I had a brief encounter with psoriasis (at least this my derm told me) in ~1994 (prior to my diagnosis and inf treatments). Almost suddenly I developed psoriasis-like lessons on my elbows and knees. During this time Dr. prescribed to me Vt. D derivative (I think, it is Donovex - sp?). I did not have any insurance and it was very expensive and did not help at all. I actually felt it was making things worse. So, I stop applying the ointment, instead, I was cleaning the affected areas with salty or ocean water (we did not leave close to ocean, so I just bought a 50 lb case of salt for aquariums for tropical fish. And I stopped "hiding" from sun - on weekends I'm usually working in our garden - I decided that if Dovonex is based on Vit. D, my body should produce Vit D by UV light (UV converts your cholesterol to a group of Vit D-s).
Month later, I even forgot that I had a skin lessons. Once again, I had nice smooth tanned skin.
I'm wondering now, since I'm on treatment since June 2005 and was hiding from sun, may be lack of Vit D makes things worse (of course, in addition to inf & riba). I don't think it helped, but at least it is not worse (so far).
As Jim said, I don't apply any ointment (z-e-r-o!); my skin from treatment is quiet dry, so when even I can't resist and apply my favorite Olay (sp?) lotion for extra dry skin, red small patches appear further on my face. If I keep it just clean and dry - w/o salty water, because right now I think I may become "a prune" if I dry my skin even more :-) - it seems okay.
But the length of treatment is definitely affecting the skin condition... However, I do believe that the length of the treatment increases chances for SVR... Keep an eye on psoriasis and, if possible, try to finish 72 week (you are very close to the finish line!!
All the best,
E
After therapy (non-responder) much of that "psoriatic" skin problems have disappeared. (But quite the opposite with polyarthritis).
About your dilemma quitting therapy too early (?!): one week at the beginning of the "extra" therapy has a much more weight than one week towards the end of the extension phase. You left hardly an unfinished task, it is much more important to prevent possible harm.
Skepsis
I'm terrified of what tx will do, but if hcv itself is causing these skin conditions, it seems that tx would be the correct way to go (as opposed to not treating, in which case the skin problems might last forever). Man, this stuff is mysterious, and doctors don't know that much more than we do.
I remember that at some point I reached the conclusion (from some studies, or just by casting bones :-) that the additional weeks of Tx do NOT relate linearly to the increased chance for SVR. You rather reach a saturation point after which no mater how much more drugs you shove into your body, the relapse ratio plateaus.
Of course, where exactly this "saturation point" is depends on unique set of individual characteristics. But the important consequence is that the statistical payoff of the final doses is decreasing the closer you get to this saturation point.
And if this is any consolation: I have all of your skin SX - only not as severe at this "early" point of my week 35.
You're a WINNER! Just be sure not to damage yourself trying to squeeze all the juice out of this Tx.
Good luck with this latest challenge.
Bug
All the best,
-- Jim
I managed to push through it all, because I feared relapse more than the pains and problems. I relapsed once before, after 15 months of greuling therapy, and I never wanted to relapse again. If there is any way you can week by week, one at a time ,drag yourself through to the finish, I think you will never feel a regret or self-recrimination....SVR or no SVR. You will have done the full deed, and climbed to the TOP of the mountain. Yes, you MAY SVR with sixty-something weeks of tx, but if you don't....will you be able to live with it? Will you feel OK at the prospect of another, even longer TX???
I believe that you can make it. If there are no extreme, or life-threatening sx at this point, I would vote for...slogging on!
Good luck to you. I think you will win this one!!!
DoubleDose
Forsee, happy holidays, merry christmas, happy new year. Yeah, screening season is what makes this silly movie business worthwile. All those freebies. So far, my faves have been "Little Children," "Pursuit of Happyness" and "Dreamgirls." Jennifer Hudson, wow! She will be a big star, I'm sure. Acting talent as big as her singing talent - i was blown away.
Praying for SVR for everybody.
Blessings
angie
Would THAT be a major blessing or what?
God I don't want to go to another doctor about my face today but we have to find out what this mess is. URGH!