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G3 Soaldi Ribavirin 24 weeks

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Posted 10/7/2014 1:33 AM (GMT 0)
I am a G3 with a F3/F4 fibrosis stage. Because G3 wants to also reek havoc in other ways, I am moving towards steatosis (fatty liver). I need to treat but I cannot wrap my mind around the terrible side effects of the ribavirin for 24 weeks.

Is there anyone out there who took the ribavirin for 24 weeks and thought the ribavirin was a breeze? Does anyone have other health problems as a result of exposing your body to 24 weeks of ribavirin?

I have been refusing the interferon for years not solely due to the side effects but because of its lack of efficacy. Now, because of my genotype, I get no access to the better drugs.

I can not help but think it just is not worth the ribavirin for 24 months, and maybe more cuz of half life, and the permanent destruction of other body parts potentially caused by ribavirin.
Posted 10/7/2014 3:41 AM (GMT 0)
Contrary to many of the posts here, I didn't have horrible side effects from ribavirin. No rage, but it did combine with interferon to make me feel lousy in general. If you need to use ribavirin to get rid of Hep C, it's well worth feeling crappy for 24 weeks.
Posted 10/7/2014 12:43 PM (GMT 0)
David - Thanks for your reply. I am not so worried about feeling crappy, I am worried about the exposure to the ribavirin for 6 months causing other health issues, i.e., heart, kidneys, depression, etc. that are more permanent in nature.

That is probably what has been the most difficult is determining is how prevalent the ribavirin effects are that most folks took the ribavirin "with" interferon.

Did you experience any anemia? and did you use the drug for 24 weeks?
Posted 10/7/2014 12:46 PM (GMT 0)
Detroit girl. Welcome to the forum.

Most of our treatment posters on the new combos have cleared the virus...which at your stage of fibrosis is the #1 most important thing to keep in mind. Patients are clearing the virus in 4-6 weeks. And with NO Hep C, they are feeling better day by day and better able to cope with any side effects.

The sides we are seeing are headache, which seems to resolve when the Hep C is gone, or with some small dose of Tylenol. And anxiety. Which the docs are treating with good results. Those who report previous anxiety seem to be the most affected in my opinion.

HOWEVER....Hep C will kill you eventually. 6 months of anxiety will not. We are recommending treaters takes their meds with food and that they drink half their body wt in ounces of water....hydrate, hydrate, hydrate...and they report feeling better.

The Sovaldi seems to be doing the heavy lifting, and the Riba is sweeping up the rest...making sure the job stays DONE.

However, the docs are telling us that there are new oral treatments due out soon...with no Riba. With your fibrosis scores it is a difficult decision....once a liver decompensates there is no 6 month treatment (with or without anxiety)...you can be in big trouble.

My partner, Mike, was fully cirrhotic in 2010, his liver decompensated, and near death. He needed a liver transplant and was able to do 6 months of alcohol treatment to qualify for transplant (he was an alcoholic, Hep C, and liver cancer patient). He was transplanted in 2011, but the Hep C Genotype 1a came right back....and started on his new liver. He qualified for a Sovaldi/Olysio combo this year and is finally and thankfully clear of the virus. We are hoping that he has a sustained viral response. He would have endured ANTHING to clear the virus as he knows first hand what End Stage Liver Disease can be like..AWFUL.

I hope you get treatment soon.

Hugs,
Mama Lama
Posted 10/7/2014 1:43 PM (GMT 0)
MamaLama - I feel like I am in between a rock and a hard spot. If the treatment was 3 months, I would be much less concerned about the riba effects on my body. Headache, fatigue - I have no fear of but I see so many get anemic, have insomnia (really not good for the brain, organs), heart rate problems, breathlessness and other rather significant medical issues. I am very opposed to meds for sleep. Watching the deterioration of my mother from sleep meds was horrible.

I am hoping that I will be able to get the new Harvoni, which might still include the riba, for a 3 month treatment versus a 6 - with the odds of SVR being near 100% versus the 60%-82% I am seeing with sovaldi/riba combo for 6 months. Although that may be challenging cuz even though that combo works for a G3 - Gilead only sought FDA approval for G1.

This is a tough call.
Posted 10/7/2014 1:48 PM (GMT 0)
I did interferon/ribavirin for 48 weeks. No lasting damage that I'm aware of. Then 4 years later had a transplant.

Better to suffer side effects for 24 weeks and rid yourself of Hep C, than let the virus damage your liver any more.
Posted 10/7/2014 3:15 PM (GMT 0)
So David - Can I assume the interferon and riba did not work - hence the necessity of the liver transplant? Or you got SVR and STILL needed a liver transplant?

How long ago did you have the transplant and do you still have C?
Posted 10/7/2014 6:41 PM (GMT 0)
Even those on a transplant list want to treat Hep C, Detroit. After a transplant, since the virus is in the blood, Hep C will attack the new liver if you still have Hep C. It can happen very rapidly, or take a few years. My husband, themister, is a GT3a. He treated twice with interferon/riba and obtained SVR the 2nd time. That was 2011- 2012. Themister had stage 4 cirrhosis when dx in 2005. His first treatment ended in relapse (2005).

He has been on the transplant list over a year. Riba side's are a breeze, compared to ESLD. Welcome to the Hep forum, and good luck while treating. Big Hugs
Posted 10/7/2014 7:40 PM (GMT 0)
I was undetectable after the first month of interferon/ribavirin (in 2004), but 3 months after the end of treatment, I had a cerebral hemorrhage. Twenty days after that had a seizure and another hemorrhage. This was almost fatal. Arm was paralyzed and couldn't speak for over a month. The trauma brought back the Hep C and my liver was trashed in no time. I had been high stage 1, but went downhill to End Stage Liver Disease very quickly. Spent 4 years barely getting by. Then in 2009 received a liver. A year later my viral load began rising and once again did interferon/ribavirin, this time for 55 weeks. I have now been undetectable for 3 years. Tomorrow morning I go in for my 3 month blood work. In a week I'll see if I'm still clear.

I was anemic at one point, but my docs gave me procrit, which worked beautifully. As I said before, the side effects from treatment are preferable to living with Hep C. Hep C makes one more likely to get liver cancer and you don't want that. When they biopsied my old liver they found 2 cancerous tumors that had just formed. Had they grown much more it might have been too late for me.
Posted 10/7/2014 7:44 PM (GMT 0)
Thanks themiz for your encouragement but I do not believe I will ever opt for a liver transplant. So the sad news is that even with treatment, with a dx of F4 transplant is inevitable - with or without treatment!!! I do understand that a transplant might be more successful without the HCV but.....
Posted 10/7/2014 8:17 PM (GMT 0)
Detroit, Each person must make the risk/reward decision for themselves, and decide what you want for your life. Not everyone lives long enough to see ESLD and be close to a transplant. Some die of old age of some other malady. We are year 9-10 themister has had cirrhosis.

At this Hep forum, we have had many caregiver's here who were taking care of spouse's that choose not to have a transplant. It is a choice you get to make. There are good treatment options, but it is your call. Whatever you choose, you are welcome to join us here on your journey. Big Hugs
Posted 10/7/2014 9:55 PM (GMT 0)
the miz - you and your husband seem to have been around the "horn" with all of this so I have a question for you. So ou are saying that your husband has had F4/cirrhosis for 10 years "with" the G3a in place? Did he drink alcohol, or other shall we say toxic substances, at any time during that time that would have progressed him into ESLD?

Honestly, if I can just hold on - and I have zero symptoms - and who knows how long I have been an F3/F4 - but I am sure wishing I could wait for the better meds. There will be many by the middle of next year - shorter in duration which means less chemical exposure - much preferable. I have had some form of HCV for 44 years now (A<B<C) I developed antibodies to the A and B.

The riba seems to be dangerous in some ways to other body functions like white blood cells, ocular issues. And again, if the exposure was shorter, i.e., three months versus 6 months - I would be more inclined not to wait.

I do not drink and I am trying to watch my carbs, although not overweight at all, and I exercise 5 days a week.

Also has anybody heard about the SBEL1? Now that treatment, looks rather inviting.

I thank you all for your input. It really is quite helpful information wise and emotional wise.
Posted 10/8/2014 1:19 AM (GMT 0)

Detroitgirl said...
the miz - you and your husband seem to have been around the "horn" with all of this so I have a question for you. So you are saying that your husband has had F4/cirrhosis for 10 years "with" the G3a in place?

No. He was dx with Hep C cirrhosis, stage 4 grade 2 in 2005 (9 years ago). We have no idea how long he was cirrhotic prior to dx at that routine physical.

He treated the 2nd time and went undetectable August 2011. He obtained SVR July 2012. That means he had 'diagnosed cirrhosis' for 7 years, prior to SVR.

Yes, GT3a.



Did he drink alcohol, or other shall we say toxic substances, at any time during that time that would have progressed him into ESLD?

No. He did not drink alcohol after he was dx.

He drank occasionally prior to 2003, but that had stopped alcohol and was on some health kick, getting older and trying to keep up with the young guys on the job..lol. After he was dx, he did not use illegal drugs, nor any RX drugs on a daily basis, except vitamins. Until he had to add medication to treat the Hep C, gastric bleeds, portal hypertension, and another non Hep C (age) related issue. He has taken certain meds given to him during ESLD for things like a broken shoulder, and cutting his had with a table saw.

He also took some meds during his Hep C treatment for sleep, and an antidepressant for the riba rage. But they were short course, about 12 weeks of the 24 weeks treating. Yes, he had wooly spots and anemia and many complications treating the 2nd time.

Themister worked the entire 1st treatment, construction work. The 2nd treatment he was bedridden 4 months, required rescue meds, had one surgery, and had a lot of complications and hospital visits. But he was taking interferon/riba, and he had significant cirrhosis complications by his 2nd treatment.

Honestly, if I can just hold on - and I have zero symptoms - and who knows how long I have been an F3/F4 - but I am sure wishing I could wait for the better meds. There will be many by the middle of next year - shorter in duration which means less chemical exposure - much preferable. I have had some form of HCV for 44 years now (A<B<C) I developed antibodies to the A and B.

We figure themister had Hep C for 35-45 years, based on the progression of his disease. In 2010, suddenly he had a gastric bleed. It has been tough the last 4 years.

The riba seems to be dangerous in some ways to other body functions like white blood cells, ocular issues.
There are risks, of course. You must choose. My husband felt the risk was worth it to rid his body of the virus. It is your decision how you treat, Detroit. Or, if you choose not to treat. I would not put my money on herbals with this virus. That is just my opinion :)

I thank you all for your input. It really is quite helpful information wise and emotional wise.

You are very welcome. I wish you the very best!

Posted 10/8/2014 1:41 AM (GMT 0)
themiz thanks for the comprehensive reply. I am not hanging my hat on herbals but if you look at the SBEL1 it is impressive. Even EASL is supporting it.

One more question......I see little to no real information on the post treatment blues which appear to be very real, and very enduring for some. I found a few studies and in one - although small numbers, 25 out of 27 had post treatment issues? that remain - even years later and report not really feeling better after treatment. Did themister feel good, or different better, once he reached SVR? or anybody else - outside of the victory of beating the virus? I see long term anemia issues/white blood cell problems, aches, headache - all remaining even after cessation of treatment. Although, in all fairness, some of these folks did engage in the interferon which would not be part of my regime.

Wish you the best as well.
Posted 10/8/2014 2:58 AM (GMT 0)
Long term issues. Well, not long term. Up to 6 months while interferon/riba washed out of his system and get his bloods back to normal. But honestly, you can not compare his interferon/riba treatment with the new Solvaldi combo's and sides, other than some riba sides. It is powerful. There might be sides!

As for the herbal. It is not available. That is the issue. A lot of hope in the future...but right now and in the very near months, some great treatments that are working. Big Hugs
Posted 10/8/2014 4:02 AM (GMT 0)
Detroit, Mike had sides during treatment with Sovaldi and Olysio...he had skin stuff...rashes and the like. But no headaches or anxiety. As a matter of fact, by week 4 he was chipper for the first time in YEARS. And has been better every day. He has started playing golf again for the first time in 5 years.

Of course he had a lot going on during those 5 years....

Alcholism
Cirrhosis
Hep C
Decompensated Liver, ESLD
Heptocellular Carcinoma


He:
DX with Cirrhosis 2003
Got Sober 9/2010
Discovered he had HCC 2/2011
Stage 3 Fibrosis from untreated Hep C, DX 1/2014
Transplanted 5/2011
Treated for Hep C 3/2014-5/2014, still undetected

He was first diagnosed with Cirrhosis after liver biopsy in 2003 after failed Inf/Riba treatment. He was told at that time that his liver could hold on 15 years if he did not drink alcohol....he did not pay attention to the second part of the sentence...after the IF...and blew out the rest of his liver in 7 years. Most times he Viral Load was checked it was over 3 million. It is a wonder he did so well so long.

It took much shorter time to do in the post TP liver!

So....you have a decision to make.

Hugs,
Mama Lama
Posted 10/8/2014 4:59 AM (GMT 0)
Hi, I took sovaldi and ribavirin g 1 for 24 weeks. Undetected from end of first week. Did get mild anemia and after 12 weeks Dr reduced rib by half and immediately improved hemoglobin. Ended treatment undetected. Within one week after treatment, labs on all rbcs, etc back to normal. This week having labs for three mo after end of treatment. My blog is open to you if you care to read...also check out steves and allens. Best to you whatever you decide. You have found a great support group here..lots of knowledge and caring.
music 👱
Posted 10/8/2014 5:30 AM (GMT 0)
Hi there Detroitgirl,
I'm getting ready to start week 14 of 24 weeks on ribavirin and sovaldi. I also am G3A and have cirrhosis. I tried treatment with interferon and ribavirin about 17 years ago and coukd not finish it because of blood count issues. My first 3-4 weeks were an adjustment on this treatment as I did become anemic, had a few headaches, felt irritable etc. but it is NOTHING like the interferon treatment that was really terrible. Now I've adjusted quite well to this treatment and am working full time at an active job. I get tired at the end of the day so I go to bed early! I'm having no real significant side effect problems nowadays. After 3 weeks I cleared the virus and feel very hopeful that I will stay virus free after the treatment. As I understand, my cirrhosis will be way less destructive if I can keep virus free. I'm very happy to be doing this treatment. I wish you the very best,
Plant
Posted 10/9/2014 2:12 PM (GMT 0)
Thanks to all of you comment-tors. I am just seeing these last ones now because for some reason, healingwell did not send me any messages. So appreciated guys.

At any rate, I may reconsider the 24 week movie of sovaldi/Riba if I cannot get the new Harvoni w/Riba off label. Trials are showing 100% - and - shorter treatment. The chemical exposure could not be good....so the shorter the better in my book.

What is really good to know is that I can take a little time to make this decision - and hopefully the right one - as I see the assurances of not dying tomorrow. I am happy to see that those of you who took, or are taking, the sov/riba are faring pretty well. Its been hard to separate the real sides of the riba since most took it with the interferon.

I do not drink, and I exercise. Most recently, took almost all carbs out of my diet to make it easier on my liver and fend off the G3 fatty liver bonus it wants to give me while I figure this out.

This Friday brings the approval of the Harvoni, and the following week I see one of the liver people I have been working with for some discussion about options.

Again thank you all for your input.
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