Ribavirn Reduced Due to Anemia at Week 24

[jackib4]

I am at week 28 tx GenoType 1a, combo tx. I was UND at 12 weeks, and again at 24, but at week 24 became anemic, was having chest pains and couldn't breathe. Doc reduced Ribavirin from 1000 mg to 600 mg and said if I was still UND at 24 weeks (which I was) that he would just leave me at the reduced dose. I have ready where it doesn't effect SVR as long as the cumulative dose is 60% during course of tx. Anyone have any input on this? I am concerned about SVR with the reduced dose of Ribavirn and he said hemoglobins weren't low enough (10.5) for Procrit.

[nygirl7]

I've never heard any information such as that in my life.  In fact from what every doctor I've ever been to has said you should not under any circumstances except a LAST resort drop your meds. If he was so concerned about your hemo he should have let it drop to under ten and given you the procrit rather than dose reduce. At least it was after the first 24 weeks but it does give the virus a good opportunity to come on back in. I don't know what you weight it but 600 is pretty damn low on the riba.

Hopefully you did get all of the virus out somehow before he reduced it so it won't matter but I would make sure you are getting very sensitive pcr's from now on in case of breakthrough.

I just simply cannot understand a .o5 hemo level making THAT much of a difference to anyone that the doctor would risk treatment failure, especially in anyone with a G1a or 1b.

Good luck.

[HCA]

I have read at least one report that concluded that ribavirin dose reduction post week 16 does not prejudice SVR.You are maintaining at 60% which was thought to be adequate according to the same report.(Sorry don't have time to find it for you!).
Think you should relax and roll with it.

[Trish77]

I asked the question in the expert forum of Dr. Dieterich when dosage reduction is preferable over rescue drugs such as procrit and he said "never!".  You can check it out for yourself. As much of the drug as possible as much of the time.

Your 60% number is inaccurate.  I just researched that for myself this past weekend as I've just been handed a dosage reduction rather than rescue drugs too and not happy about it.  The figure is 80% of cumulative dosage.  

Some questions for you if you don't mind to help understand the implications of this better...

What is your weight?

You say you were UND at 12 weeks and again at 24...were you tested prior to Week 12 and how did those results come back?  

When is your doc planning on testing you again?  

Really....I'm concerned that he simply plans to keep you at 600mg from here on in if he doesn't plan to test you regularly.  That's quite a drop to 600mg and I'm wondering why he didn't go to 800mg .. where does he get that number from?  800mg is on the borderline of that 80%.

You have altered your activity level to accommodate the fact that treatment drugs lower your hemoglobin, yes?  You'll have less oxygen in your blood going to your heart and other organs and you'll feel the impact of that.

If it were me, I'd be asking for the rescue drugs.  If he thinks this is serious enough to warrant dosage reduction then it's serious enough to warrant a rescue drug to bring it up, IMHO, unless you have other health conditions that make procrit unsuitable for you.  

The bonus is that you've been UND to Week 24.  That is in your favour.  

Good luck.  (And I hope I havent overwhelmed you with questions peppered at you!)

Trish

[Trish77]

When did this dosage reduction kick in?  I thought at first it was at 24 weeks..but reading again, you say the doc will leave you at that dosage reduction if you are still UND at 24 weeks.   Yikes!

When did you start at 600mg/day of ribavirin?

Trish

[jackib4]

Actually, he reduced my dose at week 25 which was my "24 week check" My blood came back UND so he left my dose at 600 mg. I too am very concerned about the dose reduction so I started taking 800 mg and seemed to hold my hown. Then, over the last couple of days I went back up to 1000 mg and felt near death. I am not working and try to take it easy, especially on days where I dont feel good. I usually sleep the whole day after my shot and then back up and around again. I might add that I started tx 1 1/2 years ago, and was UND at 12 weeks, however my mother was diagnosed with Pancreatic cancer and I was her primary caregiver. I became anemic and dropped from 149 lbs to 114 lbs (which for me at 5'9 was annorexic). They told me to stop tx. After my mothers death, gained weight and at 138 lbs started tx again. I am now at 125 lbs but seem to be holding my own. I also have panniculitis on my legs which they are saying is a reaction to the meds but should subside after tx. It is very ugly and very painful. Doc says Procrit is dangerous because of blood pressure but mine is normal. Other than the things mentioned above, I don't see cause for keeping the dose at 600 mg. Fire away! I need all the advice I can get. My next appt is in a few weeks and I am thinking about demanding Procrit and telling him I need to be taking my full dose! Unfortunately I cannot get Procrit if he will not subscribe it! All I can do is try to tolerate my full dose again.

[jackib4]

Also, in looking at the questions above, I left out that I was not tested for viral load until 12 weeks, not at week 4 like I have read should be done. Also, I should correct myself, the studies I read said don't drop down below 60% of original dose for a cumulative dose of 80% if UND. Sorry for the mix up on that. Like I said, I am trying tolerate as much as possible and 800 mg seems to be working well. I still am short of breath but no severe chest pains like before. I quit smoking before tx this time and do not drink, partake in any extracurricular activities. I eat healthy and excercise moderately and only when I feel I can handle it (light yard work, and housework, etc)

[nygirl7]

Hey Jack,

some of the people in here have had doctors who for one reason or another wouldn't prescribe them procrit - what they did was go to a hemotologist (blood doc as you know) and get THEM to prescribe it.

while procrit does have it's own set of problems that can come with it most doctors do realize once you get down under 10 you really DO need it. I will never understand a doctor who will not.

Dr. Jacobson also is extremely against dose reductions.  So you have Dr. D and Dr. J who are arguably two of the most important hep doctors in the world advising AGAINST it. That really makes me question your docs logic.

Maybe you should call your insurance company and see what requirements they have before you fight it out. If you know for a fact they will approve it - that might give you a good leg to stand on.

Dose reductions are just NOT such a great idea - not when there are other viable alternatives but this way maybe you would have the ammunition you need to get the procrit once and for all.

[FlGuy]

You are in a sort of tricky situation. At your current weight, 600 is slightly under-dosed from the nom.  At 800, you are just about right. Some docs stick fairly close to guidelines which may not call for procrit until hgb goes below 10, or some other level.  My doc agreed that the point was 11.  And, your insurance may not cover the cost until you hit a certain level.  In the past year there have been warnings to docs about procrit (see procrit.com).  I'd suggest that you have that conversation with the doc and try to reach some middle ground which may include trying to get a consistent 800 and inquiring about what insurance will do and when. I'm not so sure that your 'full dose' is 1000.

[jackib4]

Well maybe that would explain why 800mg is tolerable and 1000 is not for my current weight (125 lbs.) I have read that 1000 mg is the minimum that should be given but if it is weight dosed, I don't understand that school of thought. I understand the more consumed the better (within the guidelines of course). I too have read that 800 mg is right for my weight, but 1000 was probably correct before I lost the weight. I wonder if Dr. Jacobson or Dr. D. recommend staying at the higher dose after the weight loss and in addition to the anemia. I am already a bit nervous about taking 100 mg more than what my doctor has prescribed, but I am more concerned about relapse. Like I said, I seem to hold my own (short of breath, bad headaches, and very fatigued but able to tolerate) the 800 mg. I feel I need to tell my doctor that I have been taking the 800 mg so that if my hemoglobins have dropped again he will know why. I will take your advice and contact my insurance company as far as the procrit goes. If my GI still insists that I stay at 600 mg and that I should not get procrit, I will see if he will refer me to a Hemotologist. He sounded like he was one of those docs that got the "warning" about Procrit.

[Trish77]

I'm not clear .. have you been in continuous treatment for 24 weeks now?  Or are you taking the UND at the 12 weeks from your first round and resuming counting weeks from where you left off?   There's just a  wee question about that in my head and I'm sorry for being so dense.

However, density of my own brain matter aside, I'm going to answer based on the assumption that you've been on treatment for a continuous 24+ weeks now.

What week are you at now?  That will tell me how long you've been on reduced dosage.  Indications are that after Week 12 a minimal dosage reduction for up to 7 days can be tolerated if it must be done, if it's the ribavirin and much more impact if it's both interferon and ribavirin or the interferon on it's own.

Rule of thumb is really as much of the drugs as much of the time as possible.  In otherwords, strive for 100%.  The closer to 100% you can get, the better your odds.  That 80/80/80 rule is meant to indicate the lower end of a range you want to stay within but still be striving for that upper end of the range as much as possible.  The fact that you're past Week 24 and have maintained dosage until then is in your favour.  Past Week 24, there is LESS impact from reducing the ribavirin to within allowable levels, however not NO impact.  Remember the 100% rule.  

Having said that...you don't want to kill the patient while you're killing the virus.  So when your levels tank, to me the next thing you look at is rescue drugs first. Rescue drugs like procrit for low hemoglobin are always preferred in place of dosage reductions when there is no medical reason why they cannot be used.

Your doc sounds like he's not very experienced at treating HCV.  That's frankly what it sounds like.  I'm appalled that he would drop your dosage to 600mg and simply leave you there for the duration with no plan to test ongoing and to not consider going to 800mg first and see how you do.  To me, that is either ignorant or careless and I don't know which.   To me, he should be testing your hemoglobin on an ongoing basis to be sure you're recovering.  Sounds like he lacks the experience.

That also means, if he lacks experience, he'd be less likely to go with rescue drugs.  I've seen that time and again on these boards.  Less experienced doctors start getting nervous  and are more cautious than experienced HCV-treating doctors when their patients are having side effects that more experienced doctors recognize as a normal part of HCV that can be managed in various ways without having to reduce dosage as a FIRST line of defence.

I didn't even think about pursuing a hematologist in my own situation, nygirl's suggestion on the procrit.  I think that's worth