itchy

i am currently in my 2nd week of treatment and i'm doing fine except for my legs itching really bad.  i don't have and body aches but my skin on my legs has tiny red bumps that itch like crazy.  anyone out there have this experience?

[his3707]

get your doc to prescribe a good cortisteriod and keep on top of it.

[spectda]

What drugs are you treating with?

[belle19]

i'm in a double-blind clinical study.  i'm getting peginterferon and ribavirin.  i may be getting tegobuvir or a placebo.  not sure on the 3rd drug.

[spectda]

Some people get a rash from ribavirin. Does your trial agreement say anything about side effects from tegobuvir that includes rash? Hopefully someone else who is using or has used on the same meds as you will chime in.  Have you contacted your trial nurse about it?
Good luck,
Dave

[belle19]

thanks for your feed back.  i'm calling my trial nurse in the am.

[researchmonkey326]

Are you in one of the Gilead trials?  The one that I'm in is Tegobuvir and another study drug along with SOC.  I have had a terrible time with the rash and my study nurse and doctor tried several remedies but ended up sending me to a dermatologist because NOTHING helped- not prescription creams, not oral steroids, nothing. My itchiness is on my scalp and back mostly but the rash just about covers me.  My second trip to the dermatologist, he looked at me and immediately decided I needed a steroid shot. - Kenalog 40.  It took a day or so but calmed everything down.  I know that my study nurse and doctor were afraid that I was going to have to drop out of the trial and were relieved that it helped.  It will last 2-3 weeks and I will get another as soon as it wears off - I am 15 weeks into the trial and not willing to quit at this point.  Good luck.  I have found that my study nurse has been super responsive throughout the trial -I hope yours is the same.
Debra

[curiouslady1]

What about sides from the steroid shots?  What might be expected?  I am about to start and have LP and OLP already which causes itching so it can only get worse I figure but don't trust trials and will probably just take the triple treatment if insurance will pay that is.

[researchmonkey326]

I've had no side effects from the steroid shot other than parts of the rash drying up and starting to peel.  I was so desparate to get relief, I would have tried anything.  When my study doctor got it okayed by Gilead I was thrilled.  Don't get me wrong - I still itch but it was pure torture before - now it feels like I can make it for the next nine weeks.  

[curiouslady1]

Thanks.  Keep us informed on this thread.  Sometimes there are sides from chronic steroid use.  I also just read that itchiness from the riba can resolve in newbies just by stopping it for a few days and then resuming but I guess you can't do that in a trial very easily.

[belle19]

yes, i'm in one of the Gilead trials.  i have some cream and it helped.

[sherritaylor12]

Hi, I am almost 3 weeks post treatment and the rash is still bad, the hair is still falling out and the monitor says it will for at least another month.  But I am still und!!!
Is your hair falling out?
Sherri

[researchmonkey326]

Hey Sherri- three weeks already? Yes my hair is fallIng out big time and I am wiped out. I did shot #15 on Saturday. I told them last week that I may randomize myself into the 16 week arm.   I am so happy that you are still UND. How is hubby doing?
Debra

[sherritaylor12]

Hi Debra,
Hubby is und since week 12, this is wk 19 for him, he is going to try and randomize at wk 24, he has had all he can stand.  We both have ALL SE.  Hope to be und on Wed. for us both.
Good Luck,
Sherri