Procrit for Sovaldi + Riba

[Verdugo]

Do you know of anyone on a S+R combo who has needed Procrit?

My hemoglobin dropped from 12.8 to 10.3 after the first two weeks, and down to 10.0 on week 4.  My doctor is concerned and we discussed Procrit, as he does not believe lowering Riba is a good option.  I did more blood work today to see if I'm down again so am waiting to hear.

My understanding was that after the first two weeks, the drop slows and levels.  I'd really rather not have to take yet another drug especially when I'm feeling okay.

Also, why does a VL take so long?  It's been over a freaking week!

[nursehepc]

My hepatologist stated that the RBC destruction/Hgb drop levels out at 6 weeks. That said, he was not adverse to reducing my Ribavirin if the slope of drop is steep (he noted that it was something that may need to occur during treatment). It may be because I am 110 lbs (50 kg) and the 1000 mg is prescribed for those who weigh less than 75 kg (that is only a guess on my part). He did confirm for me that the slope of change and not just a specified level would be something that was weighed in that decision. It seems as if the slope of change in your Hgb has already started to level out. How do you feel? Regards, Jo

[nan535]

My husband is on week 16 of 24 weeks of sovaldi and ribavirin. He is post transplant with cirrhosis due to recurrent hep c and billary tree complications.
His hemoglobin was low to begin with so he had to take procrit once a week for 2 weeks before starting treatment. He continued to take procrit once a week for 10 weeks in order to maintain a hemoglobin of 10. This is despite a  his being on the lowest dose of ribavirin (200 mg). Unfortunately  he was getting weekly episodes of hepatic encephalopathy after getting the shot of procrit so the doctor agreed to allow his hgb to remain as low as 8.0. Should he go lower he will get a blood transfusion instead. For the last several weeks he has held above 8.0 so no need for the transfusion.

Everyone is different. Due to my husbands particular medical condition, he had to stop the procrit. It sounds like you don't have major liver damage so I think it would be fine for you.

My husband is undetected for the virus since week 6. His test results take
2 -3 days. I guess it depends on the lab.

Good luck!

Na

[Verdugo]

Nurse, I'm a lightweight too at 111 lbs so yeah, I agree I'm getting a big dose of the the Riba fun!  I feel fine, perhaps a bit fatigued and breathing harder on exercise that is normally easier but nothing I can't handle.  Also, I'm on a high-fat, low carb diet and I believe that helps the riba absorb, (even if it does not, I have not experienced any nausea whatsoever, so that's working for me).  
I'm in week 6, so hopefully, I won't go lower.  Knock wood - (I like to add that in case the Riba gods are listening :)  Looks like you a month behind me.  Hope you are doing ok.  It's been pretty dreamy so far and I'm glad I waited for my new bff, Sovaldi.

Nan, I've been following your husband's story and I think he and I will finish roughly around the same time.  I'm rooting for him!
Thanks for the info.  I know that there is a different standard for men and women and 8 for a man is super low.  Is he able to be at all active at that level?  I don't have much liver damage according to my biospy and a fibroSURE test but I still don't want to take anything I don't need to.  We'll see.  It's after 5 here in CA, so I'm hoping that means that it's good news and my blood test was not lower than 10, so they didn't need to call.

V.

[nursehepc]

Thanks. I'm doing well. You are nearly half way through!! Whoop whoop!!

I notice that I am having to decrease the intensity of my cardio work...but its temporary...and even doing it at a less intensity makes me feel better.

I am thrilled that I have been able to think and perform at work (I was concerned about this prior to treatment)...so...yeah...so far...so good! CBC on Thursday....[Riba gods...work with us...kay?]

Jo

[heart_in_the_keyes]

sovaldi and ribavirin.,,,am on it...2nd month...1st month no side effects...in fact had burst of energy....2nd month platelets started to fall...my HE increased and there was a moment they thought they were going to have to do transfusion.  still nauseous and dizzy which comes from lower platelets...was this way for 2 weeks...finally am not as dizzy but am very fatigued...and sleep a lot.  I am pre-transplant stage 4 decomp liver Meld 15...trying to kick the HCV before the transplant.  

Just have to take it easy...hydrate and eat correctly for the next few months....blame myself for my platelets dropping as I was doing way too many kid related activities.  Was fine until May 16th per...them did family things all day..birthday party..cooking food...hosting people...

Then on the 17th I could hardly stand...major nausea all day...in the evening finally upchucked like Linda Blair....couldn't take a pill....when I went to talk it was all mixed up...tried to text but couldn't....I couldn't even use the TV remote...two days like this.  Then just weak. It finally cleared up a couple of days ago after about 10 days of sleeping and doing nothing.  

This is gotta get better.  Want to work pt for a few months to have a few extra bucks for stuff like bills and license plates, etc.  Want to be HCV free and a ahead in all my bills before I have the transplant.  Wish me luck....Will let this medicine run its course before I try to work go back to work even pt.  Bravo to those who can work. .

I just have to remember that while the riba is killing off the bad cells it is also killing off some good ones too.....that's why I get a weekly blood test to constantly check on this.  Just had MRI w contrast....see doctor tomorrow....will see what he has to say about all of this.  

[klonny55]

Hi V,

From what I have read talk of procrit may be a bit premature in your case for two reasons. One is that rescue meds are usually not indicated until hemoglobin drops below 8 the other is that ribavirin dose reduction is the recommended method to deal with anemia before resorting to rescue meds or transfusions. Dose reduction is not unusual and should no affect treatment outcome.

I finished 12 weeks of ribavirin on April 22. My hemoglobin dropped from 15.5 to 13.9 at 4 weeks and leveled off there for the duration. My experience is typical for a non-cirrhotic treatment naive genotype 2 patient, About a 2 point drop in hemoglobin followed by a leveling off at 2-4 weeks. Your numbers seem to be in line with the same so far. Plus your feeling mostly OK is a HUGE indication of how your hemoglobin levels are doing. If you were in trouble you wouldn't be feeling "perhaps a bit fatigued and breathing harder on exercise that is normally easier but nothing I can't handle" You would be feeling exhausted and sick.

Take a look at pages 105-108 here:

http://www.fda.gov/downloads/advisorycommittees/committeesmeetingmaterials/drugs/antiviraldrugsadvisorycommittee/ucm375286.pdf

At any rate your latest blood work results will tell the story.

Hope this helps! Good luck and onward to SVR! Dave

[heart_in_the_keyes]

Went today and he dropped me from 1200 mg a day Riba to 1000 for my dizziness.  Mine dropped to 9 but have come back up to 10.  My b/p was normal but my heart rate was very rapid and he ordered a heart stress test...I use to walk about 2 miles a day in several spurts but now can only go a few blocks at a time and nap a lot more.

I wasn't fatigued or stressed today when I saw him....had been sitting in waiting area talking to several other patients and reading a book...hope pill reduction helps and still works.....if my platelets dropped lower they were going to do a transfusion....poor Riba....it would certainly be confused if that happened.  

That was interesting Klonny55....

[nursehepc]

You have had some challenges. That your Hgb went back to 10 is good. Hopefully it will, at a minimum stay there or bump up a little so you can finish treatment without a transfusion. Take care of you. Jo

[Verdugo]

Dave, this was exactly my thinking.  Thanks for the link.  If it comes to it, I will arm myself with this info and present it to my doctor, as he was adamant that he would not lower my Riba dosage and it may take some persuasion to convince him.  
Also, the procrit is not without serious side effects and its sometimes ineffective, so I'd like to avoid.  And transfusion... well, ironically, that's how I got HCV, so I definitely want to avoid that!

Heart, Glad to hear your doing better.  Your HE episodes sound bad.  I think your advice to listen to your body and not overdo right now is a message we should all heed.  It's great if you know you can do all you did before Tx but if it's setting you back, you're just doing yourself a disservice by not allowing yourself to heal.  Sometimes sleep and rest are a strong part of the healing process. When do you finish Tx?  Good luck, V.

[tigre1978]

On my last treatment my hemoglobin dropped to 10.3 from 14.1 within the first two weeks and it really affected my quality of life. If it went below 10 insurance would have paid for procrit. Later on in the treatment my nurse said she wishes mine just dropped that last miniscule amount because the treatment would have been much better.
This time, I am going to pay for it if insurance won't. I know its another drug, but it is one that can help you feel normal while allowing the highest amount of Riba to help kill the virus.

[tigre1978]

I forgot to add, if you'd like to avoid anemia try taking lots of high EPA fish oil. See this study:  http://www.ncbi.nlm.nih.gov/pubmed/22375604

I just came across it yesterday.

[Verdugo]

Welcome to the forum and thanks for the study link.  I already take fish oil but maybe I'll try upping my dose and see if that helps, couldn't hurt.

Just out of curiosity, how much do you weigh?  

Like I mentioned above, I'm 110 lbs and taking the prescribed 1000mg of Riba.  As you probably know, the dose is upped when the individual is more than 75 kg (or 165 lbs) to 1200mg.  165 -110 is a 55 lb weight difference or another half of me so I wonder if I'm actually being slightly overdosed.  You would think that greater minds than mine would have considered this, idk!  I would hope ... but for me, a Riba reduction might have me more properly dosed.  Let me know what happens with you.  Good luck.

[nursehepc]

Blood draw today. pre treatment Hgb. - 14.3 Day 13 of treatment - 10.1 (draw at 3 pm...call at 4 pm to drop my Riba to 800 mg...blood check in a week).... Crap...no wonder I couldn't push as hard aerobically (lol---I wasn't just imagining it). I was told to do no cadio... That is a pretty steep drop for 2 weeks. That said, I was told that it was likely too high a dose for my weight and that they at least like to start at the 1000 mg. Jo

[nursehepc]

FYI - I take 1000 mg of EFAs, including primrose oil and fish oil and borage oil. It didn't prevent my Hgb from its steep decline. Riba simply killed off my RBCs faster than my marrow could produce them. Reduction of my riba (as I am small like Verdugo) is what makes sense. Jo

[Verdugo]

Jo, Well that would be a significant slope!  Hope it only takes you a short while to reestablish your proper hemoglobin level.

Funnily enough, yesterday I went on a hike with my husband and was humbled for the first time on treatment.  We live at sea level but hiked in a 5000' altitude.  I had to rest every 50 steps or so.  The altitude seemed to be the straw that broke this camel's back!  I usually have to wait for my husband on hikes to catch up to me but yesterday he was the one waiting.  

I will say this, if this is the worst of it, (knock wood) I'm going to be promoting this regime from a mountain top (when I get my anemia issue resolved of course).  
V.

[Livelife777]

Just wanted to add, I weigh 110 Lbs also and was put on 1200 Riba.   Never 2nd guessed as I go to Mayo.   My hmg started at 14.3 and ended 10.4.    They were not going to reduce it (even at 1200) unless we were at 9.   Hmm Dont know what the reasoning was but, the last few weeks knocked me down with fatigue.   Didn't leave my bed.  Hope it all levels out.   Also might add at week 11, they magically jumped up a point, then down again.  It's a roller coaster ride but in the end, worth taking   All of you are doing great so far so try to hang on.        ...Kim

[heart_in_the_keyes]

went to doc...he lowered riba from 1200 mg to 1000 a day...I dropped below 10 a few weeks ago but am coming back up...he would rather not add another drug to the regimen of drugs I am already taking... I am on the s/r combo for 24 weeks...am pre-transplant...since lowering have lost dizziness and nausea.  

[nursehepc]

Goodness Kim, 110 lbs and 1200 mg. Yikes! Not sure whether you change from 14.3 to 10.4 happened gradually or was like me (first 2 weeks - then stayed)? I feel okay that they dropped me down to 800 mg. It simply makes sense, wasn't much of at drop, and follows protocols I have read. I, for the first time, do not feel AWESOME..at all {grin}....but I am not complaining.

heart_in_keyes, my anemic friend, I am sorry...  I have headache/spaciness...but I put in some work time... Nausea and dizziness is the worst... It goes without saying, move slowly and drink... I never t

[nursehepc]

I ended my note prematurely.

I never....thought drinking water would be an issue, but after 100 ml, its tough to drink more. My BUN/Creat ratio was 27, which means I could stand to drink more water than the 90 + ml/day I am drinking. Be well...Jo

[Livelife777]

Hi Jo.    My hmg dropped dramaticly aroun week 7-8.   That's why that last month was kinda a drag.   Stayed in the high to low 10s.  They said at week 9-10 it would rise slightly which it did.  Unfortunately had that spacey, dizzy, and tachycardia sensations.   Have wondered if Gatorade would help with those Creatine #s.   Am aware of sodium issue, but unaware of the extent with sports drinks.  If OK may help with dehydration.      Kim

[nursehepc]

Thanks Kim. My sodium isn't low so Water is okay. I am just a little dry. I was feeling so good the second week...then bam. I will be fine. I simply expected a 2 point drop in my Hgb the first 2 weeks, not a 4 point drop.  Keeping my eye on the potential prize (grin). It is very encouraging to hear folks like you talking about when you felt bad, now that your are finished and are no longer feeling bad. Thank-you for that! Its just a moment in time is my mantra today. joanne

[heart_in_the_keyes]

just remember the riba is killing some good blood cells right along with the bad....if you are nauseous or dizzy a simple adjustment in medication by doctor may make the biggest difference.  

like I said above first month was great and then second month was awful /  I could even walk straight...felt like the bad with in the wizard of oz when they throw water on her and she just melts to the ground......I was doing that too.  

just the simple adjustment he made....which I was worried about because I'd be ill to get rid of this HCV...but hepatologist said it was definitely the riba that was causing the issue...adjustment has made all the difference.../  might be because I am a small person and even in the classes for sovaldi they said adjustments might need to be made.  

Good luck to everyone.........

[Verdugo]

Finishing tx soon.  I've managed to avoid dosage reduction, procrit and/or transfusions (YAY), but I'm pretty well fatigued.  Sleeping 10 hours for the last few days and then sometimes a nap on top of that (UGG).  I'm less winded on walks so my hemoglobin may be up (guessing 10.5) so  I'm actually thinking that Sovaldi is causing the fatigue -- not that it really matters...

Hope everyone is doing well tonight in the world of tx!

[Verdugo]

Just got back for my EOT appointment and am still UND, so yay about that!  Altho I did discover that my final hemoglobin level was 9.4.  No wonder I felt crappy in the last month.  I did not have a blood workup for the last four weeks even tho my anemia level bounced in the 10 range for the entire tx.  Most people stabilize after the first 2-4 weeks but I maintained through at least week 8 and THEN dropped so I'm thinking I should have pushed for that CBC  at week 10 or 11, maybe asked for a riba reduction.  I might have avoided the slog of the last third of treating.

For those of you that don't know the protocol for anemia with ribavirin, (as I didn't) I'm going to cut and paste an previous post that Hector wrote in 2011, which I believe still stands:

If you doc reads the ribavirin package insert directions it says that for anemia the standard protocol is to reduce ribavirin to 600 mg per day if hemoglobin <10 g/dl, first. If < 8.5 g/dL interrupt dose. Then see if hemoglobin level rise. In the clinical trial most patients did rise. Only 4% stopped treatment owing to anemia.

1. The proper protocol is to reduce ribavirin to 600 mg when hemoglobin is less than <10 g/dl. (* One 200 mg tablet in the morning and two 200 mg tablets in the evening).
2. Discontinue Ribavirin Tablets if: <8.5 g/dL.
Once Ribavirin tablets  have been withheld due to either a laboratory abnormality or clinical manifestation, an attempt may be made to restart Ribavirin tablets at 600 mg daily and further increase the dose to 800 mg daily. However, it is not recommended that Ribavirin tablets be increased to the original assigned dose (1000 mg to 1200 mg).

Only after this doesn't work would you need to take procrit or have a transfusion.
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You can read the Ribavirin package insert yourself
http://www.drugs.com/pro/ribavirin.html
Look at the section "Dose Modifications"

Hector

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Thanks Hector!  And good luck to all.