Sofosbuvir/Ribavirin Side Effects

[klonny55]

I am waiting for the SOF/RIBA combo therapy to be available and have not been able to find much info on the side effects experienced by those who have done the 12 week treatment. Most of what I find about RIBA sides has to do with it in combination with peginterferon. Anyone out there who has done this combo in trials who could share their experience?

Thanks!

[patra_]

Vix, Welcome to the Forum!  

I believe you are talking about Sofosbuvir, which is called, on the market, Sovaldi.  

Many of us have treated with that.  What is your Genotype and Viral Load?  With more specific information, wyou cang get a better, more specific answer.

ALSO, I suggest you copy your question and go to the top of the Forum, touch the Green 'Ask a Question' and post you question there.  You can add the specifics, then, too.  Your question will be seen by more people and have a better chance of getting your answer.

Many of us have treated with the Sol/Riba (or sofosbuvir and Ribavirin - which has several generic names), you will get lots of information.  This is a wonderful, knowledgeable, caring Forum.

Again, welcome to the Forum.

[vix57]

I am to start the 2 pill regiment in Feb. Of Soposbuvir / Ribavairin. Has anyone had experience with this treatment?

[nan535]

"This oft-repeated statement that treatment "gives the liver a break" is somewhat puzzling.  Perhaps in some cases.  Probably not in many."

The reason why the liver is getting a break is that in most people on the new Sovaldi treatments the virus is undetected by week 4.  A virus that is undetected is not attacking the liver at least while the patient remains undetected.

My husband's experience is proof that the liver does get a break during this treatment. He is post treatment with recurrent Hep C and bile duct complications.  A year and a half post transplant, a liver biopsy showed he already had advanced fibrosis/cirrhosis of the new liver.  Two months later he started treatment (Sovaldi/Ribavirin for 24 weeks). By week 4, his VL was 250 -undetected by week 6. Since then his liver enzymes are in the normal range. The progression of the cirrhosis has been slowed if not stopped.
He has 3 weeks to go before completing treatment.  We don't know if he will reach SVR but we are grateful he had this opportunity for treatment. In these six months, based on the progression of the deterioration in the prior six months before treatment, he probably would have decompensated and lost this new liver.

So yes, treatment does give the liver a break!

Nan

[scottie24]

This oft-repeated statement that treatment "gives the liver a break" is somewhat puzzling.  Perhaps in some cases.  Probably not in many.  

It was shown by a paper presented at the 2012 American Association for the Study of Liver Disease national meeting that those who fail treatment are about six times as likely to develop cirrhosis.  

http://liverlearning.aasld.org/aasld/2012/thelivermeeting/24360/myrna.cozen.nonresponders.to.interferon-based.treatment.of.hcv.exhibit.an.html?history_id=124860

Also, a significant number of folks have inflammatory reactions in the liver (autoimmune hepatitis) during treatment.

[hoping4cure]

Recon, if I remember right the protocol for heading to the doctor pronto on Incievek was if the rash is on 50% of your body and you are right about it spreading to your face. My doctor wasn't too concerned but I went to the emergency room because I went by what the drug manufacture recommended and its a good thing I did. It had spread to around 75% and the thing that knocked it down was a single big shot of cortisone. You can always call Gilead and talk to one of their support nurses 24/7 just to give you some peace of mind. 1-855-7-MYPATH (1-855-769-7284) to speak with a Support Path specialist.

[nan535]

Sorry you are having such a hard time with the itching and rash. I think Hoping4cure has given you some good advice.

This treatment has also been difficult on my husband for other reasons which goes to show that every person is different and medicines impact people in different ways. My husband needs to stay on this treatment 24 weeks because he is geno 1a. He is in week 21 now. Hopefully he will be looking at SVR12 in October. If not, his backup plan will be the new combo pill in the pipeline.

This treatment is great for geno 2 according to the trial info. According to the  HCV guidelines, "across all 3 trials, 201 of 214 (94%) patients with HCV genotype 2 achieved SVR with sofosbuvir plus RBV. "
http://www.hcvguidelines.org/full-report/testing-and-linkage-care-box-summary-recommendations-testing-and-linkage-care

So hang in there. You are in a very good place for getting rid of this virus at long last!

All the best to you as you proceed in treatment.
Nan

[hoping4cure]

When I was on the triple therapy two years ago and had really bad itching my gastro doc sent me to a dermatologist who prescribed Kenalog spray which knocked it right out. I took it as needed because it's real potent stuff. It's an aerosol spray so you want to cover you face and don't breath it in when spraying it on.

I took a .5 half a pill of lorazapam to help with the anxiety also on an as needed basis. In my opinion the anxiety made the itching worse. The gastro doc tried all that your doc has done and it never touched the itching. Staying away from things you are allergic to and drinking lots of water might help especially if you are having the runs.

http://www.drugs.com/pro/kenalog-spray.html

[recon_marine68_73]

Yes! I am undetected as of the last blood work.....thats what the doctor said, but, he also said I have to remain on this  medication for at least 12-16 weeks.  I am replying to you at this moment because the severity of the rashes has kept me up "all night" and even my lower lip is extremely swollen from this treatment. I'm not sure but if I remember correctly, if the side effects reach the face I am suppose to see my doctor right away.....Don't remember....to be honest!! Oh! I also have some kind of mild diahhrea, and insomnia, but they are NOT bad. The rashes are the ones that are driving me crazy, the come out....every night!!  And they don't go away unless I take (on my own doctoring" a heavy amount of a antihistomin (not spelled right...sorry!) Some like Benadril, or any other type of "allergy drug" which so far it's been working after a few houirs of waiting, but, last night I ran out of the Benadryl nd I am really paying for it....it even has my lower lip extremely swollen!! I don't know if should contact the VA Hospital, or, NOT!!  I really would likle to try and stick it out for I've been on "Interferon...twice, even back in 1995 when it was "experimental") then again in approx. 2006 it went away but now its come back! Let me know if you have any opinions....thank you!!  

[recon_marine68_73]

Hi! I am a genotype 2. I've been on the sofosbuvir/ribavarin for for 6 weeks now. No cirrhosis!....just Hep-C from Vietnam. I am having severe side effects, including severe rashes which have gone to even my lip! I get the rash almost every day and its driving me crazy!! I also have insomnia and irritability quite often. The VA Hospital in Tampa Florida speaks very highly of this medication, every if you are a Geno-Type-2....like me, But, let me tell you , at least for me, the side effects are quite severe!!  Every night the rashes come out and keeps me up all night scratching my head of. The cream the doctor gave me doesn't do anything for this rashes do drive me crazy. I'm trying to hang on but Don't think this is a walk in the park Medication. If you need any other answers contact me.

[susan400]

First off, thanks for your service to our country.  With that being said, I would not trust a psychiatrist's opinion on Hep C because that is not his field of specialty. He is trained to treat psychiatric illness and just basic medical doctor issues.  A gastroenterologist or hepatologist would be far more knowledgeable about hepatitis and the diseases of the liver.  Once the virus goes undetected (from the correct Hep C treatment), and it stays that way for rechecks at like 6 mon, 1 year, etc., then you are considered to be cured of Hepatitis C.  With these new drugs, that is becoming more and more possible for many people.  We aren't there yet with 100% cure 100% of the time but with each new advance in the new discoveries of treatments and research, it gets closer all the time.  Susan400

[nan535]

I don't know if your psychiatrist is right or wrong, but I think his opinion is based on prior experience with the old drugs. It's a whole new world now with these new drugs and only time will tell if indeed it is a true cure.

In the meantime, this new treatment is allowing your liver to begin healing itself as best it can depending on your degree of liver damage. Are you "undetetected" for the virus? If so, then the virus is no longer attacking your liver causing damage.

I wish you the best of luck going forward and SVR in the near future.

Nan

[recon_marine68_73]

I am currently on Sofosbuvir and ribavirin for my Hep-C which I believe I got in Vietnam.....long time ago!!  I am having "a lot of rash (itching)" every day!! To me, that's the only side effect so far.....I'm on my 7th week. From the VA Hospital in Tampa, Florida, my doctorsss are confident I will finally get rid of my Hep-C, BUT,  I've had the "Interferon injections twice" got rid of the Hep-C and it always has come back later. My, "Psychiatrist" from the VA Clinic told me in "his opinion"...once you have the virus....you will always have the virus in your body system....forever!!  It will go "dormant" for a while, but, later on it comes back.....that's "His Opinion!" I am having severe rashes with a lot of itching on a regular basis and a little bit of insomnia, but, that's it.....so far!!

[nan535]

Has your labwork shown that you are undetected for the virus? My husband lasted only 5 weeks on triple treatment (with Incivik) because he became severely anemic and needed numerous blood transfusions.

Lucky for him he remained undetected for 8 months until he got his transplant. So he doesn't regret having done it despite the very hard time he had with it.

You may want to try the new treatments when available to you. I hear the side effects are not nearly as bad as the triple treatment.

Best of luck
Nan

[jenniferg65]

HI. I also caught this disease when I was very young in the late 60s early 79s
. I was married to an iv drug user.  The experts say I probably didnt catch it by sexual contact but probably by using his razor/toothbrush. I was diagnosed last year with f4 fibrosis but not cirrhosis genotype 1a. Started triple therapy 10 weeks ago stopped on Monday as couldn't cope with side effects.  The physical side effects I could cope with but nit the daily panic attacks I was getting. Specialist advised me to stop coz I was so.I'll.  Still ggetting the panic attacks.  Am waiting for the new treatment to come to the UK.  Feel like I'm going crazy. I am a 65 year old female. HELP

[Ede23]

I am supposed to start this drug in February. I am woprried abut side effects but sound a lot better than the alternative which is to die...I am not eligible for a liver transplant and was not eligible for interferon due to other problems not related to Hep C.  I wish you luck.  Anyone from the Sacramento, CA?  If use the support and have not found one in this area, although have talked to  a lot of people educating them abut the need to be careful and anyone that is a baby boomer  should get treatment or at least a test to see if they have the disease.  As in my case I got it through sex when I was 19/  This is supposed to be relatively rare in the scope of things.  I am proof that it is not just needles users as well.  Ede23

[MagTX]

Hi mcmaklin,  go to "post a question" and start a new post with your questions. This will help others see your questions and someone may be able to help with answers.

[mcmaklin]

Hi, please tell me, I am genotype 1, don't know if a or b, living in Poland. How's happened that you have access to such Inteferon free treatment? If clinical trials where? And how long you had to wait?

[BoceprevirGal]

  Hi Hector, one question I have been wondering about for a while;  I remember my Dr( Diana Sylvestre) mentioning that for Geno 1a's, that they will STILL be using Interferon, (and Riba) with Sofosbuvir, although geno 2's will do a regimen that you are currently on (Interferon Free)~
    Since you and my Hubs are both on Interferon Free regimens, and both geno 1's, what stats are they using,  which would lead them to believe Interferon is even needed?

[klonny55]

Thanks Hector, I have seen that but was wondering if anyone in the community in a similar situation as mine (genotype 2, treatment naive, non-cirrhotic, asymptomatic) had any first hand experience to share. I guess I will find out when the time comes.

[HectorSF]

Side effects from sofosbuvir and ribavirin treatment are listed in the top line results of the clinical trials.

"In FISSION (Genotype 2/3 treatment-naïve), just 1% of patients receiving 12 weeks of sofosbuvir plus ribavirin discontinued therapy. However, a higher rate — 11% — of patients who received 24 weeks of peginterferon plus ribavirin stopped treatment."

"In the second study, known as the FUSION trial, patients who had not had a response to prior interferon therapy received sofosbuvir and ribavirin for 12 or 16 weeks. The most common adverse events were again headache, fatigue, nausea, and insomnia, but the overall discontinuation rate was low at 1% to 2%.

Hector

[klonny55]

I am a genotype 2b so I am looking at the sofo/riba combo without interferon due in 6 months or so

[Cheesegrater]

What genotype are you?  
If you are type 1 you may want to wait for the sofosbuvir/ gs-5885 (or other NS5A) combo.

[christinatas]

my fam.doc just stated today that to expect side effects probably not as bad as interferon but not to think this as a wonderdrug til all research comes out.he was kind of avoiding my question on this manner today,i had asked @last appt.to study sof/riba combo.he's still very negative towards this treatment cause he said it really gets ppl.'s hopes up.but i am like you-i want to know more.his experience is 12 years at VA hospital workin w/ HCV pts.
i would like to know what research is being done w/ high iron pts.i cannot find nothing at all.

[BoceprevirGal]

  My husband is on a combo which includes Riba and Abbott333, Abt450 and Abt267, along with Ritonivir, and I noticed his HGB has dropped a point, although he is not anemic (less then 10) yet. He is a bit dizzy and sometimes a bit nauseous, and irritable, but the good news is, these treatments are only 12 weeks.