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Avatar universal

Echoing mremeet's post of 10/3 regarding rash

Hi mremeet and all,  Just wanted to throw my $.2 in although I feel like you did an excellent job of responding to everyone's posts.  I am the other person in the study that mremeet spoke of with the dreaded "rash".  Clearly, it's too early to draw conclusions but I do suspect this may be caused by vx for several reasons. This rash is actually what is described as "confluent" meaning after the initial first few weeks, it no longer appears to take the form of a rash.  In my case, it morped into what would appear to be an extreme sunburn covering approx. 90% of my body.  On my  back, torso, thighs, arms, the bumps basically joined together so that it was impossible to see an actual rash any longer.  The skin burned very badly, as any severe sunburn would, was bright red and raised, i.e., the skin wasn't level and red as in a sunburn.  It was raised but no longer bumpy because it basically turned into one great big huge bump.  The major difference between this and a horrible sunburn is, of course, the itching.  It itched inside my ears, nose, over every part of my body as well as inside various other orifices.  Without any exaggeration, without my prescribed prednisone, I would absolutely have come off all treatment at this point.  I've been on prednisone for 1 week now and am still sitting here itching as I type.  To be continued.

18 Responses
86075 tn?1238115091
so sorry to hear about this PDS, hope that predinsone or whatever works, that's awful...one question, how many people got this, do you know? in your group? inquiring minds...I hope youre doing better aside from all of this, best of luck to you you know...
Avatar universal
Pds, I am sorry to hear you are having a rough time. Did they drop your riba too?

It seems to have made a difference for travlemom, as the rash came back when the re-introduced the riba (this from a thread below)

"I am in week 5 on the VX-950, and have been taken off the Riba for the time being...I broke out in an intense rash all over my body as well on day 4 of starting...we stopped the Riba and then restarted a week later at a lower dose...the rash started to appear again..Maybe it is a combination of the Riba and the VX-950? Just a thought...Right now I am just on the VX and INF...Hopefully they will allow me to continue to participate."
Avatar universal
Hi! I got your message yesterday and was going to call you or email you today.  Actually, still will.  The second part of my post answers your question, I think.  But, in the meantime, thanks for checking on me...means a lot cuz sometimes I've been so sick there was no coming to this board or sitting up at my computer.  If it weren't for you and the people I talk to on a daily basis from the study, I'd feel completely cut off sometimes.  I'm gonna email you in a little while.

It's good to hear from you, Char
86075 tn?1238115091
I really, really hate to post this, cause it's mere speculation, but then I figure, there's a lot of speculation that goes on around here, and as long as you refer to it as such...

Also I hate to mention names or contacts (I've learned that lesson now) because then certain people only think youre grandstanding, etc...and it's not about that...a long time ago, when they first mentioned this drug, I got into contact with one of the inventors, (CTOAN, you might know who he is)I will call him Dr. Michael and not use his last name...he told me that before they even sold this drug to Vertex, that they tried small trials within the university...and even the subsequent other trials, with just the pure 950...and the only reported side effects were some nausea and a little bit of upset stomach, nothing else...and that was only reported by a few of the participants...

No one has to believe me, but I'm just putting this out there anyway...I wonder if this is caused by the mix of drugs? They are probably just trying to figure these issues out...I guess we'll all know after awhile anyway, time will tell....I like many other people, want these drugs to work out better then current treatment so everyone will have a better time of it...my fingers crossed for all who are in the current trial...
Avatar universal
Your rash sounds nasty, to say the least. Really sorry to hear you are having such a rough ride. Us VX labrats are into the unknown to some extent, I guess. Have not heard of anyone in my trial group having this problem, for what thats worth.

Keep the faith guys..... SVR HERE WE COME!
Avatar universal
Sounds horrible.  Also sounds like a bad case of poison ivy which I had last summer and was on Prednisone for 4 1/2 weeks. Gosh I sure hope your treatment works on it.
Avatar universal
Hi CTON,

I went to my dermatologist last week.  She told me to immediately stop all meds, that this was no everyday run-of-the mill rash and actually called my study nurse immediately.  Of course, I was loathe to stop all meds and didn't.  In the meantime, thinking it was the dreaded "riba rash" that we all hear so much about, I had already, under no one's direction, cut my riba from 1000 to 600 for approx. 5 days prior to going to my derm.  It made zero difference.   When I saw my study doctor last Thursday, he told me if it wasn't significantly better by this past Monday, especially after being on predisone for 5 days at that point, I would have to come completely off the study.  

After taking my Thursday evening dose of vertex, it was back full force on Friday am, even though after taking first dose of predisone on Thursday, it was better within hours.  I did my own little experiment over the weekend that I'm not comfortable relaying on this forum, but suffice it to say, imo, "tentatively" it is not the riba that is causing this rash.

Again, I'm not sure that this is the end all of the possibility of vertex.  This rash, if it is controllable, and if it doesn't adversely affect the outcome of treatment, may be a sx that has to be dealt with.  If it turns out to be a valid sx of vertex and that is still a big if, it doesn't necessarily negate all the good and positive things we're hoping for from vertex. If we know what to expect, hopefully no one will have to suffer with it as long as mremeet and I did.  But, I think we'd be behaving like ostriches not to consider the possibility....what do you think?
Avatar universal
If your dermatologist hasn't mentioned that side effect (can't remember the name lol), maybe you should mention it to them, or the study doc. It could be important, especially since it is a known side to IFN.
I shouldn't have assumed when your shot date was. I know many choose Friday's, and I thought some in the trial (including you) were Monday.



BTW, OT, HGSI announced a 2000 patient study on Albuferon today, in all genotypes. This is phase 3, and the results of this would likely be used to file for approval. It is for 48 weeks, with 24 week post-tx SVR data. So far, it has done well, especially when dosed once per 2 weeks.

Good info of how long each drug stays in the system. One of the criticisms of not only 950, but other PI's, is their quick excretion, thus more dosing. Ritonavir in early studies has shown to boost PI's though, much like it does for HIV drugs.
Avatar universal
I am really sorry to hear you are sufferring like that.
Another thought I have, has to do with IFN. When is your shot night?
I assume it is after the last incident, but just wondering, because IFN is also known to flare up autoimmune conditions.
Avatar universal
I should add, that meds build up in one's system, and I don't know what factor that would have. IFN has a much longer half life than 950.
Avatar universal
I just wanted to say I am so sorry you are going through that. It must be brutal. I hope you get some relief soon.
You are such a brave soul. I really appreciate your courage and  your determination.
Avatar universal
One side effect of IFN is  erythema multiform. http://www.aocd.org/skin/dermatologic_diseases/erythema_multiform.html

This seems to have some similiarities to what you are sufferring with. Notice the picture where the redness is covering the front of that person, and it mentions how it is prevalent on the back also.
Avatar universal
Thank you guys for your words of support.  APkhaos, I'm glad to hear you haven't heard of it in your study to date.  That's a good sign and here's the thing, whether it does or doesn't turn out to be a sx of vertex or vertex in combination with one of the other drugs, just like all other sx, it doesn't mean that everyone is going to get it.  I think that no matter how it turns out, we all have to put it in perspective, but..... yeah SVR here we come!!!

Kalio, that's so sweet of you.  I wish I deserved it....I'm really not that brave.  I'm actually a big fat wimp.   lol

Pdilly, I feel bad for you with that poison ivy cuz it sounds real similar.  I'm telling you, forget the torture for political prisoners, give em a big dose of some kind of nasty rash.  It'd work every time.  (Totally just kidding about that, btw)  lol
Avatar universal
I just looked at the picture and read the info on the link you provided.  What we're looking at in that picture would more resemble what my rash looks like now a week into the predisone.  It was solid red and raised as in one large "run-on" bump.  Apparently that's the definition of a "confluent" rash.  But, at this point, especially on my arms, it does very much resemble the link that you provided.  Please keep in mind though, that at this point, the itching is 80% gone and the appearance of the rash is probably 65-75% better so the picture isn't an accurate depiction of the rash at it's height.

My usual shot night is Wed.  Because I didn't have a clue what  the culprit was last week, I put off my shot until Friday a.m., 36 hours after I should have done it.  So, at it's worst, it had been 9 days since my prior shot.

BTW, just for your info, my study doc suggested that if I stopped my riba "today", it would be in my system for approx. 1 month, vertex would be out tomorrow and peg would take approx. 3 weeks.  Just his take on it and for what it's worth, I thought I'd pass it along.  Not a big deal, I don't think, one way or the other.

I should mention though that he did email the third party sponsor to actually have me unbllinded because he did feel unblinding was warranted in this situation.
Avatar universal
Hello again,

My derm is the doc that mentioned that term "confluent".  My study doc concerred.  I'd actually never heard it used before but it does seem to be appropriate.

When I first started the study on Aug. 7th, my shot date was obviously Monday, August the 7th.  Somehow, when they were dispensing the meds to include the date of Monday, Sept. 4th, we all missed the fact that that was Labor Day and they'd be closed.  So, my usual Monday appointment got pushed back to Tuesday, Sept. 5th, which meant so did my shot.  I was missing so much of my work week feeling sick after the shots, I asked the following week if I could do shot Wed., as opposed to Tuesday, thinking I'd at least have Monday, Tuesday and Wed. to get some work done.  Study nurse said that was fine and that's how I got to Wed.  Probably over explained that but wanted to let you know I'm not throwing out answers wily nily.  lol

Thanks for your updates on the other drugs.  Interesting stuff, as always!  

I'm starting to fade quickly here and am going to say good night.  I look forward to talking with you again soon.

Charlotte

  
Avatar universal
best to you, and hang in there.
Avatar universal
I'm so sorry you are suffering so much!  I'm getting itchy just reading this thread.  I haven't had any symptoms to speak of (so far) compared to yours...but then again I've always suspected I'm in the control group and not really getting vx-950.  I really hope the prednisone clears it up and you don't have to go off the meds.  Good luck to both of you!
Avatar universal
My heart is just BREAKING for you. How extremely HORRIBLE to have to suffer so dayum much like we don't already!

If you can think of anything AT ALL that I can do to help you, PLEASE let me know.

I'm just so sorry that you have to go through this. You've been such a great wonderful person to everyone and certainly don't deserve it. SAme to Mr. Meet.
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