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Vertex -Triple therapy wk 8 itch vs rash

Hi All

Currently on vertex trial geno type 1 ist time new to this so not sure about exact details (but learning) Just after wk 8 only one reduction in peg around week three, tolerating full med. Slight rash day one (little) ithcing sice day one but coping.
Monday started itching, couldn't sleep more I tried not to scratch the more I wanted to. Spoke with Nurse and seen doc prescribed antihistamine certirizine 10 mg and Eurax, unfortunately no change.

Sen Doc again for a 2nd time ,he in consultation with the Research nurse and consulting Doc prescribed  another  steroid cram and piriton.

This was around Wed, continued thoughts of throwing in the towel, but the nights alone have allowed me to read through some of your battles and struggles. Was driving later that evening again thinking cant go on. Then noticed the car registration right in fron of me, last three letters where SVR letters where familiar to me, remembered what the stand for, gave me hope to continue with the battle. so crazy

Thursday Nurse phoned me, she had arranged an appointment with the dermatologist due to the rash mostly on arms, and various spots over the body. Like posion ivy, felt hot, itching till they bleed,rash didn't bother just the continued itch So tired getting mixed up, not slept since Monday sitting here at 7.29 am Sat.

Seen Dermatologist she asked if there where any reduction in meds, no reduction she examined the rash prescribed Elocon x1 daly on raw areas, parts of the rash raised  circles that I have scratched have burst/bleed, paraffin for other areas and menthol which she said could be used whenever to ease the itch (they had to order that) will post it out :(
Prescibed hydroxyzine 25mg take in evening.

Was lookin forward to it with the hope I would sleep, took it then meds at 11.00pm placebo/telepriver nodded off then woke up around 1.45am itching. Again havent slept. Getting to know my itch and rash, spending so much time with it.
Starts with a red area which becomes hot, you scratch it then the raised bumps come up, getting to grips with trying not to scratch it, using ice packs in the battle.
Though I would sleep, going on 5th day dont know whether to try and contact Dr see if he can prescribe something just to get a few hours rest. The dermatologist said could take a 2 weeks to get it under control, she didn't think it was severe enough to stop treatment (releif).Difficult but I am determined to see this through.
i have to take my meds at 8.00am riba and placebo/telepriver  telling myself miss a dose,may come back to haunt me. Take them, its just a thought.

Think I am so exausted cant even drop off, no relif from the itch and rash doen't help.

Be grateful for you all to share your experience or thoughts.

thanks

Nelh

P.S excue the spelling.
8 Responses
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544172 tn?1216520164
I am also on the vertex geno 1 trial...and around week 8 developed the rash (upper arms, chest,shoulders, back, thighs)...with itching, burning, warm to touch....only releif was ice packs...I bought a bunch of diffent size bags of frozen peas and stuffed the family size down the front and back of my robe and the reg. size down the arms...sat in my recliner looking like a big snowman. Took benadryl until I saw the trial coordinator.

I'm probably featured in a few medical slides because the coordinator photographed the affected areas as well as the dermatologist.....I am grateful that it wasn't on my face!

Had skin biopsy....dermatologist prescribed hydroxyzine 25 mg., triamcinaolone acetonide onitment 0.1%, and fluocinonide 0.05% (for the worst areas).    My family greased me up twice a day like I was a thanksgiving turkey!  I also took Ambien to help me get some sleep....but not at the same time as the hydroxyzine as it makes you drowsy.

The good news is that the rash went away after about a week of tx....  Of course I don't know which arm of the trial I am in....but after week 12 no more problems.

I am a red-head and fair skinned. Starting week 22....hang in there it will get better!!!!!
Don't Scratch.

Helpful - 0
Avatar universal
Thankyou all for the support (means a lot)

Just learning, first time on tx,if i hadn't stumbled across this place and learnt something dont think I would have got through that wk.
Hell on earth feeling better manged get few 1/2 hrs increased hydroxyzine reduced meds slightly ( back to normal this morning).

Putting on the creams and just so grateful. Think I was just anxious, possibly riba rash took the advice you all so kindly gave, also turned of the heating.

cheers
Nel
Helpful - 0
Avatar universal
Thanks all
Spent day out the house absoulutely exausted. Think since this is all new  and frist time tx have been liittle obsessed by it all, wondering if it is trial drug. I am fair skinned so probably usual tx.TNot focus so much on it. :)
Took some extra antihistimine going to bed. Skin still itchy but throwing  the cream on.

thanks guys

Nel

Helpful - 0
683664 tn?1330966324
Gosh, sorry this is so bad for you!!  I know the itch is what's keeping you awake, but you must be so exhausted by now!  As for the meds, the hydroxyzine (also called Vistaril, Atarax) is something I'm familiar with, have given it many many times when I was working as a nurse.  I think I've taken it once or twice also though not recently.  I know that the dose can range from 25mg to 100mg.  I cannot tell you to increase the dose of your medication, but you can certainly ask your doc or nurse if it would be okay to do that.  A higher dose might help your itching and it's a sedative as well.  Please do consider calling your doc if you can reach him today!  You really need your sleep!
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524608 tn?1244418161
So sorry to hear how bad the itching is...but like Rocker said...it could be an indication of what you are getting....so hang in there

Another member here was in a Telaprevir trial had a tough time with the rash also had some dose fluctuations on a telaprevir trial and went on to SVR!!!...He has lots of post about it....look him up and read all his posts to see if there is any info that could help you.  Mremeet   http://www.medhelp.org/personal_pages/user/151263

I have just finished 24 weeks (since Thanksgiving) in a Telaprevir trial...I have been off the meds and now have bronchitis so I don't feel any better yet. I didn't get the rash but did have a crazy itch sometimes...I found relief in a Shea butter cream...I don't know if it would help you since you seem to have a severe rash but I will offer up anything I can to help...I make my own soap...I don't know if that has anything to do with it though....I'm also Italian...Maybe that makes me a bit greasier...or thickheaded....oops I meant thick skined...

Rocker and Isobella have both given you great advice...I hope you find something that works
Helpful - 0
412873 tn?1329174455
meant...endorphins kicking in may help
Helpful - 0
412873 tn?1329174455
So sorry to hear you are stil having such a problem with this rash.

My experience with this rash has been  mild but I have had a life time of experience in dealing with odd skin rashes so I think that helped me keep things at bay.

When I first got the rash on tx, I immediately stopped all soaps.  Cut showering and bathing to down to every other day.  I take a tepid bath with aveeno and then use a thick lotion with nothing added-likes scents, ect.  I also used a prescription cream...and with that being consistant is very important.  Last night I was out of aveeno and used the coconut oil in my bath...it was Amazing!!  Might try that...it leaves your skin so moist you feel you dont need a moisturizer afterwards...but use one anyway!!!

As you have probably found, scratching makes it itch worse, so anything you can do to not start in the first place is good.  I have found sometimes if I ignore the itch....it will go away within 15 minutes or so.  Doesnt always work, but if it does even once...that's still relief.  Maybe go outside and take a little walk when the itchies hit....endorphins kicing in may help.

I know this may all sound like hooey....but, hey....whatever works, right??!!!

If this  rash is an indication of you getting the "real deal" then ya wanna stay on it as long as possible.  At week 8 you will switch your meds out and either get the placebo or the real deal for another 4 weeks....and after that....you will be amazed at how much better you will feel =)  It will all be worth it in the end.

We're all pullin' for ya!!!  Keep us posted.

Izzy
Helpful - 0
Avatar universal
At least it looks like youu are getting the real drugs for sure.with all that rash and itching....knowing you are gettn the real stuff...stick it out...no matter what...the other alternative down the road   is worse....maybe try some organic virgin coconut oil and natural products...try installin a shower filter to remove the chlorine...it drys skin.
Helpful - 0
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