I guess it is a step in the right direction for Vertex but to me it is the naivete of treating physicians - and patients who put faith in them rather doing independent research. I wish it were not like that but with Hepatitis C and Triple it seems to be the case. I cannot speak for any area other than my own (Southwest Texas - San Antonio) but there are many doctors trying to treat triple who in the past did not even accept Hepatitis C patients in the past. Some of the things I have been seeing and hearing have been alarming to say the least.
I am the first boceprevir patient for my doctor. Toward the end of my tx, he mentioned that one of his telaprevir patients had to stop tx due to rash, after one week. I know he was prepared to give me a script for any rash, so I was surprised. As Pooh mentions, it seems important for docs to get aggressive about the rash. I did learn before treating that some people have extreme reactions. Managing the patient closely early on is muy important.
Thanx Hector,
C
This is all very frightening for someone who hasn't begun treatment yet. When the time comes, what questions should I ask my doctor related to this? I have pretty much come to terms with the fact that I'm going to experience side effects such as nausea, fatigue, irritability, depression, etc. But now this? I'm beginning to wonder which is worse: the disease or the treatment.
#scaredoftheunknown
This is very scary news. For a pharm company to admit this is even scarier! I have a feeling it may be a little more serious then 1%
I remember a few MH members during telaprevir trials with the rash from hell ! From what they described it was horrible.
I felt very fortunate only to have severe itching when I treated during a trial.
Even Riba has been known to cause nasty rashes. This was a hot topic on this forum way before telaprevir was in the picture
As for the anemia with telaprevir, my riba dose was reduced at 13 weeks because of anemia. After a few weeks I went back to full dose.
At this point I still think the risk is worth the reward
Hey there,
Everything about hep c is scary at first.
And then we start to learn, on our own, w/ forums like this, thru our health providers. People like Hector and others post new information so that you can make an informed decision, about your tx.
As pooh pointed out, the doctors need to be informed too. Make sure you have a doc that is on the same page as you. If side effects hit you right away, is your doc going to treat you aggressively or quit on you.
I learned that the incivek carried the risk of serious rash, so I treated with boceprevir , knowing that anemia was likely to occur. And it did.
Yes, triple tx is serious. Learn everything you can before you start.
I'd like to borrow Poohs phrase "it's doable". Treatment may be very difficult, or for some, not so bad.
I made it thru tx. I worked. It was hard mentally and physically. Now 2 months post, I'm gradually getting my life back.
Good luck,
C
If I was you, I would get an experienced hepatologist as my doctor. I had a GI to begin with and that GI and the treating team, while getting the blood work correct, most of the time, were completely ignorant and useless when it came to side effects. If I had not been a registered nurse with a critical care background, I would have been lost down the pipes. It took me awhile to realize how totally inept they were, but once I did, I put my medical background to work and demanded side effect relief (which they were very reluctant to give). I went along with me basically managing my own care for months. Eventually, when it became clear that they may reduce my Riba by half for anemia instead of giving me Procrit (contrary to what they told me when I started), I switched doctors and got a hepatologist (who does give Procrit). I had to drive 70 miles to the hepatologist but it was worth it to have a doctor who knew what he was doing and who knew how to assess and treat side effects (and was more than willing to do so). Get a good doctor from the outset. If your side effects are mild, great. But if you have side effects that need immediate treatment you need a doctor who can recognize them, assess them, and treat them appropriately and immediately.
Best of luck.