Aa
Riba cut in half
I am on week 10 of Peg and Riba. After 4 weeks my test came back undetectable. However my hemoglobin dropped to 6.3 and I had a transfusion. The doc lowered my riba to 3 a day ( 600 total ) from 6 a day as he thought the riba caused my hemoglobin to drop so low. I still take full dose of Peg. I weigh 160 now. Down from 175. I am worried that lowering the riba dose will affect my results since I was on full riba in the first 4 weeks. My hemoglobin went up to 10 after transfusion but is now down to 9. Makes it hard to breathe and walking is very hard. Cant really do much. I don't get another test until week 16. I am on a 24 week treatment. Has this happened to any of the members here and if so did they achieve SVR on such a low dose of Riba? Any comments would be appreciated as this is on my mind all of the time.
I am 37 weeks into 48 weeks of triple therapy for Geno1b.
i have suffered from anemia all the way through my treatment.
In Australia, as in Canada, Procrit is not used as a 'rescue drug' during HCV treatment. Riba dose reduction is usually used.
I had my Riba reduced from 1200mg pd to 800mg, and was still detected at 4 wks. My HGB kept dropping, so my Riba was further reduced to 400mg pd. I too became concerned about whether this dose reduction was impeding the clearing of the virus. I had a PCR done at 8 wks and I was Undetected. Somewhere between 4-8 wks I cleared the virus on a Riba reduction from 6 pills a day to 2pd. HGB still dropping, so I go and have 2 bags of blood.(feel great!).
BUT, and a big but, I was also on Incivo, which is notorious for affecting HGB and platelet levels, so my case is a little different. We just wanted to limp me through the first 12 weeks when I then cease taking the Incivo, and just take the Interfering and Riba for the rest of the time.
When I ceased the Incivo after 12 weeks, I put my riba back up a pill a week and stopped at 1000mg. In the next few months my HGB levels got to about 110. I had analyzed my diet, and as I don't eat red meat etc, had to get iron in from somewhere. Taking iron supplements is a BIG NO NO on treatment for HCV for the reasons SYDSDAD stated.
I added cooked spinach (organic) and lemon juice to my meals, and oysters. Where I live they are fresh and huge and safe, so I at a dozen a couple of times a week. My HGB levels stayed around 100.
Can't afford oysters, and my HGB levels have dropped below 90 again. so, have reduced my Riba by 200, now on 4 pills a day.
My treating team are going to up and down the Riba dose as I respond, and every 2 weeks we will have blood tests to check.
I did ask why not Procrit, and if my team had thought that it was required, they would have got it for me. But, my gastro said that the side effects can be a challenge to some people having a hard time on treatment, and if one is Undetected, it's easier to play with a little riba dose reduction than introduce a new drug. Procrit is not subsidised here on the PBS.
willbb has it in a nutshell.
Good luck.
How I get by feeling 'Fatigue, No motivation, Bruising
No patience, Restless, Itching
Mood changes, Swelling, Sweating
Weight loss, Indigestion, Weakness
Lack of appetite, Nausea, Dizzy
Diarrhea, Headache
Constipation, Black stools, Paleness
Loss of sex drive, Ringing in ears, Numbness
Short of breath, Fast heart rate, Pale nail beds
Tingling of toes, Sensation of cold ?
I do everything slower, or not at all. I am on my own in a foreign town I found myself in by accident, so I hae little demands and a lot of time to be unwell.
But I get sick of not being able to 'do'. I used to be a doer. I used to be able to work.
But I only have 11 more weeks to go out of 48. I'm on the home stretch.
don't stress. Take each day, week, month as it comes. You'll get through it. remember, you were strong before you started. You'll be strong again.
i have suffered from anemia all the way through my treatment.
In Australia, as in Canada, Procrit is not used as a 'rescue drug' during HCV treatment. Riba dose reduction is usually used.
I had my Riba reduced from 1200mg pd to 800mg, and was still detected at 4 wks. My HGB kept dropping, so my Riba was further reduced to 400mg pd. I too became concerned about whether this dose reduction was impeding the clearing of the virus. I had a PCR done at 8 wks and I was Undetected. Somewhere between 4-8 wks I cleared the virus on a Riba reduction from 6 pills a day to 2pd. HGB still dropping, so I go and have 2 bags of blood.(feel great!).
BUT, and a big but, I was also on Incivo, which is notorious for affecting HGB and platelet levels, so my case is a little different. We just wanted to limp me through the first 12 weeks when I then cease taking the Incivo, and just take the Interfering and Riba for the rest of the time.
When I ceased the Incivo after 12 weeks, I put my riba back up a pill a week and stopped at 1000mg. In the next few months my HGB levels got to about 110. I had analyzed my diet, and as I don't eat red meat etc, had to get iron in from somewhere. Taking iron supplements is a BIG NO NO on treatment for HCV for the reasons SYDSDAD stated.
I added cooked spinach (organic) and lemon juice to my meals, and oysters. Where I live they are fresh and huge and safe, so I at a dozen a couple of times a week. My HGB levels stayed around 100.
Can't afford oysters, and my HGB levels have dropped below 90 again. so, have reduced my Riba by 200, now on 4 pills a day.
My treating team are going to up and down the Riba dose as I respond, and every 2 weeks we will have blood tests to check.
I did ask why not Procrit, and if my team had thought that it was required, they would have got it for me. But, my gastro said that the side effects can be a challenge to some people having a hard time on treatment, and if one is Undetected, it's easier to play with a little riba dose reduction than introduce a new drug. Procrit is not subsidised here on the PBS.
willbb has it in a nutshell.
Good luck.
How I get by feeling 'Fatigue, No motivation, Bruising
No patience, Restless, Itching
Mood changes, Swelling, Sweating
Weight loss, Indigestion, Weakness
Lack of appetite, Nausea, Dizzy
Diarrhea, Headache
Constipation, Black stools, Paleness
Loss of sex drive, Ringing in ears, Numbness
Short of breath, Fast heart rate, Pale nail beds
Tingling of toes, Sensation of cold ?
I do everything slower, or not at all. I am on my own in a foreign town I found myself in by accident, so I hae little demands and a lot of time to be unwell.
But I get sick of not being able to 'do'. I used to be a doer. I used to be able to work.
But I only have 11 more weeks to go out of 48. I'm on the home stretch.
don't stress. Take each day, week, month as it comes. You'll get through it. remember, you were strong before you started. You'll be strong again.
Yes he is right, the type of anemia you have has nothing to do with Iron,in fact Iron for a compromised liver is not a good thing we cant process it the same as others,so we tend to store it and excess iron stores are toxic. Also the virus loves iron....from a study of many........Iron overload in the presence of increasing concentrations of iron is one of the indicators of poor response to interferon therapy in chronic hepatitis C. In order to analyze the effect of iron on hepatitis C virus (HCV) replication, we measured replication in an HCV-infected cell line...........Iron enhances HCV replication in a hepatocyte cell line. The results suggest that iron deposition in hepatocytes could facilitate HCV infection in the liver. So please be careful and call out your doc with his reasoning, till he answers to your satisfaction.....you get enough iron from your diet
WoW! You would think a leading Canadian hepatologist and liver surgeon would know about iron. In fact I take a double dose of Fera Max daily...also folic acid. Its not doing a thing for me. No energy and cant breathe. Just a few steps and I have to rest. Forget stairs. I certainly don't want to damage my liver any further with iron. I was thinking it was helping me. Geez.. I will discuss with doc at next appt. Wonder why he says Procrit is not an option for me. He believes it doesn't help; I asked about it last visit. Actually requested it. Thanks for the info! I have a lot to think about.
Would also like to add taking Iron is not a good ideal. It's the meds causing you to be anemic, Iron will not help in your case. I hope your doctor did not think it would.
I would seek out Procrit, your not on triple treatment your a genotype 3. Dose reducing on just SOC is not a good ideal. Sorry but your doctor is risking your chances. Type 3 can be very hard to beat under dose reductions........... Good luck
Hi my hubby was the same his hema went down to 9 and he also over 2 stone while on tx he had no appetite at all the doc put him on folic acid to enable him to complete tx which he did and he achieved SVR in Oct, he was the same as you he felt that he was struggling to breathe they even made him have an x-ray just in case there was a infection lurking about but there wasnt and was told it was a common side effect of anemia he even had to rest a couple of times just climbing the stairs even though he is normally a fit and active person. I know it sounds daft but he was told to try and eat a small handful of brazil nuts throughout the day they are a brill form of iron and they did seem to help. Hang in there you are doing really well. I wish you all the best for rest of tx. Take care of yourself love Jules
I an genotype 3. Only on Peg Riba combo and in my 10th week of a 24 week program. After 4 week bloodwork results it was undetectable but also showed my hemoglobin at 6.3 so had a transfusion and it went up to 10. A 2 weeks later it is was at 9 and they only transfuse at 8 or less in Nova Scotia. I can tell its low just by my shortness of breath and I am as pale as a ghost. I go to work everyday and try to function but really can't go too far from my office and I am in sales so I try to do everything electronically.I am the only source of income in my family so haven't the luxury of staying home. Can't go to grocery store etc as I feel like I am going to faint from the shortness of breath. Blood work scheduled in one week and again a week later. Asked about Procrit and my hep doc said no that it really didn't show good results but again we will have to see how next blood test turns out. I am sure it didn't rise just by how I feel. I am committed to finishing this treatment and really hoping that I am just going through a rough patch and will improve as the treatment goes forward. The cure is sometimes worse than the disease. I have no idea how long I have had HCV and had no symptoms. My liver is functioning well. It is comforting reading this forum and knowing that anemia is common....just would like to be able to breathe! I take iron and eat as well as I can but really have no appetite. Down 20 pounds in 10 weeks. I was over weight so this isn't a big problem yet.
Hi, your question on Svr rates on those who have their riba dose reduced can be answered more accurately by providing your Genotype and weather or not your doing a pti also (incivek/victrelis) Those that are on just soc (peg/riba)studies show an impact on svr rates but not so significant with the pti's added. If you update your post, I'll provide you with the data to answer, but remember the data will block all the subgroups together the fact that your a rapid responder your odds are much better if you can complete your treatment, hopefully your labs will improve and you can complete tx, that would be my main concern a normal hemo for a female varies but somewhere between 12 and 15 your 6! and I hope that # wasn't after your transfusion, your severely anemic is your doc considering Procrit? Your long term health is the most important thing here sometimes its better to comeback and fight another day, I hope you improve, transfusions are a temporary fix they don't last,and have risks all of their own , keep your post updated would like to follow your progress, take care and relax the best you can your starving for oxygen ,try to keep your heartrate down, do you have help at home? someone to help with daily things?
Dropping my riba was a good thing, I lost my shortness of breath and felt better and it didn't stop my obtaining SVR.
my riba was reduced also due to anaemia. From 1000mg to 600mg from day 29. (on triple tx with incivek). Had rvr like you. Had my 3month post eot vl test amd am still und.
Given your RVR( UND@wk4) and the fact you HGB. was so low and seems to be dropping still after the transfusion(which is not uncommon on full dose Riba) your doctor is following protocol by reducing it.
Many patients have had to reduce Riba in order to keep the HGB .within range with the ultimate goal to be able to continue Tx.
If the HGB. still continues to fall you may want to ask your physician about the growth factor "procrit " as this is also used to replenish HGB.
Good luck and congrats on the RVR, this is a gpod predictor of success.
Will
Many patients have had to reduce Riba in order to keep the HGB .within range with the ultimate goal to be able to continue Tx.
If the HGB. still continues to fall you may want to ask your physician about the growth factor "procrit " as this is also used to replenish HGB.
Good luck and congrats on the RVR, this is a gpod predictor of success.
Will
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