skin question

[pln]

Hello,I am going to the dermatologist today, I have a rash that started on my chest, now it is up to my neck and down on my torso, I also have round red spots on my leggs and arms different sizes very dry in the middle? Is this what is called riba rash? Now my question could you please tell me the name of a med I can say I am on? I DO NOT want to tell my derm that I have hep-c! Thank you.Pam

[FlGuy]

Pam, In oder for the derm to make an educated diagnosis you need to inform about the tx meds.  But, even if you did (and you need to) the fact that you're taking vx will be an unknown factor to him/her.  And, you can't tell the doc about the meds without revealing the hcv.  Is this a doc that you know outside of the medical realm?

[FlGuy]

Is this week 12?  Have you discussed the skin issue with the trial folks?

[pln]

Yes, My family knows this lady very well, I really  really don't want to tell her. I understand what you are saying but... I have 6 more days of vx left, maybe I should just cancle and see what happens when I stop the vx? dose it sound like riba rash?? the round spots look like ring worm!

[FlGuy]

A couple of other choices.  Find a different derm, get the advice of some of the dermatological veterans here in the use of over the counter remedies or tell the doc that that you have the expectation that she will observe the law in your state (MD?) and not divulge any personal medical information to ANYONE.  But, if you see a derm you gotta tell them about the meds.  They might think you gave some god-awful communicable disease and start amputating important parts of your body that might be useful in the future.

[pln]

Flguy, You are right , I need to tell this DR the truth, I don't know what I was thinking? I showed my study nurse the rash 2 weeks ago and she really did not say anything, well now it is worse, and the big red spots are popping up every where .Pam

[pln]

I am in Virginia.:)

[jmjm530]

"Riba rash" is a catch-all phrase. There are several types of conditions you might have based on your description. The treatment drugs you're taking are ribavirin and pegalayted interferon.

The interferon can cause skin problems as well as the ribavirin. One example of a skin condition caused or made worse by interferon is psoriasis. You will probably want to tell the dermatologist you're treating for Hep C even though (some cynicism follows :) they might not know what you're talking about anyway :) I understand your concern that your family knows this person. I'd consider FlGuy's advice and consider seeing another doctor.

Meanwhile, if you don't mind spending a few hours looking at a lot of pictures, you might check out: http://www.dermnetnz.org/

Plug into the search engine different skin conditions such as: "rash", "psoriasis", "ezcema (eczema)", "Seborrheic dermatitis" and see how they match up with what you have. Just be aware that oftentimes skin conditions mimic each other and even professionals sometimes have to biopsy the skin before making a definitive diagnosis. Also, this is a New Zealand site, and we may treat some of the same conditions differently here.

Has your study nurse and/or doctor seen the rash lately, in it's current form? If not, you might want to make a special appointment and show it to them. Faster even, if you have a digital camera, you might want to email them a picture and get their input.

Good luck!

-- Jim

[FlGuy]

I used to be in Virginia too. Then we broke up ;)

[pln]

Jim, thanks for taking your time to answer, I am going to check out that site now. I will let you know if I see any thing that looks like this. Flguy, you are funny!!

[FlGuy]

Put this in the misery enjoys company category.  You're not the only only one with red spot problems.

http://www.cnn.com/2006/TECH/space/10/11/jupiter.spots.ap/index.html

[copyman]

i thought i read about some people in the vertex trial with awful rashes. i think a few were on this forum. maybe i'm wrong. i hope this dont turn out to be a sx of vertex and possibility not get FDA approval. man that would suck because many people including myself are hoping & praying for better drugs are so hopeful for this one.

[pln]

We are all praying this vx-950 is the MAGIC pill, and it could be!! If the only side is a rash and some red spots no big deal , hopefully they will go away when vx is stoped. I am in my 12th ,week. so I made it. If it is from the vx, vertex will now know and can treat people before the rash happens. :)

[pln]

As the storm has grown stronger it's probably picked up red material from lower in the Jupiter atmosphere, most likely some form of sulfur which turns red as part of a chemical reaction, she said.

That is it, this is what I have. :) thanks.

[FlGuy]

and we can only hope that the situation on Jupiter does not affect Uranus. Baaa-Dummm.

[pln]

Well, I really did not want to mention it on here,, but.. ;)

[NYgirl]

PLN, there have been some people on Vertex that have developed very bad problems with a rash.  It's impossible to know exactly what your rash is but going on my experience and what I've read our riba rash (as we call it) it's usually VERY SMALL little bumps that itch like mad.

NOT big red bumps like you mention.

If you go to a derm - and it is related to any of the treatment most likely they won't know anything about whether it could be riba rash or not. I mean most don't have any hep experience compared to a hep doc.

You need to see the doctor at your trial for SURE.  #1. he would know what this is #2. it needs to be put into the trial study information.

when i had the "ribarash" it was small tiny little chickenpox like bumps and they itched like CRAZY.  Do you have any itching cause you don't mention it?

I don't believe that the others who are on vertex who have had the bad rash problem had any itching either.

[pln]

This stared in the middle of my chest, now on both brest down on my torso, it looks like a sunburn, and it itches on and off. But it is the round spots that that are growing in number as we speak, looks like ring worm just very dry spots. I go at 3, I will post back. Pam

[OkieJim06]

When I was on TX I got hives and riba rash. The hives were an allergic reaction to the riba and my DR. prescribes a cortezone cream and put me on allegra 180 for the remainder of my TX. The hives went away but the riba rash continued until I finished. My rash was the bumps that eventually turned to dragon scales.

[pln]

yes, dragon scales, the first one are now like dragon scales. Thanks. Pam

[bobbyullc]

why do you not want to tell your dr you have hep c ???????

170,000,000 people have it ???????????

4.000,000 in the usa as of today?????

try not to invent a stigma for yourself and us all.

i shared it with my accountant and she told a friend who had it and i got them to this site and they are grateful for this site and it's info. would not happen if i was anonamous...if we all remain silent there will be no one to confort the next hepper...

horray for vx950. some of the rash is from autoimmune failures.

bobby, the hep c guy...

[pln]

((try not to invent a stigma for yourself and us all.))
Well, that stigma has already been invented way before me, But I do understand what you are saying. I am going to tell my derm the truth today, and I will post back as to what rx I was givin. Thanks Pam

[NYgirl]

This stared in the middle of my chest, now on both brest down on my torso, it looks like a sunburn,




I think that is what the other Vertex'ers said that it was like having a sunburn............it got VERY bad for them I believe.

The classic "ribarash" is NOT like a sunburn - it's little tiny bumps that itch. This sounds like the same thing as the other people have had on the VX...see if you can find that thread and compare.

But this is something YOU ABSOLUTELY POSITIVELY HAVE TO SHARE WITH YOUR TRIAL PEOPLE AND NOT JUST THE NURSE.

Gosh why don't I remember who was just saying this there are two people I really like that have posted about it and bam it's out of my head.

[GrandmaA]

I would find a different dermatologist. One I can be truthful with.

[mremeet]

Pam, I'd say chances are almost certain that you're experiencing the same rash myself and PDS have been fighting. You should know that the rash built somewhat slowly in me at first, but then it accelerates and gets real ugly real fast. Based on your description, it sounds like it's starting to turn on you and may very well develop into a real, REAL rash very soon. Believe me, you dont wan't that to happen. If you only knew what I've been through in the past few weeks, you'd be very afraid that it could happen to you. The VX is causing the rash, somehow it accumulates in the body over time and/or possibly is reacting with one or more of the other drugs. For me it took two months to build up to the point where it started reacting on my skin badly. But bottom line is that the VX is the offending agent and it must be removed. But even if it is removed right now, you're still going to have to deal with the fallout of it for awhile. Although it leaves your bloodstream pretty quickly (supposedly within a day or two after stopping it), I continued with a horrible reaction to it for many days after stopping it, even while on substantial doses of prednisone (an immunosuppressant used for allergic reactions etc).

It's a very long story at this point for what happened to me, but here's precisely what I would do if I were you right NOW: (1)STOP the VX and start getting it out of your system, (2) go to the derm and explain everything about your condition and have them coordinate with your study doc on what the plan of action is, (3) get them to start you on a prednisone taper starting at 40mg first day, then 30mg for 4 days, then 20mg for 4 days and THEN (and this part is very important) go to 15mg for one day and VERY carefully monitor how you feel on that day. Be very vigilant on that day and VERY closely monitor how you feel. If you feel the rash coming back in any way, immediately add another 5 mg of pred back in to put you back up to 20mg. Then continue for several more days at 20mg and attempt to decrease to 15mg again. If after decreasing to 15mg and you feel fine, then great. Stay on 15mg for 3 days and then go down to 10mg for 3 days and then go down to 5mg for 3 days. By that time the VX should be pretty much out of your system, and you should no longer need the prednisone to suppress the allergic reaction.

The reason the 20mg-10mg threshold is so important as described above, is that when I transitioned from 20mg to 10mg in my initial taper, that's where my rash came back with a vengeance (I was still taking the VX at the time too). At 20mg I was feeling fine, the rash was well on its way down and I was doing great. Then just as I went to 10mg, all hell broke loose again. And I didn't react quickly enough and increase my pred dosage back up in time. Once the rash had set in again badly, no matter how much prednisone I added after that (even as high as 80mg!), it no longer had any effect on the rash. The rash continued to exacerbate unabated into the most hellish experience of my life. The rash just took off out of control after that, so it is absolutely critical that you monitor that threshhold when you get to it. And this same thing happened to PDS too, the exact same threshold appeared to be triggered in her once she went from 20mg to 10mg. Fortunately, she rapidly went back up to 20mg and managed to catch it in time, and has now discontinued the VX (i.e. the offending agent). So hopefully by riding out 20mg for several days while the VX dissipates will allow you to step down to 10mg without incident when it happens.

Now, if your rash takes off and cannot be abated or controlled by the prednisone as described above, try an 125mg IV of Solu-Medrol. Solu-Medrol is an IV steroid similar to prednisone (i.e. it's in the same class of drugs). It's similar, but it isn't the same thing, so don't let some jive talking doctor try and tell you it is the same thing and won't work any better than prednisone. After my rash took off and was no longer responsive to prednisone, I languished for more than a week with the rash waiting for it to go away. It didn't go away, it only got worse. I struggled with my doctor to find a solution, but was basically told that you just have to ride it out and there was nothing to be done. I said I wanted to go to the ER I was getting so bad, but I was generally foo-fooed away from doing that, because as it was explained to me all they will probably do is give me solu-medrol which isn't effectively any different than what I was already taking. (Solu-medrol is what someone would commonly receive if they walked into the ER with a severe allergic reaction incidentally). So I was talked out of going to the ER and getting solu-medrol for many days. Finally, I came to the point where I was such a debilitated, welted over, leprosy looking nightmare. I could barely walk and was babbling incoherently. I was really on my last leg and finally had my gf take me to the ER (this past friday night). They administered the solu-medrol - and within 1 hour I could feel the reaction inside me start to subside. It was a MAGIC BULLET, it saved my life!! It turned off the reaction FINALLY!! All that BU11$H1T they told me to keep me from getting the solu-medrol was just that. I've never been so frickin frustrated and angry in my life!!! Today I sit here with fading welts and flakey skin, absolutely drained and exhausted from the whole ordeal, but thank god it has finally passed (for now anyway).

Anyway, sorry to vent. But believe me, learn from my experience. Stopping the VX now and getting on the prednisone plan as described above will probably fix you right up pam. Just be careful around the 20-10mg taper transition point as described, and hopefully you'll be AOK and have a nice soft landing. Best of luck...

[FlGuy]

Wow.
Pln: just a point of reference.  I think you started a week or two before PDS and MRE.

[NYgirl]

Ah I'm sorry that it was you.....I knew it was as soon as I read your name it popped back into my head.  I knew it was two people I really liked that totally didn't deserve it and that it sounded exactly like what you were going through.

You and PDS sure as hell didn't deserve this whatsoever.

[NYgirl]

I know you stopped the VX but are they going to leave you on the IFN/Riba portion?

[willows]

I know that prettydamscared had the rash, she was concerned the derma might take her off VX, but we have not heard anything more from her, so I assume the rash went away and the VX stayed.  Let's see.....rash or losing hair?  Rash or fatigue, pain, Brian fog?  Hmmm....give me a side of the rash and I'll be fine.

Boy, I'm just crossing my fingers that the rash is just a reaction of the VX working, sort of a last gasp of the virus leaving this world.  I can only imagine how uncomfortable you must be, pln, and I'm not minimizing your sx, I'd rather you got treated and we knew ALL we can about VX.  You are being brave about telling your derma, you are so close to end of trial, I'm sure it won't affect the duration of tx.  Just know I am thinking very very good thoughts for you and praying that sometime next year, I am the one getting the scary rash!!!  Good luck and I hope you feel better very soon.

Willow

[jmjm530]

Skin problems are one of the more common issues with conventional combo treatment. Really think it's too soon to jump to conclusions that the one or two rashes reported are do to VX-950 as opposed to ribavirin or the Peg. We'll know soon enough for sure as the trial data gets analyzed.

[APKhaos]

Week 13 of the VX trial this week, so the VX-950 dosing is over. Had some serious itching, and lots of tiny little pointy bumps, but nothing like whay MRE and others describe.

Hey Pam, you are done with the VX end of this week, right? If so, why not complete the dosing? Without refuting anything anyone says above, its far from conclusive that the VX is the source of the rash. Just look at the number of SOC tx'ers here who have major itch/rash issues with no VX whatsoever.

Keep the faith! Just a few more days to go!

[mremeet]

If your VX pills are not bitter, you are probably receiving placebo. Something to consider if you don't have the rash.

[Kalio1]

What a nightmare! I am glad you are starting to have this skin situation improve, finally. It sounds like quite a severe situation and word "rash" seems to minimize it. Sounds like it involves large areas for those who have it.  Not like any "riba rash" I have ever had. I am wondering, do the study doctors administer the care for this rash problem to you? You ended up having to be treated in ER, were they unavailable for some reason? I assumed in studies doctors would handle all problems arising and watched over you like a rare egg about to hatch taking notes, are they attentive? Do you feel like they are taking good care of you? Are they paying for the ER visits, etc.? I dont mean to sound nosy, but I would consider a trial if I would need to in the future and I am wondering what level of care you feel you have gotten.
Your experience is pretty convincing evidence that the VX causes this skin reaction or rash or whatever it is, I hope they can remedy it somehow. All of you guys' descriptions are very similar. Thanks a lot for sharing it with me/us.
Im no expert on statistics, but it seems that 3 random people from various parts of the US on the VX trial posted here and they all had the rash would indicate a rather high percentage. Statistically that says something to me.


Have they given you your VL and other stats? Aside from this nightmare, how are you doing with the IFN/Riba?
hang in there.

[FlGuy]

Don't they tell you something after week 12?, Or, share some data?  I think pln is under that impression.

[APKhaos]

Pam,
I'm in VA as well!

FL,
The 12 week Arm is unblinded around week 10. This Arm ceases all dosing [VX, Peg, Riba] at the end of week 12. All other Arms remain blinded until around week 20, as I understand it.

[APKhaos]

Don't think I'd jump to any conclusions based on subjective descriptions of taste of the pills. All will be revealed in due course.

The temptation to get a PCR off the reservation is becoming considerable!

[NYgirl]

The rash you have is most likely from the Ribavirin. Notice you say how itchy it was. It is tiny pointed bumps. What they have is described as "sunburn" and nobody mentionned severe itching like with the ribarash and is so severe - two completely and totally different rashes here.

Like Kal said - it sounds B.A.D. and I had an extreme case of the ribarash and it was nowhere NEAR what they are experiencing.

[lab-rat]

I'm so sorry that you had such a terrible experience and that you had to stop the vx!  How many weeks had you been taking it before you had to stop?  Are they going to keep you on SOC? ...what a nightmare!  

I also have a 'sunburned chest' that started in the beginning, (about 4-5 weeks ago) with some minor bumps and a little itching.  It's still red and ugly - but doesn't itch much. I was getting concerned after reading pln's post..but I think that's really what it is...i.e. sun exposure coupled with the photo-sensitivity from the meds.  It's as though my sunscreen didn't work...Who knows?  If it was really sunburn, it should be gone by now. The PA from my study asked me specifically on my last visit if I had any rash...so I showed her my 'sunburned chest' and she said it did not look like the normal rash from riba that they're used to seeing.  However, they weren't sure what it was.  Also, I'm not on any bitter tasting pills...so I guess its still a mystery.  I'm crossing my fingers that it doesn't turn into something worse.
  

[jmjm530]

This is guttate psoriasis, my diagnosis. The guy in the middle is pretty much what my back looked like. Also had it, but not quite as bad on trunk, and later buttocks with some leisons on arms and legs. Note how similar it looks to the pics of pityriasis rosacea
http://www.dermnetnz.org/scaly/guttate-psoriasis.html
Also look at the herald patch compared to a seb derm patch which often is also mid-chest
http://www.dermnetnz.org/dermatitis/seborrhoeic-dermatitis.html
Sometimes I thought these derms were winging it with the dx and actually had conflicting diagnosis' at one point. Here's another condition called "poikiloderma civatte" -- it can also occur on chest and I was also diagnosed with that although another doc thought it was rosacea or seb derm.
http://www.dermnetnz.org/colour/poikiloderma-civatte.html

Smartest thing one derm said to me when I questioned why I was getting so many diagnosis' is when he said the skin doesn't have a name for what it goes through, doctors are the ones that make up the names. The one thing I'm sure of is that inteferon brought out the worst in my skin -- and in many others.

[Kalio1]

Did you end up telling the derm you are on the VX50 and tx drugs? Is the derm associated with the study, f not what did the study doctors ay about it? What treatment did the derm prescribe for it?

[jmjm530]

The sad part is that even the best hepatologists know very little about skin problems other than they exist and can be flared by the treatment drugs -- and hardly any derms know anything about the treatment drugs and how they interact with the skin, other than they do. This is what I discovered after seeing two world-class hepatologists and 5-7 supposedly excellent dermatologists. In the end, they treat the symptons or if things get too bad they will take you off the drugs. But of course, you're correct, PLN should make sure the trial doctors see his skin problems, especially in terms of collecting study data. BUT what about all my skin problems and post-tx side effect data? Do you really think my hepatologists are reporting my skin problems to some agency or even writing about them. LOL.

Be well,

Jim

[jmjm530]

Mre: here's precisely what I would do if I were you right NOW: (1)STOP the VX and start getting it out of your system...
------------------------------------------------------

Mre,

Sorry you're having some skin problems. I certainly can relate and went through skin hell for close to 54 weeks. I'm a little unclear on if you finished your 12 weeks of what you presume to be Vertex, as my understanding is that the trial is still blinded and no one knows if they're taking Vertex or not. What did the trial doctor or nurse say? I would assume they have more data than on one or two patients.

PLN:

I would not follow ANYONE'S advice on starting or stopping drugs -- especially the primary drug in a trial -- before first discussing with both trial nurse and trial doctor. Mre's experience, may be similar to yours, or may be different -- certainly no one can diagnosis a skin rash over the internet. If you have the least thought that the rash could interfere with treatment, I'd see the trial doctor very soon.

[FlGuy]

How are you two doing?

PDS: Is hubby done yet?

[jmjm530]

Probably relevant to add at this point that during treatment I had lesions over 70% of my body, open sores on feet and hands to the point that I had to limit my walking, plus a major league rash on chest, neck and face. There were weeks on end that skin "awareness" plagued me day and night.  I did not take any VX-950, just Peg and Riba.

This is not to say that VX-950 isn't causing the rash discussed, but it doesn't make sense to jump to conclusions -- or to alter treatment protocols -- based on one or two reports. What does make sense is to show what is going on to the trial doctor and take it from there.

-- Jim

[jmjm530]

When will they tell you if you're on VX-950 or not, and how much longer they want you to treat? How many viral load tests have been done to date and have they told you the results? If not, do you know when they'll release the viral load results? Thanks.

-- Jim

[mremeet]

I don't want to be discouraging or be the bearer of bad news. But I have pretty thoroughly looked into the nature of the VX pills vs placebo. I won't go into every detail about how I know, but I can assure you I am (was) on VX, NOT placebo. And my pills are very bitter and nasty tasting. It's true human taste is subjective and taste sensations vary. But the bitterness of these pills rises to the level that anyone with a normally functioning olfactory system would NOT describe them as being neutral or certainly sweetish tasting. I've also cross referenced my taste experiences with others who I *know* are getting the VX and we all agree on the flavor. The authentic VX pills ARE bitter, and most consider them very bitter. A smaller minority of test participants describe their pills as either neutral or even sweetish in flavor. The smaller proportion of observed "neutral tasters" would make sense as well considering the lesser odds of receiving placebo. I haven't heard through *whatever method* (hint hint) how these people are responding VL-wise. But I haven't heard of any rash complaints (that rise to the level of what we've been experiencing) from any of those people. And if their pills are not awful bitter, I think I know why.

There's more to it than this and I'm not going into it all here. But at this point the VX in some shape or form is causing rashes in an apparently significant portion of patients while being dosed with peg and riba for the duration were/are on it. That doesn't mean it isn't going to work, because it most certainly does kill the virus and kills it with a vengeance. And it doesn't mean that it's failed its test by any means. It simply means that there is some form of potential roadblock with the VX that is going to have to be reckoned with in some way. Before this experience, I had never heard a single bad thing about VX. That's why I signed up, it showed great promise with nary an apparent downside. It may very well be they already know what the causative factor is for the rash and are already developing a workable plan to deal with it (shortened dose period, no riba, controlled pred taper at end of dosage etc etc). But I'm pretty comfortable going out on a limb right now in saying (1) the rash I had is NOT typical riba/SOC rash, it's a different animal altogether, I know that now, and (2) the VX in some way, shape, or form was responsible for the rash when dosed with the riba and peg (meaning that it's possible it wouldnt have happened without one or the other two drugs).

Again, I really don't want to be discouraging to anyone here who suspects they may be on placebo. But the curious irony here is that all things considered, I would probably have been better off if I were in the placebo group. My increased odds of achieving SVR because I was getting the VX are probably all but wiped out by now because of the riba and VX dose reductions I experienced along with having to take prednisone (an immunosuppressant). All I can hope now is that my anti-viral bridge hasnt been broken in all the chaos.

Regardless, best of luck to everyone in the study. Keep fighting!

[FlGuy]

Although it will take much more time, very anxious to hear about that non-riba arm in Europe.  That sounds like a very telling population.

[mremeet]

Normally I agree 100% to not give medical advice like that over the internet, it's an absurd thing to do...NORMALLY. But I've come to realize that at this point, I am as much an expert on this rash thing than ANYONE else is. In fact, MORESO! My doctors didn't know what to do about it, and I have just been through the learning wringer for the past few weeks as I have described in detail. I also have cross referenced my experiences with another study participant which correlates perfectly with my experience. Here are a few more salient details: (1) pln IS getting VX (trust me) (2) My doctor is a very experienced and competent hepatologist who has treated over a 1000 patients in a research environment over ten years. He said (paraphrased) "As I sit across from you looking at your rash, I have never seen riba or peg cause something like this, and I've been working with ribavirin since 1996. I do not believe the rash is being caused by ribavirin. This appears to be a systemic, classic allergic drug reaction"  And (3) I was then referred to an experienced derm within the same major research hospital I am enrolled with. He examined my rash and concurred "systemic classic allergic drug reaction being caused by the research drug". And he knew that I was taking a protease inhibitor, and this guy had been involved in treating HIV research patients in the past that were taking experimental protease inhibitors before (PI's for the treatment of HIV instead of HCV). He said he recognized this type of rash and had seen it before, "PI rash" he called it as he instructed the pretty young intern. They both pushed and poked at my welts and found them quite interesting. He then said, "you've removed the offending agent (i.e. stopped VX), this will subside and go away on its own within two weeks."

Lastly, of course pam should tell her doctor and get his concurrence. But the thing is is that the rash is deceptive, it creeps up slowly and then all of sudden blows up in an uncontrollable manner. Then at that point the immune response is like a huge lumbering juggernaut that takes days or even weeks to respond or change directions to certain corrective inputs. The sooner you get on top of it, the better off you'll be...BELIEVE ME. And I can assure you the number A1 priority is to REMOVE the offending agent. Just my laymen's internet expert opinion, as asburd as that sounds. But at this point after seeing how my doctors fumbled around for so long and after all I've learned in the last few weeks, I'm convinced I'm the resident expert on the subject at this point. So yeah, I'm gonna go out on a limb and assert that you should stop the VX! And no I'm not a doctor, but I'm STILL going to recommend it! Purple welts on my A$$ I still say so and say without the slightest reservation!

[pln]

O.k, I just got back from the derm, she diagnosed me as having Pityriasis Rosea, herald or mother patch. the condition begins as a large single pink patch on the chest or back. This patch may be scaly and is called the herald or mother patch. Often the person with this condition will think this patch is ringworm.Within a week or two, more patches, sometimes hundreds of them appearon the body and arms and leggs. I am looking at a form she gave me and this is what it looks like. Mine started in the middle of my chest (mother patch) and is now taking off. I have a rx will pick up later. I will finesh my vx-950 (placebo) I have 6 days left. MREMEET, I AM SO SORRY this has happened to you, but we know you are und and you will stay that way!. I will let every one know what happens with my rash.Pam

[jmjm530]

Funny -- not actually -- but my doc who has also treated well over 1000 patients in a research environment -- also shook his head at the welts that covered 70% of my body and said he didn't think it was from the ribavirin and that he had never seen anything like it.

First, of all, docs are real good at "shaking their heads" when it comes to side effects. I can't tell you how many times I've heard from a well-known doc in his field "Never heard of that", "Never heard of this" -- I think it's a course given in med school called "Never heard of 101" :)

Turns out, what I had was guttate psoriasis layered probably with contact dertmatitis, seb derm and who knows what else -- so yes, it was caused by the treatment drugs BUT BUT the strategy used was NOT to stop the drugs but to treat the skin problems. The risk versus reward thing -- just like we don't stop the drugs when we get anemic, we treat the anemia with Procrit, etc, etc. And, many others have had severe skin problems on riba and peg and in most cases the drugs are not stopped, rather the probem is treated. Of course in some cases the drugs are stopped as this is a case-by-case thing.

In your case, you apparently finished the 12 weeks of what you presume to be VX-950, so I'm guessing that regardless of what your doctors are saying now, they didn't feel it serious enough to stop your treatment during the 12 weeks on VX-950.

PLN has his own doctors and all I'm advising is that he has them evaluate exactly what's going on with him before making any decisions. While what you have may sound exactly like what PLN has, it indeed may be different in form and/or severity.

I do understand that another person here has reported similar skin problems. Did you ask your trial doctor how many of his VX-950 patients have a similar rash? It may turn out that you're part of an unlucky minority, just like I was part of an unlucky minority with my severe skin problems. Still, I gutted out treatment because the reward (both in my opinion and my doctors) was worth the risk.

Don't want to be insensitive -- and it's certainly impossible to compare one person's pain to another -- but I've been there, done that, paid my dues -- and suffered for 54-weeks so I'm gonna say it. Suffering 12 weeks with skin problems is *probably* nothing compared to what many of us go through who have treated for 48, 54, 72 weeks or even longer.

Sorry to be blunt but don't want to scare anyone off a VX-950 trial unless, of course, it's warranted by what their doctor says.


-- Jim

[jmjm530]

Interesting. My first skin problem was actually a reddish rash the size of my fist, right mid-sternum. Hit around week 12-16, can't remember now. I was so dizzy/nauceous with other stuff at the time that didn't see a derm for another month. By then my body was covered with leisons. The dx was guttate psoriasis, however, it looks fairly identical to Pityriasis Rosea as per the pictures here, so who knows what I really had since later I did get a diagnossis of both seb derm and rosacea:
http://www.dermnetnz.org/viral/pityriasis-rosea.html
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You'll read that pityriasis rosacea resolves itself in a few weeks. Just keep in mind that all bets are off on things resolving themselves quickly when you're on interferon. My guttate psoriasis persisted for a year in spite of UVB Narrow Band light treatments which seemed to repress it some but at the same time aggravated my rosacea.

Again, not saying this wasn't caused by VX-950, but take a good look at those pictures. That's how 70% of my body looked and I was not on VX-950. Just Peg and riba.

Feel better soon,

-- Jim

[visally]

I have hep c since 1997, about 2 years ago,  I started to those red spot, when you get whole bunch they get together, they itch so bad it drives me bananas and then the skin is inflare burning bad that you will cry when you have to put on a cream. Now this year has been bad for my legs, I had to have someone drive to Hershey Hospital, I had to be wheel in cause my legs where hurting badly, this rash affected my joints, I had to wear my carpool tunnel braces for my hands. I am very scare because the way this rash affected me. The skin doctor can't do much for me, only to put me on a high dosage of presidone. I ry the treatment for hep c and sadly it didn't do anything. I will talk to my doctor about doing the treatment again, cause I can't live like this, the rash is coming out on my upper body. I think I will look like a freak soon,

[cetacean]

old

[T246]

I am at week 9 of TX, I am doing Aveeno baths, using good lotions, and got a anti inflamatory cream from my skin DR.  My rash is 100% better and now very manageable.  Like everything on TX we learn ourselves and from each other.  The information on how to have quality of life while on treatment is so lacking from the drug companies and even a bit slow at quality teaching universities.  Good luck.
T