Yeah, Dave;

They told me the same thing... NO iron supplements, including daily vitamins with iron added. (Walgreens infusion services, who dispensed my meds).

But who knows?  It seems they are still fine tuning this TX...

Phil;

Hang tough, you are so close!!!

Brad

Dave - Unfortunately, I can't explain the iron pill, or some of the other decisions (or lack of) and the timing of my doctor. I have wondered why, if my iron was low, he would wait until my HGB was almost at 9 to add it. Or maybe they would test for iron at some point, but they haven't, except at that first conclusive blood test prior to tx, unless its called something less obvious. I had kept my labs in a spreadsheet and plotted them since the beginning, and it was pretty obvious the HGB was going to tank. I was so relieved that something was finally being done that I didn't and haven't argued. It is just a plain OTC 65 mg iron supplement, one a day.

I recall seeing the same sort of thing about iron somewhere that you referred to. Even got a steel/alum pan to use instead of my usual cast iron, but never really used it. Not sure if all that was for living with Hep C or for treatment.

Just need to survive 6 more shots and less than 6 weeks of pills.  

Phil, can you explain a little more about the doctor's decision to give you an iron pill?  My understanding was that we lose red blood cells as the Riba destroys the cell wall.  However the iron is released back into the bloodstream so there is no shortage for building new RBCs.  I read iron supplements are a no no as there is no shortage and there could be danger of toxicity.  This is all from memory of a thread on this or another HCV forum.  But it would be good to know if you or someone else can clarify.  All the best, Dave

After 2 and 3 weeks on reduced riba from 1000 to 600, my HGB has risen from 9.4 to 10.0 and 10.5. Have felt a lot more energy since. Of course, now I'm itching to bump it back up, but will try to be patient. Less than 6 weeks to go!

Just got back from the doctor with new instructions. Reduce riba from 1000 mg to 600 mg and add an iron pill. The hemoglobin from the last 3 labs (once a week) were all less than 10 (9.9, 9.8, 9.6). I know some folks are fighting to get their riba dose back up, but I am elated. It was a good visit, addressed all my concerns, answered all my questions, relieved my worries. Shot #18 out of 28 this evening (also confirmed 28 week tx). With the insurance problem also resolved this week and a good supply of meds, its happy camping at the tx lodge for now.

very informative thread. thanks... need to learn as much as i can bout this blood stuff...

Just got my 12-week bloodwork results back yesterday.  My HGB went from 8.5 to 11.2 in one week.  I assume this is due largely to the 2-unit tranfusion 10 days ago.  But I also took one Procrit shot 9 days ago and dropped from 1200 to 600mg of Riba three weeks ago.  Feel infinitely better and still undetectable!  See attached chart.

PS  Awakenings was a great movie and the comparison is the same. Too bad the patients had to return to the catatonic state. We don't have to thanks to treating the anemia. It Took a while for me and you too. They don't transfuse til really low for insurance purposes  I guess. I have not seen the Artist or any movies since Sept when I saw Contagion my third week of TX I think.  Missed all the nominated movies. Will have a lot of catching up to do after get off this stuff in 21 days WhoHoo!!!The end eventually comes no matter how distant it seems. 

My story exactly Sunrise.For the two months before the transfusion I was weak and could do very little. Had to sit down eventually when walking my dog every few feet. Finaly had to board him for 8 days til after got blood. I would walk into another room and have to lie down in the floor I was so dizzy and weak. It was awful. The reason you need the procrit is for when the blood transfusin wears off in a few weeks. The Procrit already needs to be in your system for a few weeks. It took it weeks to start doing anything for me. But my anemia never got quite so bad again. It got bad but not that bad. At that time MD upped Procrit to 60,000 units and after two weeks of that I felt as good as I did after the transfusion. Guess still stable on that. Getting blood work tomorrow. Has been 3 weeks. Went to gym today. Went to Barnes and Nobles yesterday. Had not been to the bookstore since way before treatment began. It felt wonderful to be in there looking at the books. 

So glad you are feeling human again and had a grat time out in the world. I know exactly what you mean. Hugs

Ever see the movie Awakenings, with Robert De Nero and Robin Williams, where the mental patient miraculously comes out of a catatonic state after many years to become a normal functioning human?  That's exactly what the blood transfusion was like for me!  For the past two months (#2 and #3 of treatment) I was so weak due to anemia that I have not been able to stand for more than a minute.  Forget going to the grocery store or even standing up to shower, shave or brush my teeth.  Yet, 24 hours post-transfusion, my wife and I went to the movies (The Artist - great flick) and dinner.  Today I'm going for a haircut and lunch!

Hi. I felt really, really good for about a week, pretty good for another week, ok for third week then could feel the effects waning. I was also put on Procrit a couple of weeks before I got the transfusion with a riba reduction first to 6oo for a week or two then to 400 for about five days til I got the blood. I took I think 11 shots of Procrit all together. First 40,000 units a week then for the last two weeks 60,000u once a week. It never really did much til I got it bumped up tio 6o,ooo then it shot up from 9.2 to 10.7 and the next week to 11.9 when they stopped the procrit. Told to wait 3 weeks to get another CBC and that will be done this coming Monday. I read all the side effects on the insert wtih the drug and it was scarey. But I had no bad problems. I would take it again in a heartbeat if needed. As long as your hgb is below 12 it does not do the stroke thing according to the stuff I read on line and on the info from the maker of it. It did make all my big bones hurt even my skull.Not all the bones have the kind of marrow that makes rbcs. The long bones of the lower arms/legs, vertebrae, and the skull do and the hipsMaybe the breastbone. . But it was just take a mortin kind of pain and the more it hurt the more my hgb went up. It also had an effect of making me feel better even though it had not raised my hgb yet. It was like a feeling of well being. I swear by it and by transfusions for anemia. I had no problems with transfusion or Procrit. They will make you feel so much better. I even had to do Procrit after I stopped Incevik as my hgb tanked then again. Keep us posted. 

i did the procrit & was on a reduced riba. the procrit will make u feel better. it took me about 3 -4 shots. then i was off.

Thanks all for your responses!  Anna, how long do the positive effects of a transfusion last before they begin to wear off?  I received two units yesterday and feel better today than I have in two months (mostly in bed or on the sofa).  Doc also wants me to start Procrit (it arrived yesterday) but that stuff scares me.

Hi Sunrise:

It depends on how much blood you need but 1 bag should do it if your hgb is at 8.0.  First, they will probably take some blood to cross match your blood type.  After that they will give you the transfusion.  If all goes well, and it usually does, it should only take about a half a day altogether.

Hi. I got transfused two units in the emergency room day after Thanksgiving for HGB of 8. Was in the ER for a total of 7 hours. MDS office sent me there ASAP when looked at results of most recent CBC done day before Thanksgiving. It was a breeze.Also got Potssium IV for low potassium 2.7.. Started to feel better 15 minutes after they started Potsaaium IV. Then after got blood for 15 minutes really perked up and was starving all of a sudden and asking for food and laughing and kidding around. Felt like I had risen from the dead and had come back to life. It was amazing. Easy procedures. No pain. Great staff. I could have kissed them I felt so good and felt so well cared for. Especially after fooling around for three weeks with riba reduction and procrit with no improvement whatsoever. I feel like blood trasnfusion is the way to go for anemia. I am sold on it. Those several weeks of misery before it were pretty frightening.Of course it cost my insurance $4900, I had copay of $115. So I see whey they are not passing out transfusions right and left. Insurance would not like it and they are all powerful

Doctor just ordered a transfusion because my HGB is down to 8.  Anyone know how long that procedure takes?

I just got my week 14 CBC labs back, and the hematocrit is back up to normal. The CRNP said no more Procrit. But they are going to leave the Ribavirin dose at 600mg/day for a while. I told her this worries me. She said "Stop worrying. If your hemo stays good without Procrit, we'll jump the Riba back up to 1200mg/day. For now, just chill".

So, I'm chillin'  (and feeling pretty good). Still worries me, though. I don't want to regret this a year from now.

Alan

Mikey, Ribivarin causes hemolysis of red blood cells.It causes a form of anemia called hemolytic anemia. Hemolysis destroys RBCS.. They measure the hgb withch is the  oxygen carrying part of the red blood cell to determine anemia .Incevikk and boceprivir both cause anemia, not sure of the mechanism of how they do it. Interferon suppresses the bone marrow production of all blood cells thus affecting red blood cell production leading to anemia re low rbcs, supresses wbcs white blood cell production leading to immunosuppression ie reduced ability to fight off infection, and also reduced platlet production which affects your blood clotting. There are ways to treat all three problems. 

Isiscat2011, I wrote you a personal message as I am interested in that you and your brother both have hep c.  My mom and brother also have it.  We think we got it from her at birth because she had to have a transfusion but we will never know for sure.  Looking forward to reading your story. :)

aloha,

Meghan

LanaiSurferGirl wrote:

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I am worried too.  I am very petite and was perscribed 800 mg.  I became very anemic on treatment at week 9 and dipped down to 6.3 hemoglobin.  We didn't catch this earlier because I was at 9.9 on my 4 week blood test and since it was borderline we felt I was ok.  I am still anemic now at 7.7 and have been on procrit for almost 5 weeks now with reduced dosage of 200mg because it was so low.

---

Excellent points you and Shaun made about the triple therapy being so new; the medical professionals are still working out the details. 

My blood situation was very much like yours, SurferGirl, except that my doc would not prescribe procrit due to my myriad of other sx in addition to the low hgb.  Without the procrit it is much more difficult to control the hgb drops.  Reducing the riba helps, but I still had 2 more weeks to go on the Incivek, which also contributes to the anemia, and they have very little flexibility with the Incivek dosing. 

My hgb dropped fast; at 7.7; yours can't afford to drop too much more and I am wondering if your doc is considering a transfusion.  If it gets too low the transfusions may not work as well b/c it takes more blood to bring it back and the body can have a hard time accepting high volumes of blood.  I needed 2 pints, one after the other, to stabilize my blood and while the first pint made me feel better my body had difficulty with the second pint. 

Perhaps a transfusion of 1 pint now would help increase your hgb a little more, and then they could increase the riba a bit rather than extending your tx another 6 months, which can't be good for your body in the long run.  I don't mean to be presumptuous and I am sure you and your doc are considering these options already.  It is just that I know how hard you are trying here and I really want to see you make it. 

BTW, my brother also has hep c and he has not started tx yet. He is the only person I know (outside of this forum) who has the virus.  The upside to us being more or less guinea pigs for the triple tx is that what they learn from us will help others, including in our cases, our own brothers.  That thought brings me happiness.

When I was experiencing low hemoglobin my nurse practitioner told me that  the ongoing trials were finding the dose can be lowered to as little as 500mg per day with no decrease in SVR rates.  

She said most patients resist any lowering of dosage, because they don't want to take a chance. 

Just remember, this treatment is new, they are still learning, and the trials are ongoing.  She told me that people are getting a lot sicker from the treatment than they realized when Incivek was first approved.   She said that every one of her patients got sick from it.  She has at least 20 patients on the combo.   They are still learning.

She told me that in the future they may lower the recommended dosage of ribavirin with triple therapy, but until they are 100% sure, they will stick with the traditional dose.  They are not willing do anything prematurely that may negatively affect even a single patient's chances of achieving SVR.  I trust what she tells me.  She has been treating HIV since the early 90s and HVC since the late 90s and she follows the ongiing trials very closely. 

Hope that clarifies things a little.

forgot to mention that telepravir was only released last May.  Besides clinical trial data we won't start to see data on stanard of care treatment results til this June (if people started triple therapy in June 2011 and finished in Jan 2012...they will not test for SVR til 6 months later which means June 2012).  The doctors will know alot more about what role ribavirin and interferon play when teamed up with telepravir after all of this data starts pouring in.  Does anyone know if patient treatment results are reported to the pharmaceutical companies (in this case vertex for telepravir) or any other organization...maybe FDA?  It would be nice to see the stats on results when they come in.

I think most docs are just playing it as conservative as they can since this info is not available yet and they just don't know.

I still think there is tons of research to be done out there.  Originally with riba the standard dose was 800 mg for all patients.  Only recently did it change according to weight.  Some people take 800mg and others take up to 1400 mg depending on weight.  If people were achieving SVR when taking the 800 mg years ago and today they would have been perscribed say 1200 mg based on their weight then again.....why take the 1200mg?

I am worried too.  I am very petite and was perscribed 800 mg.  I became very anemic on treatment at week 9 and dipped down to 6.3 hemoglobin.  We didn't catch this earlier because I was at 9.9 on my 4 week blood test and since it was borderline we felt I was ok.  I am still anemic now at 7.7 and have been on procrit for almost 5 weeks now with reduced dosage of 200mg because it was so low.

I received my 12 week lab results yesterday and am still undetectable but I am wondering about how this will be affected long term.  Good thing is I know that ribavirin stays in our systems for 6 months after treatment.....this is why the label says do not get pregnant for at least 6 months after treatment.  Maybe there is still enough of the drug in our system to fight of the virus but docs want the full dosage because that is what clinical trial data is based off of??

We shall see...

Right...if 600mg of riba is just as effective as 1,200mg then why tourture us all with 1,200 mg in the first place?  Surely someone somewhere thought 1,200 is more effective.  I wish there was a national database where everyone doing hep C treatment could register and document their experience.  Very quickly there would be a HUGE body of data to draw from and use to more accurately answer such critical questions.

Anna Christie wrote:

---

My hepatologist who is with a major transplant cnter at a teaching hospital and who did clinical trials on boceprivir, told me dose reductions of ribivarin when on triple therapy do not affect Sustained VIral Response SVR  but that riba can't be stopped. There are numerous research studies from the clinical trials of both protease inhibitors that show this result. Goodge SVR riba dose reduction incevik or boceprivirfor the reports. They are very interesting.However her PA always raises my Ribivarin right back to 1000mg when my hgb goes back above 10. I don't understand why they do that given the research but I take it like they say. The research does suppor no effect on SVR for triple therapy but not for peg and riba alone. 

---

This is a very interesting question. The fact that the riba cannot be stopped and that the goal is always to bring the dosage back up if the hgb improves supports the assertion that it may effect SVRs.  It seems to me that this is indeed a gray area for which there are no absolute answers. Like everything else with this tx I expect it will vary by individuals and perhaps by degrees of reductions. 

I don't understand, however, why some medical professionals make assurances and then act against them.  I suppose they don't want to alarm patients, but that seems a bit patronizing since patients are certainly bright enough to see the inconsistencies between what they say and what they do.  Not to mention, it is just common sense that dosage amounts could effect results.

I had a Riba reduction back in december, b/c my hemoglobin was also down in in the low 8's. My doc said there is no "significant" drop in SVR level as long as you stay at 600mg or more.

I didn't have to do Procrit but I did do a transfusion, and while the procedure itself was boring, tiring, and somewhat painful a couple days later I felt much better than I had in weeks! Definitely worth it!

My hepatologist who is with a major transplant cnter at a teaching hospital and who did clinical trials on boceprivir, told me dose reductions of ribivarin when on triple therapy do not affect Sustained VIral Response SVR  but that riba can't be stopped. There are numerous research studies from the clinical trials of both protease inhibitors that show this result. Goodge SVR riba dose reduction incevik or boceprivirfor the reports. They are very interesting.However her PA always raises my Ribivarin right back to 1000mg when my hgb goes back above 10. I don't understand why they do that given the research but I take it like they say. The research does suppor no effect on SVR for triple therapy but not for peg and riba alone. 

P.S. I forgot to mention that reducing your riba is perhaps your best alternative at this point even though the effects on SVR cannot be guaranteed, although that is your call.  Your hgb is not yet low enough for a transfusion so the only other options are 1) try procrit alone (but this takes time and is not considered the safest option, 2) discontinue tx (not warranted based on your hgb alone at this point unless there is more going on here), or 3) do nothing different (dangerous b/c without some intervention your hgb will likely continue to drop and this could become life threatening). 

I know exactly how you feel and I am sorry you are experiencing this.

I have read that dosage reductions will not effect the results but that doesn't really make sense.  If dosage didn't matter then why would specific dosages be set?  The general rule regarding dosages is that one needs to be in 80% compliance.  

I asked my doc the same question and his answer was "I cannot say with any reasonable degree of medical certainty."  Since he is a Harvard educated, board certified gastroenterologist who has been treating this disease for years and years, and my medical training otoh includes a CPR class where I learned to do chest compressions on a dummy, I would be inclined to defer to his judgment which is: we cannot predict the effect.

Btw, procrit is not FDA approved for this tx, and not all docs agree that the benefits outweigh the short or long term risks of using it.  I know some docs are using it but the physician guidelines do not recommend it. 

I think this is fairly common, particularly late in the first twelve weeks. My CRNP told me that a paper was recently released that claims reduction of riba by 50% is becoming the norm, with no change in outcome. So I guess we'll see. But I am also still on 600mg/day, down from 1200mg/day. She and the doctor both promise me that this will not affect my chances at SVR. I do procrit every other week instead of every week, and my hematocrit is coming up.

Alan

Started week 11 yesterday (2 more weeks of Incivek).  My dr just told me to reduce my riba dose to 600 mg because my hgb is now 8.6, down from 9.3 six days ago and 10 the week before.  I was on 1,200 mg thru 9 weeks and then 1,000 mg for week ten.  She has also ordered Procrit.  I was undetectable at week four and am on a 24 week regimen.  Will this dramatic riba dose reduction impact my chances of SVR?  I must say even walking ten feet has been exhausting.