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–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.

[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 (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

[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’t' apply any ointment.  It started spreading to my neck and below the hair line, but it is not so visible to the outsiders.  This is one of the main reasons I stopped wearing my wig.  It helped a little, but not much.

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

[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 (Sjögren Syndrome) and psoriasis were both suspected by my hepatologists and rheumatologist. My dermatologist said however exactly the same as Jim wrote: autoimmune skin disorders as psoriasis, seborrhea and rosacea can all contribute to other autoimmune phenomena as arthritis or inflammations of eye, and exact borders cannot be always easily drawn between them. Without making a biopsy she had ruled out psoriasis and diagnosed and treated rosacea. She had to treat my general dry skin condition too.

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

[Cindy10]

Just thinking about ya, what **** to be going through now after all this time. I guess it really does take a toll on the body. Hope your doing allright and I hope you got some help today from the doc.

[CitizenSmith]

Hi,jmjm530 pretty much covered it,Psoriasis is a auto-immune disease,it is important to get a diagnoses of a (good) Dermatologist (plenty of other skin conditions look similar), Psoriasis on the face is uncommon (forehead is common) with the exception of some of the rarer varieties,don't use any soap or over the counter products, don't use topical steroids on the face you will regret it,with creams of the Donovex type be careful they are just as likely to make it worse as better.Sun in moderation is good again be careful to much will make it worse.If you have a flare up on Tx and you haven't had the problem before I'd suggest leaving it alone until Tx finishes when most likely it will clear.Emulsifying ointment is my favourite for cleansing with may be a little olive oil for dryness and scaling.Although Psoriasis is a recognised side effect of Tx sufferers will not necessarily have a flare up (I didn't in fact I cleared my skin completely).A warning about Methotraxate don't,at the very least study up on the possible side effects,including it's ability to kill of your liver.Actively trying to reduce stress,maybe using calendula cream to moisten and time are the best things to use.Good luck to all.

[pigeonca]

I'm not yet treating (hopefully will start next week), but just recently I've developed inverse psoriasis, added to another autoimmune skin disorder, morphea, which came on about a year and a half ago, at approximately the same time that my ALT levels became elevated and thus my hcv was diagnosed.  My uneducated hunch is that the untreated hep causes the body to produce enormous quantities of natural interferon, which causes autoimmune reactions.

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.

[Forseegood]

gee sorry to hear this, keep my fingers crossed for you, you seem like such a strong woman, I know you'll get through this trevail with your head up, and victorious...happy holidays at any rate...hope you get 8 really nice presents btw...I know youre enjoying screener time! (Yipee, one of my favorite times of year!)...and the nice weather...blessings to you...

[Valtod]

Deb, I'm so sorry to hear that but you're really at the finish line! If I were you, I'd push a week or two more, then stop at 66 or 68.  72 is just a number. I totally agree with Skepsis.

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.

[Forseegood]

hope you feel a lot better a lot sooner...

[ladybug52]

You're our poster girl! Don't give up now if you're afraid you'll have regrets later. My gosh what you've gone thru! As a woman I know how important my hair and skin have always been in terms of self esteem (and I'm really not a beauty, just slightly above downright ugly)
Good luck with this latest challenge.
Bug

[jmjm530]

Be proactive. Line yourself up a good derm in advance of treatment. If you've already got inverse psoriasis, the interferon is likely to flare it and morph it into plaque, pustular or possibly even guttate psoriasis. I had the lot. As already stated, the diagnosis isn't always clean and often seb derm, atopic dermatitis and rosacea can become layered in, especially when on treatment. The problem is that what might be good for the psoriasis (light therapy for example) may be bad for the rosacea. Very tricky and sometimes less is more and that's where a good dermatologist comes in. In fact, a lot of what people seem to be describing as "psoriasis" sounds an awful lot like seb derm to me, which can itch quite bad, while psoriasis usually doesn't itch. Seb derm may have a fungal trigger and what may be a benign fungus off the tx drugs, may cause problems when the system because immunosuppresed by the interferon.

All the best,

-- Jim

[Forseegood]

okay, let's eat! ha ha, just kiddin...hope youre well and feeling better all the time...

[Forseegood]

hey, sorry, didn't mean any disrespect, this sounds terrible and I hope everyone ones get through this okay, with their skin much better, the fact that Jim is better now makes me feel that most can...

[DoubleDose]

Hey, I'm not superstitious, and I'm not Rod Stewart, but I do believe that in YOUR late response tx situation (extention to 72 weeks) that you need to try as hard as humanly possible to fulfill your tx guidelines.  Who knows where the cutoff point lies in this case, for successful SVR, BUT you know that you just do not want to be on the short end of that continuum.  I went through so many horrible autoimmune sides on tx, that I thought I had died, and was living in some 'other' land...I had killer mouth sores, rib and neck pains beyond belief, sun-sensitivity, gastric pain, lung burning, and eye grittiness and extreme flares with red bloodshot burning eyes.
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

[pigeonca]

First of all, NYGirl, I'm here rooting for you.  Whatever decision you make will be the right one, I'm sure.  If you can't take it, don't, but if you can, we're right with you.  But it would seem to me that a few weeks less than your extended optimal 72 weeks wouldn't matter that much.  Happy holidays.

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.

[Forseegood]

you started it, but I thought this movie that will come out to theatres soon, The Sweet Land is brilliant, along with this other movie, coming out soon, German, The Lives of Others, really brilliant...you'll prob see them soon enough on a screener...hey, give me a buzz when you start treatment, if there's anything I can do, let me know...fetch something from the store, etc...maybe the first few weeks will be intense, or maybe not...I know your bro and sis-in-law will be there for you too, but in case they are not, I don't live too far....best of luck...

[goldyn]

I know what its like to be on that line, where it becomes scarey, You have put up a great fight, if your at that scarey place , please take time to look inside and figure out what you want... my heart was skipping the last 2 mths and my blood pressure kept rising im now 6 weeks post tx and had to start blood pressure meds this weekend, and i think i was thrown into menopause...these drugs will mess you up there was no way i could go more than my 48 even if i was told to by my doc i was at that line where i knew something bad was on the horizion,whatever you chose im behind 100%..
                     Blessings
                            angie

[Forseegood]

gee, I hope you feel better too...with time I'm sure you will, take care..menopause, who the h@ll invented that?

[NYgirl]

You know - I stopped having my 'friend' come to visit when I started tx.  Now........after a year and a half.......I'm hoping and hoping that it's just gone for good and that I had an early menopause and it never ever comes back.  

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!

[merlino]

Hi Deb, how things go well at derm. I was pretty much finished w/menopause b4 I started tx. By the second week I had full blown menopause symptons. Night sweat like you can't believe. I would have to get up and change my pj's. Then during the day out of no where I would get a hot flash that would leave me in a sweat. I went thru menopause with out one symptom and now look!

[goldyn]

How are you, I wanted to let you know and also ny girl, that as of today im not menopauseal (sp) I guess you really do start to get back to normal, I just wasnt given it enough time so watch out ny girl, youll prob. go back to routine too....Now I only need to get my bloodpressure back down......I dont want to scare you forsee cause i know your kinda funny about heart issues...but Ive  had borderline high blood pressure for 3 years, so the tx just kinda pushed me on over I know ive got to change my eating habits, and it kinda erks me to have to do it, so if you decide to tx you will prob.not have any trouble cause you already arelivin healthy....

[Forseegood]

yeah, you got me on the heart issues, it's like I dont wanna know? but I have to do those cardiac tests soon, as HR calls me, the kid with my head in the sand, gotta pluck it out, I get encouragment from all the bravery I see here..hey is this chat? God knows...