Aa
Anemia/Ribavirin
I'm one of the newbies that has been lurking for quite some time. Same history as many here, many years ago diagnosed as nonA/nonB non specific hep and that was that. Liver functions would be up and down as the years passed. Now I'm 54, last physical showed higher liver functions than normal, suggested to see specialist. More tests, one biopsy later I'm on treatment. Don't have all the numbers but viral load was 23,000,000 and biopsy showed inflammation and bridging fibrosis, (stage 3?). I'm on week 7 out of first 12, pegasys/1000 ribavirin. Doc won't do comprehensive tests to see if working until week 12, then if responding will do 48 weeks. Blood work showed slight anemia this week, he wants me to cut ribavirin to 600. He did say after checking numbers next week we may look into rescue drugs for the anemia. So questions is, will dropping the ribavirin reduce my chances of responding? I'm 1A by the way. Treatment has been okay, thanks to this board I have known what to expect for sides and drink mega amounts of water. I am a single mom, work two jobs (no days off) and have one 17 year old, one 21 year old living at home. Am tired but haven't missed a day of work, some days better than others, have the dreaded rash in random places, nausea, sometimes slight fever and achiness and headaches, you all know the drill. Thanks to you all for the wonderful comaraderie I see here and the amazing amounts of information. Oh, I also go for acupuncture once a week, am learning qi gong and have found it greatly helps the physical/mental part of some of this. Have I rambled enough? Thanks for reading!
I am a genotype 2b on tx for 12 wks, no detectable hcv according to last viral load but my doc says I will be on peg/riba supplemented with neulasta and arasept for red and white blood cell improvement.
It seems like a long time for a 2b and am worried about long term damage from all the drugs.
My hemoglobin had to hit 8.8 for 2 consecutive tests for my ins. to ok the arasept. My absolute neutrophils had to get down to 0.5 before coventry would ok the neulasta.
It seems like a long time for a 2b and am worried about long term damage from all the drugs.
My hemoglobin had to hit 8.8 for 2 consecutive tests for my ins. to ok the arasept. My absolute neutrophils had to get down to 0.5 before coventry would ok the neulasta.
I also am 2b and have been in tx for 12 wks, last viral load showed no detectable hcv but my doc says I will be on the double therapy for 1year.
It seems like a long time for a 2b, and am worried about long term damage using the pegasys/riba supplemented with arasept and neulasta for red and white blood cell improvement.
It seems like a long time for a 2b, and am worried about long term damage using the pegasys/riba supplemented with arasept and neulasta for red and white blood cell improvement.
I start week 4 tommorrow. Already anemic test result 8 P.A. says it should be 9.Lots of P.As under one hep Dr. Started proc.today. Dr.cut Riba to 600 daily. I'm very concerned about cut!
If your hemoglobin goes below 12 you need Procrit. If it goes above 12 you don't need it. I agree with Jmjm don't reduce the riba the first 12 weeks, especially being 1a. I'm also 1a (state 2-3) start week 34 tonight. 17 more to go. Good luck. You sound like a very strong person. I have to take the riba with fat (10 almonds in the a.m. and ice cream in p.m.) to keep the nausea away.
If you are seeing a gastroenterologist please find a hepatologist. I had to go through great lengths to get the proper tests (PCR) done by my gastro. I then found a hep dr. and no longer have to beg for the proper care. i asked the hep dr, "what's the difference between a hepatologist and a gastroenterologist?" He said, "the World." and so far, in comparison to the treatment I have received...I tend to agree. He also congratulated me for searching the web...doing research and finding him. I have to take public transport (2 hrs.) a month to get there but for me it is well worth it. I wanted a doc who knew more about tx than me. You sound great Rose....working two jobs...with kids at home..God Bless You. Tonite is my 8th shot..of 48 if i can continue tx....my prescription plan maxed out...which I still can't believe they would start me and drop me like this...oh well.
Have a good weekend and also get some rest.
Yvonne
Have a good weekend and also get some rest.
Yvonne
Wow, one meeting later return to office and there is my answer. My doctor is a gastro but a specialist in treating HCV patients. He keeps up on all the latest but I suppose is conservative in his approach. I have thought about checking on second opinion based on results at 12 weeks and what direction we decide to take. I will definitely be bringing article to his attention, get next blood work on Monday and will talk about rescue drugs instead with him when those results come in. Meanwhile I think I'll keep the ribavirin where it is. (My weight is about 140 now - I lost 15 lbs the first 4 weeks of treatment). I'll ask him for my hemoglobin numbers too. Thanks so much for your quick response.
Anyone familiar with a specialist in the Baltimore area? I live in the burbs but we do have Johns Hopkins and Univ. of Maryland here, there were a lot of doctors listed lumped in one gastro/hep department, how to choose one?
I am (was) a stage 3 as well - please, print out the information and give it to your doctor...DONT let him cut your ribavirin. Cutting meds is one of the worst things that we can really do and most doctors agree.
My doctor prescribed the epogen (Procrit same thing) and I managed to stay on full dose. I had a drastic drop in my hemoglobin in just ten days and would not have been able to continue without it.
It DOES take 2 to 6 weeks to work (more like 2 or 3) so you need to speak with him very quickly.
Please...........make sure you are armed with information when you talk to him and whatever you do...DONT say "on the internet they said" or his head will spin around in circles and he'll laugh in your face. Just say "someone in my support group or someone who also has this disease" and present him with the facts and you will be MUCh better off :)
Good luck.
My doctor prescribed the epogen (Procrit same thing) and I managed to stay on full dose. I had a drastic drop in my hemoglobin in just ten days and would not have been able to continue without it.
It DOES take 2 to 6 weeks to work (more like 2 or 3) so you need to speak with him very quickly.
Please...........make sure you are armed with information when you talk to him and whatever you do...DONT say "on the internet they said" or his head will spin around in circles and he'll laugh in your face. Just say "someone in my support group or someone who also has this disease" and present him with the facts and you will be MUCh better off :)
Good luck.
Hi: I don't know as much about all this as Jim. But I do know about anemia. My doc let me go to long before starting procrit and I ended up needing a transfusion. The good news is I did not lower my riba until week 14. I am a 2b so treatment is only 16-24 weeks.
You should start the procrit and not reduce the riba unless the procrit does not work. Also, you should get a PCR at 4 weeks.
Good Luck
You should start the procrit and not reduce the riba unless the procrit does not work. Also, you should get a PCR at 4 weeks.
Good Luck
Sorry, I'm not a nurse and I'm at work now so I can't check the internet. When you get your copy of your labs look at the hemoglobin and if its under 12 you need Procrit. If it's 12 or more you don't need it. Someone else might know the answer to your question, especially Jim. He's so knowledgable.
What would be normal hemoglobin? In the pamphlet that came with ribaviron...it stated if you don't eat ...it's ok ((not in these words..but) and if you do...continue. I can't always (timewise) eat in the am...I wonder if this could be whay I am not resonding as quick as doc would like?
Eating with the ribavirin reduces the chance of nausea. I learned from this board to take the pills with some yogurt or something with some fat in it. Grandma uses almonds and ice cream. I use yogurt (not the light/fat free kind either). Usually it helps, some days I'm nauseous all day anyway. The hemoglobin has to do with your blood levels, low hemoglobin = anemia (I think I got that right) usually a side effect of treatment.
Good idea about not mentioning the internet, originally he said to me I know you are going to go on the internet and read all about this but don't make yourself crazy with it. And he was right, like everyone else my first reactions were of panic and being deathly ill during treatment. That's where this board clarified things in a great way, you get to read all sides of what people are going through. You certainly have been through the mill but knowing you reached SVR in the end is inspiring. Thanks again for the input.
First, congrats Rose on working 2 jobs and taking the tx. Wonder woman I'd say!
Second, what would happen if she cuts the dose of Riba, but took it for a longer time? I know they want to 'knock it out' in the first 3 mos now, but does anyone know what her chances might be if she did do that?
Second, what would happen if she cuts the dose of Riba, but took it for a longer time? I know they want to 'knock it out' in the first 3 mos now, but does anyone know what her chances might be if she did do that?
Here's one of many articles/studies on point that you may want to read and bring to your doctor's attention.
"...Conclusion: In anemic HCV-infected pts on RBV/IFN or RBV/PEG-IFN, EPO (Procrit) maintains RBV dose and significantly improves anemia and QOL. EPO has the potential to improve adherence rates, which may in turn improve SVRs."
http://www.hivandhepatitis.com/2003icr/DDW2003/docs/hcv_052103h.html
"...Conclusion: In anemic HCV-infected pts on RBV/IFN or RBV/PEG-IFN, EPO (Procrit) maintains RBV dose and significantly improves anemia and QOL. EPO has the potential to improve adherence rates, which may in turn improve SVRs."
http://www.hivandhepatitis.com/2003icr/DDW2003/docs/hcv_052103h.html
Sorry, just noticed you appear to be stage 3, more or less like myself when I treated. That's all the more reason to convince your doctor to get agressive with rescue drugs (Procrit) instead of reducing dosage. Also, if you can possibly convince your doctor (or PCP) to give you a viral load test now (in addition to one at 12 weeks) that might be helpful.
-- Jim
-- Jim
Rose: Blood work showed slight anemia this week, he wants me to cut ribavirin to 600. He did say after checking numbers next week we may look into rescue drugs for the anemia. So questions is, will dropping the ribavirin reduce my chances of responding?
--------------------------
In general, the answer is "yes", cutting the ribavirin in half during the first 12 weeks potentially will reduce your chances of SVR.
It's hard to give specific advice since we don't know your hemoglobin numbers (before and during treatment) nor your general health history -- nor none of us are doctors -- but in many cases doctors will start the rescue drug Procrit (epo) first, before lowering the ribavirin -- epc in cases of "slight anemia" which is pretty common on treatment.
The fact that your doctor cut your riba in half and still hasn't prescribed Procrit is troubling to me. That combined with the fact that he will only test at week 12 and seemingly use the week 12 test as a sole barometer of continuing treatment, makes me guess that your doctor is probably a GP or a Gastro and not a liver specialist (hepatologist).
If I were in your position, I'd try and get a consult right away with a liver specialist (hepatologist) to review your case, especially the dose reduction. Meanwhile, you might call your doctor and ask if you could try the Procrit first before reducing the dose. Do you know your hemoglobin numbers both pre-treatment and current? Also what is your genotype and what stage liver damage do you have and how much do you weigh? Again, no doctors here, but many of us have been through the mill and hopefully can point you in the right directions.
All the best,
-- Jim
--------------------------
In general, the answer is "yes", cutting the ribavirin in half during the first 12 weeks potentially will reduce your chances of SVR.
It's hard to give specific advice since we don't know your hemoglobin numbers (before and during treatment) nor your general health history -- nor none of us are doctors -- but in many cases doctors will start the rescue drug Procrit (epo) first, before lowering the ribavirin -- epc in cases of "slight anemia" which is pretty common on treatment.
The fact that your doctor cut your riba in half and still hasn't prescribed Procrit is troubling to me. That combined with the fact that he will only test at week 12 and seemingly use the week 12 test as a sole barometer of continuing treatment, makes me guess that your doctor is probably a GP or a Gastro and not a liver specialist (hepatologist).
If I were in your position, I'd try and get a consult right away with a liver specialist (hepatologist) to review your case, especially the dose reduction. Meanwhile, you might call your doctor and ask if you could try the Procrit first before reducing the dose. Do you know your hemoglobin numbers both pre-treatment and current? Also what is your genotype and what stage liver damage do you have and how much do you weigh? Again, no doctors here, but many of us have been through the mill and hopefully can point you in the right directions.
All the best,
-- Jim
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