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Side effects??
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Side effects??

I have been on Sovaldi, Olysio and Riboviron for 4 weeks. I am finding that I feel very poorly with a laundry list of noxious symptoms. I feel very alone since my docs said that the side effect profile would be very tolerable. Many years ago I was on interferon and riboviron but could not tolerate the tx. I don't know if it is the roboviron that is causing the side effects. At this point I am pretty much bed-ridden. Is there anyone out there with a similar experience?
21 Comments Post a Comment
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4950316_tn?1394188185
Hi there.
Perhaps if you post your SX, it may help to figure out a little better if it's the Ribavirin etc.,
Unfortunately I have no experience with the Sovladi/Olysio TX, but others will respond.
Hang in there.
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Avatar_m_tn
I just started the Olysio and Sovaldi without the riba.  Have headaches and insomnia but a piece of cake compared to the Interferon/ribavirin. The ribavirin is known to have more problematic side effects. Studies show for most genotypes the SVR rate for this combo isn't too much difference without the Ribavirin.  If it's really getting you down talk to your doctor.  It may be that the Ribavirin could be dropped?   Good luck, hope you get feeling better.  
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7829857_tn?1401196259
Thanks Groupergetter.

My side effects are as follows:

Depression
anxiety/agitation
Worsening of chronic back pain
Nausea
Headache
Insomnia
Low grade fever
High lymphocytes
Loss of appetite

I did the Interferon and Riboviron tx many years ago and had to discontinue due to my inability to tolerate the side effects. I wonder whether Riboviron is responsible for my symptoms.

I just was informed that after 4 weeks of tx my virus has cleared!!!
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Avatar_m_tn
Dealing with this is enough to get anyone depressed. Anxiety/agitation is a known and common se of Riba. (Riba rage)  Headache, insomnia, and nausea are listed side effects of Sovaldi/Olysio and the riba could be contributing to that as well.  Most people when feeling rough, don't have a good appetite.  

When I have headaches I try and remind myself the virus is being killed and the brain fog will be lifted. You are 1/3 of the way there with no viral load..  Congrats, you're doing great.  Most folks that are undie at 4 weeks on this combo get SVR. Call your doctor and talk to him/her.  Don't let this get you down.  You are close to being cured....focus on the positive.  You have much to be Thankful for.  In a few short weeks you can put this behind you. You can do this. :)
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4950316_tn?1394188185
It doesn't matter whether the anxiety/depression/agitation is from the TX, you should see your doctor immediately and get a referral to see someone about this issue.
Your state of mind is always imperative, but more so you need to be calmer to get through treatment. If you have been diagnosed with depression etc before and already on medication, then your doctor can modify your dose as required. If this is new to you, then get an appointment ASAP.
As the above poster said, you are 1/3 the way, and UNdetected. Try to get through this. It's really just a blip of time in your life, and you may succeed finalloy in reaching SVR. A prize many of us want or struggled to get.
There are OTC meds for nausea, as there is also for headaches.
These symptoms are manageable, just confer with your doctor.
And most importantly, just try and relax. eat 5 or 6 small meals a day. Drink Peppermint and Camomile teas.
Good luck.
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7829857_tn?1401196259
Thanks again. It is encouraging to get the clear information about the side effects as the medical community seems to downplay them. These new drugs are a miracle for many of us and I hope that someday this disease which has left me with a stage 4 liver will be eradicated sometime very soon. I also underwent an unsuccessful tx. I am in no way downplaying my gratitude but very much appreciated the feedback so that not only can I hear some facts I many not know but be able to also pass some useful information along to help others. Most of all to be able to be part of a group of people with a common struggle and a common solution. I appreciate your kind words of encouragement.
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7829857_tn?1401196259
Thanks. I agree that no one should suffer from anxiety and depression if It can be treated and these symptoms should always be taken seriously. I myself work in the mental health field and did go so a specialist right away. The meds seem only to work to a degree. I am not a person who struggles with psychiatric symptoms but they are clearly present since I began the meds. I wanted some feedback from others and also maybe provide some comfort to someone out there feeling the same and not knowing why.  Thanks
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Avatar_f_tn
Hi.   You are not alone.     I'm on Solv/Ribv for 12 weeks.     Would say that I have had all of the symptoms that you describe to some degree.    What seems to work for me is distraction.     Everyday get out there and try to find fun doing different things.     Some days just wanna lay in bed but then start to focus on my wide range of side effects.    That's when I get emotional and depressed.     Try to divert these meds and some ways are go to the library, beach, movie, mall, friends family, weekend trips, computer games, gym, walk or hike.     Exercise will short circuit those negative feelings.   Eat small meals and ginger ale really helps for nausea.    If you feel like crying just do it.     Remember when these meds are done you will have a whole new outlook.     In 3 1/2 weeks I will be done and if you stay busy time will fly.   Try to see it as just a few months of your life and try to hang in there.    If you feel it's to much talk to your doc.    They minimize the side effects but know its not easy to tolerate for some people.     Don't be afraid to ask for help.       Kim
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Avatar_m_tn
Sorry to hear your problems with the side effects. Hope they are not as bad as they were when treating with INF Riba. How many weeks did you do tx before stopping?  .

I was looking at the side effects COSMOS study
http://www.natap.org/2013/AASLD/AASLD_24.htm

It appears those who took Sovaldi, Olysio and Ribavirin for 12 weeks had a lower percentage of averse effects for Nausea, Headache, Insomnia and Fatigue than those who took Sovaldi, Olysio without Ribavirin for 12 weeks. Wonder why?

What was your hemoglobin after 4 weeks?
Anemia and rash would be the major averse effects with Ribavirin.

Have you looked at
FULL PRESCRIBING INFORMATION FOR OLYSIO
Established and Other Potentially Significant Drug Interactions
and checked all the drugs listed to see if you are also using any of these.

Are you drinking at least 6 to 8 glasses of water every day 48 to 64 oz?
Are you taking any med for your pain?  Have you discussed your adverse effects with your doctor within the past few days?  Doctor's response?

4 weeks undetected and just under 8 weeks to finish tx. Hang in there you can do it.  
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7829857_tn?1401196259
Thanks so much for pointing out that i am not alone and that someone out there is at least felling somewhat like me from the Sovaldi. So you are not taking Olysio?  Even thought my side effects feel really pervasive, support, suggestions and encouragement make this easier for me. I did go out yesterday and felt much better. I'm going to plan to do more of that. I am grateful to have been cleared at the 4 week mark. I was just feeling that the side effects were getting worse and worse and i was battling discouragement. I am very grateful for your help and admire the way you are handling this!
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Avatar_f_tn
Have you felt bad the whole time on treatment? And no interferon right? just the ribavarin? I am going to doc this morning and will tell him I think I will wait until the rib and inteferon free treatments. Seems like the ribavarin is making the most problems with those treatments.
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7829857_tn?1401196259
Thanks!  I can't really remember how long i stayed in INF Riba before stopping it was 20 years ago and i thing the tx protocol was 6-12mo. i think I stopped somewhere before 3mo and did clear, so I am a responder.

At this time  I am not anemic but have some odd values with a high white count and elevated lymphocytes. Docs say likely from the new meds. At first they talked about the COSMOS study showing no difference in patients that took the Riba, but they changed their minds and told me the "study is indicating", I should remain on all 3 drugs.

Yes, I take pain meds for my back and a few other meds. UCSF, where I am treated (can I say that?), knows everything i take and has gone over everything. I take nothing without their knowledge.I see them infrequently but my NP knows every detail, (poor her). They give little feedback, just encouraging me.

I doubt I drink that much water. I will start that and the other suggestions I've gotten.  You are so right; Clear at 4, 8 to go! I really appreciate the link to the study. I have never read it.

I sincerely appreciate the support!
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Avatar_f_tn
Really glad that you were out and about.     Makes all the difference in the world.    Wanted to tell you that the meds are not like a downward spiral.    What happens is the roller coast effect.       Somedays you don't feel so great and then the next 2 or 3 barely notice.     What I have found is when I consume lots of crap like chocolate, candy, sodas, added sugars feel really crummy.    Would kinda relate this drug to someone with diabetes or hypoglycemia.    Feel out of whack and depressed with to much sugar.    Don't know your liver situation but protein keeps my body very even keel so that the side effects are manageable.    To much protein with cirrhosis is questionable so ask your doc if that's the case.    One other thing I've noticed is to little sleep and feel like I'm in a fog, so rest up without guilt.     Your doing great so hang in there.           Kim
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7829857_tn?1401196259
Kim,
Thanks. My side effects do exactly that same thing. I will have a good day or two and then just feel like a train hit me and nothing seems different. It was hard to motor through those harder days feeling like I should just shake them off but I couldn't. At first I tried to just eat healthy but after a month or so my appetite had just gone away and was losing weight. Now I kind of eat whatever I can, (some sugar ;)), and try to drink a lot of fluids as I have been advised here. My doc did not tell me to limit protein and really try to plan good balanced meals. I will pay more attention to the sugar.

It is so helpful Kim to hear from strong positive people that are struggling with the same thing as me and having great success. At the same time I am thankful that you let me know some of the downside so I feel more prepared and not alone.

After next week, I will be halfway through! That seems more doable than the way I felt in the early weeks, like I was the only patient that had any side effects from Sovaldi,  Olysio and Ribaviron tx.

Let's all get rid of this illness and live virus free!

Andrea
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Avatar_f_tn
Hi Girl.      Just kinda poking around on the iPad and came across hepatitis C C central..      Another support group.     They have day by day accounts of what they are feeling on these meds.     Go to the Sovaldi and ribavirin thread and we thought we had it bad.    The girl that started the dialogue is almost done with treatment and tells you her experiences.       In that same group there are many taking what you are also the olysio.   Not joining but you can still read.    They have some good tips such as eat fat with your pills and no nausea.     Tried it today and felt great.      So WE are not alone with our issues and soon it will be over.     Glad your half way there and will soon have reason to celebrate.       Kim
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7829857_tn?1401196259
Cool Kim,
I will check that right out! I look forward to seeing there's a message in my inbox. Might be silly but I feel like I'm not alone. Gonna try to take the pills with fat. Great tip!

I have a busy day so we'll see how the meds feel about that. LOL.

How far are you into tx?

Have a great weekend.

Andrea :)
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7829857_tn?1401196259
Hi,

Sorry I didn't see this until now. What are your doctors offering you for a treatment regimen? I suppose it might be the Riba that is causing my discomfort but it may also be at least partly the Sivoldi and Olysio. I don't want to discourage you.

I did have a few hard weeks. I want to say around 3-4 weeks seemed the worse. I've gotten some good tips. Drink 48-64 Oz of fluid/day, eat fat with pills to reduce nausea. Try to get outside and stay active as much as you can. For me this helped even when I felt yucky.

I understand the new all Oral tx coming next is being kinda touted as the magic cure. If you can safely wait a bit that might be a wonderful option for you. My liver is at stage four so my docs advised me not to wait any longer.

Have you ever been on tx before. Well, best of luck and please let me know if I can be supportive!
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Avatar_m_tn
Just read your post.  I am on week 5 of Sovaldi, interferon and ribivirin.  While I am not feeling great, I actually thought the side effects would be worse.  I thought I would feel like I had intestinal flu the whole time, feeling real sick.  Instead, I have mild nausea, but not everyday, and fatigue.  I have some problem with depression.  I'm already on Pristique for depression and feel like I should up the dosage while I'm on the hep c therapy, because some days feel pretty bad.   I'm not bedridden, but I am definitely not my usual self and I sleep a lot,  When I'm out trying to run errands, I usually can't wait to get home.  I definitely feel like I shouldn't be out.  My treatment is only for 12 weeks.  I feel like I can hang in there for that amount of time.  I'm a few days from being 1/2 way through.  
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Avatar_m_tn
Forgot I have insomnia and occasional mild headaches too.
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Avatar_m_tn
I am 11 days into solvaldi olysio, I a prety sick.  Major aches and chills, headaches and nausea.  It ***** seems like others are doing well on this combo
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Avatar_m_tn
I am 11 days into solvaldi olysio, I a prety sick.  Major aches and chills, headaches and nausea.  It ***** seems like others are doing well on this combo
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