Triple treatment study and side effects. Help!

[sph0611]

Okay, I'm in week 11 of triple treatment and frankly miserable. The first two weeks I breezed through. Then I was hit by a side effect truck. I have had every side effect listed except vomiting. Yay for me!  I'm geno type 1 and never been treated before. I was feeling so bad at week 5 the study doc put me on 20mg of celexa, an antidepressant. That worked on my emotions but also cause facial swelling. I'm weaning off the celexa now. They also reduced my ribavirin 2 weeks ago because of low platelets. I haven't felt any better. My cardiologist ran blood work for me and my levels are in the normal range as of last week. Again, yay! She also said my vitamin B12 is extremely low. Explains my lack of wanting to get off the sofa. I've made a decision to to stop all meds at week 12. There are so many other treatments on the near horizon that don't include peg or ribavirin and have little or no side effects. I'm just done!  Oh wait, I didn't mention my rash which is everywhere and has gotten worse over the last 2 weeks. Been to the derm and using clobitisol but really not helping. I'll be contacting study doc tomorrow to make a visit. I don't really have a question I'm just looking for someone that can sympathize. :(

[sph0611]

Just got back from the hep doctor. Though the study nurse said my rash was severe he called it moderate. Not surprised. He did tell me that my RVR (rapid viral response) was 25 at 2 weeks and that I was UND at 4. I'm officially off the Incivek but continuing with the ribavirin and peg until lab results from blood work that will be done this Thursday. They want me to continue until I get to the 12 week mark. I can do that. I could be randomized to continue rib and peg for another 12 weeks or discontinue all meds. It's simply the luck of the draw. I know the longer treated the better but I also know the new group of meds are so much easier to handle though not FDA approved yet. I've always been a "good girl" and have no idea how I contracted this lovely disease. Well, water under the bridge.....

[Idyllic]

Purple lips? Purple lips could mean a lot of things (as shown in this list: http://www.buzzle.com/articles/purple-lips-causes.html). Notice  one of the line items on the list is Anemia.

I am not suggesting you are anemic but that is why I wondered if the study people specifically told you they were lowering your dose of Ribavirin due to low platelets.  Both Incivek and Ribavirin can cause hemolytic anemia. I understand studies often have their own treatment protocol but one intervention for triple therapy with Incviek is to reduce the dose of Ribavarin when Hgb values of ≤10 g per dL.  

I think you mentioned in another post they dropped your Riba dose from 1000 to 600 (from five pills a day to three). And you wondered if you were wanting to stay on the couch due to low B12. I may be going out on a huge limb here but based on these few things it is possible you are anemic. The only way to know for sure is to ask. If they will not tell you specific lab values will they confirm whether you are exhibiting signs of anemia?
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Incivek can really be rough for some people. I am so sorry your rash. Knowing what we know now about Incviek I am stunned (and angry on your behalf) that your rash escalated to this point.

I am glad you finally saw a Derm and received the right meds to treat your rash. Is this your last week on Incivek? I know you continue on with either a placebo or Peg/Ifn and I hope whatever path you take works out.

I hope you have the chance to let us know how this all works out.
Hang in there ♫

[sph0611]

Another new development, my lips are purple. About 4 weeks ago they lowered my rib dose because of low platelets. Can this purple lip thing be related?  

[sph0611]

I am in a study where they do not tell you your numbers. I only know at 4 weeks I was given the go to continue. I went to see my derm again last week and the look on his face was of horror. My rash is seriously out of control. It's so bad that he intimated it was not healthy to continue. I have made the decision to stop the Incivek. I completed 11 weeks and 2 days. I feel so awful on all levels, exhaustion, nausea, itchy, emotionally, low blood pressure  I'm going to see the study doctor first thing tomorrow. I hope I an start feeling better soon.

[Idyllic]

"reduced my ribavirin 2 weeks ago because of low platelets.."
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What meds are you taking? Normally it is the Interferon that lowers platelet count


I do not know how studies work or about your medical condition but It kind of sounds like the study people did not prepare you what to expect as far as triple therapy in general is concerned. What you are describing is not unusual or uncommon. It does sound like they waited too long to get you the meds to treat your rash.


If you are undetected it might be worth hanging in there since you have come this far. It sounds as if you are taking Incivek (Telaprevir) when were you UND?

[BoceprevirGal]

  Ah, so sorry for your pain, I did Victrelis, but it sounds like you are on the Incivek?
   How low were your platelets?  If you are on Incivek, your rash has a high chance of getting better,once the 12 weeks of Incivek are over.  
   I did have some relief with Atarax. Try to take it one day at a time, instead of looking into the future, that's how I got thru my 28 week sentence.
  You are right, there are new meds on the horizon, but there is also uncertainty with that. I chose to Treat because my platelets began to slip, before my Treatment~  good luck

[sph0611]

Thanks so much for the kind words. Just got back from the dermatologists and he was very sympathetic. He prescribed 3 meds, atarax 10-20mg once a day, clobetasol twice a day and doxepin10 mg at bedtime. Left a message for the study nurse and of course she hasn't called me back. I plan on slathering myself with the clobetasol immediately and taking the doxepin tonight. Hopefully this med isn't contraindicated. If anyone knows anything about this please let me know. Feeling better about the next week......I think.    

[nightbeacon]

Happy New Year SPH and I'm very sympathetic.  I was forced to stop trip therapy at week 10.5 for telaprevir and week 12 altogether due to a DRESS reaction (allergic so badly that my eosinophils started attacking my organs...ewww.) BUT that was nearly 3 months ago now and so far I am still completely undetectable... so I'm peaceful for now. Truthfully, I was relieved when my docs insisted I stop treatment because the side effects are so different in everyone and I was so red it looked like I'd been in a fire. If you're at rope's end then by all means, what's on the horizon might be a better choice right now. I deeply respect everyone who starts the treatment because it's tough from day 1. Give yourself so much credit for coming this far... hooray for you! Hang in!

[rambleon40]

You know your body.  Listen to it.

[working dog]

if you are und and have been then that would be good...my sides on incivek were really tough....i was taken off riba close to week 5 for 10 days....from bad rash...low hgb...then i went right back to it...boy was i sensitive to the drugs....i did stop incivek at 11 weeks two days....your on week 11?...tx will be more tolerable after the triple....i would hang in there and try to cure...i did get svr and that is really nice!....

[orphanedhawk]

You don't mention whether you are undetected for the virus.
There always is the chance that if you are, you may remain undetected after you stop treatment. It's happened before :)

As far as fatigue goes, low vit B or not, exhaustion is a major side effect, probably the most common.

Do start walking, or doing some kind of exercise. Sometimes we need to force ourselves but it will help.

Good luck.