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Avatar universal

VBX-950, heart problems???

i called a hepatologist that was the first doc i saw after finding out i had HCV. i now see a differnt doc closer to home. although the doc i see now is involved with several trials he does not have the VX trial. So i called my old doc to ask if he would be having the VX trial and of course was not able to speak to him directly but talked to one of the fellows which told me they will have the VX trial there. He said he will put me on the list. he said there was some concern with the sx and i said about the rash? he said no there was more concern about heart problems! said they would know more after the boston meeting. has anyone heard of heart problems with vx-950? this was the first i had heard of it and was very susprised. thanks for any info on this.
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Avatar universal
Oh, my bad. I made a big mistake. Those are the side effects of SOC (Peg and Riba) I listed :)
http://www.pegasys.com/resources/safety.aspx
http://www.drugs.com/sfx/copegus-side-effects.html
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The point here is that all these drugs are poisons. Sometimes it's necessary to take them. And sometimes it might not be. The old "treat or not to treat debate".

As to Telaprevir, right now it falls into a category of drugs that's our best hope. At least in the short term.

Like Andriamo, I hope this thread does not scare people away from the drug based on what someone said to someone to someone. The drug is in trial. Hopefully it will get FDA approval. If it turns out Telaprevir is not safe -- and that's a relative word with all these drugs including Peg and Riba --  then the drug will be pulled and never make market.

-- Jim
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Avatar universal
Andiamo: I worry that this thread might influence someone not to take it and that could end up as a very bad decision made for the wrong reason.
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Andiamo, why I initially agreed with you, on reflection I think it's important that we call a spade a spade, not pull punches, and tell people exactly what they might be getting into. For this reason I spent some time researching Telaprevir and its potential side effects. This is what I came up with and it's quite a list and should rightfully make people pause before treating:

Flu-like symptoms (including fever, chills, muscle aches, joint pain, headaches)
    * Tiredness
    * Upset stomach (like nausea, taste changes, diarrhea)
    * Blood sugar problems (may lead to diabetes)
    * Skin problems (like rash, dry or itchy skin, redness and swelling at injection site)
    * Hair loss (temporary)
    * Trouble sleeping
* Risks to pregnancies
    * Mental health problems (such as irritability, depression, anxiety, aggressiveness, trouble with drug addiction or overdose, thoughts about suicide, suicide attempts, suicide and thoughts about homicide)
    * Blood problems (like a drop in blood cells leading to increased risk for infections, bleeding and/or heart or circulatory problems)
    * Infections (which sometimes cause death)
    * Lung problems (like trouble breathing, pneumonia)
    * Eye problems (like blurred vision, loss of vision)
    * Autoimmune problems (such as psoriasis, thyroid problems)
    * Heart problems (including chest pain and, rarely, a heart attack)
    * Liver problems (rarely, liver function worsens). Patients with both the hepatitis C virus and HIV can have an increased chance of having liver failure  treatment. Change in a blood test that measures liver inflammation occurs more often in patients with hepatitis B. If you have a rise in this blood test you may need to be watched more closely with additional blood tests.
Severe allergic reactions (rash; hives; difficulty breathing; itching; tightness in the chest; swelling of the mouth, face, lips, or tongue); black, tarry stools; changes in hearing, taste, or vision; chest pain; dark urine; decrease in the amount of urine; fever, chills, or sore throat; hair loss; irregular heartbeat; joint pain; loss of appetite; muscle pain or weakness; numbness or tingling of arms or legs; prolonged nausea and vomiting; rapid breathing; severe headache; severe stomach or back pain; shortness of breath; sinus problems; thoughts of suicide; trouble sleeping; unusual bruising or bleeding; unusual mental or mood changes; unusual or severe tiredness and fatigue; vomit that looks like coffee grounds; weight loss; yellowing of eyes or skin.
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Well, that's it folks. I gues one should think twice about taking Telaprevir.
Helpful - 0
Avatar universal
Hey, I forgot to tell you congrats on your VL #'s!!!!
"So far, Telaprevir does not have side effects as serious as SOC." and so far, it appears it doesn't work very well without soc...
PS: I can identify with my guinea pig analogy, being on almost 22mg/day of riba(double what some believe is the low end of weight-based @ 10.6) is esentially uncharted water as well..
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220090 tn?1379167187
I agree, trials are a risk not everyone should take.  I did it because of my age and the stage 3 bx.

I was referring to once it is FDA approved and should have stated that.  Not that side effects won't turn up once a larger group takes the drug.  There are no guarantees when we take drugs as powerful as these.  So far, Telaprevir does not have side effects as serious as SOC.
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158241 tn?1237719523
I often notice arguments in this forum like "I talked to someone who is very very clever and he thinks the same as me". Wow, this is really a convincing argument!
I talked to this clever guy too yesterday :-)
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Avatar universal
"I worry that this thread might influence someone not to take it and that could end up as a very bad decision made for the wrong reason." I agree, but of course the opposite rings just as loudly, these are trials, you were/are a guinea pig and are taking on the risks of a guinea pig, and that fact should not be glossed over either.
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