Aa
HGB 9.4 even with procrit
Aloha fellow slayers,
I'm at the end of week 17, I've been on procrit since week 2, after first 5 shots hgb up to 12.7, so discontinued procrit for 2 weeks. Hgb crashed to 9.0, and on last day of incivik treatment needed to transfuse, felt horrible.
Been back on procrit, 40000 weekly since the, but hgb won't break over 10, it's 9.4 now.
Surprisingly, I feel great, plenty of energy, did more today than I have in months. Doc said if procrit won't bring it up we may reduce RIBA from 1000 to 800
Thoughts ?
I'm at the end of week 17, I've been on procrit since week 2, after first 5 shots hgb up to 12.7, so discontinued procrit for 2 weeks. Hgb crashed to 9.0, and on last day of incivik treatment needed to transfuse, felt horrible.
Been back on procrit, 40000 weekly since the, but hgb won't break over 10, it's 9.4 now.
Surprisingly, I feel great, plenty of energy, did more today than I have in months. Doc said if procrit won't bring it up we may reduce RIBA from 1000 to 800
Thoughts ?
HectorSF: I lived in Hawaii, you don't move there for first rate up to date health care.
It's why I didn't go there to recoup after my transplant, despite my friend's offer to stay on his beautiful land.
Sandcastle: Hector has a top notch team in S.F. and knows his stuff.
Do push on.
Keep your eye on the finish line and good luck.
It's why I didn't go there to recoup after my transplant, despite my friend's offer to stay on his beautiful land.
Sandcastle: Hector has a top notch team in S.F. and knows his stuff.
Do push on.
Keep your eye on the finish line and good luck.
Greeting. I agree with the others. I am doing the whole 48 and yes it sux. I am sorry your doctor mislead you. Maybe he felt compelled to offer some kind of assurance since you had a bad go with the sides for a while there.
Many people on here have done the whole stretch and that encourages me to hang in there. Even people who had worse sides than me or had to work two jobs or had small children. Eeek.
To me it takes experimenting with Procrit. Being in the 9's is not bad but if your doctor is willing maybe you could do 60,000 units of Procrit a week or administer your shot every five days. That is what I did for weeks to finally hover around 10.1. Would your doctor consider that as opposed to lowering your Riba? Just a thought. To be honest I am not certain if that is is a viable option given you are cirrhotic. Hang in there!
Hang in there
Many people on here have done the whole stretch and that encourages me to hang in there. Even people who had worse sides than me or had to work two jobs or had small children. Eeek.
To me it takes experimenting with Procrit. Being in the 9's is not bad but if your doctor is willing maybe you could do 60,000 units of Procrit a week or administer your shot every five days. That is what I did for weeks to finally hover around 10.1. Would your doctor consider that as opposed to lowering your Riba? Just a thought. To be honest I am not certain if that is is a viable option given you are cirrhotic. Hang in there!
Hang in there
Hi Hector, thanks ... I hear you. I did not realize the percentage change was so great. Doctor thought it was around 5 to 7 percent. I think the reason he gave me that chose was I was doing pretty bad at that point, very depressed, couldn't get out of bed, couldn't work etc. I'm feeling a lot better now though. I will make it my goal to do the 48. Thanks for the info, it was eye opening.
I know it's tough, but I think you should try to do the full 48 weeks. The protocol for Cirrhotics is 48 weeks. If you shorten the treatment and then relapse, you will have no other options for several years, during which time your Cirrhosis could progress and your liver could decompensate. At that point you may be too ill to treat when new options become available.
Advocate1955
Advocate1955
"Supposed to do 48 weeks due to cirrhosis, but doctor said I can consider quitting at 30 if sx don't improve."
I am not sure why no one pointed out that treating for 30 weeks instead of the required 48 is not proper treatment. There is no data showing that 30 is any better then 24 for that matter. In fact there is no data at all for treating for 30 weeks. Doctors that make up their on treatment protocols is a least a questionable practice the presents a risk to the patient. Especially a patient that has a potentially fatal illness, cirrhosis of the liver.
You said in a former post you were "UNDETECTIBLE at 6 weeks". You were not eRVR (undetectable by week 4).
Which means you should treat for 48 WEEKS EVEN IF YOU DIDN'T HAVE CIRRHOSIS!
Doesn't your doctor know the basics of treating with INCIVEK? Perhaps he might start by reading the INCIVEK FULL PRESCRIBING INFORMATION label.
-------------------------------------------------------------------------
http://pi.vrtx.com/files/uspi_telaprevir.pdf
"INCIVEK FULL PRESCRIBING INFORMATION:
Treatment-Naïve and Prior Relapse Patients
Table 1: Recommended Treatment Duration
Detectable (1000 IU/mL or less) at Weeks 4 and/or 12
Triple Therapy - First 12 weeks
Dual Therapy - Additional 36 weeks
Total Treatment Duration - 48 weeks"
Trial 111 (ILLUMINATE)
"Trial 111 was a randomized, open-label trial conducted in treatment-naïve subjects. The trial was designed to compare SVR rates in subjects achieving eRVR who were treated with INCIVEK for 12 weeks in combination with Peg-IFN-alfa-2a/RBV for either 24 weeks (T12/PR24 regimen) or 48 weeks (T12/PR48 regimen).
Sixty-one (11%) of subjects had cirrhosis at baseline. Among subjects with cirrhosis, 30 (49%) achieved an eRVR (NOTE: which you did NOT achieve): 18 were randomized to T12/PR24 and 12 to T12/PR48. The SVR rates were 61% (11/18) for the T12/PR24 group and 92% (11/12) for the T12/PR48 group."
---------------------------------------------------------------
So even in this group that was undetectable by week 4 and responded more rapidly then you did, there was a 30% DIFFERENCE between treating for 48 weeks vs. 24 weeks. Do you realize that your chances of SVR if treating for only 24 weeks is less 61%? Probably much less.
It is your call of course but have you thought of the implications? If you relapse and the virus comes back do you realize that you will not be able to treat again with the current drugs of the market. If you fail treatment you will be resistant to any protease Inhibitor drugs. Can you risk further progression of your liver disease while waiting for new treatments to be available? What if your liver decompensates? Then your only option will be a liver transplant. Are you prepared to go down that long road that will impact you as long as you live? Only you can decide what is best for you.
It's your call. But for a doctor to make up his own treatment protocol in my opinion is not anyway to treat a patient who treatment may be their last chance to cure their hepatitis C. It goes against all the established standards for treatment. I would call Incivek's patient's support line and ask them what they think. Tell them you didn't become undetectable until week 6 and that you have cirrhosis.
24/7 Toll-Free Nurse Support Line 1-855-837-8394
Registered nurses are available 24 hours a day, 7 days a week. With nurse support, you can:
Talk with a registered nurse about treatment with INCIVEK triple therapy
Good luck!
Hector
I am not sure why no one pointed out that treating for 30 weeks instead of the required 48 is not proper treatment. There is no data showing that 30 is any better then 24 for that matter. In fact there is no data at all for treating for 30 weeks. Doctors that make up their on treatment protocols is a least a questionable practice the presents a risk to the patient. Especially a patient that has a potentially fatal illness, cirrhosis of the liver.
You said in a former post you were "UNDETECTIBLE at 6 weeks". You were not eRVR (undetectable by week 4).
Which means you should treat for 48 WEEKS EVEN IF YOU DIDN'T HAVE CIRRHOSIS!
Doesn't your doctor know the basics of treating with INCIVEK? Perhaps he might start by reading the INCIVEK FULL PRESCRIBING INFORMATION label.
-------------------------------------------------------------------------
http://pi.vrtx.com/files/uspi_telaprevir.pdf
"INCIVEK FULL PRESCRIBING INFORMATION:
Treatment-Naïve and Prior Relapse Patients
Table 1: Recommended Treatment Duration
Detectable (1000 IU/mL or less) at Weeks 4 and/or 12
Triple Therapy - First 12 weeks
Dual Therapy - Additional 36 weeks
Total Treatment Duration - 48 weeks"
Trial 111 (ILLUMINATE)
"Trial 111 was a randomized, open-label trial conducted in treatment-naïve subjects. The trial was designed to compare SVR rates in subjects achieving eRVR who were treated with INCIVEK for 12 weeks in combination with Peg-IFN-alfa-2a/RBV for either 24 weeks (T12/PR24 regimen) or 48 weeks (T12/PR48 regimen).
Sixty-one (11%) of subjects had cirrhosis at baseline. Among subjects with cirrhosis, 30 (49%) achieved an eRVR (NOTE: which you did NOT achieve): 18 were randomized to T12/PR24 and 12 to T12/PR48. The SVR rates were 61% (11/18) for the T12/PR24 group and 92% (11/12) for the T12/PR48 group."
---------------------------------------------------------------
So even in this group that was undetectable by week 4 and responded more rapidly then you did, there was a 30% DIFFERENCE between treating for 48 weeks vs. 24 weeks. Do you realize that your chances of SVR if treating for only 24 weeks is less 61%? Probably much less.
It is your call of course but have you thought of the implications? If you relapse and the virus comes back do you realize that you will not be able to treat again with the current drugs of the market. If you fail treatment you will be resistant to any protease Inhibitor drugs. Can you risk further progression of your liver disease while waiting for new treatments to be available? What if your liver decompensates? Then your only option will be a liver transplant. Are you prepared to go down that long road that will impact you as long as you live? Only you can decide what is best for you.
It's your call. But for a doctor to make up his own treatment protocol in my opinion is not anyway to treat a patient who treatment may be their last chance to cure their hepatitis C. It goes against all the established standards for treatment. I would call Incivek's patient's support line and ask them what they think. Tell them you didn't become undetectable until week 6 and that you have cirrhosis.
24/7 Toll-Free Nurse Support Line 1-855-837-8394
Registered nurses are available 24 hours a day, 7 days a week. With nurse support, you can:
Talk with a registered nurse about treatment with INCIVEK triple therapy
Good luck!
Hector
One more thing, sandcastle. I also have early cirrhosis and the doctor said up front it would be 48 weeks. I was crushed, but adjusted to the fact. Then midway through treatment he said I could do 36 because I was UND after 2 weeks of VIC and called me "pre-cirrhotic." Hubby and I talked it over. This is my second treatment - the first was 56 weeks in 2005/6 - and was relatively easy. This one was tough but we decided I should do everything in my power to clear and not have to do this again so I chose to continue to 48. I think I personally made the right choice.
I think that is the way with these triples. At first the procrit helped bring me out of the nines. But later even with procrit every 5 days, my hemoglobin stayed in the 9s. I did adjust to it, that is, the first round of 9s was very difficult but later during treatment I was okay (with, of course, a very limited physical plan!). During my second last week on tx it dipped to 8.9 and the doctor threatened a transfusion, but it did come back up. I ended 48 weeks of treatment with 27 of those weeks under 10.
I did dose reduce the riba from 1200 to 1000 to 800 for a couple of months. Then, at the end of treatment I dose reduced again for the last couple of months. It was the only way I could see that I could get to the end.
My doctor said the 9s are typical in triple tx.
I did dose reduce the riba from 1200 to 1000 to 800 for a couple of months. Then, at the end of treatment I dose reduced again for the last couple of months. It was the only way I could see that I could get to the end.
My doctor said the 9s are typical in triple tx.
9s aren't bad...even with procrit i couldn't get my hgb above mid 8s most of tx...a lot of tx depends on the condition of your liver and body going into tx..good luck...billy
My level is 9.6 started procrit earlier the week. Before i started procrit my doc reduced my RIBA to 600. My hbg was around 11 and dropped to 9.5 over two wks. I was having breathing problem and felt terrible. I think the reduction stopped a greater hgb slide. My RIBA is currently 400 and am hoping to move it up by next week. Depends on the hgb climb. I don't want to risk svr but I couldn't move.
Yeah, I must be getting used to the kow hgb. This week has been great, it's a roller coaster though. Who knows what next week will bring.
Supposed to do 48 weeks due to cirrhosis, but doctor said I can consider quitting at 30 if sx don't improve. If I continue to feel as I do now, I'll do 48, but I've had some very rough weeks so who knows. Knowing its an option keeps me going though!
Supposed to do 48 weeks due to cirrhosis, but doctor said I can consider quitting at 30 if sx don't improve. If I continue to feel as I do now, I'll do 48, but I've had some very rough weeks so who knows. Knowing its an option keeps me going though!
Your body does adjust to a lower HGB level, procrit mainly is to keep you stable while on treatment... 9.4 is not to bad, reducing riba should not harm your treatment and should bring your HGB up a little. Sounds like besides that things are going pretty well? Is 24 weeks what your doing? Wishing you the best.
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