Author Topic: Want to stop riba/sovaldi geno 3 (Read 22759 times)

mtc · « **on:** March 16, 2016, 11:19:43 pm »

I just finished 4 months riba and sovaldi. I'm supposed to do 6months and I want to stop taking it. I've become a different person. It's not even that noticeable. I'm just not as nice of a person anymore. So much so that my wife left me. I have way less sides than most people but now the depression is getting serious.

Does anyone know the success rates of 4 month for geno 3? Also if I stopped can I just stop and how long before I start feeling normal again?

AussieRosa · « **Reply #1 on:** March 16, 2016, 11:34:24 pm »

I'm so sorry you've reached the point where you are seriously thinking of stopping treatment. I understand there's only so much a person can bear, but you've passed the half way point. The end is in sight now and the payoff of being cured of this disease is huge. If your wife left you then the changes in your personality must be very serious. Have you talked to your doctor about this? Maybe they could give you some antidepressant, xanax or something else to calm you down a bit and ameliorate some of these personality changes you're experiencing.

Whatever you decide, we'll be here to support you. Keep us posted on how you're doing and what happens.
Rosa

KimInTheForest · « **Reply #2 on:** March 16, 2016, 11:45:17 pm »

Can you talk to your doctor about dose reducing the ribavirin? Because the riba is almost certainly the cause of your problems with regard to personality changes and depression. If, for example, you are taking 1200 mg/day of riba, you could probably drop down to 800 mg at this point without even diminishing your chance of success. And that drop may be all you need to end the worst of the riba effects on your mood and personality. You could probably even drop down to 600 mg. But talk to your doctor, of course.

kim

mtc · « **Reply #3 on:** March 17, 2016, 11:15:07 am »

Thanks Kim and Rosa. Ok I've been trying to reach my dr about lowering my dose.

I know 24 weeks is the recommended time for geno3 but I see that some people are only 12 weeks? Does anyone know why? Starting out my VL was only 700k with no liver damage at all.

KimInTheForest · « **Reply #4 on:** March 17, 2016, 12:32:40 pm »

Quote from: mtc on March 17, 2016, 11:15:07 am

Thanks Kim and Rosa. Ok I've been trying to reach my dr about lowering my dose.

I know 24 weeks is the recommended time for geno3 but I see that some people are only 12 weeks? Does anyone know why? Starting out my VL was only 700k with no liver damage at all.

I don't think I have been aware of Geno 3s doing only 12 weeks Sovalid+Riba. Geno 2s do 12 weeks of that combo. And Geno 3s can do 12 weeks of Sovaldi+Daklinza. I have been wondering if your doctor could switch you to Sovaldi+Daklinza for the remaining 2 months. The only problem is that there would probably be a tedious approval process for the Daklinza, and you would likely have to keep taking the riba during that time, but you could probably reduce the riba dosage.

keep us posted

kim

beto · « **Reply #5 on:** March 17, 2016, 12:35:24 pm »

mtc

You probably could have done the 12. I am not your doctor, so I don't want to get in trouble. I just read about a study where they found Harvoni to be effective in 6 weeks. The study also showed that lower viral loads had zero to fewer relapses on 6 weeks of therapy. Low viral loads were considered 3 million and under. 7 k is low. I know that you are not on Harvoni so it lacks the Ledipasvir, hence the Riba.

As others have suggested, the riba is much more often the culprit, so your doc adjusting the meds could make it tolerable to continue. Just make sure you are not anemic.

Sorry about your troubles...go back and read some of the accounts of folks on Riba. Riba rage is real and keeping a relationship has been a challenge for many. Hang in there and peace (yah right)

beto · « **Reply #6 on:** March 17, 2016, 12:36:26 pm »

Oh sorry...I did not note that you were geno 3.

kimharvest · « **Reply #7 on:** March 17, 2016, 03:27:04 pm »

MTC: I had 3a and went 4 months and was cut. I was dropped at 3 1/2 months by my doctor because of non-compliance; I had the nerve to have lost my antidepressants. They got paid so they didn't care about me. I felt it was a death sentence but I tried everything to continue and couldn't. I finished my remaining meds and reached 4 months and that was that. I felt the riba was horrid and I was a horrid person so irritable and bitchy. But I still wanted to continue to finish it. I seem to be 'cured' and am non detected after 6 months. I am not sure what a few more months would have done to my body. It is going on a year since I finished but feel horrid, weak, confused, tired; not living the life yet I am hoping for. Riba takes its toll. You are risking it coming back if you stop. But it worked for me. Though that doctor group is on my shit list. Good luck with whatever you choose. I believe you drop from 96% cure rate to 70% or less. It is a tough decision.

lporterrn · « **Reply #8 on:** March 17, 2016, 03:36:21 pm »

Oh I ache for you - I can give you the data if you tell me if this is your first treatment and if you have cirrhosis. I hope you don't stop on your own without your doctor's help. Forum members can add some support but you need facts and good medical management. I can tell you that stopping now will lower your chances of being cured significantly, but other medications are coming out (plus there is Daklinza + Sovaldi)

Personally, ribavirin is a bear to take (Bear was not the first word that came to mind). I took it for a year and then again for 12 weeks. There are many ways to manage the side effects (which is why I wrote 2 books). One thing to start with is sleep - if you aren't sleeping, life is intolerable. There are many medications that can help with sleep (I preferred hydroxyzine because it was an antihistamine which helped with riba-rash and I could take in small amounts and build up without daytime drowsiness).

Start by listing your side effects and the doc should be able to help with the medical management and we can give you some non-medical tips.

Hang in there and stay close to the Forum.

mtc · « **Reply #9 on:** March 17, 2016, 05:54:14 pm »

Thanks Guys!

Kimharvest - that does give me some hope.

Lucinda - I'm treatment naive and I have no liver damage at all. My vl was 700k when I started. 4 week labs und.

I talked to my pharmacist at Briova for quite a while she told me that if I'm having really bad side effects I can technically drop down to as low as 600 on the ribavirin. She says she's fairly confident that I can lower my dose all the way down and still have a successful treatment. . I'm currently at 800. I've been trying to reach my doctor for days but no one at the office will return my calls though I tell them it's urgent.

lporterrn · « **Reply #10 on:** March 17, 2016, 07:07:19 pm »

Hi mtc,
OK, let's start with the bad news - according to the prescribing info the ribavirin dose should have been higher - the dose is weight based - if you weigh <165 lbs then 1000 mg and ≥ 165 lbs = 1200 mg. Your doc may have had a reason for the lower dose, but this means I can't tell you what your odds are statistically. I can only tell you what the odds were on the doses in the clinical trials. However, do keep in mind that you may do well at the dose you are on, particularly because you went nondetectable quickly - that is likely more important predictor of SVR than the dose you are on.

So, here's the data:
Sof + rbv at 16 weeks = 77% SVR
Sof + rbv at 24 weeks = 88% SVR

By comparison:
12 weeks of sof+rbv+PEG = 95%
12 weeks of daclatasvir+rbv+PEG = 96%

June 28 - the new treatment Sofosbuvir and Velpatasvir for GT3 =95%

lporterrn · « **Reply #11 on:** March 17, 2016, 07:08:57 pm »

One more thing mtc - keep in my mind that you are two-thirds of the way through - you have done the lion's share of this treatment!

mtc · « **Reply #12 on:** March 17, 2016, 08:57:08 pm »

I was wrong I'm actually currently at 1000. I was a 1200 for a while but I became extremely anemic so they lowered me to 1000. I've been at 1000 for around maybe two months maybe less

lporterrn · « **Reply #13 on:** March 17, 2016, 10:25:35 pm »

That's a relief! Dose reduction from the correct dose due to anemia doesn't change the odds.

mtc · « **Reply #14 on:** March 18, 2016, 04:32:07 pm »

I just talk to my doctors office and they're trying to tell me that there's no such thing as riba rage. That ribavirin has no side effects other than anemia which we all know it's not true. Even the pamphlet from my pharmacy listed a huge plethora of side effects that could happen.

KimInTheForest · « **Reply #15 on:** March 18, 2016, 04:59:55 pm »

Quote from: mtc on March 18, 2016, 04:32:07 pm

I just talk to my doctors office and they're trying to tell me that there's no such thing as riba rage. That ribavirin has no side effects other than anemia which we all know it's not true. Even the pamphlet from my pharmacy listed a huge plethora of side effects that could happen.

It is very unfortunate and intolerable when doctors and other medical staff pontificate from a position of ignorance (or outright deceit in some cases). We have all been there - especially with Hep C drugs... doctors refusing to accept known and documented side effects of the drugs. You need to stay focused on the question of dose reduction, or perhaps seeing if you can switch to Sovaldi+Daklinza at this late stage. I have not known doctors to change their minds when they are convinced that certain known side effects do not exist. In other words, you will not be able to convince your doctor that riba rage and other emotional/psychological effects of ribavirin are in fact real if he/she does not want to believe it.

kim

AllShookUp · « **Reply #16 on:** March 18, 2016, 06:37:25 pm »

I don't know if you can do this for Genotype 3 but might be worth inquiring about.

I was prescribed Procrit 40,000 U/L to offset anemia via self injection once a week. Weekly CBC blood draws. The goal was to keep Hgb level above 10. Riba was adjusted accordingly about every two weeks. My specialist did not seem overly concerned about maintaining maximum Riba doses. The shots and weekly draws were a drag but I did feel better.

CureSeeker · « **Reply #17 on:** March 18, 2016, 07:49:08 pm »

I wouldn't take the chance.

You have made it THIS far, don't blow the treatment too!

Kim has the right idea, ask about reducing the Ribavirin. It can be nasty stuff, but you are more than half-way there.

Beating the virus is the most important thing!

Once you have finished treatment you will feel and think much better, and maybe the wife will feel free to return to you.

May God bless you and give you the strength to continue treatment. Best wishes!

lporterrn · « **Reply #18 on:** March 18, 2016, 09:36:55 pm »

Oh help us - where do these doctors come from? They give the rest a bad reputation. Trust me folks, there are wonderful docs out there. This just makes me sick.

Lynn K · « **Reply #19 on:** March 18, 2016, 09:50:04 pm »

When I treated in the past with interferon and Riba I also had shots of epotin to help with my ribavirin induced anemia but I have read that they now believe some anemia may be helpful for being cured. My doctor felt dose reduction is the way to go vs. epo shots

From the prescribing information sheet for Ribasphere (ribavirin)

"The most commonly reported adverse reactions were psychiatric reactions, including depression, insomnia, irritability, anxiety, and flu-like symptoms such as fatigue, pyrexia, myalgia, headache and rigors."

Irritability or the official description of what we call "Riba rage" which would not look good on the official documents

I fightis thetitis · « **Reply #20 on:** March 19, 2016, 01:27:41 am »

What everybody else said! Hang in there MTC!
I have contemplated quitting several times too only to later realize if I relapse then all the anxiety, SE, trips to the DR office etc were for nothing.
It seems like it would be worse to have all the SE, personal challenges and then relapse too.
I'm no expert on Riba but I am on powering through bad days.
Don't let Hep C win. Keep us updated.
Hang on Bro!
Greg

mtc · « **Reply #21 on:** March 21, 2016, 12:31:31 am »

Well I decided to drop my riba from 1000 to 800 instead of quoting all together.

Does anyone know the long term effects of these meds?

Lynn K · « **Reply #22 on:** March 21, 2016, 12:50:17 am »

Did your doctor approve of this? Will you be able to take this in a split dose so 400 in the am and 400 in the pm?

As far as I am aware there are no known long term effects except those to an unborn fetus and that those who took ribavirin they need to avoid conceiving a child for a period of time after taking ribavirin to avoid the risk of birth defects.

AussieRosa · « **Reply #23 on:** March 21, 2016, 01:12:21 am »

Mtc, so glad you decided not to quit. You've come too far for that. I really hope the decrease does the trick and you're back to your old self pretty soon. I think the half life of Riba is pretty long. 15 days if my memory serves. So it might take a little while before you notice a difference. It wont be overnight, but it will happen.
Rosa

mtc · « **Reply #24 on:** March 21, 2016, 01:30:45 am »

Thanks guys. This forum really has helped a lot in times of need.

No my dr suggested not to lower it that there weren't side effects but I told them if I didn't lower it I was going to stop all together. My Pharmacist told me it would be fine. She also said that sovaldi only works with riba but the amount of riba is unclear. She said some studies say only a very small amount for riba is needed to work. She said ultimately they don't really know because everything is so new.

beto · « **Reply #25 on:** March 21, 2016, 11:44:35 am »

Any doctor that refuses to listen and belittles, patronizes and disrespects a patients own assessment of how they feel and what is going on with their own body, shouldn't practice. My doctor of 22 years is not like that at all, in fact, the opposite. That is why I have stuck with him. I have had run ins with the arrogant type in the past and took my business elsewhere. My physician listens, takes time and shows me respect. Getting through medical school is a bear and a terrific achievement, but does not guarantee one to be a "healer" or, teach the bedside etiquette and compassion that defines (in my opinion) a fine doctor. My doctor is not on my insurance plan, only the meds and blood-work. I refuse to find one on their "plan". I pay out of pocket for visits. I never wait long and he always gives me plenty of time. We should all be able to chose our physicians, interview them and pass on the ones we don't feel comfortable with.

dan98584 · « **Reply #26 on:** March 23, 2016, 10:03:36 pm »

Mtc...hang in there pal. All downhill now! My hep c specialist is a young woman. I feel she really cares about my health. Has been refreshing to see as most of the time ,doctors often leave me with a feeling of they don't give a rats fart.

mtc · « **Reply #27 on:** March 23, 2016, 10:17:56 pm »

I've only met my heptologist 1 time for 5 minutes. EVER. He doesn't care at all.

Ok so I feel I have to quit the riba at least or just quit it all now. My fibro scan was f0-1. If it doesn't work and cure me in a couple years the advances in meds will do so far advanced.

What if I keep taking sovaldi only. The riba will still be in my system to work with it for at least 2 more weeks.

I just can't do it. I'm sorry guys. If you're able to make it on riba my hat is off to you.

Lynn K · « **Reply #28 on:** March 23, 2016, 11:09:01 pm »

when I stopped taking Riba my HGB was almost back to normal just 10 days later but i do see the half life for riba is 12 days. Sovaldi does not work well by itself that is why you are supposed to take it with ribavirin. I don't expect there are any stats for treating GT 3 for 16 weeks so I guess you will just have to see what happens 12 weeks after you stop all treatment.

Don't beat yourself up about the riba if you cant tolerate it you just can't it hits some harder than others you will for sure not be the first person who discontinued ribavirin.

Good luck hope it works out for the best

Scoutdoy · « **Reply #29 on:** March 24, 2016, 01:28:57 am »

Mtc, you need to do what's best for you. It really sucks that your doctor is treating you this way. Hopefully you will stay undetected and achieve svr. I wonder since the RIBA stays in your system for 12 more days if it would still work with the other med? What the hell, give it a shot, an extra 12 days is an extra 12 days! Good luck to you, I really hope things work out well...

Scout

lporterrn · « **Reply #30 on:** March 24, 2016, 11:12:31 am »

mtc - Sovaldi is never to be taken alone. Any chance you can get a new doc? If you have good medical management, there are a few options to help you through this.

As for long term effects, there is no evidence of any with these. Ribavirin has been around for decades; sofosbuvir, although newer, has been around long enough to say we aren't concerned about long-term effects.

One long-term effect that these meds bring is to be cured. Having hep carries risk of premature death (20 years earlier than non-hep C), multiple other conditions, and all the hep C-related ones. If you stop, then this medication is no longer an option, and if you need more treatment there are some excellent choices coming this summer.

mtc · « **Reply #31 on:** March 24, 2016, 10:38:49 pm »

Do you know if there are withdrawal effects from the meds? My vision is extremely blurry and has been. I've never needed glasses but now I'm using readers to read things. My eye dr said my vision is 20/20

Lynn K · « **Reply #32 on:** March 24, 2016, 11:44:12 pm »

Perhaps you are experiencing the effect of aging eyes called presbyopia you are about the right age for that to start. So you would need reading glasses because of that. My eyes started to change about then

KimInTheForest · « **Reply #33 on:** March 25, 2016, 02:27:26 pm »

Quote from: mtc on March 24, 2016, 10:38:49 pm

Do you know if there are withdrawal effects from the meds? My vision is extremely blurry and has been. I've never needed glasses but now I'm using readers to read things. My eye dr said my vision is 20/20

Mtc - I sent you a private message a couple of days ago. Just wanted to make sure you got it. Some people don't check (or know about) their private messages on the forum. Good luck!

kim

lporterrn · « **Reply #34 on:** March 25, 2016, 02:36:38 pm »

There isn't a withdraw per se, although most people find that getting off ribavirin brings with it a steady improvement - it can take weeks or months, a few find longer, a few shorter. In general, it take 1 to 2 months for red blood cells to get back to normal ranges.

mtc · « **Reply #35 on:** October 21, 2016, 10:58:38 am »

7 months later I'm completely undetectable!!!

Thanks for the support guys.

lporterrn · « **Reply #36 on:** October 21, 2016, 12:58:29 pm »

Wonderful news!!!!!!!!!!!!!

kimharvest · « **Reply #37 on:** October 21, 2016, 04:30:30 pm »

Congrats! Good riddance 3A! Did you end up quitting early or not? How are you feeling now? Are your side effects gone now? Very happy for you! I was forced to quit at 3 1/2 months but made it to 4 months, instead of going 6 months. I tested Not Detected at 1 year after. Sad they didn't care to include my results. They may be over-prescribing the riba. But they will never know; seems they are moving on instead of perfecting. Glad it is behind me. Good health to all!

KimInTheForest · « **Reply #38 on:** October 21, 2016, 04:44:04 pm »

Quote from: mtc on October 21, 2016, 10:58:38 am

7 months later I'm completely undetectable!!!

Fantastic mtc!!! Good on ya!

kim

mtc · « **Reply #39 on:** November 01, 2016, 05:38:07 pm »

Yeah I quit early. I couldn't handle it anymore. Sides slowly went away after like 2-3 months

Quote from: kimharvest on October 21, 2016, 04:30:30 pm

Congrats! Good riddance 3A! Did you end up quitting early or not? How are you feeling now? Are your side effects gone now? Very happy for you! I was forced to quit at 3 1/2 months but made it to 4 months, instead of going 6 months. I tested Not Detected at 1 year after. Sad they didn't care to include my results. They may be over-prescribing the riba. But they will never know; seems they are moving on instead of perfecting. Glad it is behind me. Good health to all!

mtc · « **Reply #40 on:** November 01, 2016, 05:38:45 pm »

And I feel great!

Khb5 · « **Reply #41 on:** November 05, 2016, 07:58:40 pm »

So sorry you are having such issues ..I was so hesitant to start my 3 mo journey ..G3 as you are ..sol+dak ..just finished 7 of 12 wks ..no sides at all ..can you not get that combo ? Maybe I missed why you couldn't get this combo ..if you are closing in on the finish line , keep going !! Good luck

Khb5 · « **Reply #42 on:** November 05, 2016, 07:59:09 pm »

So sorry you are having such issues ..I was so hesitant to start my 3 mo journey ..G3 as you are ..sol+dak ..just finished 7 of 12 wks ..no sides at all ..can you not get that combo ? Maybe I missed why you couldn't get this combo ..if you are closing in on the finish line , keep going !! Good luck

Forums Index

Welcome

Author Topic: Want to stop riba/sovaldi geno 3 (Read 22759 times)