Rash Already???

[Tippyclubb]

Well, the sx have started and I'm only 10 days into tx.  Its 1:50 AM and wide awake, insomnia already.  Wonder how I will get up for work in the morning.   The rash has hit me already.  Hundreds of little red bumps from the elbow to my wrist.  My bubble has been burst, and the reality of treatment is just beginning.  Just didn't expect it this soon, thought I'd get a free ride for a few weeks.  Not---Lol--I have to laugh.....

I think most people take the Riba 12 hours a part, but I am taking three at 8 AM, and two at midnight.  Within eight hours I am taking five Riba pills. I'm thinking this is why the rash is starting so soon.  Plus my chest area and face is red, like its sunburned.  When I questioned the trail nurse about this she just said that's the way Vertex wants it done.  Any thoughts on this?

I'll call the trial people in the morning and see what they say.  Thanks for listening, didn't want to wake hubby up, but I got very alarmed seeing all these bumps.  They came within an hour.  In the future I think I'll start doing the journal thing so I don't bother everyone all the times when new sx appear.

[HCA]

It's not the riba which takes several weeks to accumulate serum levels.
The word 'Vertex' gives the clue
You have the telaorevir rash wich affects about 9% of patients.
It's treated with ointment which is usually succrssful
The trial people will you in take photos and give you medication.

[copyman]

Why are you taking the Riba so late. This is probably the reason you can't sleep. Riba is known to cause insomnia.
Telaprevir is very important to take 12 hrs apart but not the riba. I took my riba & telaprevir pills together just for convience but really did not have to.
Here was my schedule:
6am, riba & telaprevir
2pm, riba & telaprevir
10pm, just telaprevir

I got the itching and mild rash around week 7. It was caused by the riba not the telaprevir. I have completed the 12 weeks of telap and now on SOC meds and still have the mild rash and itching so it must be the raba rash that i have.
Good luck

[BklynBoy81]

Hello im in the Vertex trial also.. i take my riba pills at 8am and 4 pm everyday the study drug every 8 hours... Wonder if they have different protocols for each clinical research place... I did my second shot yesterday... so im like 9 days in.. i feel pretty good other than my mind being all scrambled up and some fatigue... the first shot sucked, i had the whole 9 of sx just for the first day... like me its very early in the trial so i hope you can stop the rash.. other people probably told you to try coconut oil it actually worked for me.. i did have a little rash for a couple of days, it probably wasn't as bad as yours... hope the rash gets controlled let me know what you use... have a good day..  

[jacksonblue]

hello tippy i took rib at 700am tel at 730am tel at 330 pm rib700pm and tel1130pm you need to adress the rash immediately it can become a medical emergency the clinic should have you see a dermatologist i would assume the rash is from tel  the insomnia is from interferon i suffered from it every time i treated if you can ride it out it may get easier after a month or so if not you can talk to doctor and they can give you something must be careful very habit forming and easy to need larger does to sleep maybe use them only when necessary i have treated 3 times in past and now in week 16  2 and third treatment  needed lorazepam to sleep ended up on 4 milagram every nite this time i rode it out and after 4 or 5 weeks i began to sleep better now i still use 1mil lorazepam nite of shot and if need something later in week switch to immovane as not to build up tolerance seems to be working for me very easy to end up needing sleep aid every day i did get a rash at week 8 only lasted a day or to was not to bad had alot of itching good luck and hang in there regards

[Isobella]

I'm in week 25 of a Vertex study also.  The little red dot rash isn't from the telaprevir.  That's riba.  But definately call your center-they will prob want to see it.  The tela rash has a sudden onset and is more of a spread out blotch....at least according to my study nurse.  

I had the red dot rash that itched, the red dot rash that didn't itch and the invisible no-dots that itched.  I was told all were from the riba.  I stopped using all products on my skin except for Aveeno baths, a mild cortizone cream, a fragrance free all natural moisturizer and dove soap.  The aveeno worked best.  Now I use coconut oil in my baths and on my skin....it's awesome...but it would have irritated my initial rash.

It is crucial to take the telaprevir at the proper times.  The riba not....just try to take it with your 2 largest meals.  I do breakfast and dinner....as long as it's not past 8 pm.  It can be keeping you awake....I called it Riba-crack and spend many nights in the beginning re-arranging furniture, lol!

I also use Atarax for itching.  It won't dry you out as badly as Benedryl.Helps with sleeping, too =)   And don't forget to drink lots of water.

Let us know what happens......

Take care,

Izzy

[mkp13]

Definitely get the rash looked at by your study doc.  He/she can probably tell you if it's from Riba or Telaprevir.  If it's Telaprevir, they'll photograph it and either give you meds or a referral to a dermatologist who will give you meds.  If it's Riba, folks are right that lotions might help.  I use Aveeno also and recommend it.  When my rash was the worst, I'd take Benadryl at bedtime so I could sleep.  The good news is that for me (and hopefully for you) the rash didn't stay very bad for very long.  I'd get it mildly on-and-off later, but never like that first bout which lasted a few days.

[Tippyclubb]

Hello im in the Vertex trial also.. i take my riba pills at 8am and 4 pm everyday the study drug every 8 hours... Wonder if they have different protocols for each clinical research place...

They must have for I was told to take Riba at 8 am and midnight.  Kind of odd and wonder why the difference?

To: Copyman
Why are you taking the Riba so late. This is probably the reason you can't sleep

Trial people told me to take at midnight.  I will ask again when I get blood done  Monday.  

The rash did get better, but its still there.  I was in our hot tub Tuesday evening and wonder if this had anything to do with it?  Maybe the heat brought it on.

[BklynBoy81]

ok look at your subject medication diary, you probably have to write the times you take every pill also... on the Telaprevir page it says to take the pill at 630am 230 pm 1030pm  how ever you do is your choice... but the Riba page its says 630am and 630pm..

[jacksonblue]

i dont think hot tub a good idea must take study drug as they say very important you should ask about riba maybe try space them 12 apart in begining after that not as important i think others have said min 8 hours apart

[Tippyclubb]

Yep, your right that's what it says.  I asked her why not taking 12 hours apart and she said they wanted it done this way.  All I can do is ask again Monday.  I am very concerned about the 16 hour span.  If I were to change dose to every 12 hours, would they know?  Could they tell by my blood work?

I have to be careful how I handle this with the nurse because I signed papers I wouldn't be in these Hep C rooms.  So I can't say everyone else takes it every 12 hours.  

[BklynBoy81]

i understand about the internet thing tell her the riba pill is giving you insomia and you dont sleep at all at night... tell the nurse you need to work to make a living and you need sleep to do that.. ask to take it a few hours earlier..  i also wonder why you only take 5 riba pills?? i take 3 730 and 3 330.. i dont know much if it will affect your blood work... you definil have to talk to them again on monday..  and for real i dont know if you should be listening to me LOL im not the study nurse so i dont want you to do the wrong thing... but i think midnight for the riba pill is to late..

[Tippyclubb]

I'm only taking five Ribas because its weight base.