VX Rash Victims - speak up please

[miked]

There have been posts here by people with the VX950 rash.  Would anybody who  has (had) experienced this rash from hell please speak up?

The Vertex rash is a whole different animal from Riba rash.  I'm week 17 in Prove 3 and the rash started around week 7 or so.  First it started on my arms and legs and looked like poison oak  Next a solid rash covered my entiire  back.  

I'm taking antihistines to help with the itch and Lidex cream.  Staying out the sun 24X7.

The rash has dissaperared from my arms, back and most of the legs.  The fun stage I'm working on right now is my buttocks and upper back of my thighs...pretty much where a person sits.  Right now the rash looks like large patches sometimes like circles...my wife says it looks like ringworm.  I'm not enjoying life much right now.

mremeet is one of who reported the worst case of  VX950 rash posted here but I have't tracked who else experienced this rash to some degree.  Who else is experiencing this thing and are you having anyluck getting rid of it?

The rash keeps going for previously unaffected areas then clearing where treated.  As posted before I think I'm in Arm D now taking placebo plus SOC.If true, how long until this thiing goes away?  

Once it's visited every inch of my body is it done then or does it come back for a repeat performance?

Typically I have a pretty high threshold for pain and other BS but this is really distracting!!!

I'd like to hear from the VXrash community about how to manage this.

I figured I would be susptacle because of I have seasoal allergies and allergies to certain drugs.

Mike

[mremeet]

I think you've heard all I had to say on the dreaded VX rash. Prettydamnedscared was in my group and she also got the killer rash. Both of us had to stop the VX and go through the whole prednisone schpiel before, during and afterwards. It took a good long time for the rash to subside afterwards, its effects resonated months after stopping it. And again, for me it could only be "turned off" by a jolt of solumedrol in addition to the prednisone (well after stopping it). Unfortunately it may take some time for it to work its way out of your system. It's also possible the aftereffects of the riba are amplifying the effects of the riba. I had to reduce from 1200 to 800mg for most of the second half of my treatment cycle because I just couldn't take the skin problems at 1200mg (and not that the anemia was any cakewalk either). Not that I'm suggesting you do the same, but speaking for myself I had no choice.

I know PDS is having her 12 week post tx blood draw sometime very soon (I just had mine today), so hopefully she'll be on or see this post and comment. Hope you're feeling better, *believe me* I feel for ya dude!

[mremeet]

should read: "after effects of the VX should are amplifying the effects of the riba"

[mremeet]

I need to go to bed: "after effects of the VX are amplifying the effects of the riba"

[dointime]

What you describe sounds to me more like what I got on SOC than what I got on VX.  My VX rash arrived dramatically and left me again after a week of antihistamines.  Vague itching continued but I never got another full-blown flareup in the 12 weeks on VX.  

Then I stopped the VX and started SOC and the rash I got was actually nastier.  It started on my front and neck and like with you it took it's time to visit every part of my body in turns.  Some parts looked like eczema.  Other parts like my neck just went a uniform angry red and I had to put ice paks on day and night to make the burning bearable.  I got really wore out and fed up inspecting it every day and seeing one part die down just to see another part start to flare up.  It was a total bummer.  That lasted the whole month of July and then gradually the inflammation died down.  I had to treat with Elocon steroid cream the whole time.  

I've no idea what would have happened next as I had to stop tx then.  I wish I had something more I could tell you that would help.  I'm scared to retreat myself as the thought of another rash like that is just too much.  I guess you just have to hang in there now.  The drugs will stop and if you didn't have skin issues prior to tx then you most likely won't have any lasting effects.  My skin is completey recovered now.    

dointime.
dointime

          

[susan400]

I had the VX rash early on in my short experience with it.  It was DEFINITELY the VX as I did not take the Riba when I was in Group C of the Prove 3.   I also have a Penicillin allergy that caused anaphyllactic shock, so Mike, I know what you mean about being sensitive to certain meds.  Anyway, my rash was just about the most unbearable thing of the short 5 weeks that I treated.  I don't know that I want to ever retreat using the VX again.  At first, when I was first pulled from the trial, I was so "I think I'll retreat again sometime using the VX + Peg-Intron + Riba...but now that I've had some time to pass and looking back at how miserable I was with that rash, I have no desire to revisit the VX again.   I've used Riba 7 other times and NEVER had any kind of rash to that type of degree.  I was even double dosing the Riba at one point and didn't get a rash.   I also know that the VX and the sun don't mix, not even a little bit.  

Susan

[dointime]

I am not at all keen to retreat with VX either.  I figure that I got bad rashes with the VX and the riba separately, so how could I survive the rash from both of them combined.  It's a bummer because the VX triple therapy is still the front runner of the new drugs.  We can only hope that they get the rash figured out or that other options will emerge soon enough for us to have an alternative.

dointime      

[wantinfo3035]

did any of youll taking vx beat the dragon?

[pln]

I was in prove 1, at my 6mo post I was still clear. So I say I beat the dragon. Good luck to you.
Pam

[APKhaos]

Another Prove 1, SVR at 6 months post-tx, and will have 36 weeks post-tx results taken in two weeks. I had some of the common riba rash issues during tx, but Lidex cream and Zertec antihistimine cleared it up in a few days. Wish I had that treatment earlier, because the itching was hellish! Nothing like the VX rash that mremeet and others reported, but not a wak in the park either.

Good luck, and good clearance. There's an SVR for everyone, but some are harder to find than others.

[Debbie556]

My husband beat it he is at week 60 and still undectable. He did get the rash. I do know it was hell for him. The benedryl did work for a bit but the Gold Bond medicated lotion reall seemed to help alot. You have to keep you skin hydrated for the inside out-- lotions and drink lots of water.. Definately stay out of the sun I know that if he was in the sun for any time or got sweaty he would be miserable..
Stick with it it does work and the VX is only for a max of twelve weeks the last twelve are just the standard treatment and I am sure you know that in itself is bad enough.
Talk to your Dr I am sure that they can come up with something to help you. Best wishes I know you can do it.

[becksta29]

i am on soc tx i started on 1200mg riba and 1.85mcg/0.5ml interferon.i had shocking rash and also had low wbc so doc dropped my interferon to 1.35mcg but from only cos of my low wbc not from rash cos i dint want to decrease med no matter what.i am still on 1200mg of riba and have nearly clear skin only a lil rash and itch here and there but as soon as i dropped on peg it was heaven for the rash.
not saying riba isnt the reason for u guys gettin rash but for me riba isnt the prob its the darn peg
u guys were also on interferon too yeah?mayb it was the peg all along.
i have never had VX so i have no idea on what that does.
good luck

[josiejo]

I don't post often......but yes I had the dreaded rash myself. I was in the Prove 3 trial in the C arm, no Riba. I lasted 12 weeks. My rash started about week 9 with purple blood spots on my legs. They did not hurt but when I took a trip to Panama and hit the sun, oh boy did I swell up. By the time I got back to Canada I had swelled up like a balloon and was immediately taken off the drugs and put on Prednisone for two weeks. I swelled up again and ended up in hospital again. The real kicker is that I was clear from week 4 straight through 3 months post! I was heart broken. I was suppose to get into the Boceprevir but was denied because of the Prove 3 trial.

I just had an email from my Dr at Henry Ford Hospital and he said that if he were in my shoes that he would recommend that when the drugs come to market to try the Telepriver again. He believes it will work, especially if I get all 3 drugs. If I had to do it again I would do it! To hell with the rash and swelling!
Joanne
Geno1a
Stage 4
Treated 4 times