Hep C Discussion Forum

Rachsavagesam · Member

RE: Sovaldi/Olysio Side Effects

Fireman Rob · Senior Member

Welcome to this Awesome Forum Rachel,

Thanks again everyone for posting their side effects as I'm in pursuit of this treatment myself. We shall see if the drug companies will help since my insurance company won't cover it.

Best,

-Rob

Tig · Admin

Good ol brain fog!! I forgot how to tie my shoes one day... No kidding! The meds will definitely make things challenging but you'll do just fine. If you have any questions about navigating the forum, just ask!

Tig

Rachsavagesam · Member

Thank you for welcoming me. I am trying to figure out how I go around this forum. Might be brain fog. I think it might be getting worse with the meds....LOL. confuse

Tig · Admin

Hi Rachel,

I'd like to welcome you to our group too! As Wayne mentioned, you're on a top of the line treatment that has proven results. Your chance of SVR has never been better! The reports are indicating positive signs of fibrosis improvement after SVR, so the future is looking better all the time. Before you know it, this will be a memory and your new HCV life will begin. Concentrate on eating well, hydrating very well and following the plan. Keep us informed of your progress and of course, good luck!

Tig

OldenSlow · Senior Member

Hi Rachel and welcome to the forum. Glad you found us and congratulations on getting underway with your treatment. Your meds are the best available and feedback has been overwhelmingly positive. You should do well.

You may be experiencing some initial aches and pains that could subside as your body acclimates to the drugs. Perhaps you have already been counseled to take the Olysio with food, drink lots of water, and be careful with exposure to sunlight. All of this is important. Staying well hydrated will help smooth out headaches and general discomfort. Numerous members, including myself, have had issues with hyper sensitivity to sunlight, so sunscreen and caution is strongly advised.

Others will be along to say hi and help out. Feel free to post an introduction in the New Members section of the forum, if you care to. You can include any relevant details such as genotype, etc. in a signature line by clicking User Details/Signature (in the Profile section).

Again, welcome and best of luck. Keep us posted. wink

wayne

Rachsavagesam · Member

Hello I just joined this group. I am on day 1. Taking sovaldi and olysio combo. Experienced more pain then usual on my right side. I have been living with hvc for over 30 years. Tried other treatment in 2003 which failed. At stage 4 and recently found out I have cirrhosis. Day one, feels like my daily symptoms have mildy increased. That is not bad. Glad I found this group. Rach

Dee Dee · Senior Member

Well said Tornado...

Tornado · Member

I have noticed more side effects as time goes by. I am on week 8, of sovaldi/oylsio. I have increase fatigue, some insomnia, headaches, dry mouth, eye sensitivity, sun sensitivity, and depression. I agree these are easier than older treatments, but that doesn't mean they don't exist. I thought because they told me the symptoms were minimal, that meant no side effects. My thinking was wrong. There are side effects. Having said that I don't want to scare anybody, the side effects are acceptable compared to earlier treatments. But, my fatigue is real, my depression is real, I got a hellish sunburn vacationing in Florida. I have 3 1/2 weeks left, I will survive. All my labs look great. I am confident these meds are working and I will be undetected and cured of hep c. and the meds will work there way out of my system and I will be strong again. But, I shouldn't fool myself, there are side effects. I would recommend these meds to anyone, I think they are miraculous.

i

Dee Dee · Senior Member

Hi Laura,

I've had a few side effects , the main one is being over sensitive At this time. My feelings get hurt way too easy it seems, and slight headaches.. drinking lots of water helps the headaches and having a support system helps with the emotions. I just keep focusing on the end result, being Healthy!! wink I've only been on the treatment for around 4 weeks so I guess I might develop more sx but for now I'm not complaining. Checking in to this forum really helps not feeling like your alone in your fight against this illness. Hang in there ...best wishes on a healthy future.

OldenSlow · Senior Member

Hi Laura,

I've felt some kind of side effect(s) from almost every med I've ever been prescribed. At this point, if a doctor tells me there are no sx, I pretty much just laugh and shake my head. I have had the blurry/dry eyes problem since about week 3 of treatment. I started using an OTC lubricant (Systane Ultra) once or twice a day and it's helped a lot.

Switching to evening dosing sounds like a good plan to help mitigate the other nastiness. We all respond differently to the drugs and must deal with separate realities. Best of luck. Keep us posted. wink

wayne

Tig · Admin

Hi Laura,

I'm sorry you're having these sfx from this combo. You're right, there is a big statement being shared that the sfx with it are almost non-existent. It's good of you to share your experiences and how your doctors are handling them for you. I know all too well about the dry eye syndrome you're experiencing. While I was on the older triples, I believe any treatment like this can and does affect all of your bodily functions, namely mucous secretions in the mouth and eyes. The oral dryness is directly related to tooth disease that is so prevalent with people on treatment. The use of a good oral hydrator, like Biotene mouthwash and a good quality non medicated eye lubricant helps greatly. I imagine your eye dryness only compounded the problem when the dog scratched your eye. When there's no lubrication, even the dry eyelid will scratch. If your opthamologist didn't recommend a dry eye lubricant, I would sure ask if it's okay (likely is just fine). I'm glad you're addressing these sfx and if we can be of any help at all, please let us know! Good luck...

Tig

tiggietig · Member

Hello Mark!

I am on day 19 with Sovaldi/Olysio. I have had headaches, extreme fatigue, blurred vision, depression and mild upset stomach. I know this is NOTHING compared to the interfuron but I thought it was important to talk about side effects. My doctor told me there were no side effects with this new combo so when I started to feel bad I thought I was just being a big baby! I think for depression sake that I need to acknowledge that there are side effects on this new combo and it is not just my imagination. If it is a cure the side effects are definately manageable.

I was having some issues with my sight being a bit blurry and dry eyes. I know that they said the combo therapy can cause eye infections. I have had issues with cornea abrasions and infections in the past so that might have made me more susceptable. My dog scratched my eye the other day while playing. I went to the opthomologist and he said the cornea was scratched again. I am on antibiotic drops for the abrasion and to help prevent infection but the eye is taking much longer to heal that normal. I don't know if this is due to the combo therapy or not.

Today I am going to try to take my medicine in the evening to see if I can sleep through most of the side effects that seem to hit me about 2-3 hours after taking my dose for the day. Does anyone else have any input on the time of day they take their medication and if it is helping with side effect manageability?

Thank you for your support! Always great to know we are not alone!

Tig · Admin

Barnacle,

I can attest to the fact that Ribavirin causes severe photo sensitivity in some people. I've experienced it myself and was surprised how fast I burned. I also got burned on my scalp pretty bad at one time and had little blisters from it. I've also heard that people on Olysio can have real problems too. I've mentioned it several times before but whenever the topic is mentioned, I like to remind people to wear good UV sunglasses in addition to at least SPF 15 sunscreen anytime you're out in the sun, even when it's overcast!

Tig

Barnacle · Senior Member

Dr said be careful in the sun because olysio can cause photo sensitivity. So a few days into Tx I get a sunburn on my head from being out in cloudy overcast weather in Canada. Take it from me, wear sunscreen.

tiggietig · Member

Thank you Dee Dee for suggesting water! It has helped tremendously! Of course I am in the bathroom constantly! :) I have a very stressful job so I did go on medical leave. My side effects have been a little upset stomach, fatigue, headache and trouble focusing. Nothing compared to what it was like on interfuron. This new treatment is definately the best treatment out there for managing. I am on day 15 and won't be getting any blood work done for a couple more weeks but will post when I do. It is great to hear all the positive results on this forum!

God Bless You All!

OldenSlow · Senior Member

Way cool, Gator. 4 days. Think I just experienced some EOT envy. :)

Tig · Admin

Gator Man,

That's great to hear! Only 4 more days? Wow! I remember when you started and had the expected anxiety we all suffered from. Well, you've handled this like a trooper and I'm very confident that you're going to get the SVR that has eluded so many. These new meds and their lack of Sfx are incredible. I also agree that your facial redness is likely sun sensitivity. Do you wear your sun glasses outside? You may see a bit of the raccoon effect if the sun has been bright enough. I know I did! It's a badge of honor for the optically informed! I wish you continued good luck my friend. On to SVR!!

Tig

@Tiggietig, (I like your name, lol!) Listen to these wise Warriors, the time is right and your chances of success have never been better! Good luck....

Gator Man · Senior Member

Just finished day 80 of meds with 4 left. EOT lab check will be Tuesday. I had a head cold and allergies last week and was a little fatigued for two days. At this stage of tx, I don't think the fatigue was a new sx, but probably the result of poor sleep and decongestants.

The only sx that has been noticeable at all over the last 11 weeks is a slight increase in insomnia and a little facial redness, perhaps from sun exposure, but not really sunburn.

My activity level has been consistent throughout. I've maintained the same diet and always drink lots of water (coffee too, even if it is a diuretic).

While everyone's experience will vary to some degree, I've not heard of anyone having major sx effects from Sovaldi; photo and sun sensitivity seem to be the primary consideration with Olysio. In addition to other forum comments, the patients in the non Riba cohort at my clinic apparently are having a similar experience regarding minimal sx.

I'm confident that you will progress well on the new meds tiggietig. You will be amazed how well you'll feel and how easy tx is when your doctor tells you you that you are UND. Good luck!

-- Edited by Gator Man on Friday 28th of March 2014 02:31:38 PM

Dee Dee · Senior Member

tiggietig wrote:
I am on day 2. I was also scared because of the side effects with interfuron and riboviron. I had to quit after 6 weeks because the depression, mouth sores, headaches and insomnia had me suicidal. I suffer from depression anyway so it really intensified it. So far on the new combo therapy of sovaldi and olysio I have had fatigue, dry mouth, headache and trouble focusing. I feel a bit foggy. I don't want to complain because if this is as bad as it gets, I am so grateful! I would just like to know if the side effects decrease over time or if I might see an increase since I am only on day 2.
It is so great to see so many positive people on this site. Thank you for all the help and input.

I believe they will decrease.. Drink lots of water..it helps. Best of luck! We are very blessed to be able to take these meds.. Best wishes tig

Dee Dee · Senior Member

TazKat wrote:
is everyone that is doing the sovaldi & olysio only doing those two drugs or are u guys doing the interferon & riba too? was just curious. be glad when i know when & if i get to do.. dread the interferon shot & that riba crap again.. ugh.. but got to DO what i got TO do!! :)

I'm doing sovaldi and olysio only. I hope you get approved . I almost feel like I'm not taking anything... I actually feel better than when I started.. Feeling better every day. good luck.my first doc appt since starting my treatment is on 4/08/14 ..I'll post my results

tiggietig · Member

I am on day 2. I was also scared because of the side effects with interfuron and riboviron. I had to quit after 6 weeks because the depression, mouth sores, headaches and insomnia had me suicidal. I suffer from depression anyway so it really intensified it. So far on the new combo therapy of sovaldi and olysio I have had fatigue, dry mouth, headache and trouble focusing. I feel a bit foggy. I don't want to complain because if this is as bad as it gets, I am so grateful! I would just like to know if the side effects decrease over time or if I might see an increase since I am only on day 2.

It is so great to see so many positive people on this site. Thank you for all the help and input.

TazKat · Senior Member

is everyone that is doing the sovaldi & olysio only doing those two drugs or are u guys doing the interferon & riba too? was just curious. be glad when i know when & if i get to do.. dread the interferon shot & that riba crap again.. ugh.. but got to DO what i got TO do!! :)

Gator Man · Senior Member

No reason to be embarrassed. Since we are at the beginning of a new wave of HCV treatment, hopefully our observations regarding sx, major or minor, will have some value for others down the road. I should get my test results back early next week and will post the results.

-- Edited by Gator Man on Tuesday 4th of March 2014 09:02:49 PM

Rybronco · Veteran Member

Thanks Gator Man for the update and support. I felt a little embarassed when I reread my post...complaining of mild sides when others are truly struggling.

Your exam will show glowing results I'm sure. Please post if you can.

Gator Man · Senior Member

Rybronco, the side effects seem to be fairly limited in scope and duration from what I have seen so far from my experience and others who have posted. Your side effects should diminish as treatment goes on. You too will be UND in the near future! Well worth the price of admission!

I have my 8 week exam (closer to nine) tomorrow with only 4 weeks of meds left to take. Other than dealing with the refill headaches and the inconvenience of frequent trips to the clinic, I can't complain about anything regarding Tx.

Perhaps new meds in the future will make 12 weeks seem like a long time. Still far better and easier than 48 weeks of Inf and Riba.

Rybronco · Veteran Member

Had a bit of a setback today. The first significant side effect of nausea and fatigue. It lasted for only a few hours today however, it brought me back to my last treatment in my mind and I felt panicky. I managed to work through it and now I'm chuckling to myself about it. Guess I'm a little gunshy after the brutal whooping I took while on Inf and riba.

You guys (and gals) keep me going...nice to know I'm not alone in this struggle.. Plus, everyone is posting undetected undetected undetected!!!

maddie · Senior Member

Had some joint pain in knees first couple of weeks that went away. Mild nause first two days. No sides to really speak of.

darkstar · Senior Member

I definitely had insomnia during the 1st couple of weeks, better now.

Mark Y · Member

Hi Gatorman, no doubt these side effects are a walk in the park compared to the triple therapy I went through, was just curious if others were experiencing the same. I too was on pretty high doses of Prednisone for 18 months and I don't wish that on anyone. Yes, this is a small price to pay if I'm fortunate enough to clear this virus.

Gator Man · Senior Member

Hi Mark Y. My primary side effect appears be insomnia, although I've had this sporadically for a few years so I not sure if it is the combo. A little arthritic creaking in one hand, but also can't blame this specifically on the meds. Exercise may help minimize the side effects and probably increases my appetite.

The only medication that ever caused me significant side effects were the pega/riba tx and long term prednisone therapy with aplastic anemia. Sovaldi/Olysio is like taking a sugar pill by comparison. I'm sorry you have to deal with the side effects, but sure you will agree that it is a small price to pay when we get to SVR!

Mark Y · Member

Hi everybody, I'm on day 17 of the Sovaldi/Olysio combo and experiencing a few side effects. Mainly dry mouth, not much appetite, mild joint and headaches and some insomnia. The side effects are nothing compared to the pega/riba that I went through 10 yrs ago but was curious as to what, if any side effects others are experiencing taking this combo. Hope everybody is doing well and thanks!

Hep C Discussion Forum

Legal Disclaimer: