My Health is a mess since Sovaldi Ribavarin treatment

[shEEEsh]

Finished in mid March. Almost immediately felt awful.  Actually felt pretty great while taking it (3 months) but towards the end I started with symptoms like tired and itchy.
Tired became, too tired to hardly walk to the kitchen .. Went to a hematologist/oncologist because I was sure I was dying !!!

I was very anemic.  I got a bag of iron once a week for 6 weeks and a shot of B12 every day for a week and then once a week for 5 more weeks.  Mean while the hematologist was ignoring me when I asked could this be due to the meds for my Hep C.  He wanted me to have a bone marrow biopsy. 

Two months later, I am anemic again and I have to have another month of weekly IV iron. He still wants me to have the bone marrow biopsy but if it is due to the Sovaldi and Ribovarin I don't want to subject myself to that pain.

He doesn't think I have Leukemia but thinks I might have Multiple Myeloma.  I was reading about it but not getting too deep into it because I haven't ruled out the Hep C treatment having something to do with it because it says that these proteins in my blood could be due to multiple myeloma or a bad liver .. HELLO DOCTOR !!! A BAD LIVER !!  My liver isn't very bad, no cyrossis .. but I don't know .. I just thought I would bring my case to this court before letting the hospital drill into my bones for some bone marrow.  Diane

[KimInTheForest]

Very sorry to hear of your problems, Diane. Sounds awful. Speaking here as someone who has just finished 12 weeks of Harvoni+Ribavirin, I do know that for the anemia induced by Ribavirin (which is hemolytic anemia), it is NOT advisable to treat that with extra iron. That can actually put one into an iron overload position, which can be damaging to the liver in particular but also other organs. Only iron-deficient anemia benefits from being treated with iron. Hemolytic anemia does not involve iron deficiency.

Now I have not seen your blood work (and I am also not a doctor). So perhaps in your case there is a reason for giving you all this extra iron. But I can tell you that for most of us here who develop hemolytic anemia as a result of our ribavirin during hepatitis C treatment, it would be damaging to take all that extra iron. Have you seen your lab results? Are you actually low on iron? Or just low on hemoglobin and red blood cells, because that is the result of ribavirin-induced hemolytic anemia, and iron is not the remedy.

best of luck, and keep us posted!
kim

[shEEEsh]

99% sure I am low on iron.  I had asked could I take a supplement and he said that I am too low for that to help. I am going to ask for a copy of my blood test and take that to the Hep C doctor ... But then there is the question about too many or too much proteins in my blood ?? I don't know, I am just tired of being tired !!

[KimInTheForest]

I hear ya, Diane. No one wants to be tired all the time. And for sure, if you are indeed low on iron, then taking iron right now is a good thing. Here's hoping you get some answers soon.

best,
kim

[Tess1971]

How are your kidney lab results?  Too much proteins can result when kidney function is compromised and too much iron can definitely be toxic.  My Hemo went down during treatment but not too far down and went back up post treatment.  It did take quite sometime to get back up to where to was before though.  Also on my last blood work I was slightly high on the protein, about a half point (.5) over the norm which is higher than usual for me.  Hepa/Gastro stated that it was not unusual post treatment.
I am sure these treatments are rough on our kidneys since they have to clean the drugs from our system along with the liver.
I am post treatment since Nov2014 and still dealing with the slow healing process so I am sure these drugs have many sides not known to doctors since they are new and we are the proof.

[MelHu]

Hello Diane
I've just taken my last sovaldi/ribavirin on Sept 19 for 12 week treatment for
GT 2b
Beginning VL 3,250,000 mil IU/ml
F3 liver stats
On week 6 VL 49 IU/ml
On week 8 VL 40 IU/ml
On week 12 VL < 20 IU/ml detected
I'm hopeful that I will clear post treatment SVR
Well the reason I'm interested in your post because I too became anemic from the Ribavirin. And I guess it's part of the package. Sure kicks you where it hurts but I feel a small price to pay for the payoff.
But also I am in the pre-stages also for multiple myeloma. I have been monitored for the last 14 years. My oncogist tells me that I caught in early and yes the biopsy is important along with the skeletal surveys. Biopsy wasn't as bad expected. I kept thinking about all the children who brave that!!  Earlier detection means better chances for TX for multiple myeloma. He tells me TX could prolong my life. I am a 61 year old grandmother and I just have SO MUCH TO LIVE FOR!!!  We live in such a world full of miracles!!!!

[KimInTheForest]

I too got very incapacitated (bedridden actually) for at least 6 weeks post-tx. Am just coming out of it this last week. And like you Diane, I too was quite anemic from the ribavirin. It turns out I was also low in iron and B12, like you Diane. So I am now on daily oral supplements for each. Am also taking Vitamin D because I was in the low end of normal for that when tested. And there is some correlation between the patients most affected by the riba-anemia also being lowest in Vit D.

Am hoping my health will return once I get my hemoglobin and red blood cells and iron and B12 and Vit D all back into the normal range - really, high normal is what I am aiming for.

Thrilled to be cured of course (although I won't have confirmation of that for another month, but it seems like the virus is gone, I got my SVR4). Just wasn't expecting this disabling post-treatment aftermath, which so far has been worse than anything during treatment. And pre-treatment I was healthy with no probs apart from HCV.

We'll all get there sooner or later. Stay focused on the positive. There is beauty to be found in everything. I just made shortbread cookies, and I am cooking up a bean and kale and mushroom soup on the stove right now. Yum!

kim