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149918 tn?1208128744

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
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1553483 tn?1294267109
i have hep c ....early stage 2, not on TX, have the exact same rash you described and derm said it wasnt ringworm either. gave me strong steroidal ointment. will wait to see if it works. stuff looks and is spreading like ringworm eeeeeek. I wanted to emphasize that I am not on treatment for the hep
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Avatar universal
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
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Avatar universal
old
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Avatar universal
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,
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137025 tn?1217764741
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
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149918 tn?1208128744
pln
I am in Virginia.:)
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Avatar universal
"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", "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



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96938 tn?1189799858
I used to be in Virginia too. Then we broke up ;)
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149918 tn?1208128744
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!!
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96938 tn?1189799858
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


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Avatar universal
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.
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149918 tn?1208128744
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. :)
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149918 tn?1208128744
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.
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96938 tn?1189799858
and we can only hope that the situation on Jupiter does not affect Uranus. Baaa-Dummm.
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149918 tn?1208128744
pln
Well, I really did not want to mention it on here,, but.. ;)
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Avatar universal
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.

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149918 tn?1208128744
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
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Avatar universal
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.
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149918 tn?1208128744
pln
yes, dragon scales, the first one are now like dragon scales. Thanks. Pam
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Avatar universal
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...
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149918 tn?1208128744
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
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Avatar universal
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.
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Avatar universal
I would find a different dermatologist. One I can be truthful with.
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Avatar universal
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...
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