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hepcsurvivor · Member

RE: Why does Ribivarin lower Hemoglobin?

Gracie · Guru

She reduced my RIBA dose from 5 pills to 3 pills which I didn't want to do, but it worked. She said to keep it reduced, but I'm sneaking extra pills in now that I'm over the danger zone. It was reduced for two weeks. Went up to 10 and now is over ten so it's good. Don't want to take any chances now that my viral load is down to 22. Need to get rid of this sucker! It's a balance as I don't want my levels to go so low I'll be taken off treatment, but I also don't want to take chances on it not working. So I'll sneak the extra pills and go to the lower dose the day before bloodwork...lol. Then if she asks I can answer honestly that I did reduce the dose!

hepcsurvivor · Member

Gracie wrote:
Oh right, my RIBA was reduced because my hemoglobin went below ten. It's over ten now, so I don't have to feel guilty about sneaking the extra dose.

Hi Gracie,

Congrats on >10 !

Is there anything you did that I can also try to increase hemoglobin?

Gary

Gracie · Guru

Oh right, my RIBA was reduced because my hemoglobin went below ten. It's over ten now, so I don't have to feel guilty about sneaking the extra dose.

mallani · Guru

We could talk all day about Riba dose reduction, Procrit and the effect on SVR, go round in circles and end up just as confused.

Sure, some studies show there is no difference in SVR irrespective of whether Riba dose reduction, or Procrit/transfusions are used. These are from the USA where a drop of Hb below 10 sends alarm bells ringing- probably medico-legal related. Some forum members have been allowed to drop their Hb lower than 10 without intervention. What we don't know is whether SVR rates are better without dose reductions or Procrit. There has never been a study comparing intervention vs non-intervention, so it is impossible to say whether Riba dose reduction affects SVR. Over here, it is up to the experience of the Hepatologist- most seem to think a Hb of 9 is OK, providing the patient is not compromised (eg patients with ischaemic heart disease). Between 8 and 9, some consider dropping the Riba dose by a small amount- not the 50% reductions we often see from US members. My doc had the view that with cirrhosis, every mg of Riba was vital. Of course he may be wrong. My advice to anyone who is told to reduce Riba, is to question why, and for how long. Just try to be informed and question such decisions- it's your treatment.

darkstar- I agree with all you say in your post.

Gracie- platelet reduction is due to bone marrow suppression by Interferon. The Riba dose is irrelevant. Cheers, all.

darkstar · Senior Member

The problem with the hemolytic anemia associated with ribavirin when combined with interferon is that interferon suppresses the bone marrow. Usually in hemolytic anemia the bone marrow compensates by cranking out more red cells. Procrit stimulates the bone marrow. I haven't seen data but I would assume that in non-interferon containing regimens that the bone marrow will already be working at its maximum so procrit should be of limited help.

Anemia is better tolerated if you get there slowly. One person may do fine with a hgb of 7 while another person will only tolerate 9. Hepcsurvivor, you said that you started at 12, that is not a normal hgb, I would make certain that your doctor knows why you were starting there, you could for example also be iron deficient for other reasons.

Gracie · Guru

I actually talked to my hepologist to get an explanation of dose reduction vs Procrit and his answer was that it had the exact same result as far as SVR was concerned. One arm in the study had Procrit added, another had riboviron reduced and the SVR was the same in both groups. So the protocol is now to reduce riboviron first to avoid the extra drug burden and side effects of Procrit. It still bothers me to have to dose reduce, but my platelets are now at 54 so not much choice. He assures me it won't have any affect on my outcome... I still sneak an exta pill in now and again.

hepcsurvivor · Member

Wow, you guys have a lot of knowledge here. I bet some of you know more than the "pros"

Many thanks for the facts, and encouragement.

Its so nice to have a place like this to get answers.

I feel a little less alone. Thank you.

mallani · Guru

Hi hepcsurvivor,

Cinnamon Girl has given you excellent advice. As Sovaldi/Riba is a new protocol, it is difficult to give precise information about SVR rates after Riba dose reduction. With triple therapy and the old SOC, Hb drops of >3 were considered appropriate. Initial research showed that Riba dose reduction was associated with a decreased SVR rate. Subsequent research has failed to prove that. It's really up to the individual Hepatologist- mine didn't accept the dose reduction figures, and I stayed on 1,200 mg/day for 48 weeks, with my Hb progressively dropping down to 7.2. It makes life tough, but not life-threatening, and I believe I had a better chance of SVR by not reducing Riba. As Scruffy said, he can manage with a Hb of 8.7-9.4, so really it's about deciding what you can tolerate. Cheers.

Cinnamon Girl · Guru

Hi again hepcsurvivor, I`ll try and answer your questions as best I can.

Firstly, there have been studies done which suggest that anemia is associated with a successful outcome, i.e. SVR, which is why I said that it`s usually taken as a good sign.

Secondly, well the drop in Hgb can level out after an initial drop although in many cases of treatment which include Ribavirin the drop in Hgb levels continues the longer treatment goes on. Although as the Sovaldi treatment regimen is so new we haven`t yet seen how people will respond as it goes along.

Thirdly, as far as dose reduction is concerned, the protocols have been set out in the full prescribing information published by Gilead. In section 2.2 `Dose Modification`, `Genotypes 2 and 3`. The recommendation is to reduce the dose to 600 mg/day if the Hgb level drops below 10 g/dL, and discontinue Ribavirin if it drops below 8.5 g/dL, `until the adverse reaction abates or decreases in severity`. Here`s the link to that information...

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf

The 24 weeks treatment regime for gen 3 is based on the phase 111 `Valence` clinical trial which quoted a figure of 85 percent of treatment-naïve or treatment-experienced patients with genotype 3 after a 24-week regimen of Sovaldi + Ribavirin. I`m afraid I don`t have the figures relating to how a dose reduction would affect your chances of SVR.

Hope that helps.

Scruffy · Guru

Hi hepcsurvivor

I was told that also when your hb drops the riv is working. 10. hb isn't that bad. Mine was down to 7.2 at one time and after three transfusions and lots of procrit it stays between 9.4--8.7. My NP doesn't like it but my Doc is ok with it. He talked about dropping my dose once and I gave him a "look". He smiled and said we would wait a week. He never dropped my dose. Hang in there.

Best wishes

hepcsurvivor · Member

Cinnamon Girl wrote:
Hi hepcsurvivor, good to see you`re doing the Sovaldi/ Ribavirin combo now.
Ribavirin causes your Hgb (hemoglobin) to drop because it has a direct action on your red blood cells, causing them to break down faster than the body can replace them. This then leads to a lowered amount of oxyen in your system which causes the well known side effects of fatigue and shortness of breath. The type of amenia caused by Ribavirin is called `hemolytic anemia` and you can`t really do much to improve it by increasing the iron in your diet as it`s not the same sort of anemia as an iron deficiency.
If your levels drop too low, below 10, then your doctor can take remedial action to increase the level of red blood cells, either by decreasing your dose of Ribavirin or by prescribing `Procrit` which stimulates the body to increase rbc production.
Actually it`s usually taken as a good sign if your Hgb level drops, it shows the treatment is working!
Hope that helps answer your questions.

Yes thank you Cinnamon Girl, that helps me understand better.

Not trying to split hairs with this next question but - when you say "it`s usually taken as a good sign if your Hgb level drops, it shows the treatment is working! " do you mean that if it was not working my RBC would not be impacted by the Ribavirin ?

A far more important question (to me) is, does this drop in hemoglobin level off with most people who take Ribavirin? When and at what levels?

My NP already suggested cutting out 1 of my 6 200 mg pills which I declined - I do not want to fail again (this is a deja vu from last time. As I recall, I had low WBC then and had do cut the Interferon down I think).

If any have knowledge on what my chances for cure are if I reduce Ribavirin would love to hear of it.

Thank you again

-- Edited by hepcsurvivor on Saturday 1st of February 2014 10:24:13 PM

-- Edited by hepcsurvivor on Saturday 1st of February 2014 10:24:39 PM

-- Edited by hepcsurvivor on Saturday 1st of February 2014 11:24:06 PM

Cinnamon Girl · Guru

Hi hepcsurvivor, good to see you`re doing the Sovaldi/ Ribavirin combo now.

Ribavirin causes your Hgb (hemoglobin) to drop because it has a direct action on your red blood cells, causing them to break down faster than the body can replace them. This then leads to a lowered amount of oxyen in your system which causes the well known side effects of fatigue and shortness of breath. The type of amenia caused by Ribavirin is called `hemolytic anemia` and you can`t really do much to improve it by increasing the iron in your diet as it`s not the same sort of anemia as an iron deficiency.

If your levels drop too low, below 10, then your doctor can take remedial action to increase the level of red blood cells, either by decreasing your dose of Ribavirin or by prescribing `Procrit` which stimulates the body to increase rbc production.

Actually it`s usually taken as a good sign if your Hgb level drops, it shows the treatment is working!

Hope that helps answer your questions.

hepcsurvivor · Member

Hello,

I have been at it about a month. (Soldavi and Ribivarin). My Hemoglovin has dropped 2 points to 10 ish.

Can anyone explain in a simple an concise way why Ribivarin lowers Hemoglobin?

Do any know if eating an iron rich diet might help?

Thank you much in advance.

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