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?
It is good to know that there are others who have had the same problem. I had low blood pressure to begin with (90/60) and a low end hemoglobin of 117. I started treatment at 135 lbs and lost 23 lbs in the first 5 weeks. My legs would turn blue/purple during the night requiring me to have hot baths to ease the pain (often needing assistance to get to my bath). I think the combination of blood pressure, circulation problems, and the weight loss basically became an overdose as you stated. It was when I threatened the specialist with quitting that he reduced the ribavirin but I further reduced it when the chest pains in my left shoulder area became too intense to bear any longer. The reduction to 400 mg allows me to function somewhat and makes the last bit of treatment tolerable. I start my 20th week tomorrow and have gained back 4 lbs (not much really but a milestone for me!).
Jo
Firstly I hope your demons are behind you a little.
What difference a day makes. Saw my doc yesterday. She reduced interferon to 90mm because my WBC was too low: 1:9.
So now I'm 90mm interferon and 3 pills of riba. A lot of side effects appear to have lifted. You are week 20 now? May it pass quickly!
BTW - my daughter called and I'm going to be a gandpa!
Let me know how you're doing.
Pete
Firstly I hope your demons are behind you a little.
What difference a day makes. Saw my doc yesterday. She reduced interferon to 90mm because my WBC was too low: 1:9.
So now I'm 90mm interferon and 3 pills of riba. A lot of side effects appear to have lifted. You are week 20 now? May it pass quickly!
BTW - my daughter called and I'm going to be a gandpa!
Let me know how you're doing.
Pete
By the way, the notion that low hemoglobin works in your favor by decreasing iron is quite a leap of faith, at best. Bacteria and fungi are well known to require a good source of iron to proliferate, and have evolved extremely efficient means to do so, including hijacking endogenous iron-binding proteins to steal their iron. It is known that those being treated for viral infections seem to do better when AVAILABLE iron is reduced, but iron bound in hemoglobin is not part of this pool because it is sequestered in red blood cells. Some microbes attack red blood cells to liberate (and access) their iron from freed hemoglobin molecules, but the body also has ways of restricting iron access to microbes even when RBCs are attacked. But it is not at all clear that viruses depend upon iron sources to nearly the same extent as bacteria and fungi. Frankly, I doubt it because viruses are essentially intracellular parasites, and as long as the host cell is functioning, they are happy.
Just saying that nobody really knows how important available iron is for viral viability/proliferation, to the best of my knowledge at least. Decreased iron availability during antiviral therapy could easily be beneficial for other reasons, for example by improving absorption or half-life of active metabolites, etc.
Just saying that nobody really knows how important available iron is for viral viability/proliferation, to the best of my knowledge at least. Decreased iron availability during antiviral therapy could easily be beneficial for other reasons, for example by improving absorption or half-life of active metabolites, etc.
Good to hear you're doing better with a reduced dose of Ribavirin. My dose also had to be reduced somewhat, and things have improved.
I just think the combination medications are a very powerful punch. Some people can tolerate it, but others the cure is worse than the disease. The doses ought to be customized for each individual patient, but the problem is there is no foundation or evidence that might guide such customization. So, MDs just hope for the best, and when things turn sour, decrease the doses until they find the sweet spot.
Nobody knows for sure----this is clinical medicine after all, which is highly subject to enormous uncertainties----but I strongly suspect you are getting just as much benefit now compared to the higher dose. In other words, for you, the higher dose was basically an overdose. No upside there, only downside.
It's hard for me to say what caused what in my own case, because I finished the Incivek just about the same time they reduced my Ribavirin dose. But FWIW, I progressively felt better for weeks afterwards. Now, I even go to the gym 4 or 5 times a week, and can sometimes (rarely actually) manage an hour on the elliptical. That is certainly a great feeling, even though I sometimes have to all but force myself to get through gym sessions.
After I completed the Incivek, I went back to my more typical diet, which is fairly low fat, mostly fruits, vegetables, grains, nuts, yogurt, and cottage cheese, with meat/fish/chicken/eggs maybe once a week at most. THAT made an almost instant difference, and I started losing some of the excess weight I had gained from eating a high-fat diet all the time.
I still get fevers almost every evening, and while that really slows me down, they are always gone by morning.
So, I am definitely feeling a lot better, and I think you can look forward to the same over the next few weeks. Just try to eat healthy (even though you may not have much of an appetite), increase your activity as best you can, and try to drink lots of fluids.
WS
I just think the combination medications are a very powerful punch. Some people can tolerate it, but others the cure is worse than the disease. The doses ought to be customized for each individual patient, but the problem is there is no foundation or evidence that might guide such customization. So, MDs just hope for the best, and when things turn sour, decrease the doses until they find the sweet spot.
Nobody knows for sure----this is clinical medicine after all, which is highly subject to enormous uncertainties----but I strongly suspect you are getting just as much benefit now compared to the higher dose. In other words, for you, the higher dose was basically an overdose. No upside there, only downside.
It's hard for me to say what caused what in my own case, because I finished the Incivek just about the same time they reduced my Ribavirin dose. But FWIW, I progressively felt better for weeks afterwards. Now, I even go to the gym 4 or 5 times a week, and can sometimes (rarely actually) manage an hour on the elliptical. That is certainly a great feeling, even though I sometimes have to all but force myself to get through gym sessions.
After I completed the Incivek, I went back to my more typical diet, which is fairly low fat, mostly fruits, vegetables, grains, nuts, yogurt, and cottage cheese, with meat/fish/chicken/eggs maybe once a week at most. THAT made an almost instant difference, and I started losing some of the excess weight I had gained from eating a high-fat diet all the time.
I still get fevers almost every evening, and while that really slows me down, they are always gone by morning.
So, I am definitely feeling a lot better, and I think you can look forward to the same over the next few weeks. Just try to eat healthy (even though you may not have much of an appetite), increase your activity as best you can, and try to drink lots of fluids.
WS
Swimmer
Good one! A smile is worth a golden guinea!
I hope as is well with you.
Pete
Good one! A smile is worth a golden guinea!
I hope as is well with you.
Pete
All of these nice friends helped me get through the 24 weeks . There is some on here that are more educted about this than our dr's. It got really hard for me the last 2 months but with the help of this forman an the nice people here and, and my dr's I made it. I did my last meds the end of June had my 6 month check up on Dec, 17 and got UND back I said thank you God for helping me stay strong each day. Just say Jesus help me make it through this day. Dont give up .We all are thinking good thoughts and praying for the best
bbj
bbj
I am there for you buddy!! It is a long haul but the payoff is massive!
My sons reminded me of what I used to tell them when they were little boys and felling ill. At the time, GI Joe was all the rage (actions figures, cartoons, movies, etc). I would say that their bodies contained the GI Joes and that the battle with the illness was like fighting an enemy. They would be laying in bed ill and I would have them say to themselves " Go Joe! Go Joe! " several times. Funny how I took that phrase and used in my circumstance, but dropped the "e" on the end of Joe.
We can do this.
My sons reminded me of what I used to tell them when they were little boys and felling ill. At the time, GI Joe was all the rage (actions figures, cartoons, movies, etc). I would say that their bodies contained the GI Joes and that the battle with the illness was like fighting an enemy. They would be laying in bed ill and I would have them say to themselves " Go Joe! Go Joe! " several times. Funny how I took that phrase and used in my circumstance, but dropped the "e" on the end of Joe.
We can do this.
Jomcc
I really appreciate your note.
Week 14 starts on Wed 3rd Jan (same day as your appointment) when I take interferon 135mms and meet with new herpatologist and get full blood work.
I need you to help me crawl across that finish line with you too buddy!
Love to all the brave and wonderful friends here.
Pete
I really appreciate your note.
Week 14 starts on Wed 3rd Jan (same day as your appointment) when I take interferon 135mms and meet with new herpatologist and get full blood work.
I need you to help me crawl across that finish line with you too buddy!
Love to all the brave and wonderful friends here.
Pete
The reduction of the Riba to 400mg has made a difference after only 1 week!! I can eat and keep the food down, I am actually hungry at times, walk without fear around the apartment (used to have to stop,drop and sit when lightheadness came on), have so much more concentration. I didn't notice any change until today, but wow it brought me to tears of joy almost. I will struggle on so as not to waste all these weeks of discomfort and money, I must crawel across the finish line!!
The reduction of the ribavirin will help at least it did for me once I brought it down to 400mg. The weeping is something I can relate to and it comes at any time and anywhere. They told me in the beginning that it would be tough but I thought I was tougher. It is a brutal treatment for a brutal disease.
You are in week 14 so just keep telling yourself that you are more than 1/2 way there! I know that the time seems to go slower as the treatment goes on but this is more due to our anticipation of the end.
With support from this group and any other network (family, friends, internet), you will always have feedback when you need it.
You are in week 14 so just keep telling yourself that you are more than 1/2 way there! I know that the time seems to go slower as the treatment goes on but this is more due to our anticipation of the end.
With support from this group and any other network (family, friends, internet), you will always have feedback when you need it.
Well here I am in week 19 and by reducing to 400mg I am actually starting to believe I can make it. I tried 3x to get full blood panel done and each time they were unable to get blood (usually 3 techs with 3 tries each tech per visit). The blood would start and then quit after a little dribble, followed by clotting in the needle itself. They have asked me to come back on January 3 to try again. Hopefully this time we will get some samples so we can see where we are at.
This can be brutal and truly the most difficult thing I have had to deal with. I keep saying that it will be worth it, and remind myself that quitting now would be ridiculous after all the horrible things I endured through this already. At this point all I can do is keep going. Humans have spirit and courage. The days tick down, that is all that counts now.
This can be brutal and truly the most difficult thing I have had to deal with. I keep saying that it will be worth it, and remind myself that quitting now would be ridiculous after all the horrible things I endured through this already. At this point all I can do is keep going. Humans have spirit and courage. The days tick down, that is all that counts now.
I'm week 14 coming up. Geno 2. Meds reduced to pegInterferon 135mm (9 doses at 180mm) and 600 (3 riba pills) daily ( two weeks on reduced riba dose)
I have suffered low hemoglobin and received 3 pints of blood. Lasted a few days only. Reducing riba seems to have helped for now,
Seems to be no such thing as a "free day" in this game. I've also taken to weeping everything I see something sad or stupidly sentimental. We have to get through this, what can we do but soldier on?
Pete
I have suffered low hemoglobin and received 3 pints of blood. Lasted a few days only. Reducing riba seems to have helped for now,
Seems to be no such thing as a "free day" in this game. I've also taken to weeping everything I see something sad or stupidly sentimental. We have to get through this, what can we do but soldier on?
Pete
so sorry to read you post and I recognise your frustrations...I also struggled with low hgb and several transfusions through treatment and I was so close to giving up...many times. But I didn't and I can now look back and really know that the illness will go away. I assure you - but take good care of yourself. Ask to get blood works every week to check on your hgb. I also felt like I couldn't breath, and I didn't sleep well...hang in there. Get all the support you can and call your doctor or nurse.
The transfusions helped me getting through treatment - I hope it will make you feel better as well.
Very best of luck!
The transfusions helped me getting through treatment - I hope it will make you feel better as well.
Very best of luck!
Just to let everyone know that I did try to keep going on the 600 mg but my body just wouldn't fly with that. Without permission I have reduced the dose to 400 mg. and this has been a vast improvement. I am not having the blackouts, hives, fevers, rashes (like measels), coughing has subsided to only a couple of times per day. My energy level is better and no more chest pains!!
This level seems to be manageable, so I will continue on. The doctor at the clinic has ordered blood tests for this week. I really think that I will have better levels this time around for RBC Hemogloblin, etc. My skin has started to rehydrate and I feel that I can finish this off. I might even get back some my weight once my appetite returns.
Thank you to everyone for their support as I was "on the edge and clinging by the fingernails."
This level seems to be manageable, so I will continue on. The doctor at the clinic has ordered blood tests for this week. I really think that I will have better levels this time around for RBC Hemogloblin, etc. My skin has started to rehydrate and I feel that I can finish this off. I might even get back some my weight once my appetite returns.
Thank you to everyone for their support as I was "on the edge and clinging by the fingernails."
Also:
There are other supportive treatments you should talk to your doctor about. For example, they can give you Neupogen (Filgrastim) to boost your blood cells. There are other options as well.
I really hope I'm wrong about this, but I get the impression the team treating you is not that aware of things, or maybe a bit inexperienced with hep C and managing all the associated problems of treatment.
There are other supportive treatments you should talk to your doctor about. For example, they can give you Neupogen (Filgrastim) to boost your blood cells. There are other options as well.
I really hope I'm wrong about this, but I get the impression the team treating you is not that aware of things, or maybe a bit inexperienced with hep C and managing all the associated problems of treatment.
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.
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)