Hi Mary,

Your fibroscan score is golden! No problems there and your latest liver enzyme levels are excellent. It's very common to see them drop quickly once you start treatment, so this indicates things are going well.

I have one question for your doctor though. For best blood levels, Ribavirin is usually split into two doses, 12 hours apart. That keeps the drug activity constant over a 24 hour period. Taking it once daily will cause peaks and valleys in the coverage. I know they placed you on Riba because you failed a previous treatment, but you clearly don't have cirrhosis and Ribavirin is usually reserved for cirrhotics when Epclusa is used. If they are going to use it, I would want to split the dose to 400 and 200, 12 hours apart. It will simply give you better coverage over a 24 hour period. Keep taking it as prescribed, but it might be a question you can ask next time you speak to the nurse or doctor. This is just my opinion, but clarification is good!

If I can provide you with any additional information, please let me know.

Tig,Sorry! I was trying to say doctors office , not destitute! This phone changes my words with spell correct!

Hi Tig! 

I am on 600mg of Ribavirin once daily.i just left destitute office and they told me that my fibroscan result back in December was 5.5 My lab result from 6/29 showed AST 10 and ALT 9 . And the HCV <15. Yay!! I'm so hopeful about this treatment!

Mary,

Can you tell me how many milligrams of Ribavirin you're taking each day and how often?

Hey Mary,

Good job on the sig. line update!  

Ya, we had previously been trying to suss what your prior Merck trial treatment was (in your other posts in Epcluser's Corner) and there, we had some suggested trial drug names/numbers - but it would be interesting for us to know what didn't work for you. 

Not to worry, you got the best now!  C.

Hi Mary,

When you visit with your doctor, ask for copies of all of you lab work, including the fibroscan results. They are very valuable and should be saved for future use. I failed to keep mine back in 96 when I was diagnosed and when I spoke with a trial nurse about starting a clinical trial, I was disqualified because I didn't have documentation on my previous treatment. My doctor back in 96 destroyed my files after 5 years because I had selected a new doctor later on. So get them and keep them. You have a right to them and they have to provide copies on request.

Trial drugs never have names, they are given numbers. Each drug manufacturer has different ID's. You said you were on a Merck study, their numbers start with MK. You may see reference to that in your trial paperwork. If you can find those numbers, I can tell you what drugs were used. I wonder if you weren't on a trial for Zepatier. That fits the time span you would've been on it. There are a number of trials, so those numbers will narrow it down.

Looking at your new signature, thanks for doing that, you are well on your way to the CURE! Since you have two viral load results of <15, I'm assuming you're considered undetected now. Your AST/ALT are stellar! That's a sign of a healing liver. WOOHOO! Congrats on that! 

Thank you for your replies!

mBefore TX my md told me that lab showed I was resistant. I was previously in a clinical trial on two medications that did not have actual names. I don't know what they were. I do not have cirrhosis. I don't know what my stage of fibrosis is for sure. i will ask when I see the dr later this week. I had a fibroscan a few months ago but I dont know what my numbers were. My ft had originally wanted to put me on 24 weeks of Epclusa but my insurance would only approve 12 so they added Ribavirin. I did update my signature with more information like you suggested. Thanks for your encouragement!

Mary

Hey Mary,

Did your doctor test you for drug resistance before starting? If you failed treatment before, I don't remember your history, what drugs were you on and how long? Do you have cirrhosis? I'm wondering why he started you on Ribavirin, if you have any other clues, let us know. Cost is one reason and advanced fibrosis/cirrhosis is another.

 12 weeks of Epclusa is usually enough, and the addition of Ribavirin was done in the trials with good success. There is another drug used with Epclusa now, called Voxlaprevir that is very effective, near 100%. It's also more expensive and isn't used widely. The side effects are almost non existent, I wish I could say the same thing about Ribavirin. They're tolerable, but not pleasant. Keep pushing that water and use our search function for more tips on handling some of them. That subject used to be very popular here. Let me know if I can help. 

When you have a chance and a few minutes, please set up your signature line. It helps to have your genotype, fibrosis stage and your treatment history. You can look at ours for examples. There is a shortcut to instructions in mine. It helps us when replying. 

Keep on it! You'll be amazed at how effective this stuff is! Don't forget to drink lots of water! You should also avoid the sun and hot water showers! Ribavirin will cause sun sensitivity, moodiness and may cause some itching. If you start noticing a rash or itchy skin, don't scratch! There are additional tips available if you need them. Good luck!

Hey Mary,

Great to hear from you, been wondering how you were making out on your 12 weeks of Epclusa/riba.

What was your SOT (start of treatment) date again? Was it on May 11th? So ... does that make you just over 7 weeks (almost 8 weeks) completed of your 12 week therapy - you might have to correct me there -  does that make you having only about another 4ish weeks of therapy to complete?

I took a quick gander over at your other (previous posts) to remind myself of your details (that's where a big signature line full of your info/labs and such comes in so handy), and I recall over there you were on a 600 mg per day of the added riba, did they ever talk about changing the amount of riba? - sometimes they up it or decrease it depending on your response, mostly, riba gets tweeked for things like if you develop something like anemia - I am assumming they have just kept you at the same riba dose all along. Ya, I'm sorry you had to have riba added to your epclusa, just because of the increased incidence of sides (such as you mention), but I am not sorry you received a third drug to boost sign/seal and deliver a guaranteed cure this time! They will, in future (someday) drop riba use and when they need a "triplet" therapy it will hopefully not be epclusa and riba, but epclusa and (new) voxilaprevir added. Less sides I think with vox, over riba.

Especially the eclusa (and your added riba to make it a boosted triplet), is just what you needed, perfect for you, this I am sure will be your ticket out of HCV forever. Epclusa is stellar for GT3's, stellar for RAV's, and your riba triplet is very powerful successful medcine.

I know you are feeling on edge, because of that prior Merck trial treatment not doing the job for you. Yes, you probably had some "resistance" as you say. Even treatment naive GT3's (any GT really) can "come with" ready "built-in" resistancies, and yes, you could have developed some new or slightly different resistances, due to a failed treatment, but of all the studies I have read, epclusa has already proven itself many, many times over, that it is near-"teflon" in consideration to pre-existing RAV's. Be assured, with epclusa and riba you got the right/best treatment for you and your HCV this time. Epclusa has been proven to be is a exceptional drug in performance across all GT's with RAVS's. Your regime is perfect for a GT3 needing re-treatment. In particular, GT3's have particular RAV's that they are often known to "come with", and epclusa addresses them.

Did you ever find out what the drugs were, that you took for 12 weeks in the Merck trial?

Did you ever recieve any old LFT's (ALT's/AST's/Bili's) that you can share with us? Or any current LFT's from your 2 week and 4 week blood draws? I can't recall if you ever did get a fibroscan (just that there would be no more biopsies due to Plavix) and, what were your past and current Fscores?

When you get time, maybe you add all these kind of details to your sig/ line - GT, SOT/EOT/labs etc.

Big congrats on your 2 and 4 week UND's - stellar! Just like epclusa is. You will do it this time!  C.

PS -24 weeks?, that I have not heard of for epclusa, it works too well, but in the past, they used to routinely prescribe 24 week lengths for other older drugs.

-- Edited by Canuck on Monday 3rd of July 2017 01:58:14 AM