Author Topic: sovaldi and ribavirin (Read 18743 times)

bardee · « **on:** May 08, 2016, 08:02:02 pm »

Finally got my meds and started taking them 2 hrs. ago. This scares me too! Have to go to work tomorrow and hoping for no bad side effects. Does anyone have no side effects?

Lynn K · « **Reply #1 on:** May 08, 2016, 09:03:21 pm »

i did not have any sides while on Sovaldi and Olysio

Sovaldi does not have many sides the issue is Ribavirin.

Some have a rash referred to as RIBA rash. A frequent side is anemia I had some anemia on Harvoni Ribavirin as I had in the past with interferon Ribavirin.

Here is a link to the prescribing information sheet for Ribavirin which includes information on side effects

https://www.merck.com/product/usa/pi_circulars/r/rebetol/rebetol_pi.pdf

Determined · « **Reply #2 on:** May 12, 2016, 12:57:40 am »

I begin my last week on Sovaldi/Ribavirin tomorrow. I really doubt that you will have any immediate side effects. The stuff builds up over the weeks and you may hit some bumps along the way. I had really minor itching the first week, treated with Gold Bond cream. I never had a real rash (keep your sun exposure at a minimum). I felt a bit energized at first, and really fatigued later on. I flirted with a few headaches, but water helped. As everyone will tell you, DRINK more WATER than you can imagine - at least a glass an hour. Pee pale or clear. Ribavirin is mighty so flushing is key. I don't want to fill your head with my experience - EVERYONE IS DIFFERENT - but try not to worry too much about mood issues if they come up. It's the drugs, not your life. Hopefully your side effects will be few, but continue to reach out with questions and concerns. These forums will give you tons of information. Are you GT2?

Determined · « **Reply #3 on:** May 14, 2016, 10:49:20 am »

Hi barred. How did the first week go?

bardee · « **Reply #4 on:** May 14, 2016, 06:37:14 pm »

Hi Determined, It went pretty good! No bad side effects---some blurry vision, tired, no appetite. Not missing work. Yes, I have 2b---don't get labs until 1st week of June-would like them a little sooner. How does anemia manifest itself early on? Thank you!

Lynn K · « **Reply #5 on:** May 14, 2016, 08:05:15 pm »

Anemia for me was some breathlessness like winded on stairs more than usual.

http://www.mayoclinic.org/diseases-conditions/anemia/symptoms-causes/dxc-20183157

Symptoms

Anemia signs and symptoms vary depending on the cause of your anemia. They may include:

Fatigue
Weakness
Pale or yellowish skin
Irregular heartbeats
Shortness of breath
Dizziness or lightheadedness
Chest pain
Cold hands and feet
Headache
At first anemia can be so mild that it goes unnoticed. But symptoms worsen as anemia worsens.

Symptoms vary due to differing causes because ours is due to medicine eating iron rich foods or taking iron supplement is not advised and can for those with cirrhosis be dangerous due to the risk of iron overload.

Determined · « **Reply #6 on:** May 14, 2016, 08:17:55 pm »

Hey bardee and Lynn. That description of anemia looks right me, but I think there are more components to the fatigue. My labs looked ok for anemia at one month, but I was spending plenty of time in bed (yikes, fatigue AND insomnia!?).
I've had too much fatigue for years, but this had been even greater. That said, it was not until week 8, and not until 10 that my doc decided to reduce the rivavirin by 1. And it helped, after about a week. So, in my experience, anemia was not early onset. You know, though, I've read that having anemia on riba is one of the indications that the treatment is working. All so complex. Never the same. Ah yes, I do remember the blurry vision, but it went away early. Again - more water. Keep me posted on your experience and best of luck!

bardee · « **Reply #7 on:** May 26, 2016, 09:35:43 pm »

Got my 2 week labs after starting treatment. My viral load down to 26!!! (was at 18 million 2 mo. ago) Don"t feel good, but nothing real bad as to side effects. Labs at every 4 weeks after this. 9 weeks left! Thanks to all, this forum is great!

KimInTheForest · « **Reply #8 on:** May 26, 2016, 10:03:03 pm »

Quote from: bardee on May 26, 2016, 09:35:43 pm

Got my 2 week labs after starting treatment. My viral load down to 26!!! (was at 18 million 2 mo. ago) Don"t feel good, but nothing real bad as to side effects. Labs at every 4 weeks after this. 9 weeks left! Thanks to all, this forum is great!

Congrats Bardee! That's great to see such a phenomenal drop after just 2 weeks. You will be undetected in no time. Probably are already!

kim

Determined · « **Reply #9 on:** May 26, 2016, 10:37:51 pm »

Wow Bardee. 18 million down to 26! That's gotta be good news. Power up and keep hitting those little rascals for the weeks to come. It's time for a cure.

Ruby Red · « **Reply #10 on:** June 05, 2016, 03:16:38 pm »

Such wonderful news!! Hang in, it will be over in no time and you will be free and clear!! whoohoo

Ruby Red · « **Reply #11 on:** June 05, 2016, 03:17:01 pm »

Such wonderful news!! Hang in, it will be over in no time and you will be free and clear!! whoohoo

Ruby Red · « **Reply #12 on:** June 05, 2016, 03:27:33 pm »

Hi
I will be starting treatment this month, just waiting to see which treatment it will be. They are looking at solvardi/ribavarin or solvardi/delacsivar (spelling)

This will be my second time starting treatment, I did do a 6 month treatment on pegatron which did not work...replication

Anyone that has been on the pegatron therapy knows it was not by any means a cake walk..ugh!!

I will be on treatment for 6 months and my concern is the ribavarin this time around, now that I know better of the side effects.

I would like to hear from anyone who are on either one of these treatments

Wish everyone the absolute best and many blessings

Gaj · « **Reply #13 on:** June 05, 2016, 11:40:46 pm »

Hi Ruby Red,

I recently completed 24 weeks of Sofosbuvir/Daclatasvir which included late addition of 20 weeks Ribavirin (specialist recommendation). The Sof/Daclatasvir combination on its own was much easier and I definitely noticed the difference and the stronger side effects when I added the Riba to the mix. I don't get anaemia from it but did notice the additional fatigue, skin and mood problems. Although none of it was anywhere near as bad as peg/riba that I had previously.

You don't state your genotype but if you have already been told that it will be six months treatment with either then I suspect you are probably genotype 3 in which case the Daclatasvir has been shown to be more effective for tx experienced patients in clinical trials.

For both those reasons, I would recommend that you and your doctor/specialist have a serious discussion regarding the use of Daclatasvir rather than Ribavirin if possible.

Ruby Red · « **Reply #14 on:** June 06, 2016, 01:09:13 am »

I'm geno type 2. I do hope I can avoid the ribavirin altogether as I did become anemic, the skin problems etc. on the peg/r
The waiting game is due to which treatment will be covered by my insurance provider. For some reason there is thinking that the insurance company will not approve the S/D because they are 2 different drug companies and of course the higher cost compared to S/R

I'm new to this site, thought I'd find a group before treatment to acquire information and get feed back of what others are experiencing.

Last time I heard "the only side effects are flu like symptoms"

I don't know what flu makes you lose your hair, lose in weight, what to scratch your flesh off, become anemic , etc etc etc

Thanks for replying

Determined · « **Reply #15 on:** June 06, 2016, 02:32:13 am »

Hi Ruby Red,
First of all, I'm glad you're getting treatment. Sorry you have to go through this twice, but you've got a good shot at curing this.
I'm not going to kid you about my experience with ribavirin because I wish I had been forwarned and well armed. I didn't really have any profound skin or odd health issues other than sun sensitivity and struggles with fatigue.
But my mood was foul. I made a lot of emotional mistakes. I didn't feel bad all of the time, by any means, but I was short tempered and foggy and just had to hang in there for the sake of the cure, even when I didn't give a sh*t about anything. I was tired felt worse than pre-treatment. Loads of water helped and I am still doing all I can to get the gunk out of my body. But, here's the deal; I'm glad I took the gunk. I'm 2 1/2 weeks post treatment and have been undetected since SOT. I feel sooooo much better. I'm getting unstuck. I still have to pace myself, but I'm accomplishing things again and planning fun adventures. I was worried that I would never find my old self, but I was determined to KEEP MOVING.
I don't mean to scare you, because it's not all bad, but I do agree that flu-like is an inadequate description. I think they don't want you to buy into the worst case scenario or to buy into other people's bad experiences. I agree with that, too. Some people do okay, and you may be one of them. You're tough already. I just think it's helpful to know that Riba Rage is real but not personal. I was greatly relieved when my doctor assured me that it's JUST the drugs.
I can't even imagine that the new drugs are as bad as the ones you've already survived. And survival is what we're all about here.
I am GT2 and did 12 weeks of Sovaldi and Ribavirin. I'll be 3 months post treatment in August. I believe I've got this. Once it's behind me, the side effects will fade into nothing.
Glad you are on these forums. People who understand will help you get through the bumps in the road - IF you have them. Let me know how it goes.

dragonslayerinprogress · « **Reply #16 on:** June 07, 2016, 06:09:49 am »

Tomorrow I start my 21st week on Ribavirin and Solvaldi. Genotype 2b. I had a headache for a few days at the start but they pretty much went away. The fatigue was there and unfortunately, I got the flu during the first two weeks of treatment so that didn't help things. Riba rash started at 6 weeks and continues to this day. Edema started in the lower extremities and I am now seeing a little bit of improvement. All in all, it hasn't been too bad for me. I was slightly anemic but not enough to stop. Undetected since the 4th week. I can't believe I have almost been doing treatment for 6 months. You'll be just fine and if problems arise, seems like most have just muddled through it. Good luck~!

Raney · « **Reply #17 on:** June 07, 2016, 02:57:16 pm »

@ Bardee: I am right behind you. I was weirded out when I read the side effects but I am going to give it a go after my colonoscopy, at the end of June.

Thank you for sharing your experience. I too, am concerned about my ability to work a hectic 40 hour week with clients, but...I am going to do my best. I know all are different, but it helps to read posts that don't just have nightmares to share.

Please continue to share good and bad.. I appreciate it. This forum helps me get through my thoughts and helps me remember we are not alone in this.

Determined · « **Reply #18 on:** June 07, 2016, 06:43:04 pm »

Hi DragonSlayerInProgress. Did I get off easy? I have/had GT2a and had only 12 weeks of sovaldi/riba? 21 weeks? Had you had treatment before? You gotta do what you gotta do, I guess, and the main thing is to shuffle on through and get to the other side. I think from there, it all fades into being worth it. My best to you, and to the rest of. There is a lot of new strength to be discovered in this process. Let us know how it all goes.

bardee · « **Reply #19 on:** June 07, 2016, 08:44:57 pm »

Hi Raney, I had a few side effects that did not last long. Dry skin--really rough, blurry vision, nervousness, ---all lasted less than a week. Fatigue the main one and that is after I get home from work. I sit down and don't want to do anything. I do sleep well! Have a lack of appetite but, even though I do not take the meds with food, I have no problems. Have had some problems with constipation and feel pain at times, think it is because of diverticulitis. Back to the "drink lots of water". All in all it is no where near what I was afraid of. So I have not missed any work and do not feel anything really bad. 8 weeks to go!! Good luck!!

Ruby Red · « **Reply #20 on:** June 07, 2016, 09:13:35 pm »

I have been told my treatment will be 24 weeks

I plan to be celebrating come the new year

I thought I'd share this bit of info. At present I am experiencing a very low white blood cell count and platelet count. My RDW is also high. I had a bone marrow test in February to see if all is well in that department and I am happy to say it is. They are thinking that my platelets in particular are in my spleen as they cannot get through my liver properly. I know that sounds odd but according to the Docs it seems reasonable. I will say this will be a concern if ribavirin is part of my up coming treatment as I became anemic the last time. My thoughts however are, "that was then and this is now"!

Anyone experiencing this?

Determined · « **Reply #21 on:** June 10, 2016, 03:28:12 am »

Ruby, Honestly I do no know much about these test results. I do know that in my experience, my whites and platelets moved all over the place shortly before and during treatment. I'm just waiting to let them settle down after normalizing or eradicating the HCV. I was GT2a and took sovaldi and ribavirin for 12 weeks. The riba caused test variations that I just couldn't take too seriously until the dust settles. Now 3 week post treatment, I will get some new results in a week or so and will post what's new. Not much help except to say that things will be in flux for a while so try not to read too much into them if you can. Good that you are staying on top of it though. You can read you better than anyone. Best of luck with your treatment. Please keep us posted. We are all learning.

Gaj · « **Reply #22 on:** June 11, 2016, 09:19:35 pm »

Hi Ruby Red,

Depending on your tests, if you have low platelets and prior treatment with Ribavirin resulted in anaemia then your doctor should be able to make a good case for a Ribavirin free treatment such as those including Daclatasvir.

If you are unsuccessful with the above and you are only able to access treatment that includes Ribavirin then while there is a very good chance that you won't experience any issues, please don't just rely on how you feel as a guide to your progress. Your prior medical history suggests a need for monitoring of your bloods by your doctor as a precaution during treatment.

Determined · « **Reply #23 on:** June 11, 2016, 09:33:21 pm »

Good point, Gaj. "Don't just rely on how you feel as a guide to your progress."

Feelings fade, but the virus doesn't. It needs to have it's ass kicked. That may need to be done passively, waiting for the time to go by. Bad feelings seem urgent. From that place, even my lunch looks bad. But, yes, progress is actually the next step. There's a cure out there!

Ruby Red · « **Reply #24 on:** June 12, 2016, 10:38:09 pm »

Thank all so much for your feed back...much appreciated!
I went for the fiber scan, similar to an ultra sound.....a cake walk compared to the liver biopsy lol

I know we are all going to beat this!! Staying pro active in our recovery is a huge key ( in my opinion) I have started taking Essiac along with my other supplements, getting as healthy and as strong as I can be.

Still waiting to hear which treatment will be approved! Timing...perfect timing!

Raney · « **Reply #25 on:** June 19, 2016, 04:53:16 pm »

RubyRed,

I am also 2b and on 12 weeks Sovaldi / Ribivarin combo. I am on Day 9. So far none of the side effects that I was freaked out about. I mean NONE.

I know it is early in tx for me but I take vit d & b 12 about half hour after I take my S / 3 R in morning. I drink a lot of water and also they have premade half gallon or so of green smoothie drinks in the fresh juice section for about $5. As others have said WATER WATER WATER I too, believe is a big help in keeping the meds moving to flush.

I have started a topic of my 12 week journey that I will post to weekly, unless I have a side effect..then I will document that. Everyone is different but these experiences helped me get started so it's a way for my to pay it forward for the next person looking for insight.

All the best for you and .. Keep us posted!!

Lynn K · « **Reply #26 on:** June 19, 2016, 06:07:16 pm »

Quote from: Ruby Red on June 07, 2016, 09:13:35 pm

I have been told my treatment will be 24 weeks I plan to be celebrating come the new year

I thought I'd share this bit of info. At present I am experiencing a very low white blood cell count and platelet count. My RDW is also high. I had a bone marrow test in February to see if all is well in that department and I am happy to say it is. They are thinking that my platelets in particular are in my spleen as they cannot get through my liver properly. I know that sounds odd but according to the Docs it seems reasonable. I will say this will be a concern if ribavirin is part of my up coming treatment as I became anemic the last time. My thoughts however are, "that was then and this is now"!

Anyone experiencing this?

Hi Ruby

Do you have cirrhosis? Having low platelet counts is a common symptom of cirrhosis. With scaring the liver causes the spleen to enlarge and sequester (hold onto) platelets causing levels to fall below normal.

My platelets have been running around 80 to 90 for several years. Since my beating hep c last year my platelets count has risen to 111 on my last check 44 months post treatment.

Has you doctor said anything about liver cirrhosis? What was your fibroscan result?

I was on Harvoni for 24 weeks and Ribavirin for 15 weeks Ribavirin induced anemia affects you RBC levels (red blood cell count) actually my platelets increased a lot on treatment but I think it was just in comparison because my RBC eventually got down to 9.8 when I was dose reduced from 1200 mg Ribavirin to 1000 mg. After that my RBC count stabilized at 10.0 the lowest my doctor wanted to see.

Best of luck on treatment
Lynn

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Author Topic: sovaldi and ribavirin (Read 18743 times)