Hep C Discussion Forum

Dave - Unfortunately, I can't explain the iron pill, or some of the other decisions (or lack of) and the timing of my doctor. I have wondered why, if my iron was low, he would wait until my HGB was almost at 9 to add it. Or maybe they would test for iron at some point, but they haven't, except at that first conclusive blood test prior to tx, unless its called something less obvious. I had kept my labs in a spreadsheet and plotted them since the beginning, and it was pretty obvious the HGB was going to tank. I was so relieved that something was finally being done that I didn't and haven't argued. It is just a plain OTC 65 mg iron supplement, one a day.

I recall seeing the same sort of thing about iron somewhere that you referred to. Even got a steel/alum pan to use instead of my usual cast iron, but never really used it. Not sure if all that was for living with Hep C or for treatment.

Just need to survive 6 more shots and less than 6 weeks of pills.  

After 2 and 3 weeks on reduced riba from 1000 to 600, my HGB has risen from 9.4 to 10.0 and 10.5. Have felt a lot more energy since. Of course, now I'm itching to bump it back up, but will try to be patient. Less than 6 weeks to go!

very informative thread. thanks... need to learn as much as i can bout this blood stuff...

PS  Awakenings was a great movie and the comparison is the same. Too bad the patients had to return to the catatonic state. We don't have to thanks to treating the anemia. It Took a while for me and you too. They don't transfuse til really low for insurance purposes  I guess. I have not seen the Artist or any movies since Sept when I saw Contagion my third week of TX I think.  Missed all the nominated movies. Will have a lot of catching up to do after get off this stuff in 21 days WhoHoo!!!The end eventually comes no matter how distant it seems. 

Ever see the movie Awakenings, with Robert De Nero and Robin Williams, where the mental patient miraculously comes out of a catatonic state after many years to become a normal functioning human?  That's exactly what the blood transfusion was like for me!  For the past two months (#2 and #3 of treatment) I was so weak due to anemia that I have not been able to stand for more than a minute.  Forget going to the grocery store or even standing up to shower, shave or brush my teeth.  Yet, 24 hours post-transfusion, my wife and I went to the movies (The Artist - great flick) and dinner.  Today I'm going for a haircut and lunch!

Hi. I felt really, really good for about a week, pretty good for another week, ok for third week then could feel the effects waning. I was also put on Procrit a couple of weeks before I got the transfusion with a riba reduction first to 6oo for a week or two then to 400 for about five days til I got the blood. I took I think 11 shots of Procrit all together. First 40,000 units a week then for the last two weeks 60,000u once a week. It never really did much til I got it bumped up tio 6o,ooo then it shot up from 9.2 to 10.7 and the next week to 11.9 when they stopped the procrit. Told to wait 3 weeks to get another CBC and that will be done this coming Monday. I read all the side effects on the insert wtih the drug and it was scarey. But I had no bad problems. I would take it again in a heartbeat if needed. As long as your hgb is below 12 it does not do the stroke thing according to the stuff I read on line and on the info from the maker of it. It did make all my big bones hurt even my skull.Not all the bones have the kind of marrow that makes rbcs. The long bones of the lower arms/legs, vertebrae, and the skull do and the hipsMaybe the breastbone. . But it was just take a mortin kind of pain and the more it hurt the more my hgb went up. It also had an effect of making me feel better even though it had not raised my hgb yet. It was like a feeling of well being. I swear by it and by transfusions for anemia. I had no problems with transfusion or Procrit. They will make you feel so much better. I even had to do Procrit after I stopped Incevik as my hgb tanked then again. Keep us posted. 

Thanks all for your responses!  Anna, how long do the positive effects of a transfusion last before they begin to wear off?  I received two units yesterday and feel better today than I have in two months (mostly in bed or on the sofa).  Doc also wants me to start Procrit (it arrived yesterday) but that stuff scares me.

Hi. I got transfused two units in the emergency room day after Thanksgiving for HGB of 8. Was in the ER for a total of 7 hours. MDS office sent me there ASAP when looked at results of most recent CBC done day before Thanksgiving. It was a breeze.Also got Potssium IV for low potassium 2.7.. Started to feel better 15 minutes after they started Potsaaium IV. Then after got blood for 15 minutes really perked up and was starving all of a sudden and asking for food and laughing and kidding around. Felt like I had risen from the dead and had come back to life. It was amazing. Easy procedures. No pain. Great staff. I could have kissed them I felt so good and felt so well cared for. Especially after fooling around for three weeks with riba reduction and procrit with no improvement whatsoever. I feel like blood trasnfusion is the way to go for anemia. I am sold on it. Those several weeks of misery before it were pretty frightening.Of course it cost my insurance $4900, I had copay of $115. So I see whey they are not passing out transfusions right and left. Insurance would not like it and they are all powerful

Isiscat2011, I wrote you a personal message as I am interested in that you and your brother both have hep c.  My mom and brother also have it.  We think we got it from her at birth because she had to have a transfusion but we will never know for sure.  Looking forward to reading your story. :)

aloha,

Meghan

When I was experiencing low hemoglobin my nurse practitioner told me that  the ongoing trials were finding the dose can be lowered to as little as 500mg per day with no decrease in SVR rates.  

She said most patients resist any lowering of dosage, because they don't want to take a chance. 

Just remember, this treatment is new, they are still learning, and the trials are ongoing.  She told me that people are getting a lot sicker from the treatment than they realized when Incivek was first approved.   She said that every one of her patients got sick from it.  She has at least 20 patients on the combo.   They are still learning.

She told me that in the future they may lower the recommended dosage of ribavirin with triple therapy, but until they are 100% sure, they will stick with the traditional dose.  They are not willing do anything prematurely that may negatively affect even a single patient's chances of achieving SVR.  I trust what she tells me.  She has been treating HIV since the early 90s and HVC since the late 90s and she follows the ongiing trials very closely. 

Hope that clarifies things a little.

I still think there is tons of research to be done out there.  Originally with riba the standard dose was 800 mg for all patients.  Only recently did it change according to weight.  Some people take 800mg and others take up to 1400 mg depending on weight.  If people were achieving SVR when taking the 800 mg years ago and today they would have been perscribed say 1200 mg based on their weight then again.....why take the 1200mg?

I am worried too.  I am very petite and was perscribed 800 mg.  I became very anemic on treatment at week 9 and dipped down to 6.3 hemoglobin.  We didn't catch this earlier because I was at 9.9 on my 4 week blood test and since it was borderline we felt I was ok.  I am still anemic now at 7.7 and have been on procrit for almost 5 weeks now with reduced dosage of 200mg because it was so low.

I received my 12 week lab results yesterday and am still undetectable but I am wondering about how this will be affected long term.  Good thing is I know that ribavirin stays in our systems for 6 months after treatment.....this is why the label says do not get pregnant for at least 6 months after treatment.  Maybe there is still enough of the drug in our system to fight of the virus but docs want the full dosage because that is what clinical trial data is based off of??

We shall see...

Anna Christie wrote:

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My hepatologist who is with a major transplant cnter at a teaching hospital and who did clinical trials on boceprivir, told me dose reductions of ribivarin when on triple therapy do not affect Sustained VIral Response SVR  but that riba can't be stopped. There are numerous research studies from the clinical trials of both protease inhibitors that show this result. Goodge SVR riba dose reduction incevik or boceprivirfor the reports. They are very interesting.However her PA always raises my Ribivarin right back to 1000mg when my hgb goes back above 10. I don't understand why they do that given the research but I take it like they say. The research does suppor no effect on SVR for triple therapy but not for peg and riba alone. 

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This is a very interesting question. The fact that the riba cannot be stopped and that the goal is always to bring the dosage back up if the hgb improves supports the assertion that it may effect SVRs.  It seems to me that this is indeed a gray area for which there are no absolute answers. Like everything else with this tx I expect it will vary by individuals and perhaps by degrees of reductions. 

I don't understand, however, why some medical professionals make assurances and then act against them.  I suppose they don't want to alarm patients, but that seems a bit patronizing since patients are certainly bright enough to see the inconsistencies between what they say and what they do.  Not to mention, it is just common sense that dosage amounts could effect results.

P.S. I forgot to mention that reducing your riba is perhaps your best alternative at this point even though the effects on SVR cannot be guaranteed, although that is your call.  Your hgb is not yet low enough for a transfusion so the only other options are 1) try procrit alone (but this takes time and is not considered the safest option, 2) discontinue tx (not warranted based on your hgb alone at this point unless there is more going on here), or 3) do nothing different (dangerous b/c without some intervention your hgb will likely continue to drop and this could become life threatening). 

I think this is fairly common, particularly late in the first twelve weeks. My CRNP told me that a paper was recently released that claims reduction of riba by 50% is becoming the norm, with no change in outcome. So I guess we'll see. But I am also still on 600mg/day, down from 1200mg/day. She and the doctor both promise me that this will not affect my chances at SVR. I do procrit every other week instead of every week, and my hematocrit is coming up.

Alan