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Avatar universal

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.
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Avatar universal
smooch ;)
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568322 tn?1370165440
I bet it won't happen again.

Co
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Avatar universal
I know.... ;) That's was the point. That I forgot already.
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568322 tn?1370165440

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




SHE
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Avatar universal
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
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568322 tn?1370165440
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
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Avatar universal
sorry, i meant to say 3.3 million at the beginning.
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Avatar universal
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
Helpful - 0
446474 tn?1446347682
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
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Avatar universal
It is pretty hilarious how he's always remembering the details....

hehehe
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Avatar universal
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.
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Avatar universal
Dude looks like a laaaadddaaaay!

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


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388154 tn?1306361691
He shaved his leg and suddenly he was a she dududdduddddduuuuddduuuu!!!!
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Avatar universal
Co is a female and a very smart one at that!
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
why would you ask about reducing your ribavirin if you're for all intent and purposes finished with treatment?
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Avatar universal
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
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179856 tn?1333547362
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!
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Avatar universal
Yes, exception in order for Co, I'd say. Thank goodness someone can follow the plot.
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Avatar universal
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.
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Avatar universal
I don't do rating upgrades until the Fall Sweeps, but in your case I might make an exception :)
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568322 tn?1370165440

See my previous post to kk7788

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

Co
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