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!

[zarmar]

I was sitting here reading these posts and being weirdly weepy -- must be Tx related because not like me.  Then I read your JW note to self and it made me laugh out loud.  Boy that felt really good and so needed.  Keep 'em coming!

Much appreciation for best moment of today so far - z

[Verdugo]

When I saw child24angel on this thread a BIG smile came over my face!

A huge virtual hug to you Elaine!  Thanks for the support and know that I always wish you the best.

Cheers, V.

[Sovaldi13Newbie]

You'll SVR. Those medicines kicked your *** too, and you have low liver damage, stats, etc. You'll SVR. I feel it.

[child24angel]

You will,SVR!! :)

Lot of love,
Elaine

[Verdugo]

Sorry to hear that you've been having a hard time after tx.  I know you'll get there!  Everyone does but it may take a bit of time.  We've put our bodies thru a lot in a past three months.  Be kind to yourself.

I'm feeling my "pop" slowly return.  Thanks.  Before tx, I put all of my health records in order and discovered that (according to the Mayo Clinic), I've been anemic for a long, long time.  I spent the first months of this year correcting my diet and getting my hemoglobin inside the normal range and felt much better.  Now, if I can SVR, I will have a new goal:  getting my hemoglobin to the 13, 14 range -- wow, that'd be a so awesome!

I'm right behind you so hopefully we'll SVR together.  Here's to hoping!

Mental note:  Do riba before JW conversion!

[Mmorgan856]

Just an add-on because I'm sure everyone is confused about my post above.  Have noticed  it seems like a lot of people are from California on this forum, an was just commenting about a place I've always wanted to visit.  O.k.

[Mmorgan856]

WOW , it's so great to hear good news.  Congrats Verdugo an solvaldi 13 for finishing tx.  And, Kim,  I just know chomping at the bit for early Oct. to get here.   Think.. Your almost there to hear, " your definitely Hep C free " an go enjoy your life know your a winner an beat the dragon.  I'm sure you remember the confused, angry, crazy woman that was posting 5 wks. ago.  Everyone here helped me thru my fears, especially Nan, with her heartfelt words of wisdom.  Somewhere along the line, I went from the attitude of " why me?" To  " I'm gonna fight this" all because of the caring, encouraging help I got got here.    God is good.  Take care all,, Mary.  P.S.  I've never had the opportunity to see California an all the great places to visit an experience.  When I'm SVR , that location is going on my bucket list.  It's a small world, maybe I'll run into someone from this forum an thank them in person one day.  Stranger things have happened!!!!!! Good luck to all.  Mary

[Sovaldi13Newbie]

I just hope it starts popping up soon, sure it will. When I was taking chemo for leukemia they didn't allow us to go under 10, but the Jehovah Witness patients would go down to 8 and lower and still pop up later. (They don't believe in transfusions) I've been having a worse time of it since EOT but I know it's a phase and will pass. Best of luck to you!

[Verdugo]

I follow all of your posts because we share many similarities -so it's been really great to have a role model and very helpful to have an idea of what might be coming so thanks for that.

I finished strong in my last week of tx - at least attitude-wise and not nearly as fatigued as I had been which may have been due to the adrenline rush of finishing.  Then came the let down, nothing too bad but three days later I had a very weepy day which came out of no where!  Basically, I'm feeling good and am waiting for my hemoglobin to normalize so I can exercise properly.  All in all, I have nothing to complain about and I am very, VERY grateful for that!  And based on your experience, maybe I'll feel unstoppable in 4 months -- one can dream.  

[Livelife777]

Congrats on finishing Tx, and now the time ticks by.   Just a shout out regarding post Tx.  This was my personal experience and may not be yours, but just in case.  
Felt worse after Tx ended.  Brain fog, confusion, depression, achy joints, you get the drift.  Thought once that last pill went down "Hallaluya".   Not for me...
Took a couple of months to shake out the Riba.  Did reach SVR12 UND, so am grateful, but not the after party vibe I had so anticipated.
Hopefully you won't go this route, but if you do just be patient and know it does get better.   I'm 4 months past EOT12, and feel fantastic!
Wishing you good luck
...Kim

[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.
---------------------------------------------------------------------------------------------------------
You can read the Ribavirin package insert yourself
http://www.drugs.com/pro/ribavirin.html
Look at the section "Dose Modifications"

Hector

--------------
Thanks Hector!  And good luck to all.

[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!

[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.........

[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

[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]

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

[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

[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.  

[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

[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.

[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

[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

[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.

[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.