Hep C Discussion Forum

ucbgal · Senior Member

RE: Third Week Lowering Dose of Ribo...nooooo

Gracie · Guru

Just took the last two of the day which means 800 today too. Also texted my nurse about Procrit. Wondering if it's available in Canada. You give yourself procrit shots?

Do you think exercise helps? How do you do it with no breath? I do about ten minutes at a time of work around here, laundry, vacuum etc., then I need a rest. I still work Monday to Friday and feel safe there so glad to have the distraction really. Think I would go bonkers staying home every day.

Week four... Wow... Big overwhelming week ahead...

ucbgal · Senior Member

gracie,

i like your spunk and attitude . you're so on the money when you said we know our bodies better than the drs. during my last 3 weeks of tx, my hg went to 7.2 scruffy's correct on shortness of breathe & rapid heartbeat. also i experienced extreme dizziness , stress and total exhaustion. despite all that i kept up w/ my work outs and stair climbing. next i googled the cyclical breathing scruffy mentioned. by golly i do it for 5 to 10 minutes per day & feel more blood & oxygen circulating throughout my body.

i cannot stress the importance of getting the rx for procrit. if it wasn't for that red blood cell shot i would've had transfusions on a monthly basis. in addition during my last 3 weeks, i didn't listen to my dr who advised me to only take 2 ribo/day. instead i took 4/day & 2 shots of procrit. i listened to my instincts & got advice from this forum.

best wishes & keep us informed.

sandy,ucbgal

Scruffy · Guru

My symptoms were/are Shortness of breath. If i walked a quarter mile it was almost like a stress test, rapid heart beat and light headed. It all depends how anemic your are. If I walked and stopped to take a drink of water the time I spent drinking and not breathing would make me feel like I was gonna pass out. I was really anemic then. It kinda makes you lazy all the time, thats when you have to fight. Go for the transfusions if you have to its no big thing and you feel better right away. You can deal with the side effects of being anemic but let your doctor deal with the anemia. The tonic drinks are good and might help but there no match for the riba. I found a form of exercise that requires you to use more of your lungs than your used to. It works for me. My platelets have never been low maybe that makes a difference.

Best to you!

Gracie · Guru

Thanks everybody. I have decided to only decrease to 800 mg. for this week at least as its my forth week and an important one. I tried to only take one pill last night and couldn't think of anything but those darn sneaky cells laughing and coming back to life...lol.

I'm also going to eat and drink foods that support red blood cell growth. Just had a smoothie with a cup of spinach, 1/4 cup of almonds, and 1 tsp beet powder. I'm hoping these natural foods will keep me stable at least.

Its not easy to go against your doctors orders, but it is my life and my disease and I'll know if it gets too bad from symptoms.

So what kind of symptoms have people been getting from treatment anemia?

Scruffy · Guru

Gracie

I've had a heck of a time with my hb. I found that my weight has a lot to do with it. At 180lb my hb stayed around 9.2, after loosing only 4 lbs its less stable and I'm on procrit. My Doc said if it went below 8.7 I would have to cut the riba in half 600. I told him 800, he said we would see next blood test. Next test was low (8.9) but no riba reduction :) I was 7.4 and doing light labor when they told me to go right to the ER for a transfusion. My nurse said that was dangerous I showed her my phone I had 911 on speed dial and told her If things got "dark" I would have hit it on the way down. So point of this story is I'm at week 32 still at full dose but this week I dropped my dose to 800 for a few days. Fight all you can but some times you have to side with caution. Listen to your body and your doctor.

Your doing good keep it up!!

Tig · Admin

If I were in your shoes, I'd assert myself and state my position in no uncertain terms. This first 4 weeks is vital in your outcome. Your Hb is low, but mine was lower and I took 1200 mg for 28 weeks, your max dose may be less but the same thought applies. I'm sure you've already seen the Hb levels of others here that were much lower and they did well without intervention. I would flat out request Procrit before dropping my Riba dose, especially while you're on the Incivek. The drugs all work in concert with each other.

You simply are going to have some unpleasant side effects and there will be days that you don't want to even open the blinds and get out of bed! Unfortunately it's what happens to many, many people taking these drugs. But it's an indication they are working. I personally feel that reducing the doses at this critical juncture are unwise. If you question your doctor's advice, get a second opinion. Many of us did and it proved a wise choice. The choice is ultimately yours and your doctor. But he works for you and if you present him/her with accurate data, they should consider your side of the argument. Under no circumstances would I drop below 800 if your only problem is a Hb of 9.8. Not before week 4, period.

Again, these are simply my opinions. Good luck making this decision, it's an important one at this point in Tx.

Gracie · Guru

Couldn't do it.. Took the extra pill. 800 dam. Just can't take the chance on week 4.

Gracie · Guru

It's soooooo confusing. What's a person to do? Since I really felt bad today, weak and out of breath, I decided to do the dose reduction today. I do my intereron tonight too, so dont want to be too bad tomorrow with both things going on. Ill take the extra up to 800 tomorrow and kind of play it by ear depending on how weak i feel. Just praying this thing is gone gone gone.... Nice to hear of others with reductions that still cleared. Gives some hope my dr is right..... Damn stuff is difficult enough without all this uncertainty.

mallani · Guru

Hi Gracie,

Just to try to explain a bit further. Early onset anaemia (in the first 8 weeks of treatment) is traditionally managed differently to late onset anaemia. Remember that some of the anaemia is due to the bone marrow depression from Interferon. After you obtain an Undetected VL result, the body( and the meds) seems able to cope with the tiny amount of residual virus. This is why Riba reductions should be postponed for as long as possible. Hopefully, your 4 week VL will be Undet. After that, a reduction in dosage is not as critical. I'll post a link, which is old, but still regarded as relevant, at least according to my doc. You'll be fine. Cheers.

http://cid.oxfordjournals.org/content/37/Supplement_4/S315.full.pdf

ucbgal · Senior Member

gracie,

i was in a similiar situation & know it's very difficult to believe that a dose reduction won't affect your und.

week 6 of my tx, my hemo went to 6 & stopped ribo for 5 days. the next 5 days i only took 2 ribo/day.

i kept the faith, started on procrit & was monitered for cbcs on a weekly basis. mallani is so on target w/ the percentages.

i'm 1 mo. eot, took 83.7% of ribo & am still und!!!!!! keep on fighting.

sandy,ucbgal

Gracie · Guru

That might be the answer right there. "Those that drop their hb by 3 have adequate blood levels." This could mean that a smaller dose is adequate or equal to a larger dose in those that have a problem absorbing RIBA and maintaining adequate blood levels. I'm going to do the 800 for the next couple of days and keep an eye on how I feel. Week 4 is too important and if I didn't clear, I'd always wonder.

mallani · Guru

Hi Gracie,

This is indeed a confusing topic and unfortunately, little further research is being done with the Incivek/ Victrelis triple. To understand the reasoning, you need to know how triple is supposed to work. Incivek will eliminate nearly all the wild-type virus in two weeks, providing the Viral Load is not huge. However it has no effect on certain RAV's (resistant variants) that emerge. The Peg. and Riba control these, so that hopefully after 4 weeks, all viral strains are eliminated. Peg. is usually well tolerated, so dose reductions are usually not needed. The Riba. is just as important, particularly in the first 12 weeks. Some patients have a problem absorbing Riba. and maintaining adequate blood levels. These patients usually only develop a mild anaemia, and the chance of SVR is less. Those who do drop their Hb by at least 3 , have adequate blood levels. Managing the Riba anaemia has been the subject of countless papers.The argument about Riba dose reduction vs. Procrit / transfusions has never been fully proved, according to my doc. He is a firm believer in maintaining the highest possible dose, which is not the case with some Hepatologists in the USA. You must be guided by your own doctor, of course, but I would insist on a smaller drop, and increasing the dose to a normal level ASAP. I would prefer Procrit to a Riba. dose reduction. When I posted about the 60/60 change, this was assuming a 1,200 mg/day dosage. Subsequent articles have gone back to the old, accepted 80/80 rule. Under no circumstances can Riba. be stopped altogether. Good luck. Cheers.

Gracie · Guru

I asked (actually begged a little) ... Luckily my Hepologists nurse lets me text her with any questions and she gets right back to me which is nice. Her reply was:

"Nope! Dr. M says that we have to folow product monograph so this was his decision. Please know that I have treated many hep c patients and it's rare we don't have to reduce. So far every patient of mine has cleared the virus. It's not safe for you to have low red blood cells."

Second text after more begging...lol

"Adjusting the dose has no affect on clearing the virus. I start everyone on the maximum for their weight and as they progress on treatment I adjust accordingly. Each patient I had to dose reduce cleared the virus in 6 months. So please trust the process and let Dr. M and I do the worry about your blood work and dose. You have lots on your plate with the meds and side effects. Keep going strong. You've got this!"

So I've decided to go with 800 today (shot day), tomorrow and the next day, then down to 600 as she requested so hopefully 4 days on 600 will bring myhemoglobin back up. Darn this is an up hill battle. On one hand, I don't want to get too sick with anemia, on the other hand, I'd like to think I can handle the full dose. BUT since the signs are there (normal liver function tests, first 8 weeks anemia) I'm really hopeful it's working!

Tig · Admin

Gracie wrote:
He actually said with triple therapy the dose can be reduced 60%. Not sure I want to take a chance of having to stop the ribo altogether. So confusing. Maybe I'll split the difference and take 800.
------------
One other thing, you mentioned not being sure you would want to take a chance of having to stop the Ribavirin altogether. Those of us on Triple therapy, be it Incivek or Victrelis, can't stop the Ribavirin and have much hope at all of achieving SVR. The rate would be so low it wouldn't be worthwhile putting yourself through Tx.

PS: Incivek and Victrelis specifically state they must be used with Riba.

Tig · Admin

Hi Gracie,

Yes, that's what I meant when I said below the 80/80 ratio to a 60% dose. I should've stated it more clearly. The ratio stated indicated 80% of the original dose for 80% of your treatment was believed to be the lowest recommended dose through Tx. But in non cirrhotic patients that dose has been reduced to 60/60 or 60% of the original dose for 60% of your Tx duration. Assuming you drop to 600mg you wouldn't have any more wiggle room down. I would rather try procrit or a blood transfusion if that reduction was made before your 4th week VL. If they insist, then yes, I'd prefer to start at 800 vs. 600 mg. Just my opinion, the decision is an important one. Good luck with that!

PS: you're right, the Hb reduction is an indicator that the Riba is doing it's job.

Gracie · Guru

Another article I found which states that anemia in the first 8 weeks has a greater SVR rate so that's good news. Also says ribo reduction is the way to go. Leaning towards listening to my doctor and quite encouraged that this is WORKING!

http://hivandhepatitis.com/hep_c/news/2011/0111_2010_a.html

Gracie · Guru

He actually said with triple therapy the dose can be reduced 60%. Not sure I want to take a chance of having to stop the ribo altogether. So confusing. Maybe I'll split the difference and take 800.

"With triple therapy, the rules seem to have changed. Up to 60% of patients will develop anaemia. In the USA this is aggressively managed. Riba dose reductions are often large with patients dropped to a Riba dose of 600mg/day or less. Procrit and other red cell stimulants are often used as well. For most patients, this ensures the Hb stays well above 10. After a Riba dose reduction, many patients do not have the Riba dose adjusted up, irrespective of the Hb level. Recent papers now quote the 60% rule i.e. patients should be on 60% of the recommended dose for 60% of Rx duration. However, cirrhotics are an exception, and should be on the maximum tolerated dose. It's hard to argue against this, as so many Forum members have achieved SVR with massive Riba reductions."

Tig · Admin

Hi Gracie,

Malcolm (Mallani) is right. I would request to stay on the full dose as well. Malcolm has written about this on a number of occasions and I'll include a link to a post where he explained it quite well. My Hb and platelets dropped significantly during treatment but never was required to reduce dosage. I would ask to continue on the full 1000 mg. A drop to 600mg will bring you below the 80/80 ratio to a 60% dose. This would be a concern if any reductions were needed in the future. Malcolm's post will explain that for you. Good luck!

It's the March 15th post:

http://hepcfriends.activeboard.com/t53003896/understanding-ribavirin/

Best, Tig

mallani · Guru

Hi Gracie,

A Hb of 98 is not considered severe. I'd ask to stay on the full dose of Riba for a bit longer. I was between 80 and 90 for the full 48 weeks. In the first 12 weeks, the dose of Riba is most important, and although several members have had dose reductions, it's usually much later in Rx. I'd try to stay on the full dose, at least until your 4 week VL. Just my opinion. Cheers.

Gracie · Guru

I just got a call from my nurse. The end of my third week bloodwork. She said my ALTs, ASTs and Billiruben are all normal so yea! Don't remember my ALTs and ASTs being normal for years. Taking that as a sign I'm killing this dragon... BUT platelets are low 70 but not dangerously, but my darn hemoglobin is 98 and she wants me to start taking 600 mg of Copegus instead of 1000 mg. She promises me it will have no affect on treatment success but I'm nervous to cut back.

Guess I'm just wanting to hear from everybody who had their dose reduced and still got good results. So I can sleep without worrying....

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