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 pursuing.  Perhaps others who did the same will chime in.  If your own doc isn't experienced enough with administering procrit and therefore less likely to use it, perhaps a consultation with a hematologist would help, who will be more comfortable with that and managing any effects from that.  

As FlGuy said, I'd pursue that angle with your insurance company, your current doctor and see if you can keep that ribavirin up as much as possible and keep some monitoring happening of your hemoglobin levels.  

If you can't get the rescue drugs, for whatever reason, I'd stick with the highest dosage that sits well with you.  If you absolutely cannot tolerate the 1000mg, 800mg is not so bad at your weight....even though, to be honest, it pains me to say that.  It makes every single person here nervous to take a dosage reduction.  It kills me at the moment to be taking 1000mg riba a day from 1200mg at Week 17, however I am hoping to change my own situation as well.  

At 24 weeks, being UND and at your weight...if you cannot get rescue drugs and you can tolerate the 800mg, I would go with that and fight for that.  I would also request regular monitoring of your levels, perhaps every two weeks.  Perhaps your family doctor would order these tests if your Hep doctor will not.  

There is greater impact to reducing early on in treatment, particularly in the first 12 weeks.  Lesser impact as you go and after 24 weeks being UND, lesser again and if you can keep that dosage above that 80% at 800mg for as long as you can manage, all the better.

Keep the 100% rule in mind and strive for it as much as possible all the time and reduce only by what is absolutely necessary to keep yourself going.  

Good luck.

Trish



Trish

[FlGuy]

In the HCV Doc Forum, Dr D said it's always preferable to rescue than to reduce.  As a former relapser, I certainly agree that it's always wise to give yourself the best chance at doing tx once even if you feel junky and/or need to call the calvary to the rescue.  And, it seems that riba dosing is not usually adjusted down due to weight loss but remains constant based on starting weight which is kinda counter intuitive.  It also seems that being up front with the doc is a good idea too. Good luck as you head to the finish line.  At least you are closer to the end than the beginning.

[nygirl7]

". I wonder if Dr. Jacobson or Dr. D. recommend staying at the higher dose after the weight loss and in addition to the anemia."

yes.  definitely.  I've never seen anyone have a dose reduction because of weight loss in the three years I've been here. I believe it goes back to the blood volume in our bodies and that does NOT go by weight.

I suffered drastic anemia because of reasons that I was foolish about including taking too MUCH riba (at my height and weight I should have been on 800 but I begged for 1000 and then took between 1400 and 1600 a day, crazy yes I was nutso).  I know how hard it is (I dropped six full points from 15+ to a flat 9 in just over one week). I kept fainting (I never knew it hurt inside your head when that happened) and had all the same bells ringing, head pounding, chest ringing things that you get. BUT it's CRUCIAL to keep up the highest dose you can and NOT give that virus a chance to come back in.

Easy - no.  Nobody ever said treatment would be easy or fun or enjoyable at all.  if you had cancer youd' make sure you were getting 100% of the meds all the time no matter how you felt. I went to one of the best doctors that money can buy and HE said not to reduce unless it was a last resort so I believe him.  The other docs say the same.

Your doctor doesn't seem to have too much experience with hep (my own didn't either but over time he learned from what I learned AND when I went to Jacobson he also got hooked up with him and it was marvelous) but we have to take care of OURSELVES.  If a doctor isn't up to speed on all the latest info it is our duty to show that info to him rather than fail just because he's reading out of an old text book.

Just stick up for yourself and do what you have to do.  Treatment WILL be over soon enough. You'll be surprised when its over how you don't want to give that riba up that right now you can't stand taking! It's a bizarre thing but the tx amnesia will take over and you'll wonder what you ever complained about and be glad you made it through.

Really.

[jackib4]

Thanks so much for all the input. It is mind boggling the amount of information out there and the amount of research we all must do on our own, like said above, for lack of experience on our doctor's parts or just lack of time on their part to stay on top of every single patient. I am going to tell him I have been taking 800 mg per day as opposed to his suggested 600, and I will stick to my guns on being agressive with this treatment. If it means going to a hematologist then so be it. I am getting in touch with my insurance company when I get off of here.

[jackib4]

Sorry Trish, I forgot to answer your question, I am not including my first round of tx since I quit after 12 weeks. I am taking Shot # 29 this Friday. I maintained 100% of my dose for 25 weeks. I took his recommended 600 mg of Ribavirin for couple of weeks and then went up to 800 mg on my own, and then this week back up to 1000 mg for a couple of days and then back down to 800 since I started feeling to terrible. I am going to stay at the 800 mg and talk to my doctor about my dose, my test results and a possible referral to a hematologist if he is not comfortable keeping my dose higher and prescribing rescue drug. That is my final decision...thanks again for all the input!

[Trish77]

All I can say is ... you GO, jack!!!  :)

Get copies of your test results, jack.  I learned that here.  If you go see another doctor EVER, then you have them.

Best of luck!!

Trish

[comeagain]

Hit the road virus and don´t you come back no more no more..........

I´m with you jack also wanna say go go go.nice you so determen sending encouragement and strengt your way.

May the good God bless and protect you !

ca