Aa
Will I make it?
I am in my 17th week of treatment (24 week total). My RBC and Hemoglobin are really low. Hemoglobin hovers between 8.5 and 7.8. My blood pressure hovers around 78/41 but does come up to 83/50 after recommended 2 units of blood for the transfusion every 2months. I have survived through blackouts, peeling skin, horrible rashes, weight loss of 25 lbs and fevers with nausea and vomitting. The doctor has decreased the Ribavirin to 600mg for the next 4 weeks, but I have chest pains, can't breathe due to shortness of breath. My specialist and my gp are not available now until middle of January 2013. I just don't think I am going to make it at this rate.Could I reduce the Ribavirin to 400mg for awhile?
Best Answer
Wow.....those are some VERY serious side effects.
My hemoglobin got below 8 for a while, and my MD almost had a stroke. Several times she wanted to stop treatment (I always resisted), partly for this reason but also because of retinal bleeding, etc. etc. etc. I also felt like I was going to pass out a lot, but never actually did. They transfused me two units of blood, and that made an instant and significant difference.
I also felt short of breath, but your symptoms sound significantly worse than mine. The borderline hypotension is worrying......are those blood pressures unusually low for you, or have you always just naturally had low blood pressures (some people are just like that, you know)??
I have no idea why your GP and specialist might be unavailable. There's no excuse for that, zero. Especially given the severity of your side effects/symptoms. They MUST keep closer watch over you. Bad things can happen, some of them irreversible (including death.....yes, that's right. Recent data from an big meeting my MD went to last month).
They are seeing me weekly now, and checking bloods etc. closely. I think that is entirely appropriate. That's the standard of care. You gotta make them watch you more closely.
I suspect my doctor would have stopped all meds entirely if I had your symptoms. To me, they are definitely alarming. Lowering your Ribavirin dose is certainly an option (they did that for me, and it helped). But also, the interferon is a big troublemaker also. Hard to know exactly what is causing what symptoms, or if there are interactions among medicines that are making things bad.
Just know that if you can't make it, the day of interferon-free treatment is not far off (maybe 2-3 years). There are many very effective drugs in pipelines going through clinical trials. So if this doesn't work, don't give up hope. You can try again later with meds that have much less horrible side effects.
Best of luck. Hope you can make it to 24 weeks.
My hemoglobin got below 8 for a while, and my MD almost had a stroke. Several times she wanted to stop treatment (I always resisted), partly for this reason but also because of retinal bleeding, etc. etc. etc. I also felt like I was going to pass out a lot, but never actually did. They transfused me two units of blood, and that made an instant and significant difference.
I also felt short of breath, but your symptoms sound significantly worse than mine. The borderline hypotension is worrying......are those blood pressures unusually low for you, or have you always just naturally had low blood pressures (some people are just like that, you know)??
I have no idea why your GP and specialist might be unavailable. There's no excuse for that, zero. Especially given the severity of your side effects/symptoms. They MUST keep closer watch over you. Bad things can happen, some of them irreversible (including death.....yes, that's right. Recent data from an big meeting my MD went to last month).
They are seeing me weekly now, and checking bloods etc. closely. I think that is entirely appropriate. That's the standard of care. You gotta make them watch you more closely.
I suspect my doctor would have stopped all meds entirely if I had your symptoms. To me, they are definitely alarming. Lowering your Ribavirin dose is certainly an option (they did that for me, and it helped). But also, the interferon is a big troublemaker also. Hard to know exactly what is causing what symptoms, or if there are interactions among medicines that are making things bad.
Just know that if you can't make it, the day of interferon-free treatment is not far off (maybe 2-3 years). There are many very effective drugs in pipelines going through clinical trials. So if this doesn't work, don't give up hope. You can try again later with meds that have much less horrible side effects.
Best of luck. Hope you can make it to 24 weeks.
I am hanging in there AD and will drag myself across the finish line if need be.
You have a wonderful enlightening attitude DB!! It is worse than a TimeWarp (I used to do that dance lol). Today I began week 18 and crossed another day off the calendar.
Canada is where I am at and the process can be a bit frustrating. I asked about something called EPO and Procrit but my specialist said that it was not something he would prescribe for me. I also asked about B12 and B6 and Folic Acid which I used to take before treatment but these were nixed as well. When my HB crashed out in the 4th week at 7.8, the specialist said it was good thing (something about Iron Depletion Therapy - starvation of the virus assisting with the treatment).
I am hanging in there because basically I would hate to think I suffered all these weeks just to quit right before the finish line. I will if anything crawel across the line!
As my oldest son reminded me, "You have been through worse than this! You live by the motto 'I Won't Back Down' ", so I can hardly let down my boys at this stage of the game. I guess it was the waiver I signed that made me nervous. It was both a consent form and waiver that if any permanent damage or death occurred during treatment, that neither myself or my estate, would sue. That is pretty ominous to throw out there!!
I look forward to the day when there is better treatment, both from the Health Care and Society themselves for all those with this illness. I am not afraid to say what I have and I advocate for Canadian Liver Foundation as well as Hepatitis C Society. Heppers are not Leppers!! Thank goodness that my employer has stood by me with their insurance program and are still holding my job up to 1 year (although I want to be back to work by April!!).
Canada is where I am at and the process can be a bit frustrating. I asked about something called EPO and Procrit but my specialist said that it was not something he would prescribe for me. I also asked about B12 and B6 and Folic Acid which I used to take before treatment but these were nixed as well. When my HB crashed out in the 4th week at 7.8, the specialist said it was good thing (something about Iron Depletion Therapy - starvation of the virus assisting with the treatment).
I am hanging in there because basically I would hate to think I suffered all these weeks just to quit right before the finish line. I will if anything crawel across the line!
As my oldest son reminded me, "You have been through worse than this! You live by the motto 'I Won't Back Down' ", so I can hardly let down my boys at this stage of the game. I guess it was the waiver I signed that made me nervous. It was both a consent form and waiver that if any permanent damage or death occurred during treatment, that neither myself or my estate, would sue. That is pretty ominous to throw out there!!
I look forward to the day when there is better treatment, both from the Health Care and Society themselves for all those with this illness. I am not afraid to say what I have and I advocate for Canadian Liver Foundation as well as Hepatitis C Society. Heppers are not Leppers!! Thank goodness that my employer has stood by me with their insurance program and are still holding my job up to 1 year (although I want to be back to work by April!!).
Sounds to me like she is either in the UK,Canada,Australia or New Zealand.They all have a similar universal care system,all only have a 24 week SOC treatment for G3,no more weeks can be added no matter what,some of these don't have rescue drugs,only option is dose reduction.The UK is the worst you can only can treat once,if treatment fails your on your own unless you can get a trial for new drugs,no weight base treatment is possible,no rescue drugs are available.So yes indeed we are far behind.This is what happens when you rely on universal care system in economic bad times.
Hang in there. As OH said, try taking your Riba earlier in the day to help with sleep. Also be sure to take it with food to help avoid nausea. Ginger tea, raw ginger, and candied ginger all help with nausea as well.
The symptoms of anemia can be scary in that you can become very weak, short of breath, or dizzy. Some people fall when they're dizzy or find it too difficult to breathe and have to sit down.
I wish that your doctor were monitoring you a little more closely and helping you a bit more with the symptoms of anemia. There is a medication called Procrit that can help, but I don't know what the current protocol for prescribing Procrit is. I think that doctors used it more when it was prescribed for my husband in 2010 when he was on Consensus Interferon (Infergen daily) and Ribavirin (1400 mg daily). It seems that there may be additional concerns now with Procrit and doctors seem to be doing Riba reductions and transfusions rather than Procrit now. But either way, I would ask for more frequent CBCs to monitor your hgb and more attention from the doctor or his/her NP regarding treating the anemia. Basically what I think everyone is saying is hang in there, do whatever it takes to get through the end of treatment, so that hopefully you will clear the virus and never have to treat again.
Advocate1955
The symptoms of anemia can be scary in that you can become very weak, short of breath, or dizzy. Some people fall when they're dizzy or find it too difficult to breathe and have to sit down.
I wish that your doctor were monitoring you a little more closely and helping you a bit more with the symptoms of anemia. There is a medication called Procrit that can help, but I don't know what the current protocol for prescribing Procrit is. I think that doctors used it more when it was prescribed for my husband in 2010 when he was on Consensus Interferon (Infergen daily) and Ribavirin (1400 mg daily). It seems that there may be additional concerns now with Procrit and doctors seem to be doing Riba reductions and transfusions rather than Procrit now. But either way, I would ask for more frequent CBCs to monitor your hgb and more attention from the doctor or his/her NP regarding treating the anemia. Basically what I think everyone is saying is hang in there, do whatever it takes to get through the end of treatment, so that hopefully you will clear the virus and never have to treat again.
Advocate1955
"Hemoglobin hovers between 8.5 and 7.8"
" recommended 2 units of blood for the transfusion every 2months"
" My specialist and my gp are not available now until middle of January 2013"
"I demanded that the doctor run a viral count several times and finally at week 12 he ran the test"
As Dannyboi7 stated it's unfortunate you were not able to get a 4 week PCR. Also, not having a doctor available and not doing weekly CBCs when your Hgb is so low sounds flaky. Get someone to help you advocate for what you need. I dislike second guessing someone's doctor, but this one doesn't even seem up to speed with what was SOC 10 years ago.
" recommended 2 units of blood for the transfusion every 2months"
" My specialist and my gp are not available now until middle of January 2013"
"I demanded that the doctor run a viral count several times and finally at week 12 he ran the test"
As Dannyboi7 stated it's unfortunate you were not able to get a 4 week PCR. Also, not having a doctor available and not doing weekly CBCs when your Hgb is so low sounds flaky. Get someone to help you advocate for what you need. I dislike second guessing someone's doctor, but this one doesn't even seem up to speed with what was SOC 10 years ago.
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The most important part of the treatment is the first 12 weeks,if you were compliant in doing all your meds in those first 12 weeks and you were UND then the rest of the treatment just a mop up.The problem is you don't know if had achieved an RVR which is a good predictor for a SVR.I which case it would be important to finish the 24 weeks even with a dose reduction.On SOC one of the independent predictors for a SVR is the 80/80/80 rule which means patients who took more than 80%
of their prescribed IFN, more than 80% of their prescribed RBV,
and are treated for more than 80% of the planned treatment
duration)