reduce ribavirin??

when i started tx, i weighed 167 pounds, so my doctor prescribed 1200mg of ribavirin. now i have lost weight down to 142 pounds. should i dose reduce? i have been really sick from the ribavirin. i only have 7 more shots to go out of 48 (genotype 1a, high viral load, had it 18 years). should i just suck it up and finish at 1200 or reduce? the anemia has gotten pretty bad, and i've been miserable. my doctor told me not to reduce, but he can't give me a good reason to stay on 1200mg after the weight loss.

[jmjm530]

I would imagine that part of the decision would have to do with what was your viral response, in other words what are your projected odd of SVR. Another part of the equation might be how much liver damage you have -- the more damage, the more aggressively you want to fight this thing. And then of course, what exactly do you mean by "the anemia gotten pretty bad'. what was it pretreatment and what was it now.

Also you didn't mention if you on the drug Procrit (epo) which is often prescribed for treatment induced anemia instead of having to dose reduce. Procrit generally takes 2 to 3 weeks to kick in so that still could help you little on the tail end.

Tell tell you what I was told as I started treatment around hundred and 76 pounds at 1200 mg/day and later dropped down to hundred and 40 pounds. I was RVR, meaning UND very early in treatment. Probably in part because of this, and probably in part because of my anemia and and weight loss, my NP told me I should dose reduce. my doctor on the other hand urged me to stay on 1200 mg for as long as I can. That said, my guess is that -- and again given my RVR -- even he would not have minded some dose reduction at week 41. And in fact, I seriously considered a dose reduction around that point as I was then hitting one of many valleys during treatment. I didn't end up doing it, but I was very close.

My opinion, and I'm certainly not a doctor, is that if you had a good viral response it's probably okay to drop the riba a little toward the end of treatment. At the same time you might want to get started on Procrit and as your hemoglobin goes up perhaps up the riba again and finish the last couple weeks strong, meaning with high serum riba levels.

-- Jim

[HectorSF]

It all depends...
What genotype are you and on when did you become UND?

Source: New Management Strategies for HCV Nonresponders and Relapsers
By: Mitchell L. Shiffman, MD
"it is now recognized that small reductions in the dose of peginterferon alfa and/or ribavirin, particularly after patients achieve undetectable HCV RNA, are less likely to impact SVR as long as dosing is not interrupted.[15,23]"

15. Reddy KR, Shiffman ML, Morgan TR, et al. Impact of ribavirin dose reductions in hepatitis C virus genotype 1 patients completing peginterferon alfa 2a/ribavirin treatment. Clin Gastroenterol Hepatol. 2007;5:124 129.

23. Shiffman ML, Ghany MG, Morgan TR, et al. Impact of reducing peginterferon alfa 2a and ribavirin dose during retreatment in patients with chronic hepatitis C. Gastroenterology. 2007;132:103 112.

Rapid virologic response occurs in approximately 15% of patients with HCV genotype 1 and 66% of patients with HCV genotypes 2 or 3 treated with peginterferon alfa and ribavirin. 4 It is critically important to identify patients with RVR because these patients have up to a 90% SVR rate if they remain on treatment for 48 weeks for HCV genotype 1 infections (and 24 weeks for HCV genotype 2 and 3 infections. Furthermore, this very high SVR rate in patients with RVR is achieved regardless of the regimen these patients receive. This was shown in a retrospective analysis of a large, randomized, placebo-controlled trial in which patients who achieved RVR had an SVR rate of approximately 90% regardless of whether they received peginterferon alfa and ribavirin, standard interferon and ribavirin, or peginterferon alfa monotherapy. In addition, the likelihood of SVR patients with genotype 1 infection who achieve an RVR does not appear to be affected by shortening the duration or reducing the dose of ribavirin. In one trial, patients with genotype 1 who achieved undetectable HCV RNA were randomized to stop or continue ribavirin at treatment Week 24. Patients with RVR had an SVR rate of approximately 90% whether they continued or stopped ribavirin.[14] A retrospective analysis in patients with genotype 1 demonstrated that reducing the dose of ribavirin in patients with RVR also did not impact the rate of SVR.[15]

14. Bronowicki JP, Ouzan D, Asselah T, et al. Effect of ribavirin in genotype 1 patients with hepatitis C responding to pegylated interferon alfa 2a plus ribavirin. Gastroenterology. 2006;131:1040 1048.

15. Reddy KR, Shiffman ML, Morgan TR, et al. Impact of ribavirin dose reductions in hepatitis C virus genotype 1 patients completing peginterferon alfa 2a/ribavirin treatment. Clin Gastroenterol Hepatol. 2007;5:124 129.

HectorSF

[kk7788]

hgb is 10.3--not too bad i guess, but my neutrophils have been under 500 almost the entire time. my doctor didn't put me on neupogen until a few weeks ago, and i'm afraid it may be too late. i've got some serious lung issues. i took a pulmonary function test and found that i have a severe pulmonary obstruction and a mild pulmonary restriction. two lung specialists and regular MD can't figure out why. they also found a "lung infiltration" (whatever that is). i'm only 42 and i'm raising my 3-year-old granddaughter, so i am pretty concerned. do you know of anyone who has had similar problems? i don't smoke.
i did achieve RVR. at 12 weeks i tested negative.
-hectorsf, thank you for the good info; it made me feel a lot better about my chances for SVR.
oh, my original viral load was 3.3 million and it is genotype 1a. i did have some liver damage already, but my ALT and AST are in normal range now. also, i am pretty sure i got it from a blood transfusion in 1990 due to a botched cancer surgery.
does it sound like my odds are good???

[granitekonig]

wow i'm really shocked at these studies....so basically if you achieve RVR, taking Riba at all seems to be very non-impactful, if not reducing.

Hmmm...I just became und and am G3 and am taking 1200mg. Think I can reduce to 800?

[CockSparrow]

GK - I just became und and am G3 and am taking 1200mg. Think I can reduce to 800?

If you dont need to then don't reduce.
And when you say UND this has to occur on or before week 4.
You cant just miss it.
RVR=UND @week4

CS

[merryBe]

welll first, I'm glad you got some sort of answer, "a pulmonary restriction" can be a drug or allergic response, or from something viral/bacterial though. Once they ruled out hemolytic anemia, which I assume they did first off,  they should have tested you for infection, have they still not done that?

If you have no infection, and anemia is ruled out, then the possibility that the riba is causing lung changes  does exist. I read a couple of articles on this in pubmed a year ago, regarding changes that riba can cause to the mucousa. The more common things to come of these changes are dry eyes, dry throat and/or persistant cough, drying of the oil glands in the ears, however the more concerning one was when the drug could trigger either the over, or in most cases the underproduction of the mucosal lining of the lungs.
I believe the article mentioned changes in RNA/DNA similar to cystic fibrosis could occur. Of course cystic fibrosis causes more mucus not less, and it is a genetic defect, whereas the riba can cause temporary changes to some of our DNA which reverses after tx, but this is part of why pregnacy is forbidden while on tx.

I doubt whether I can find the exact article for you, but I'll look. In any case I can see how you might consider a slight reduction. I was put on procrit but it has not helped much, I have had chages to eyes throat and lungs, but I'm still passing their lung capacity test so its not the same issue as you have. For me, it only gets bad when I try to exert because my red blood cells are at 10. For you it sounds like you are having trouble catching your breathe.  I only have trouble if company comes over and I try to talk too much, so I've just put up with it. But you are far skinnier than me and a small reduction could give you good levels still, and make you far more comfortable...and like someone said, it's too late to really get much relief from procrit, although I will say when I first went on it, I went up to 11.5 in a week, and felt a whole lot better....but each week it gets knocked back down again. At least if they put you on procrit, even this late, it might stop you from going lower.  Plus you need to look at both the red cell HGB and the hemaocrit. below 10, or 31.5 hematocrit is grounds to treat with procrit.

let me know what you outcome is, and I'll see if I can refind that research for you.
mb

[merryBe]

not the article I was thinking of,,,but still

Heart Lung. 2008 Mar-Apr;37(2):153-6. Links
Adult respiratory distress syndrome after treatment with pegylated interferon alpha-2a and ribavirin.Vartany E, Caldwell CA, Trow TK.
Pulmonary and Critical Care Medicine, Norwalk Hospital, Norwalk, CT 06520-8057, USA.

Pulmonary manifestations of interferon (IFN) use are a rare but well known complication seen with both standard and pegylated interferon alpha-2b (pegIFNalpha-2b) forms of the agent. These are generally of modest intensity and reversible. We report the first case of fulminant adult respiratory distress syndrome (ARDS) associated with pegylated interferon alpha-2a (pegIFNalpha-2a) and ribavirin use for hepatitis C, complicated by subsequent and ultimately fatal sepsis and multiorgan failure. Practicing gastroenterologists and intensivists alike need to be aware of the potential for serious pulmonary sequelae with the use of combination therapy for chronic hepatitis C viral (CHCV) infections.

[CoWriter]

Granite was undetectable at week 4 but stated with a viral load of 2,660,000.

Co

[kk7788]

i have also had trouble with my eyes. i keep a bottle of artificial tears by my bed and use it often-i never thought about that being possibly related to the lungs, but it makes sense. a week after all the testing, my regular MD finally put me on levaquin(antibiotic), and ordered a nebulizer that i use with albuteral/ipratropium; he also ordered oxygen at night. his exact words were, "i don't know what it is, but we need to throw something at it while we try to figure it out." i like that attitude.
i can't understand why all four doctors keep saying the tx wouldn't cause this; it seems awfully coincidental to me. what they are saying, is that it is probably indirectly related. the lung speciaist thinks there was something going on in my body before i ever started tx, but i've been able to fight it until now; however, he won't really speculate about what the "something" is. also, he thinks there are two things going on at once, becasue of the "restricive" and "obstructive" patterns; also, my diffusion capacity is abnormal and mildly decreased. the FEV1 is at 33% and the diffusion capacity is at 51% predicted.all of the rest of the PFT is below normal too. the spirometry reading showed that my inhalation and exhalation are both decreased significantly. however, my lung capacity is only very mildly reduced. the lung specialist said that 90% of all he deals with is easy to diagnose, but i don't fit any one particular thing.
can you tell me what "lung infiltration" means? also, what is an axillary adenopathy? both of these showed up on the ct scan.
thank you merrybe. you have already been very helpful.

[CoWriter]

Dear kk:

Your story has really changed in just a few days.  On the 21st you posted on two different threads about the severe lung problems you were having.  We were all very concerned about you....

http://www.medhelp.org/posts/show/741442?personal_page_id=77804&post_id=post_3905244

http://www.medhelp.org/posts/show/741442?personal_page_id=77804&post_id=post_3902409

You said "cat scan showed LUNGS LOOK GOOD" and "the pulmonary function test is in the SEVERE to very severe range" and your lung capacity was "ONLY 20% predicted value".  You also said you were having cardiac symptoms and your doctor wanted you to see a cardiologist.

Today you're saying that your "lung capacity is only very mildly reduced", that you have a "lung infiltration" , "axillary adenopathy", and are using antibiotics, a nebulizer and oxygen.

On the 21st you said your neutrophils have been 700 (Jim even told you that you may not need the Neupogen since it can cause breathing difficulty and to check with your doctor) and today you're saying they've been under 500.

And you're asking whether you should reduce the Riba dose since you now weigh 142 lbs, when I was the one that pointed that out to you after I read it on one of your previous posts.

Today you say  "i only have 7 more shots to go out of 48"....but on the 21st you said, "i have just completed my 46th interferon shot".  Considering that was a week ago and it must be time for shot # 47 right about now, that means that you only have ONE MORE WEEK to mess with our heads kk, not 7 more weeks.

If this was a test to see whether we were paying attention, I do believe I passed.  

Co

[CoWriter]

See my previous post to kk7788

I'm sure you'll want to upgrade my advice rating....LOL

Co

[jmjm530]

I don't do rating upgrades until the Fall Sweeps, but in your case I might make an exception :)

[jmjm530]

I'm sure someone could make a case that you could reduce the riba, given your viral response and genotype. Personally, I think you'd be wrong to do so, unless you are having significant riba related side effects, which you do not appear to have be having. Also, I would never make any kind of treatment decision solely based on anything you read or see posted here. If I were to use one of those studies to make a important treatment decision, first I'd order up the full text of the studies -- what you see are only abstracts -- then I'd give them a good go over, and bring them to my hepatologist to discuss.

[portann]

Yes, exception in order for Co, I'd say. Thank goodness someone can follow the plot.

[nygirl7]

I would NEVER reduce it when you are so close to the finish line.  In fact I went for a second opinion with Dr. Jacobson in NYC and one of the very first questions he ever asked me was "have you ever done any dose reductions".  When I said no he said good that is crucial to success.

I started at 12o pounds and asked the doc for 1000 a day (many here know I took much more than that but that is what I was given).  I lost 20 pounds in the first couple of months and was literally a walking skeleton. Still the doctor never suggested reducing and honestly encouraged me to continue full dose.

I had a full six point drop in just ten days to the riba.  That's a pretty drastic side and still I didn't dose reduce because the doctors said it was a big mistake and should be avoided at all costs if possible. So I went on the procrit and kept the riba.  I just wanted to do my 72 weeks and get done with this for good!

With so little time left - why take a chance that it will have negative effect...it just doesnt' make any sense to me to reduce now.

I guess judging by my own history you can tell how adament I am personally about it though so keep that in consideration!

[kk7788]

i copied and pasted a previous post, becasue i never got a clear answer. i'm sorry i forgot to change the fact that i have only 1 shot left now. it may be that i had a response, but i haven't figured out exactly how to use the website yet. also, i have only recently figured out how to read test results, and i was never getting clear answers from my doctor.  i'm still not.  the doctor that looked at my original ct scan, said it looked okay, but the radioligist report was different. as far as the PFT, there are so many numbers on the stupid thing that it is very hard to figure out. the respiratory therapist gave me a printout after the test (when i first posted) but the doctor's report only recently came in and that changed things. his report stated "severe pulmonary obstruction, mild restriction, and abnormal diffusion."
anyway, i can't seem to get any answers from doctors, so i really just wanted to know if anyone else has had an abnormal PFT while on tx. and i also wanted to know about he ribavirin which isn't really important anymore.
don't worry, i won't "mess with your heads" anymore. but, thank you for your warm and compassionate response.
kk7788

[jmjm530]

why would you ask about reducing your ribavirin if you're for all intent and purposes finished with treatment?

[jmjm530]

sorry, I guess you tried to explain it. If you still question about "PFT", then you should make that a separate post using updated information.

[granitekonig]

You have to cut some slack for Cowriter. There are lots of "trolls" on internet forums. No doubt he was just being critical when faced with the descrepancy in your posts.

He's very helpful and does care.

I hope you're feeling well.

[granitekonig]

thanks Jim, it was more of a fanciful musing than a serious question. You're right, no problems so I'll stick with the full dose.

[Trinity4]

Co is a female and a very smart one at that!

[comeagain]

He shaved his leg and suddenly he was a she dududdduddddduuuuddduuuu!!!!

[granitekonig]

Dude looks like a laaaadddaaaay!

Just kidding - sorry cowriter, for insulting your intelligence by refering to you as 45 degreee up-arrow. =)

[portann]

I'm glad we sorted out Co's gender. Funny how she can follow complicated plots so well but some of us can't even keep track of gender.

[granitekonig]

It is pretty hilarious how he's always remembering the details....

hehehe

[HectorSF]

Hi. Sorry I don't know anything about lungs so I can't help you there.
"i did achieve RVR. at 12 weeks i tested negative".
RVR Rapid Virologic Response is UND at 4 weeks. So you became undetectable by week 4?
Some liver damage...Did you have a biopsy? What stage are you?
If you did became undetectable by week 4, you have about a 90% chance of SVR. Which is about the best odds you can have. Any other factors such as age, liver damage, race, weight, etc. don't change your 90 % chance.
If you became undetectable by week 12, then you have about a 66 % SVR. Which is quite different odds, but still good.

HectorSF

[kk7788]

i wasn't undetectable at 4 weeks, but i went from 3.3 viral load to 8400 viral load. then, i was undetectable at 12 weeks. i asked the question again about the reduction in rib becasue i did reduce from 1200 to 1000 about 4 weeks ago, and now i'm hoping i did the right thing. (i'm sorry if it wasn't 4 weeks to the day, cowriter. if you want me to look up the specific minute of the specific day i guess i can call the doctor and find out.) it has all been really confusing to me. i have been looking forward to the final shot for the last 47 weeks, and now i find myself with a different set of problems. it has kind of taken the wind out of my sails. i was hoping someone out there has experienced that same kind of thing, and could tell me that it will all be okay when i get off tx. anyway, thank you for the concern. kk7788

[kk7788]

sorry, i meant to say 3.3 million at the beginning.

[CoWriter]

Let's see....you want to know whether it's okay to reduce the Riba dose but you already
reduced it from 1200 to 1000 4 weeks ago.


"(i'm sorry if it wasn't 4 weeks to the day, cowriter. if you want me to look up the specific minute of the specific day i guess i can call the doctor and find out.)"

And you're going to call your doctor to find out exactly when you reduced it.....but you said he told you not to reduce it......

"my doctor told me not to reduce, but he can't give me a good reason to stay on 1200mg after the weight loss."

LOL

Don't be offended.  I'm just teasing you.  Actually, if you don't feel like you can ask  health care professionals any questions you have, that means we're not doing our job.  


An infiltrate indicates that a biological substance has snuck in and now resides in the lung.  Like fluid, infection, an area of bleeding, etc.  This could be caused by any number of diseases.  Pneumonia is one example.

Neupogen can also cause infiltrates.  

I wish I could tell you that it will all be okay when you get off tx.  If the infiltrate is caused by pneumonia or by the Neupogen, it should go away.  But usually you don't need oxygen for pneumonia.   I think if you really have only one more week of tx left, you should discuss with your doctor stopping early.  I have seen people end up with permanent lung damage.  

Best of luck to you,

Co

[Evangaline]

What you are experiencing may be a rare effect of the interferon called interferon induced sarcoidosis. This will show up as bilateral infiltrates on CXR. Enlarged lymph nodes in the neck/axilla/thoracic regions may occur. It may or may not be accompanied by a rash. Fatigue, muscle & joint pain and weight loss can all occur, which can be masked by the tx.
It WILL cause lung restriction i.e. decreased lung volumes and compliance (the ability of your lungs to stretch).  It also causes obstructive changes due to inflammation. It will be seen on your PFT results.
I suggest that you go back and talk to your Dr asap about the possibility of this. The good news is that interferon induced sarciodosis resolves when tx is stopped.
Evangaline

[CoWriter]

"It is pretty hilarious how he's always remembering the details....




SHE

[granitekonig]

I know.... ;) That's was the point. That I forgot already.

[CoWriter]

I bet it won't happen again.

Co

[granitekonig]

smooch ;)