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Author Topic: Solvadi/Ribavarin Side Effects  (Read 21643 times)

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Offline annabanana

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  • Posts: 16
Solvadi/Ribavarin Side Effects
« on: May 15, 2014, 09:37:41 pm »
Hi Everyone,

I appreciate all the info that has been provided...I called my Dr's office today to discuss the pros/cons of starting treatment now or waiting.  The nurse practitioner told me the side effects (rash, mood swings, foggy brain etc) are from the Interferon not Ribavarin.  Based on what I have read on many of your posts...she is possibly sugar coating the Ribavarin. She said the biggest side effect they see from Ribavarin in anemia...any input? 

She said we don't know what the treatment protocol will be once the other drugs are approved so they could very well have Ribavarin in the mix (which I realize is accurate, but only 12 weeks not 24 weeks for GT3).

Still weighing the pros and cons and would love to hear more from GT3 who are being treated and how things are going...
Genotype 3A          DX 2002        VL 400,000     TX Naïve   AST/ALT Normal    Started Sol/Riba 6/9/14 for 24 weeks   UND 4 wk

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Solvadi/Ribavarin Side Effects
« Reply #1 on: May 15, 2014, 09:43:17 pm »
As much as I hate to take aim at a fellow RN, I believe you are right - although some people don't react as poorly as others. We will know the other protocols by the end of the year. Do you know what stage you liver disease is?
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline annabanana

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  • Posts: 16
Re: Solvadi/Ribavarin Side Effects
« Reply #2 on: May 15, 2014, 10:11:52 pm »
I do have a mildly fatty liver, but the Dr. doesn't feel there is any fibrosis (although no biopsy has been done) and when we discussed treatment he mentioned the new treatments that would be available and didn't seem concerned if I waited.  When I called the office today, I was hoping to speak to him, but the NP called instead...I guess my biggest dilemma is I realize the Sovaldi/Ledipasvir protocol will still require ribavirin for Genotype 3 but TX will be for only 12 weeks.  I have a 10 year old son and can't be a mess for 6 months...
Genotype 3A          DX 2002        VL 400,000     TX Naïve   AST/ALT Normal    Started Sol/Riba 6/9/14 for 24 weeks   UND 4 wk

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Solvadi/Ribavarin Side Effects
« Reply #3 on: May 16, 2014, 09:07:31 pm »
Anna, I wish I had more concrete info to offer, such as anticipated dates, but I believe we will see ribavirin-free treatment for geno 3 by the end of 2015 (or earlier) The unknown is what insurance will cover. I think the daclatasivir with sofosbuvir looks fantastic. http://www.nejm.org/doi/full/10.1056/NEJMoa1306218
Here's some more info:http://www.hcvadvocate.org/hepatitis/factsheets_pdf/GT_2_and_3.pdf#search=%22genotype 3%22
One thing to consider - although ribavirin isn't my favorite drug to take, it was tolerable AND the effects didn't linger or start right away. So 12 weeks of ribavirin - probably only half of that will be really noticeable.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Solvadi/Ribavarin Side Effects
« Reply #4 on: May 16, 2014, 09:25:28 pm »
Anna - Here is another article to read that may help: http://www.hepmag.com/articles/ELECTRON2_SOF_2501_25458.shtml The 100% results looks quite tempting.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline zeena

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  • Posts: 114
Re: Solvadi/Ribavarin Side Effects
« Reply #5 on: June 08, 2014, 07:36:45 pm »
yep. i am here. my load is probably  a bazillion.started feeling the joint pain about 4 months ago. thought it was the polar vortex.just took my first dose of sol and riba this morning.going to outpatient tomorrow.  i love my wine!!! can not drink at all during this treatment.really feel my liver  these days . super scared, yet super proud of me finally taking care of myself. have taken care of husband and family for 20 years now. this forum is a godsend.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Solvadi/Ribavarin Side Effects
« Reply #6 on: June 08, 2014, 11:54:38 pm »
Zeena, fingers crossed for your success. You can do this! Stay in touch.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline zeena

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  • Posts: 114
Re: Solvadi/Ribavarin Side Effects
« Reply #7 on: June 09, 2014, 09:17:29 am »
i think all doctors dealing with hep c and its  medication should refer their patients to this website.fear of the medication, and its debilitating effects. kept me from taking it this last month. both sol and riba sat on my dresser while i would stop at the market after work to get my bottle of wine and sparkling water.i had a friend  die from liver failure 10 years ago. it was sudden, out of nowhere, cant say it was hep c, he was hiv poz  and had been hospitalized a few times for  seizures, and mixing substances which made him a little psychotic.i  still miss him, i am poz too. and have been on meds for 19 years, though i have been poz since 1988.the current med i am on viramune, can create liver failure in women, though my doc says i can tolerate it, having been on it for at least 6 years.this is hard to write about because i have learned to be secretive, for fear of losing my job and scaring people. bythe way, my child who is 21 has always been hiv and hep c free as is my husband.so thanks for the support, and letting me write about this.

Offline annabanana

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  • Posts: 16
Re: Solvadi/Ribavarin Side Effects
« Reply #8 on: June 09, 2014, 01:36:20 pm »
Hi Zeena,
I took my first dose this a.m.  so we can progress together.  I understand how you feel...I will miss my wine too,  ;) but in the long run several months of sacrifice (not the right word) for a lifetime of better health is worth it.  Wishing you lots of luck!
Genotype 3A          DX 2002        VL 400,000     TX Naïve   AST/ALT Normal    Started Sol/Riba 6/9/14 for 24 weeks   UND 4 wk

Offline jberlin

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  • Member
  • Posts: 322
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Solvadi/Ribavarin Side Effects
« Reply #9 on: June 09, 2014, 03:31:45 pm »
Good luck Anna, and Zeena, get going! This treatment is so tolerable and so successful now, so no excuses. 

Do let us know!
jack

Offline zeena

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  • Posts: 114
Re: Solvadi/Ribavarin Side Effects
« Reply #10 on: June 09, 2014, 05:04:13 pm »
thank you jack,
   Is this what a functional family feels like? i LOVE IT !! Anna, at 10 years old, your son has enough energy for both of you and then some.Get healthy now before the teen years come around.. he wont even notice your mild fatigue. I am so jealous of your viral load. You probably have no symptoms. What an advantageous time to begin. your body will soak up the medicine and presto! you are cured!!cheering you on is  definately one of the perks of going through this. Add dandelion  greens and artichokes to your diet if you can. i hope i can say that, they are known to be good foods for the liver.good luck!! we will toast one another in 6 months on our success. zeena

Offline jberlin

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  • Member
  • Posts: 322
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Solvadi/Ribavarin Side Effects
« Reply #11 on: June 09, 2014, 06:24:33 pm »
It takes a village... I went through treatment twice, have worked with many others that have gone through treatment, and anyone that understands the situation, the fear, the side-effects are welcome supporters I believe.  And now it is so much more fun to cheer people on as the treatments get shorter and easier, and the results get better... Less breath holding for sure.  I was in shock for days in 2005 when I was told the 48 weeks of hell I went through had not worked... so yes, I will be a functional brother or father if I have to to get you treated and add you to the cured list!  It will go by so quickly and then you will have a great reason for a glass of wine and a toast!  Cheers!  Let us know, jack

Offline willie g

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  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Solvadi/Ribavarin Side Effects
« Reply #12 on: June 10, 2014, 12:20:53 pm »
hi zeena, Lucinda the moderator has books she has written and she knows all the ins and outs and has went threw a lot herself.i cant imagine wanting to drink after this procedure is over.that's just my opinion .at one time I was a drinker and I know that didn't help.my friend and I use to kid around the next day and say "boy we sure bruised our livers last night" well ,here it is today and he is gone from same thing.I HAD a reformed drinker tell me once when I was hungover,"POISON IN;POISON OUT.  I WANTED TO PUNCH HIM IN THE FACE.TODAY. I believe he was right. native Americans call it THE MIND CHANGER, once again, its just my opinion and if I get Thru  this I hope I never have a drink again. good luck too you and I guess sometimes we can be our own worst enemy. Willie g

Offline zeena

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  • Posts: 114
Re: Solvadi/Ribavarin Side Effects
« Reply #13 on: June 10, 2014, 08:08:05 pm »
well ,the interesting thing about these meds is .my brain is swimming in them. cant remember one thing after another, my doc told me the first week is the hardest. drink more than plenty of water, have soups, 4 liters a day was his advice. aches and pains yes. anna i hope you are doing well, this is a tough med, on the body, and so much is not known about sovaldi.but imagine this. he said the sovaldi shocks the virus. which is why we feel so crappy.and at this momment i  am scheduled for only 12 weeks. so... i will  keeep you informed.

Offline annabanana

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  • Posts: 16
Re: Solvadi/Ribavarin Side Effects
« Reply #14 on: June 10, 2014, 08:44:16 pm »
I am feeling pretty good overall.  I was a bit spacey yesterday, but had a mild fever on Sunday so think I am fighting a cold/flu bug  maybe.  Today I have been a bit bouncing off the walls to be honest, not moody but very energetic...not what I was expecting.  Hopefully it will continue, but I am sure the meds (Riba) hasn't had time to completely be absorbed in my body.  I drank 1 gal of h20 yesterday...and on that road for today.  Cheers!
Genotype 3A          DX 2002        VL 400,000     TX Naïve   AST/ALT Normal    Started Sol/Riba 6/9/14 for 24 weeks   UND 4 wk

Offline zeena

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  • Posts: 114
Re: Solvadi/Ribavarin Side Effects
« Reply #15 on: June 11, 2014, 08:53:20 am »
good to hear!!  i am oddly happy, giggly, yet at this time completely dysfunctional  as an employee, i feel as if i am a 5 year old.i am on temp disability. husband , once a real  disaster, is stepping up, and really taking care of me.i kinda think they have put something fun into solvadi.or...in the  olden days  ,the liver was the organ holding all emotions,like we see the heart today.maybe, as my liver heals, the cranky. irritated me is dissolving. i am exhausted.but really happy this healing is in process.   drive safely!!

Offline annabanana

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  • Posts: 16
Re: Solvadi/Ribavarin Side Effects
« Reply #16 on: June 11, 2014, 11:15:45 am »
giggly here too...watching a show on t.v. last night had me laughing so hard I was crying...I will take it for sure.  don't want the Riba rage to hit because I can be a bit moody regularly...full blown Taurus here  :)
Genotype 3A          DX 2002        VL 400,000     TX Naïve   AST/ALT Normal    Started Sol/Riba 6/9/14 for 24 weeks   UND 4 wk

Offline yag1064

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  • Posts: 58
  • Enjoy the life you have.
Re: Solvadi/Ribavarin Side Effects
« Reply #17 on: July 10, 2014, 05:35:05 pm »
Hello, All,
   
   I am currently in week 10 of the 12wk Inter/ribavir/Solvaldi treatment. My HCV went undetectable after 2 weeks. If you are wondering about side effects I can tell you that Interferon and Ribavarian is not good. Solvaldi, other than being large, gives me no problems, that I know of! So yes I feel tired, ran a temperature of 99.4 for weeks. Sick to my stomach most days. I take lots of naps, and meditate to reduce stress. I eat as well as I can. I do what is can to get through it. I know I have 14 days left on the treatment plan. After that I won't have to take the medicine any more, and I will start to feel better. Oh and as a bonus I don't live with the virus anymore. It is gone. My liver is no longer under attack from it.
   So how important is it to be without the virus? Focus on that. The rest will fall into place. If you decide on treatment, the more you can make it feel natural, the easier it will be. The cure rate of the new drugs is very high ~88%

Best Wishes,

yag1064
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

 


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