Riba Rash help needed - jim are you out there??

[mremeet]

I seem to be coming down with the riba rash pretty bad. I have these red spots pretty much head to toe. There are also blotches threatening to turn into large contiguous rashes. I have these rashes/spots on my feet, legs, arms, elbows (especially elbows), hands, back, chest/torso, neck, face and scalp. Even in my ears. It has assumed control and has got me worried. So first, does this sound like a typical riba rash? (whatever "typical" means with this disease/treatment) Second, what should I do? I've been taking gold bond triple cream for a few days. It does seem to help some, but I'm getting concerned it isn't going to control this outbreak. I know that various steroidal creams and oral prednisone can be prescribed, but are these steroid treatments safe or advisable? I know there's a lot of ins and outs and special considerations to steroid treatments that makes it a somewhat dicey medication especially while having HCV and/or undergoing treatment. But is it ok or advisable? If so under what circumstances and what should I be careful about?? How do I coordinate this effectively with my doctor(s)? (haven't gotten a derm yet, do I need one?)

Ok, thanks in advance for the help. And jim I've read several of your excellent posts about skin issues, really hoping to hear from you as well. Thanks...

[jmjm530]

Sorry you're suffering like this.

I had more skin problems than a leopard has spots but not sure if I ever had what folks term "riba rash". Honestly, still don't know what it is and wish there were some pictures on the net or that folks could have posted to show me.

Anyway, given the breath of what you describe, I'd forget the home treatment route (sometimes we can do more harm at the drugstore than good), check with your treatment doctor, but still head to see a good dermatologist as soon as possible for a more definitive diagnosis.

It could be any number of things including psoriasis, contact dermatitis, seborrheic dermatitis, or some combination. I had three types of psoriasis (plaque, guttate, plantar pustular) plus seb derm and other stuff, and Gold Bond did nothing but irritate things.

As far as steroid creams or injections, there are pro's and con's but again first get a diagnosis. If you do end up going the steroid route, be very careful of using any on your face. In fact, some derm's don't let their patients use any steroids on the face as it can make things a lot worse long term.

Meanwhile, if you like playing detective and don't mind looking at some graphic pictures, a few hours spent at this site might identify some of your rashes. You might start searching under "psoriasis", then "seborrehic dermatitis", then "contact dermatitis" then "rash", etc, etc. Sub searches might be "plaque psoriasis" and "guttate psoriasis" -- one (guttate) can often turn into the other (plaque). The elbow thing could be plaque psoriasis and the scalp seborrhic dermatitis (I had both in spades) but even a doctor can't diagnosis without seeing you and I'm of course not a doctor. Here's the skin site:http://www.dermnetnz.org/

A lot of people don't realize that the skin is the largest organ in the body and therefore can be the most troublesome, especially when someone is under treatment with ribavirin and interferon. That's why it's so important to become proactive and agressive when any skin problem develops.

All the best.

-- Jim

[can-do-man]

Haven't been on to much lately, after reading guess you haven't either. Have you had your 6 month pcr?

[jmjm530]

Hey CDM,

Yeah, haven't been on for awhile. At six-months I was as non-detectible as Jennifer Lopez at a PETA rallye :)

Hope this finds you and your hemoglobin doing well.

-- Jim

[can-do-man]

Great news jim. Congrats on beating this.

[way]

Go to a derm, and get the meds (rx) I told you about even the shots, and get out of misery.
I had the same thing even in my ears. It's not just a riba rash. More like dermatitis induced from the interferon, but you need to get the upper hand now, don't suffer. If it's THAT BAD it will get worse especially with the itching scratching and discomfort. Go to the derm tomorrow get a cort shot. Re-read my other post to you.

[fishdoc]

if I knew how to post pics somewhere I would!!  Mine was not the daily riba rash- one time event that had Dr. thinking Cryo... but its an UGLY photo!!!!  Lobster leg.....

[mremeet]

Thanks to all for the great advice. Jim I'll look over the website and see if I can identify my rash, but so far after an hour they start to all look the same. So is "riba rash" really just a misnomer or even an urban legend? Are many of these treatment induced rashes actually caused by the interferon instead? I've always heard riba rash riba rash riba rash, but apparently maybe it isn't riba rash?? Confusedddddd.

And way thanks for your advice, I've got to hit the derm ASAP, this is getting worse unfortunately. Will you have to continuously take the drugs and creams for the duration of your treatment? Or do the drugs settle the reaction down permanently after a single course of it? How much longer do you have to go in your combo treatment? Are you worried about some of the conditions that jim mentioned previously like thinning of the skin, possible permanent onset of rosacea and/or psoriasis etc? And what about these meds lessening the effect of the antiviral drugs? (i.e. by tuning down your immune system) What does your hep dr say about the meds you're on in regard to all of these issues? That's what's got me so worried about steroid based stuff, it just seems risky in the sense it could take my down a road I don't want to go if you know what I mean.

Thanks again to all for the very helpful advice.

[bobbyullc]

you know i had riba rash bad during early tx...i took the site recommended skin cream and it finally went away... i still wonder if it was just time or the cream???? the cream did give me something to do besides feel sick/////rots of ruck...

[Morgaina]

Just good to see you guys around, kind of makes me feel better.

Never had many problems with Riba rash but still dealing with some skin thing. Not so bad as before but am always surprised when another patch shows up. Not large, just persisting!

[jmjm530]

Fish,

Yes, sounds like you had something different from riba rash (RR), but like I said, not really sure what RR it is, and possibly it's different conditions all lumped together. That's why lotion "X" may help some with "RR" and not others. As far as posting pics are concerned, you might want to contact Tator Tot. In fact, she posted some of herself today down below. Nice looking lady btw :)

If there ever was a condition where a picture is worth a thousand words it's in the field of dermatology. Still, many derms won't diagnose from pictures and insist on seeing the condition, not that they are such great diagnosticians in person :)

Mre,

To clarify some of what I said and your concerns -- sometimes topical steroids are warranted and can make a huge difference in how you feel. I have used them in the past and continue to do so but very sparingly.

My note was simply cautionary as overuse (or too strong formulations) can have consequences, especially on the face --  therefore the importance of having yourself monitored by a good derm. From my experience, hepatologists seem to prescribe much stronger steroids than the derms for the same conditions, and this may not be a good idea in the long run.

In my case, because over 50% of my body was covered with one form of psoriasis or another, my derms opted to treat with light therapy (UVB Narrow and X-trac laser) as opposed to using topicals.

The advantage of light is no skin thinning or steroid rebound. The disadvantage is exposure to UV rays which the derms tend to minimize based on very short clinical study timelines -- especially for UVB Narrow Band and X-trac.

I believe my current rosacea was caused in part from the UVB Narrow Band treatments which did seem to repress my guttate psoriasis although in the end I think it was finished off by a  fairly long course of antibiotics. Of course, the derm didn't order the antibiotics, but rather my ENT and Urologist did for conditions respective to their field (sinusitis and prostatitis). Did I mention today I'm not particularly fond of dermatologists :)

X-Trac laser appeared to totally eliminate my plantar pustular psoriasis on hands and feet but it took over six months of treatments, so the question always remained in my mind was it the laser or was it simply the time? The nice thing about X-Trac is that it supposedly causes no UV damage. The downside is that it can only treat smaller areas (less than 5-10% of the body) and its consideral expense may not be covered by many insurance policies.

Lastly, regarding steroids and treatment efficacy. I don't believe the topicals will effect treatment at all, and I know that many hepatologists use some of the systemic steroids like Prednisone, so I assume there effect is minimal if any, but it's a good question to ask your treating doctor. There are, however, some strong systemic drugs for psoriasis as an example, that have known liver toxicity. The potential harm of these drugs have to be carefully weighed against the potential benefits during treatment. Needless to say you derm should always be reminded you have a compromised liver and all meds prescribed should be run through your GI or Hepatologist.  

A newer systemic therapy for psoriasis are a fairly recent class of drugs called biologic response modifiers (biologics) such as Enbrel (Entercept). Enbrel is another self-injectible to add to the treatment chic pin cushioned look :)

According to some, Enbrel is not liver toxic and in fact one very small study several years ago suggested it could help interferon clear the virus better. Still, when I suggested Enbrel to my hepatologist, he cautioned that using a second immunosuppresive like Enbrel may have unknown consequences in regard to treatment and should be held off as a last resort -- especially since I was doing so well by clearing the virus early in treatment.

Still, something to keep in the back pocket of your mind s hould you end up with a dx of psoriasis and things get really bad.

Do hope everyone with skin problems gets some relief.

All the best.

-- Jim

[can-do-man]

Thank you, hope all is well with ya. Take care.

[blakcat]

Hi there, just wanted to say that I was told that a rash on or near the injection site was ok but an all over rash was not ok and to see the doctor. Hopes this helps.

[jmjm530]

Just to add a little, many of the skin disorders, especially immune-related conditions like psoriasis are caused/flared by the interferon not the ribavirin.

That doesn't mean "riba"rash doesn't exist, but it does mean not every rash is caused by the riba. Of course, it's possible that the riba could cause skin condition "A" that may morph into psoriasis or something else that then gets aggravated by the peg, but his is just speculation on my part.

What I can be more sure of -- from anecdotal stories on the net, and other readings -- is that both drugs (peg and riba) do cause skin problems in most that treat. And that those with pre-existing skin problems often have the worst time.

-- Jim

[way]

My hep doc. didn't say a thing except "OK" when I told him I was seeing a derm.

The first derm I went to was a laser, cosmetic enhansement,idiot,and didn't help.

The second derm knew what to do. The thing is you don't want to use the strongest cort cream if a milder one will do the trick and control it. So you have to "graduate"until you get relief. I was on three creams and the last(strongest) one took about a few days to start seeing improvment, and also a cort shot takes a day or two to work.( I had two) the derm explained not to use cream for body on face and also it's written on tube. Got a separate cream for face. It also says to only use until results are achieved NO LONGER.

The last cream, the strongest(ointment actually) the derm said to BE SURE TO USE ALL 60 GRAMS (the whole tube)within a week. I don't know why but I'm guessing the duration should be strong and SHORT.

I was using various RX creams twice a day for three weeks and now I'm good- rash gone, some residual blotchiness left and dry areas.NO itching. I was taking aterax 4/day.

This is not-- if It's what I had (and sounds to be) going to be lasting your whole TX. Thats what really scared me too. It's just a reaction. Some thing triggered it maybe even chemicals. Switch to fragrance free laundry soap, no dryer sheets or fabric softener.Use fragrance free lotion(for now)like neutrogena.

Don't worry about thinning skin or steroid induced roseacea, if you follow directions and don't keep using creams you'll be fine.
The thinning skin thing is mostly a worry for if you have something chronic like psoriasis and use topical cort for.
This is OK for TX derms ARE DOCTORS, I told my derm that everything must be compatible with my hep meds. She is also treating three other people with hep on TX.

A GOOD DERM is the main thing, you need one that treats and can troubleshoot rashes not a laser botox clinic. Phone and ask or get a referal to a good one. Read my other post to you before for the RX products that worked.

Open a thread tommorrow and I'll tell you again if you want but out of energy for typing now.

[aiuta]

Jim,
It's SO NICE to have you back, even if it's only for a moment.  You have a unique gift for explaining very complicated things, but in (somewhat) lay people terms.  I miss you and your input.  The Forum is not the same without you.  I feel like our wise teacher/"oldtimer" is gone.  In fact I was thinking of writing a post entitled, "Where is jmjm? We miss you."  Take care of yourself and I hope you enjoy every second of your SVR bliss.  You deserve it.  
All my best,
Aiuta

[returntosender]

Ditto.  Congrats on the SVR Jim, really good news.  Very happy for you.  I am about 4 months post, clear at 3 months on Heptimax so I was really given some hope by your continued clearance.  Since it appears you are trying to wean yourself off of these forums, no questions, I will simply say thanks for being around for my year of treatment and for providing me with a role model for how to get it done.

[jmjm530]

Excellent news! The 3-month post tx PCR correlates almost exactly with the six month (especially since you had the sensitive Heptimax test), so to paraphrase one of my hepatologists, unless you're extremely unlucky, SVR is yours :) We all react differently to the meds, but often you have to show patience post treatment regarding lingering sides. It took six months after treating for my skin problems to get better but they definitely are improving and hopefully will soon return to my pre-tx base. Thanks for the nice words and all the best moving forward.

-- Jim

[jmjm530]

Sorry, missed your post yesterday. Hope this finds you well and tolerating treatment OK. You've gone through a lot to get this far and hopefully that should help you get through the rest. Thanks for thinking of me.

Be well,

Jim

[mremeet]

Thanks to all for the helpful advice, especially way and jim. I'm going to see the hep doc tomorrow, hopefully he'll know what to prescribe in order to alleviate this maddening rash. Also hopefully he won't try and short shrift me on a fast acting and effective treatment just so the vertex blood work is not adversely affected. Will advise later once I get my prescription. And if it doesn't work real soon, I'm off this sh*t!! Arrgghhhhhhhh....