My Riba-Anemia Will Not Go Away

[KimInTheForest]

Maybe I am just too impatient. But I am now 9.5 weeks post-treatment, and my hemoglobin has barely budged from its EOT level of 99 g/L. (Reference range: 120-150 g/L).

As of yesterday (2 full months with no ribavirin entering my body), my hemoglobin was just 100 g/L - essentially no change from EOT! This is really getting old.

My Red Blood Cells in that same 2-month period of time have increased from 3.1 tera/L at EOT to 3.66 tera/L yesterday. (Reference range: 3.9-5.5 tera/L)

I have been taking 25 mg of iron chelate daily for the last month because we discovered I was iron deficient. And my serum ferritin level has responded somewhat to that, increasing from 29 ug/L to 41 ug/L in the last 30 days. (Reference range: 15-180) But that still leaves me in the "Probable iron deficiency" category according to my lab.

Results:

EOT 
   Hemoglobin: 99 g/L
   Red Blood Cells: 3.1 tera/L
   Ferritin: unknown

5 Weeks Post-Tx
   Hemoglobin: 103 g/L
   Red Blood Cells: 3.5 tera/L
   Ferritin: 29 ug/L

9 Weeks Post-Tx
   Hemoglobin: 100 g/L
   Red Blood Cells: 3.66 tera/L
   Ferritin: 41 ug/L

I am very thankful of course to be rid of the Hep C virus after 45 years of living with it! And that's what I am trying to stay focused on right now - My New Life. But it is very frustrating to not be able to shake this anemia after 9 weeks with no ribavirin.

Wellness to all,
kim

[terih]

Hi Kim! Sorry this is still going on for you! My first thought is maybe get in touch with whoever makes the riba and ask them if they know of any other cases like yours. It seems to me that you and your Doc have done all of the proper testing and treatments. It certainly couldn't hurt and maybe they would help you find a direction towards resolving this!       Teri

[KimInTheForest]

Hi Kim! Sorry this is still going on for you! My first thought is maybe get in touch with whoever makes the riba and ask them if they know of any other cases like yours. It seems to me that you and your Doc have done all of the proper testing and treatments. It certainly couldn't hurt and maybe they would help you find a direction towards resolving this!       Teri

Thanks, Teri. I may try that. You would think with Ribavirin having been in use for nearly 20 years for Hep C patients, that there would be more info online about the post-tx rebound from the anemia. But most of what I have seen just says it can take up to a month post-treatment for hemoglobin to return to normal. And I am way past that…

kim

[Philadelphia]

I can only give my own info - I went from 102 to 111 within ten days. So to not move sounds strange. Might need more investigation.

[Lynn K]

Found some information

DELAYED RECOVERY OF PEGYLATED INTERFERON AND RIBAVIRIN INDUCED ANEMIA

http://www.natap.org/2003/AASLD/day8_3.htm

When Hb recovery was defined as a return of Hb to within 1.0 gm of baseline, 38 (49%) patients in the overall group recovered by follow-up week 4, 28 (36%) patients by follow-up week 12, 7 (9%) patients by follow-up week 24 and 4 (5%) patients did not recover by follow-up week 24.

The authors concluded:
 
1) Recovery of hemoglobin to baseline levels may take longer in patients who have been treated with pegylated interferon and ribavirin than what has been reported for patients treated with standard interferon and ribavirin.
 
2) In patients treated with pegylated interferon and ribavirin, return to baseline Hb levels does not occur in all patients by follow-up weeks 12 or 24.
 
3) In patients in whom the anemia does recover, it may take up to 12 weeks after treatment is discontinued, to do so.
 
4) Erythropoietin use may facilitate recovery from anemia.
 
5) Further studies on anemia recovery after treatment with pegylated interferon and ribavirin are warranted.

[KimInTheForest]

Thanks Lynn & Philadelphia for your replies.

So I see from that link you posted Lynn that some patients required 12 weeks or 24 weeks or even longer to regain their pre-treatment levels. However, I would expect longer recovery where interferon is involved since it suppresses bone marrow production of red blood cells. With these new treatments, supposedly nothing is suppressing the bone marrow. Nevertheless, I guess my situation is not totally out of line. I'll have more labs in 3 weeks. That will be my 12 week post-tx labs at which I very much hope to achieve my SVR12. Will be interesting to see if my hemoglobin is starting to recover by then.

kim

[Lynn K]

yes those were my thoughts as well about the result being not entirely applicable but still enlightening just to show your situation is not entirely unusual

Hope you get those numbers back up sooner rather than later

Lynn