interferon treatmet haemoglobin levels low

[destiny666]

im on wk five and have genotype 1 hepc im doing 48wk course treatment five pills a day and a injection once a week. by three and a half weeks a became breathless and very tired i couldnt walk very far at all without having to stop. I got my bloods three days ago and i was shocked to see my haemoglobinlevels real low theyve gone way down on the 31-7 they were 134 then 7-8 was 116 and now 21-8 100 im shocked esp when save zone is 120-155. oh **** .. and to top it all off i live in dunedin nz and our hospital is locked down due to a big virus scare.and my nurse only works wed to fri im worrried what do i do .Is there anyone out there that this has happened to any advice id love to hear from you . Ive been in bed for days as just walking to the toilet is draining.i need or want to talk to anyone out there doing this treatment i feel so alone and just having someone to talk to would help me gewt through the day. thanks

[theflyjd]

hi destiny. a month ago i finished treatment (57 weeks infergen daily shot 6 riba) and was on Procrit the whole time. my hgb level went down to 8 after the 3rd week and the dr put me on procrit 20K units. after a week he determined 20K wasn't strong enough so he put me on 40K. i remained on 40K for the remainder of my treatment. while on the procrit my hgb never rose above 9.6. i was always tired. a year before that i did a much different tx (interferon 1 shot a week w 6 ribavirin a day) and the procrit worked great! i was able to do marathons with the help of the procrit. so i guess what i'm trying to say is that a lot depends on what treatment u r taking. my first tx 3 years ago created some emotional problems as opposed to physical and procrit was not available. if you are at 8 ur dr will put you on procrit. what that does for u depends on the treatment, ur physical condition and other factors. hopefully ur hgb will bounce rite back up and u wont have any more problems.

[destiny666]

destiny666 here hey thanks for your reply and sharing some of your story bwt how things going for you.. Yes my nurse is over worked too. They only have two nurses in dunedin that do the interferon, so theres a long wait to get started, not much funding i think. I waited 20 months after having my biopsy , thats when they done all the tests and found out how bad i was. Ive had hep c for 14yrs Im 34yrs old , anyway the first ten years I had no side afects untill 4 yrs ago, thats when it all started it was awful, so I know even though im feeling drained atm I know it will improve my life greatly.My livers loving the treatment my liver count has gone from 56 to 20 im so happy with that. The safe zone is between8-30 within six days of starting it went down from56 to 29 and now week five its 20 .Thanx once again for sharing keep in touch lol

[portann]

Hi Destiny,

I am in week 13 of the exact same treatment you are on. I'm a 1A. The experience has been very isolating for me and this forum has provided me daily contact with the outside world.

I know it's very alarming and frightening to feel tired the way you do. My husband got as white as a sheet watching me try desperately to catch my breath walking upstairs. I was shocked how 'dead' I became right from the start. My experienced nurse thinks I'm doing 'fine'.

At first, I kept trying to hold onto my expectations of what my day should be like. Now I just fantasize that I'm going to do a lot and accept that I barely do anything, except drink water, go to the bathroom and play cards on Pogo. And I'm usually very active outdoors, so I'm bored and frustrated out of my mind.

In the first few weeks, I found I could still go for longish walks, as long as it was perfectly level. Any incline made me scarily breathless. Then, for a while, I stopped having the energy for even short walks.

Although many advocate early introduction of Procrit to counter the RBV pills effect on HGB, my doctor prefers that I surf between 10 (NZ100) and 12 (NZ120) (hemoglobin) without adding it. (My nurse did give me Procrit to keep in the fridge but said to wait if it goes below 10.) I'd probably feel much better on the Procrit but am willing to stay below normal, at least for now. And everyone's experience is unique.

Others can tell you better than I but 10 (NZ100) HGB may be a red flag, in case it's trending downward.

I can't explain it but my Hemoglobin has gone up by itself in the last three weeks, although still below 'normal'. I actually do more - some days - but it's still very little.

My family doctor would be alarmed by my CBC numbers but my specialist doesn't tell her what they are because he doesn't trust her to understand them!!  My white blood cell counts are even lower than my red but apparently are okay if on treatment.

It's important that your nurse diligently monitor your levels and that you stay in touch regularly with her. My nurse is very overworked, so I largely - no, completely - cope with side effects through this forum but contact her regularly to make sure she checks and interprets my lab results.

Although I've never used it, my nurse has a 24 hour pager for her heppers on treatment and I know a young nineteen year old fellow telephoned her at home for help at 3 AM last week.

It must be Sunday in New Zealand, so it is a very long time to wait for your nurse until Wednesday. Ask her about a pager, in case you need to reach her outside her limited hours. I know my nurse would prefer I phone her in the middle of the night rather than go to emergency because she thinks they 'mess up'  treatment!

I don't know why I wrote you so much, given how tired we both are!!! That Australian diver was magnificent today, wasn't he? He's not tired, lucky guy.

[Marcia2202]

Sorry that you are feeling so low. It is a typical side effect from the Ribavirin pills. I assume that your hemoglobin went down from 13.4 to 11.6 to now 10.0. Usually the doctors wait to give the rescue drug epoetin alpha brand name Eprex, Procri... until your levels fall below 10. So you do not need to be too alarmed. It should be okay to wait until Monday. But just monitor yourself. If you feel that it becomes an emergency, you will need to get to a hospital.

I have not experienced this myself, as I just started treating and maybe I never will. We don't know what will happen. I'm sure some of the experienced people will soon chime in. They are probably still asleep, as most are in the US.

Good luck and hang in there.

Marcia

[JennyPenny]

That is most likely from the ribavirin, not the interferon. While 8 is really low and can make you feel terrible, waiting til Wednesday shouldn't be a problem. Wishing you good luck.