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Author Topic: Does anyone have any tips for making it through the ribaviran  (Read 7936 times)

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Offline lolacme

  • Member
  • Posts: 55
Hey everyone, We are adding ribavirin to my treatment regime and I would like some tips on how to handle the ribavirin and its side effects. When to take it? How much food? Your experience? 11 days into Harvoni and virtually no side effects but I expect side effects with the ribavirin-I have had it before but only with Interferon.
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline Junkyard

  • Member
  • Posts: 24
Re: Does anyone have any tips for making it through the ribaviran
« Reply #1 on: June 23, 2015, 08:29:35 pm »
You will find that the sides are somewhat similar than with inter. I finished almost 2 months ago with 12 was of Harvoni and RIBA. I always have felt very tired and weak. This treatment did change somewhat in that I could not and still don't sleep well at all. My hemoglobin got pretty low but stabilized. The difference now is I have much more energy, especially in the morning. The sides do ebb and flow, some days are better than others. I tried to pick my battles and save energy when I could.
I think if you are experienced and have some liver problems, ribavirin should always be a part of treatment so long as you can endure. Before I began I watched and read a bunch about Harvoni and adding ribavirin. Most of the doctors agreed that it would help. The stats are still not as complete as they should be on the subject. Hopefully in the next few months we will get a clearer picture on who and what to use.
Honestly, I would have done interferon again if it would have given me the 100% cure rate.  I am so tired of this thing. I really had a tough time with telaprivir and inter and RIBA , but I stuck it out after finding out I was und. The bad thing is I relapsed. So here we are.
I almost tried to get my doc to see if I could do the 24 weeks instead of 12.  I just waited too long to try to get my insurance to go for it. So far I am und. I just really hope this is the time for me.
I have said before, hang in there, if you can handle it at all. We have only 1 liver and life, do what you can to save them both.
Good luck to all

Offline dearprudence

  • Member
  • Posts: 121
Re: Does anyone have any tips for making it through the ribaviran
« Reply #2 on: June 23, 2015, 09:42:44 pm »
I am on viekira pak with ribavirin - just staretd week 7- undetected at 4 weeks - a few small side effects from riba - acid (take omeprazole) and restless sleep. it was suggested by others on this site (see Kimintheforest and Philadelphia in forum on reducing ribavirin) that I take my evening dose around 5 pm - tried that the last 2 nights and it seems to help. Everyone is different so side effects vary. Those posts I mentioned also discuss what to eat. Good luck!
Prudence

Offline Long_Haul

  • Member
  • Posts: 161
  • Slayed the Dragon
Re: Does anyone have any tips for making it through the ribaviran
« Reply #3 on: June 23, 2015, 09:45:06 pm »
I did Riba and Harvoni after three different takes with Riba and Interferon. This one was a success and my only difficulty was gauging how much exertion was too much. If I pushed too hard and got really tired, it took quite a while (1-2 hours) to feel like I was able to move around OK. This was different from previous treatments. I am just over 3 months and undetected so it is worth the effort. My respiratory sides are almost gone and am now getting back to normal recovery from exertion. Make sure you eat a regular meal, not just a snack with the Riba and your stomach should not bother.
Pace yourself and you should be OK. Let us know how you do with it.

Best of luck,

AL
Genotype 1A

Diagnosed 1989
Biopsy-cirrhosis stage 4 2000, no starting VL this round

3 rounds of Int+Rib
(Combo/48wks,Peg/26 Wks,Triple with Incivek/16wks)
UND with Incivek, Relapsed
Started 12 weeks Harvoni and Rib Jan 2nd,2015
4 weeks Undetected
8 weeks Undetected!
EOT at 12 weeks Undetected
EOT at 24 weeks STILL UNDETECTED
Completed TX Mar 26th,2015

EOT plus 4 weeks UNDETECTED
EOT plus 12 weeks UNDETECTED !!!!!!!!!!! I am DONE!

NO LONGER a member of the "WAITING GANG"

Offline lolacme

  • Member
  • Posts: 55
Re: Does anyone have any tips for making it through the ribaviran
« Reply #4 on: June 24, 2015, 11:55:26 am »
Thanks for the tips everyone. I want to beat this thing so badly. I feel better about the treatment now that I am on ribavirin. I know it makes the treatment harder but I agree that ribavirin should be given to everyone with advanced liver disease. I read a news articles on this forum that 12 weeks of Harvoni AND ribavirin is almost the equivalent of 24 weeks of treatment.  96% SVR vs 97% SVR with 24 weeks of Harvoni alone. My doctor is checking my blood count every 2 weeks. How often did your doctors check yours? Last time I had to have 4 units of blood on ribavirin. I don't want that to happen again.
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Does anyone have any tips for making it through the ribaviran
« Reply #5 on: June 24, 2015, 12:18:49 pm »
Hi Lolacme. That's good that you have added ribavirin. I think it will improve your odds considerably and will in all likelihood do the trick for you and get you cured.

I am into Week 8 out of 12 of Harvoni+Riba. No real problems. I do get out of breath on a hill or climbing stairs, due to low hemoglobin because of the riba. My hemoglobin dropped to 102 (or 10.2, depending on what units you are using) at end of Week 4. Doctors don't consider dose reduction unless it falls below 100 (or 10). I have not been checked since then. Will be checked again at end of this week (Week 8 ). I feel like it is no lower and may possibly be higher. I feel peppier.

My primary Riba side effect (and my only persistent side effect that has been there practically since the beginning) is a dry cough, which I can control somewhat with Ricola lozenges.

Like Prudence mentioned, I take my 2nd dose of Riba at 4 pm or 5 pm at the latest. When I took it later in the evening during Week 1, I could not sleep. I take my morning dose of Harvoni and 3  Riba at 9 am.

Wishing you the best! :)
kim
« Last Edit: June 24, 2015, 12:23:37 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Junkyard

  • Member
  • Posts: 24
Re: Does anyone have any tips for making it through the ribaviran
« Reply #6 on: June 25, 2015, 07:41:07 pm »
I took ribavirin in the morning and the evening and Harvoni at lunch.  It seemed to work ok for me. I am a salesperson and the stress always seems to have some effect on me whether in treatment or not.
 I love to run and every treatment I have been through has made me suffer in energy.  There have been times I have not been very active and it seems the older I get the less I want to do. 
If I did not have responsibilities and bills I guess I could take it easier on the work end and concentrate on the exercise.
I did notice I did not have the rashes I had with the telaprivir combo.  That was really bad, I had a doctor who really did not care. I did not realize that until it was too late.
As yet the sleep has not stabilized, I am about 7 wks eot. I have had migraines for 25 years, they seemed to be less on Harvoni but since end eot they seem to be back. As before. I was hoping they would be related to hepc and go away but I guess they are not. That is another subject altogether.
Good luck

 


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