hgb down to 9.2...course of action?

Hello. Geno 10a=3. weight 162 lbs. Treating with pegasys/800 mg riba...not weight based. Sides managable except for the anaemia which has set in. Still working 10 hours a day and driving, though do feel a little weak now
Pretx hgb was 13.
week 4==UND
Last week was shot 12 of 24....Hgb was 9.2
todays shot was 13 of 24 and hgb is 9.2
Planning to start EPO on next Monday
My questions are:
1)Since hgb at 9.2 is already low, should I reduce my riba immediately since EPO takes around 3-4 weeks to take effect?. I do know that we should never reduce the dosage of riba but just checking

2)Also,how units of EPO per week need to be taken under these circumstances?

3)Is it still ok to continue working 10 hours a day with a hgb of 9.2?

Any opinions would be highly appreciated
Regards

[shastri20032003]

Last week was shot 12 of 24....Hgb was 9.2
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this should read"Last week was shot 12 of 24....Hgb was 10.2"

[B-bunch]

The first question I would ask you is, why isn't your doctor answering these questions for you. 9.2 HGB is low and needs to be addressed ASAP. You could have a heart attack. I had anemia too when on the TX. My HGB dropped to 8.2. I was on a drug trial for Schering Plough so they just tried Procrit 40,000iu each week and dose reduced my ribavirin from 1200mg to 1000mg. Even after 6 months on this treatment I never got above 9.5. So they dropped me from the trial.

You should dose reduce the riba and start on the EPO/Procrit ASAP, I started with 40,000iu but you can double that dose. Also start taking 1000mg of vitamin C and 800mg of vitamin E this will help to boost your HGB. Also, how in the world are you working 10 hour days and driving? Do you want to wreck your car? I had to stop work altogether. WOW. Are you like Superman or something? If you don't have to work or can take some time off, now would be a good time to stop work and get some rest, you are taxing your heart when you have anemia and working 10 hour days is only going to make it worse in my humble opinion. I would have my heart rate checked and blood pressure, also check your platelets too.

I'm re-treating in a few weeks and the doctor is putting me on Procrit before he starts me on Interferon/Ribavirin. If your HGB goes down to 7.0 you will be needing a blood transfusion. I'm not kidding. This is VERY serious. I had one hepatologist who refused to treat me because he was afraid of the anemia, he had a patient die from anemia on treatment.

1.Stop work.
2.Call your Hepatologist what is UP with your doctor?
2.Start Procrit, they have a patient assistance line, so you can get it free.
3.Dose reduce riba (you can always up the dose later).
4.Immediately, like NOW.

[geterdone]

Dude, slow down... one step at a time. What might be good for you may kill someone else... See your Doc. first.

jasper

[ladybug52]

Hey how are you, other than weak?:) Why are you waiting till Monday to do the Epo injection? Are you doing it in your dr's office or are you having it delivered then?
Hate to be redundant, but what is your dr telling you? Is he leaving the work decision up to you? I would hate to give you advice on the riba, but I will say when I was taking procrit, it worked sooner than 3-4 weeks, I felt better in about 10 days, usually it takes about 2 weeks.
Do you feel like you can continue working? If it came to a choice, would you rather work and cut riba, or stop work and continue riba? Or stop work and stop riba?
I just drug myself to work and continued riba. Took a lot of naps in the car.
A lot! Never did climb in the patients beds though!
But Shastri, my hgb never got as low as yours (mine was 10.1 before procrit) and mens is suppose to run higher than females. I hate to hear about transfusions stories, passing out stories, and txing no matter what stories. You were und at 4 weeks so your chances sre good even if you reduce the riba.
Just giving all the scenarios I can think of. It's a personal decision, and I know you will do what's right for you, (if that oxygen starved brain can still make critical decisions!)
Hugs,
Bug

[pigeonca]

Sorry you're having so much trouble, but I'm just amazed at your stamina.  I couldn't work at all on tx.  In any event, as a geno 2 who's UND at week 4, you might consider quitting after 4 more shots.  

Check this out: http://www.hivandhepatitis.com/2007icr/ddw/docs/052207_a.html

If you can tolerate 4 more weeks at full dosage and the assistance of some procrit, your chances for SVR are only slightly less than going to 24 weeks.  Best of luck.

[nygirl7]

NEVER EVER REDUCE YOUR MEDS UNLESS THERE IS NO OTHER COURSE OF OPTION!!!!!!!!!!

I took epo once a week and it didn't raise my hemo it just kept it from falling any further. Finally the doctor put me on twice a week - but that raised it too high.  Eventually we discovered that about every five days was sufficient to keep me going.  My hemo hovered in the mid10s while on treatment for 72 weeks - eventually my body got used to this and it wasn't really that bad at all.

Epo works differently for everybody so sometimes it is a bit of trial and error.

My hemo fell six full points in just ten days.

I was almost completely incapacitated - kept fainting dead away in fact - but I did not lower my riba.  It's just crucial for us to keep our meds at the level they are at so the virus doesn't have a chance to come smashing in.

Good luck.

[GoofyDad]

Based oin my pers. experience, and what I've read here 9.2 is not dangerously low. Ins. often won't approve until you're under 10 - and then it takes a while for the meds to arrive - so this is not an exteme case. I know you feel rotten though. I don't feel as strongly as NY that dose reductions need to be avoided -it's a case-by-case thing - in fact I think she elected to reduce her riba at the advice of a doc. But being at 800, I would be reluctant to reduce it if I were you.

In fact, in fairness, I was GT 3a, and on hight weight based 1,200 for 160 lbs, and it took months for me to agree to reduce by 1 pill - so yeah, when your on the meds you have a diff perspective. BTW, I was well under 9.2 for a long time. No heart attack - but I do think it took a toll on me.  I'd worry more about the long term. Good luck.

[motheroffour]

Agree, that you probably don't need to panic about your HGB, but if your doc has not said anything to you after reviewing your latest CBC, then I would definitely discuss it with him.  HBG rates are different and it's more about symptoms and of how you feel, if you start at 17 then just maybe 9 is really going to affect your physically.  If you start at 10 or 11 then 9 something you may not feel at all.  I told my H that he will know definitely when the anemia is impacting him and as someone who suffers bouts of anemia, I can say it's different than the fatigued feeling you get the day after your shot.  Talk to your doctor, there's no hard and fast rules about when to take actual drugs to combat.  Also HGB can fluctuate, we notcied that with my H.  One week it would be 10.6 and the next week it would be 11.2 and the third week it would be 9.8. It bounced alot early in treatment, then stabilized and now at the end its bouncing around again.  He could not feel those slight differences at all.  He could not feel the difference between his starting HGB of 14.7 and the 9.8. Call your doc, describe what you're feeling and he should know pretty quickly if your symptoms are low HGB or just from the treatment.  You may be really sensitive to the change and your doc should be able to make suggestions to combat that. Also know that docter's take different approaches, some will lower Riba pretty quickly, others will take a wait and see approach and have you do frequent CBCs and other take a drug approach.

[copyman]

Hey B,  what you say is true about heart attack, etc but many people treating have their hgb drop and proceed with a course of action. with what you posted you could scare a person to have a heart attack.

[shastri20032003]

Thanks for all your inputs which made me ask the hep a few questions today

He has asked me to continue working but to go slow.Lets see how far that is possible At this point he has recommended me not to reduce the riba dose

Monday onwards plan to start epotein beta(Rockerman) 10,000 units per shot twice a week as we donot have Procrit or EPO in Indonesia. Have checked out Rockerman on the internet and seems bonafide. Based on the effects of these epotein shots on the hgb they will plan my course of action for the following weeks

I will obviously be leaning towards finishing 24 weeks but will play it by the ear and stop earlier if necessary with a minimum of 16 weeks done

Ladybug...Yes..my weekly Pegasys shots are also given to me by my doctor. Here in Asia the doctors administer the shots themselves and thank God for that! I cannot imagine injecting a needle into myself or anybody for that matter!
Before I had started tx..I was more worried about injecting the shot to myself than the side effects of tx and spent hours in front of the video recording on the Pegasys site which taught you the art of injecting yourself! Then I used to practise with a pencil in front of a mirror and my 11 year old daughter was wondering what  was up to!  Then a miracle happened...I discovered the hep could inject me! Yippeee!!!

Regards