anemia from incivek

i would appreciate any input on anemia issues with triple combo treatment ..
i have been treated with interferon and ribaviron twice before and responded but relapsed but never have anemia..i am stage 2 geno type 1a and now.i am on week 14 of the 24 week triple combo treatment determined to get theough it and get cured but i really got nailed with anemia from the incivek and have been on procrit since week 8.  when my hgb reached a low 0f 7.7 . i was able to make it through the 12 weeks with full dosage of med but the anemia is not going away quick enough so last week my dr dose reduced my riba from 800 to 600 .. i dont feel better.. my heart is always racing and i cant sleep.my hgb is going up slowly it is now up to 8.9 but i am /was an athlete before treatment and had hgb of 14.5 ..so 8.9 still does not feel so good.. i can take it if i have to but the heart rate or above 100 is driving me nuts...  has anyone tried heart medication to decrease heart rate? that is my drs next step .. or does anyone know how long it takes to bring up hgb after end of incivek course? thanks so much !!

[working dog]

with low hgb you should get lab work at least once a week....good luck....billy

[crossroadsec]

I'm pretty athletic too. I'm taking Nadolol which is a beta blocker to keep down portal hypertension. 20 mg evenings. I wonder is that is why I haven't had so much problem (a little on exertion) w heart rate? I'm a no caffeine girl who started drinking a can of coke a day. Thot that would make my heartrate go up but it didn't. Keep us posted.. Talk to dr.. Karen :)

[redsurfer]

thanks i am going to talk to my dr tomorrow and that info helps

[his3707]

what about some procrit?  Never heard of anyone taking heart meds for that.  Since it is not a problem with the heart.   I am also taking iron, folate, b-12 to help with the anemia.   (not everyone should take iron only if low)

[his3707]

and on the iron, people with extenive liver damage probably shouldnt take it either.  talk to your doc about it.

[redsurfer]

ive been on procrit for 6 weeks.. it is helping but still very anemic and having trouble with the heart rate because of it .. the heart med brings down the heart rate so you dont feel like your heart is going to explode ..

[redsurfer]

thanks for the info the dr gave me perscription strength iron and folic acid today.. and a beta blocker for the heart rate.. my resting h/r was 110... hgb 8.7 ..

[Light_and_Love]

My fiancé is in his 11th week on the triple therapy (only one more week on Incivek--YAY) and the anemia got him at around the 9th week. His hct and hgb were "dangerously low" and it was so bad his docs took him off the Ribavirin for week #10 and ordered a blood transfusion (oddly enough, that's how he got Hep C--back in 1966). He's now back on the Riba and back to normal with the Incivek and Pegasys and although he's still tired and sometimes weak, I think the transfusion did him good. He was never prescribed Procrit (or an equivalent) for the low blood levels.
Good wishes to all on this therapy.

[Proactive]

It is going to be interesting to see how this relationship (known prior to fda approval)  between Incivek and anemia plays out. Reading the various replies here the past few months, it seems far more pronounced than reported by Vertex. Given the additional labeling on the hgb helper drugs required by the fda last year, one has to wonder if further study will be requested by the fda.

Pro

[frijole]

light and love   and redsurfer

What have your PCRs been?  When did you clear?  Have you treated before? (redsurfer, you have)  and will you be doing the 24 or 48 weeks?

I think the possibility of anemia was very understated for Incevik to patients going into treatment.  From what I am seeing on the board, there does not seem to be much difference in anemia with the Incevik and anemia with the Victrelis (which was a known factor).

I am trying to track the success rates of triple therapy.  I take shot 7 tomorrow and am doing Victrelis.  

frijole

[nygirl7]

How much procrit are you on a week?  When I was only on 40,000 once a week my hemo did not budge but once he put me on 40,000 2x a week it went up nicely - too high (over 12 which is the cut off) and we had to back down to 40,000 every 5 days.

It's not an exact science and sometimes it needs to be adjusted and played around with to get it just right.   Believe me a 10.5 never felt better, something you can't imagine when it's on the way down.........but going up it's like heavenly!

Deb

[redsurfer]

hi... i cleared at 2 weeks and will be doing 24 weeks total... now that i am on week 15 my hgb is finally going up it is now @ 9 ..that number still does not feel good but at least i know i'm finally going back up..
im on procrit once a week they dont seem to want to increase it..maybe cause i only weigh 120? idk?
btw i took the beta blocker for one day and my heart rate went down but my face swelled up so i called my internist not my hepatoligist and he had a huge fit ..told me to stop taking it  he said when you are anemic your heart needs to beat fast to supply oxygen ..
hope everyone is having a good day ..i know this is hard but we all need to stay focused and remember why we are doing this.. it is difficult for other people to totally understand ...i might be physically weak but i'm trying to stay mentally strong ..

[screaming48]

I have been on treatment since the 9th of Sept. I was taken off riba last week because of severe anemia. Hgb is 8 now I have been put on procrit 3 x week, it gives me a really sick headache and makes me feel not all there. Doctor said if it did not get better soon I would be taken off treatment. What a waste of time for me but I do feel really really bad. Hope you can get through it best of luck

[redsurfer]

ask your doctor for a blood transfusion and if he or she wont do it go to a hemotoligyst and see if you can get one there... dont give up.. you could even get a second opinion from another liver specalist.. i know this seems like a lot of work when you are anemic but it will be worth it.. believe me i know what it feels like to have hgb at 8 and lower...it ***** ...mine is finally coming up because of procrit  im on week 15 ... i did not dose reduce  because my dr agreed to let me fight thru it ..some drs are more aggressive with treatment.. they are all so different ..just dont give up !!!
ps ask for vicodan for the pain and headache it makes it easier to deal with also i take zofran a couple times after each procrit shot to help with nausia...

[streamline569]

I'm surprised to hear of sides from procrit. I didn't know there were any, I take it once aweek and it has just kept me between 10.8 and 10.4. Now that I"m pass the crucial points my doctor said it was OK to lower the Riba which I welcome. I hate that drug. I think I've gotten the most sides from the Riba.
@screaming48 I just want to let you know how sorry I feel for you. I've been reading all your posts and it just doesn't seem fair that some people have to suffer as much as you have. Please feel better.

[streamline569]

Darn I was so worried about the anxiety and the drugs I took my riba at 3 pm today and forgot to eat with it. I just ate now an hour later. Hope I didn't screw up. I guess that why we shouldn't take to many drug relaxers while on treatment. Ugh

[Light_and_Love]

Fiancé was treatment-naive and VL at start was 9,240,000.....undetectable @ 4 weeks. We thought it would be 24 weeks (according to what we've read), but last visit with the doc he told us "maybe" 48 weeks. God, I hope not. I know the patient has a harder time than the caregiver, but it's getting harder and harder to take the severe mood swings and anger that is sometimes directed toward me. We're in week 11, so hopefully when Incivek is done after week 12, he'll be a little closer to his normal self!

[streamline569]

I did the same thing. I thought I would be treating for 24 weeks which is still an option, but we have a higher rate of success of clearing permanently if we go the 48 weeks. It depends on different things. In my case I have early cirrhosis so they recommend more weeks. According to the trials I may have a lower cure rate with the 24 weeks. The 48 would guarantee a much higher rate. I still haven't decided. I know how you're feeling. Good luck to you and your husband. All the best on your decisions.

[Light_and_Love]

Thanks....we were hoping for the shorter duration, but of course, if more weeks will guarantee a better outcome, then I'm all for the 48 weeks. That just seems so endless (for both of us).  Thanks again for the kind words; I wish you all the best on this journey, too.

[crossroadsec]

Sry to hear Nadolol didnt work. Im cirrhotic n have to take it for portal valve. No se from it.. I'm trying to get ins to pay for procrit.. Hmmm. The transfusion did wonders. If I could have one once a month for the next several months I'd be fine w that. This of u going 48 total. It's gonna be a long year... We'll stick together!!

[Dee1956]

Hello I too am suffering from anemia, tires me out just to type. I am on Incivek, Riba, Peg.   All I seem to be able to do is sit and read.  Once in a while I can type.  Calling the doc to see if I need to get blood rechecked as I have no bloodwork scheduled for 3 weeks.  I normally have a higher than normal HGB (like a guy they say) don't know what it is now except "stable"  I guess not every patient knows their numbers so it's not always a given.  Doc closed for now, will call again tomorrow and try to enjoy doing nothing, ha ha
Take care

[working dog]

with low hgb you should get lab work at least once a week....good luck....billy

[Dee1956]

Thank you, I suspected that but could not reach the doc to tell him how bad I feel

Dee

[redsurfer]

yeah get the blood work asap..i get mine done every week sometimes twice ....and if your heart rate goes above 110 you should go to the emergency room .. thats what my dr told me ..you might need a blood transfusion .. your probably fine but ...just be careful
i hope you feel better soon

[zedd]

I am in Canada and we still havent gotten the word on if the pharmacare will pay or not for victrelis, I have 1a and cirrhosis and low bloodpressure runs in my family with me having low pressure. I think I have found a financing option to pay for the victrelus and i know I am covered for everything else. Any one with low blood pressure to start with have any experiances to share so far?

[Mothergator]

Totally understand how you feel about the mood swings and anger!  I really hate myself at times because I just have so much trouble controlling it.  My daughter just does not get it or understand all the side effects I deal with, and actually believes if i rested I should be good to go!  lol.  This is my 3rd treatment since 2007 and they dont get any easier.  Right now dealing with a mean rash from Incivik, bruising all over, energy so low I have problems even walking. lost 30 lbs in six weeks. food taste like cardboard and want to punk just thinking on taking a dose.  I just keep telling myself this will be the last treatment.