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Olysio & Sovaldi
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Olysio & Sovaldi

Hello all, I am starting the Olysio and Sovaldi treatment tomorrow for my Hep C. Anyone have any info on it what to expect as I hear there are few sides. What are you eating when you take Olysio as it needs to taken with food.'I am so stoked about the treatment and can't wait until my box gets here tomorrow. I will start as soon as I rip it open!! 40 years and ready to move on.
Look forward to getting to know everyone and learning from you all

thanks
jenne
Tags: hep c
59 Comments Post a Comment
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I take them with my first meal of the day, usually around 11-12. Sides are nausea, insomnia and headache although I have headaches without the two pills. I just got my 4 week results back as UND so at least I know what I am doing is working. Good luck with starting treatment. You will start to feel better before you know it.
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Been on these meds about 7 wks now.  No real problem with sides.  Minor joint aches first couple of weeks, slt nausea first couple days, some increased gas but that's about it. Take meds following breakfast which is usually cereal/banana.  Best of luck to you.  May we both reach SVR.
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Can you tell me, please, how you were able to get a prescription for both Sovaldi and Olysio, and most importantly how you got coverage for them?

Thanks!

Mike
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HI Jene
On my 9th day of Sovaldi and Olysi and as far as side effects-nothing,nada,zilch!  I have not experienced anything at all.Still have my taste buds,my sense of humor,been going to the gym so no lack of energy.No problems at work,not even a headache-just take them with food and stay hydrated for smooth sailing-this sure beats the heck out of all the poison we had to endure before this-don't miss that anemia at all.
                                  Good Luck    Glen
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Hi Jen, hope this goes well for you.  I just started my treatment two days ago.  Have headaches, insomnia and a bit more joint pain.  You may not even experience this.  Being different individuals, the side effects will also differ.  I pray for you, and all with this pernicious disease that we reach SVR.   Be Thankful for every morning.  
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Hi Jen,

I'm getting my box tomorrow too.  I can't wait to start.  From everyone's replies and what I've read, it is way better than the 48 weeks of interferon/ribavirin I did 3 yrs ago.  

sljl
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Hi!
  Can you tell me how you got Sovaldi and Olysio and did insurance pay for it?  
I am in a rush as time is short.  I do not tolerate ribavirin, interferon, and teleprevir. I am stage 4 low platelets,varices and giant spleen.  

Can you tell me what state you are in? I was told insurance's were not approving both protease inhibitors???  Ribavirin and one protease inhibitor for 6 months would be the treatment, with lowered results.  

Already lost a family member to this disease.  HELP.
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Glenn,

How did you get approved for two protease inhibitors?  If possible can you tell me what insurance or doctors you have?  I have cirroshis stage 4, low platelets and varices. They are checking on sovaldi and ribavirin for 6 months.  This treatment is less effective than Sovaldi and Oysio.  Anemia is a problem,as well as heart problems and riba rage.

What say you?
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683231_tn?1392746464
I have the same question how ate people getting approval for this.

I have GT 1a with cirrhosis diagnosed in 2008. Had grade 3 esophageal varicies that I had banded 3 time null responder to interferon with ribavirin.

My hepatologist at a transplant center in Seattle submitted for Sovaldi Olysio off label for me. I have supposed to be excellent insurance through my employer BCBC Express Scripts but received this in the mail for them:

Letter from Express Scripts well actually 2 letters. One for each medicine I have combined them here.

We reviewed your request to obtain Sovaldi ( or Olysio) under your plan. We informed your doctor, we are unable to approve this request for the following reason:

-Sovaldi will be used with Olysio.
(-or Olysio will be used with Sovaldi)

In accordance with your plan provisons for drug coverage, a review has been performed. The review uses the plan's rules and is based on FDA-approved prescribing and safety information, clinical guidelines and uses that are considered reasonable, safe and effective. Details of drug coverage are contained in your plan documents, and the review guidelines are available on written request.  


Any suggestions?

Good luck to every one on the medications SVR to all
Lynn
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  Hi Mike,
   I want to know the exact same thing!  Sovaldi and Olysio how do you get these two drugs.  
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Welcome to the forum.

Olysio is a Protease Inhibitor.

Sofosbuvir (Sovaldi) is NOT a Protease Inhibitor. Sofosbuvir is a Polymerase Inhibitor. It inhibits the RNA polymerase that the Hepatitis C virus uses to replicate its RNA.

The combination of Sofosbuvier and Olysio is an off label combination. Although both drugs are approved by the FDA, they are not yet approved as a combo by the FDA. Doctors are using them together off label.

If you have Cirrhosis, you should be under the care of a Hepatologist at a large medical center/transplant center. Hepatologists are the doctors who should be managing patients with Cirrhosis. Other doctors are not qualified to manage the intricacies and possible complications of people who have Cirrhosis. I see you live in California. There are many competent Hepatologists in California. Any competent Hepatologist will know about the Sofosbuvir and Olysio combination for treating Hepatitis C.

Here is some information on the Cosmos trial (the Sofosbuvir and Olysio (Simeprevir) trial):

Interim results from Cohort 2 of the COSMOS study evaluating Simeprevir and Sofosbuvir in HCV patients with METAVIR scores F3-F4

" In Hepatitis C patients with advanced liver fibrosis or cirrhosis (METAVIR F3 or F4) 12 weeks all oral treatment with simeprevir and sofosbuvir with or without ribavirin led to SVR4 rates of 96% and 100%, respectively· Once-daily simeprevir and sofosbuvir with or without ribavirin was generally safe and well tolerated"

"Medivir AB (OMX: MVIR) today announced interim results from the second Cohort in the ongoing COSMOS study evaluating a once daily combination of simeprevir and sofosbuvir in hard to cure hepatitis C (HCV) patients.

SVR4 results from the 12 week arms of Cohort 2, including treatment naïve or previous null responder HCV patients all with METAVIR score F3-F4 were reported. Treatment for 12 weeks with simeprevir and sofosbuvir, with or without ribavirin, led to SVR4 rates of 96% and 100%, respectively.

Interim results from Cohort 1 of the COSMOS study, which include only prior null responder HCV patients (METAVIR F0-F2) have been reported earlier and demonstrated SVR8 rates of 96% and 93% after 12 weeks treatment simeprevir and sofosbuvir with and without ribavirin, respectively.

"The high SVR rates seen in genotype 1 prior null responders and treatment-naïve patients with advanced liver disease, in the COSMOS study and the safety profile of the combination are highly encouraging. We look forward to the final results of this study in difficult to cure patients." says Charlotte Edenius, EVP Development, Medivir AB."'

http://www.natap.org/2013/HCV/082913_01.htm


If you let us know which large city you live near, people may be able to direct you to specific Hepatologists.
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PS: Your Hepatologist will have to write to the insurance company and explain why you need these two drugs (as opposed to the Sofosbuvir, Riba, Interferon combo).
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Hi Pooh

So I have all that Hepatologist at a transplant center in Seattle. I have Hep C GT 1a with cirrhosis am a  null responder. But still denied by my BCBS express scripts because it is off label any ideas?

Lynn
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Is your Hepatologist going to re-submit an appeal to the insurance company?

Sometimes there is something in the paperwork that they filled out incorrectly or that they forgot to fill out. I had that happen when I treated. They filled out the paperwork incorrectly and denied the remaining 6 months of treatment. My doctor submitted and appeal with the correct information and the insurance company approved the remaining 6 months of Tx.

However, I realize that some insurance companies do not want to pay for these new drugs so they are "going by the book" and are balking at paying for off label  drug combos. Hopefully they will see that is it cheaper in the long run to pay for off label combos than it is to pay for a liver transplant and the life time care  and medical expense that goes with a transplant.
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Yes thay have submitted an appeal for me and hopefully it will be approved this time.

I am just kinda surprised/shocked/ dissapointed they didn't approve me on the first try

Thanks
Lynn
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Good Morning,

I take Olysio and Sovaldi after  I eat in the morning about 9, today is day 6 day has been the worst day for far. You have to take them at the time everyday.
A DR can write a script OFF LABEL which is what is happening.
My sides have been:Mild but enough to keep me home,Tired,Insomnia little shortness of breath but thats gone,irritable,and just a feeling of not feeling well, the tiredness is a different tired it's like your body is fighting off something not like you just don't have energy. I just go take a nap and I'm all better
Remember anyone on these your body is working hard in the beginning so gentle to yourself, I did a pretty aggressive workout day 2 and really paid for it so don't be out there try to do the same things you last week. Theres are FB page where their a lot of us on Savoldi it   Savoldi-sure my hep c
Have a beautiful day
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475555_tn?1303617674
Hi! Are you getting anywhere?

I read in another thread that BC/BS are not approving Sovaldi + Olysio. I think a lot of other insurers are also turning people down. More every day, it seems. I've read conflicting reports about Medicare, too. It's a lottery.

Things are not going to get better until more DAAs (Direct Acting Antivirals) are approved and the prices start to drop, hopefully later this year, when Gilead's Ledipasvir (replacing Olysio) and  BMS's Daclatasvir + Asunaprevir should be approved.

At this webpage you can see a chart showing the anticipated approval dates for the next DAAs:
http://onlinelibrary.wiley.com/doi/10.1111/liv.12408/full

One thing you can do now, if you haven't tried it already, is contact the Sovaldi and Olysio assistance programs:

http://www.gilead.com/responsibility/us-patient-access/support%20path%20for%20sovaldi

http://www.olysio.com/support/financial-assistance

Another option, perhaps, is getting approved for Sovaldi + Ribavirin. Riba doesn't cause as many side effects as Interferon. You might be able to handle it. For that matter, I've read that even Sovaldi alone can cure people.

And don't forget, as bad off as you may feel you are, there are others who are worse off. For example, I don't even have an MD in the States, and no insurance there either.

Whatever you do, don't give up. Keep plugging. Push your MD. If he can't or won't help, go see another. File appeals with your insurer. Make noise.

Mike

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Any news on your appeal?
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Hi Mike

After many phone calls mostly with express scripts I got approved!
I picked up the meds just Sovaldi and Olysio on Thursday. Saw the nurse at my doctors office yesterday (Friday) had a blood draw for viral load and a few assorted other tests CBC, LFT etc.
I am going to start the meds on Wednesday 3/19 and will be done 6/11.

Good luck to everyone
Lynn the Dragon Slayer!
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So happy you got approved.

to All
My guess is that there are a lot of factors in play that may effect whether and when you get insurance approval for Olysio & Sovaldi off label.
-All the newly enrolled via ACA is straining the resources of the companies to respond quickly.
-Lower level prior approval process employees are normally rejecting initial requests.  
-Those who appeal with all the "dot the i's and cross the t's", a justifiably need to treat now with this combination and not another have the best chance of approval. The ability to deal with the "red tape" and demonstrate a strong resolve to get this treatment now. maybe also indicates that you will be a good candidate for complying with and completing this expensive treatment.
-The immediate availability of the drug in sufficient quantities for those starting treatment, the cost of the drug and the amount budgeted for this year are also involved in the decision of who to treat with what drugs and when.  

THE AASLD recommendation along with your doctor's treatment needed now at this time is your best chance for off label approval.  Remember if all appeals fail you and your doctor can apply directly to the drug companies for the meds.

http://hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed
Recommended regimen for HCV genotype 1 PEG/RBV (without an HCV protease inhibitor) nonresponder patients:
Daily sofosbuvir (400 mg) plus simeprevir (150 mg), with or without weight-based RBV (1000 mg [75 kg]) for 12 weeks is recommended for retreatment of HCV genotype 1 infection, regardless of subtype or IFN eligibility
Rating: Class IIa, Level B

This may limit some approvals
The safety and efficacy of simeprevir have not been studied in HCV-infected patients with moderate or severe hepatic impairment (Child-Pugh Class B or C). The uncertain impact of cholestasis and the occasional association of SMV with elevated transaminases create potential for drug accumulation or impaired hepatic function during SMV use. Clinical trials with SMV have been limited to patients with compensated disease who have CTP class A, total bilirubin of 1.5 x ULN or lower, and transaminases 10 x ULN or lower. For these reasons, simeprevir use should be limited to patients with compensated liver disease. Use of simeprevir is not recommended in patients with moderate to severe hepatic impairment. The combination of PEG/RBV is contraindicated in patients with decompensated cirrhosis (moderate or severe hepatic impairment; CTP class B or C).

Remember it's only been a few months since these drugs received FDA approval separately.  New HCV tx is becoming an accelerated changing scene compared to the first 20+ years of treatment history. We all anticipate, wonder and hope for the new announcements and approvals forthcoming in the next 6 months to a couple of years..Hopefully more competition and pressure will drive down cost too.  Like electronics.but faster.  
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So glad to hear you were approved!  I wish you the best during your treatment!
-Mark
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475555_tn?1303617674
Congratulations on the success of your appeal!

M.
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I started treatment 3-29-14 with Sovaldi & Olysio. No noticeable side effects. Before this I had not been treated in any way for Hep C. Was diagnosed with Chronic C Hep in the 1980's from blood transfusion needed due to a car accident. Diagnosed with Cirrhosis in Sept 2013. ITP diagnosed late 2006. Still have low platelets (ITP) count around 48-64. Had spleen removed for ITP. Helped a little, probably not worth the operation and severe complications of spleenectomy. Have esophagal varices diagnosed 2013. Take Nadolol for varices. I have United Healthcare Medicare Advantage plus. My Doctor used a company called Century Specialty Script to help get the scrips approved. I cannot emphasize enough that time is of the essence to begin treatment.

I hope this helps someone and good luck.
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You are extremely fortunate to be able to get these two wonder drugs. They have had great cure rates in trials, even with people with cirrhosis. With a little luck you will be HCV-undetectable soon and your liver can start to heal. I wish you all the luck in the world.

Have a Happy Easter!

Mike
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Mike, thanks so much for the positive energy. I am so grateful that I'm getting this treatment as I was not a candidate for Ribaviron and Interferon. These drugs are nothing short of a miracle. I am praying that others are able to take advantage of this. Your advice on how to deal with the insurance companies is spot on. You have to be your own advocate. My other concern is that a lot of people with Hep C don't know about it. I told a friend who has hep c a few weeks ago about this and no one from his Doctors office even called him. He hadn't heard about the treatment. I assumed he already knew. I have only seen a few small mentions about it in the media. We really need to get the message out there. Take care and God bless.
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contact  the manufactures !!! Johnson and Johnson and Gilead ....They have people that will walk you through...I start tomorrow!!! Best of Luck    ps..Let me know if you need some help,just went through it!!!      
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go directly to the Manufacture of both drugs, There are programs that can help with both drugs, I did it     Johnson and Johnson  and Gilead !!  Good Luck to all
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475555_tn?1303617674
Hi, Nance.

Thanks for the little push. I've gotten so hung up on looking for trials lately that I forgot all about the pharma assistance programs. That's gonna be number two on my list of what to to do when I'm back in the States.

I still think getting into a good trial would be the best solution for me, as then I wouldn't need to look for a hep MD or insurance. But failing that, an appeal to Gilead and J&J comes next.

It's very encouraging to hear from you that you went that route and were successful. You've renewed my hope in that direction. Thanks.

Cheers.

Mike
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Hey guys
I wanted to see how you are feeling, how is the treatment I actually was on 29 people who did 24 weeks of the combo therapy with Ribavirin. It has now been ten months and actually I felt best the first 8 weeks of treatment, sovaldi has a withdrawal feeling coming off of of it that was the hardest part. They told us we had to eat with the dose in the morning, I did develope myalgia on the 13th week. But I am clear and  done but I lost all my energy to my liver healing, I had hep c 42 years I know of. I was only a stage one but had been treated before with interferon and the virus returned, but I could feel it the virus was gone but the drugs left me very depressed.
I am just now feeling  better but I have had 2 superficial vein thrombosis from the treatment too and one DVT.
I am just letting you all know do not be to disappointed if your tired at the end your body needs to heal, I think with that expectation you will not be disappointed at all.
I was most surprised at how much hep c effected my thinking, i unable to read and now I can strange as hell.
I keep trying to shake the depression but I do yoga, swim, ride a bike, and hardly ever need to take a nap anymore. Oh and for a 50 year old guy I had zero sex drive abs was 80 pounds overweight. Now I have lost 60 pounds and have the sex drive of.18 year old they tested my free testosterone and it went from  150 to over 900 from not having hep c just to give you an idea of the way things change.  So all you. Guys have that going for you,
I wish I had not been the 24 week group but then again my entire group cleared . I am really feel bad I told so many people and gave so much hope just to have it crushed. So far the drugs are rated as you have to be really proactive or have stage 4 or greater..
Peace and I hope you all get the wonder drug!
Gilead is just morally ******, all about cash not helpings the world I think it is evil they knew sofasbuvir was the cure when they acquired it. But the suffering mentally not knowing what nornal feels like is the hard part.
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475555_tn?1303617674
This is just an update on my situation, for those who have been following my seven years of tribulations with hepC and my current plight in New York.

I finally found a hep MD in NY who was willing to prescribe Sovaldi + Olysio for me. I had already spoken to the Gilead and Janssen patient assistance programs, both of whom told me I should be eligible (no insurance, advanced fibrosis, etc.) and sent me applications. However, the MD has a specialty pharmacy he works with and is letting them handle the contacts with the assistance programs. I don't know if this is the best way to handle it, but it's what I've got.

So, I'm waiting to hear from them about whether I am approved for asistance. If I'm not, I don't think I will get any more help from either the MD or his specialty pharmacy as they don't seem very interested in spending time with this.

Aside from that, none of the five trial study sites I contacted in February has yet come through with a trial for me. The two who said they would have trials in June have backed off, saying the trials aren't for me. I still have some hopes, though, as they all say there will be new trials starting up soon. Also, tomorrow I have an interview with a hep MD at a big hospital on Long Island that does trials but which requires you to become a patient there first.

So, all things considered, I'm making some kind of progress. I don't have the meds yet, but I feel I know more about how the system works back here in the U.S.

If anyone reads this who got Sovaldi + Olysio through the patient assistance programs, it would be a big help to me if you could tell me how things went for you, especially whether you had to write letters and fight for the meds after the original submissions.

Also, does anyone know if you can re-submit an application for patient assistance once it has been turned down? I'm thinking I might try another MD if things don't work out with the present one and his specialty pharmacy.

Good luck to everyone who's in therapy, and congrats to all who have been through it and cleared the virus.

Cheers!

Mike
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My husband is taking both, his doctor had to do a prior authorization to the insurance company, a letter to tell them why he was prescribing both. It was approved for 2 months and now they are appealing it again for the full 3 months.
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Just started olysio sovaldi combo 9 days ago. Wondering if anyone is experiencing severe joint pain/body aches? I have lupus but started having pain with meds and have never had a lupus flare this bad... Only had 3 good days of 9 so far...
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I just picked up both meds today with a 30$ copay. There are coupons and assistance avaiable. Keep the faith.
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I can't understand why they would okay it for two months instead of three. What excuse did they give?
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Very sorry to hear about your pain, Megan. Are you being treated for it? That doesn't sound like a usual effect of the Tx. Something's wrong. Don't let it get worse before getting help.

Mike
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I was not prescribed Rib since I already have low WBC, RBC, and platelets.  My hepatologist wanted to reduce my risk for infections. This is a legitimate case I have learned that has been accepted by my insurers in PA in approving the off-label combination of Sov/Olysio.  While only 3 weeks in, so far main sides are rash/itching and a little gas.  Had rash before starting tx from the cirrhosis.  Olysio is probably culprit now since rash spread right after taking meds. I take meds with whatever I am having for breakfast - cereal and fruit, smoothie, eggs, almond butter and toast - no problems with anything so far.
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How bad is your rash? What do you take for it or put on it? Has your MD given you anything for it?

I'm kinda worried about that because I have skin problems, too.
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Megan

I felt and still do feel achy joints and muscles (I am one week post EOT)

From all that I can discern from posts here and from research on the intertubes,  I believe that the pain comes from concomitant illnesses that have been exacerbated by the nasty Hep C

In my case it is Peripheral Neuropathy but others who report pain may have fibromyalgia or Lupus or?

I still and hoping that I will achieve SVR and that this pain will subside somewhat after I have the virus is confirmed killed

Hope that is the case for you as well

(Undetected after the end of treatment!)

Rob, I got a nasty rash the last 2 weeks of treatment that my doc thought was due to sun exposure but I had been pretty careful about covering up in the sun. It didn't last long. Treat yourself to a nice, organic soothing lotion and use it in the morning and the evening

Coconut oil in a bath is nice too
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Having just started treatment yesterday with the S&O cocktail, thanks for your post. I wouldn't know an SVR from a Stevie Ray Vaughn jam, so I'd best study up on this shizz. If anyone out there can break things down a little more lay-manese for an old Irish Rocker, I'd be in your gratitude.
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Sustained Viral Load = cured

It's the golden ring on the merry go round

There's lots of resources on the intertubes for you to dive into

Here's a good one to start you out:

   http://www.hcvadvocate.org/library/library.asp

You'll be talking in acronyms like the best of us in no time

Good luck with your treatment!

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Thanks for the input, still feel like sh*t.  So far 13 days in, ~4 decent days... Rhuematology won't touch it unless I'm sure it's not the meds, which I'm not.  Treating with Percocet which works but can't take at work so looks like yet another medical leave for me...  This really *****, praying treatment works this time... 5 the times a charm?
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"I wouldn't know an SVR from a Stevie Ray Vaughn jam, so I'd best study up on this shizz. If anyone out there can break things down a little more lay-manese for an old Irish Rocker, I'd be in your gratitude."

Follow the link

http://www.medhelp.org/health_pages/Hepatitis/Hepatitis-C-Acronyms-Abbreviations/show/3?cid=64

Have a great day
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Thanks
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Thanks for the link
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I have a question about the thrombosis- I have been off treatment for about 4 weeks now... I was on Pegasys, Ribavirin & Sovaldi for 12 weeks and am undetectable. But for a week now I have been having severe burning down my veins and just recently it has traveled to my upper body, arms and legs. My veins are all very pronounced almost vericose like and they are burning. I am only 25 years old and when I asked my doctor she said to just keep an eye on it. There is not too much information when I research the symptons.
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Hi, am on my 8th week of S&O so only 4 more weeks to go. Just wanted to reassure you, while many, or perhaps most people on this treatment do not experience many sides to speak of, there are some of us that do. My hepatologist thinks that perhaps a woman's hormonal complex of issues has something to do with it. Particularly if you had immune problems, but you don't have to have immune problems. I don't want to scare anybody off this, because like I said, particularly on *this* board, many report having hardly any sides at all, but masses of people haven't taken this for a much more comprehensive report to come in, than  just the finite amount of people in study samples. Also, docs don't always report  in patients complaining about side effects for a number of reasons. They want to think that they are finally offering their patients an almost side free treatment which makes them feel better about prescribing it. They must have felt awful having only the old SOC to offer their patients. So when a patient does complain of sides it must be somewhat disappointing to them.  It was to mine. She said I was only one in about 10 people complaining of sides with this, out of all her patient list. But the pharmacist at the pharmacy dealing with this tx told me they have had complaints. And docs don't always report in their patients complaints of sides, because to them it's patient hearsay, and not easy to calibrate like blood markers, etc...It's more nebulous. But yes, there are some of us out here having sides, I've seen more people talking about them on a few other boards. I think it's great that most don't have any to speak of though, and I hope most everyone is in that group, and that we are ALL headed to SVR!

Anyway, headaches and fatigue are the most consistent. I take a half of tylenol when I get them bad, my doc says only a half is okay (for me.) Also it has done something to my stamina. Sleeplessness and anxiety. Personally, I'm glad I work very part time because in my case? I couldn't work full time on this. I know there are plenty who can though. I'm very glad to be taking it though, as I realize it's a walk in the park compared to the old soc, like I said. And only 3 months! I am treatment naive, started off with 3 million viral load, now undetected, am going to get another viral load today in fact. My liver function tests used to hover around 40, 50, 60 now they are both in the teens. Completely normal. This is a great treatment, and there are even better to come!
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Made a mistake up there ^^ My hepatologist said I was only one in 10 patients who are complaining of sides, she is treating many, many more than that. It's a major hospital with a huge facility for liver patients.
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sorry, (this has to do with focus) that's been affected, and I also have body and joint aches!
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Being a newbie to S&O too on just day 4, my already challenged focus due to adult onset ADD is now even more challenging. Anyone else find their sleep-cycle interrupted? Jus woke up from a 12 hour sleep after not getting much the first three days.

Those minor symptoms aside, what really helps is cultivating a spirit of gratitude for all the Lord has brought us through. When some of us sing; "Through many dangers, toils & snares" we know what that means on a gut level.
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I am 5 weeks out, have 6 week VL done 6/27 and will hopefully still be UND. This was my ninth Hep C treatment. Compared to the other treatments this was a cake walk for me. the only sides I had were body fatigue, headache every evening which went away with Alieve sometimes I would have to take a Tramadol as I am also a migraine suffer. I will warn the last 3-4 weeks I was on emotional roller coaster as many I know experienced. Also insomnia which the DR. gave me something for that.
The weirdest thing for me was the body fatigue with no brain fog.
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I completely agree with you assessment of the doctor's dismissal of sides.  Altho I'm on a different combo than you guys (S+R), I got the same response from my hepatologist and case manager at my 4 week appointment.  The prevailing wisdom seems to be that Sovaldi mitigates Ribavirin.  Really?  Come on.  They gave me the same response that you got about a tiny minority of their patients having sides.  BUT both drugs have black box warnings so forgive my skepticism!  I'm lucky to have breezed thru so far, although I do have fatigue, anemia and fleeting irritation.  I'm anticipating the last month to be more difficult and asked them about that -- got more of the same.  (I'm right behind you at 7 and 1/2 weeks in).  

It's interesting that when a doctor tells you that you are abnormal for having a side, it definitely makes you less willing to discuss it further.  Perhaps that is human nature or just me.  But if it's the former, that's gonna be the reason the doctor is not hearing a lot about sides!

There was a really interesting book out a while (cannot remember the name) about talking to your doctor and how they are trained to hear you.  It was illuminating to me at the time and it may help to explain why we are getting this response or lack of response.  Probably should give that a re-read.
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Doctors? *&%$#@%$&*!!!
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Avatar_m_tn
My Sovaldi/Oysio tx meds were paid for by Medicare Part D, and I think some help from the pharmaceutical companies.  I'm older, have had the virus for 46 years, doc thinks I have 4th stage liver disease, due to the thrombocytopenia, edema, and fluid build up in one of my lungs.  All side effects of the liver disease.  He thinks my liver still might be able to repair itself.  Hope the info on how I got coverage helps.  Your liver specialist might have some ideas on how to get.  It's possible that as I was so sick, they covered me.  Who knows......  I have 2 1/2 wks. left of drug tx.  The virus was cleared at 4-5 wks. of tx.
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Good luck with SVR at EOT.
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Avatar_m_tn
Thanks, Mike.  This was the first time I've posted on this site.  Wish I'd known it was here before this.  I live in a small town with pretty much no support.  I have to drive 2 hrs. to my liver specialist (nearest big city). Just heard my digestive specialist has begun treating with the Sovaldi & Olysio meds.  I offered to talk to patients with his Nurse Practitioner who will be doing the training and patient follow-up.  They might want to know what some of the side effects are.  Another thing that is really needed are nutritionists that specialize in diets for HepC patients who have cirrhosis .  Guess we'll catch up in our lil' Podunk town at some point.
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Avatar_f_tn
Just want to say everyone is different and no one (especially doctors) should generalize and think that everyone will experience treatment the same way.

My husband just completed week 18 of 24 (S & R). It has been very tough for the both of us.  I had to figure out what was happening to him when he kept getting these ongoing bouts of HE.  There just isn't enough experience with these new drugs yet.

The real "trials" start when thousands of patients start treatment after they get FDA approval. A couple of years ago the answer was telaprevir and boceprevir (sp?), until lots of patients starting decompensating. Now no one uses those drugs.

But we will keep on trying, because what is the alternative? Hopefully, the day is coming soon when HCV will be a thing of the past.

Keep up the good fight in the meantime.

Nan

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Avatar_m_tn
Hello all,
I started sovaldi/olysio therapy in may, achieved svr by week 4 (great news), have had minor side effects in first 6 weeks, headaches, a bit of fatigue, no photosensitivity at all though.
However in week 6 i began to experience chest pain, shortness of breath, palpitations, and went into clinic for testing and found out I have an irregular heartbeat which i did not have prior to treatment. I was told by my hep c Dr. to go to ER and sent to cardiologist. I stayed on meds for another 3 weeks and continued weekly tests, and my irregular heartbeat persisted, and then my hep c Dr. recommended I stop the meds altogether.

Has anyone had a side effect related to irregular heartbeat or change in heart rate?

Also, hoping i don't relapse due to cutting treatment 3 weeks short.
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Avatar_m_tn
Hello all,
I started sovaldi/olysio therapy in may, achieved svr by week 4 (great news), have had minor side effects in first 6 weeks, headaches, a bit of fatigue, no photosensitivity at all though.
However in week 6 i began to experience chest pain, shortness of breath, palpitations, and went into clinic for testing and found out I have an irregular heartbeat which i did not have prior to treatment. I was told by my hep c Dr. to go to ER and sent to cardiologist. I stayed on meds for another 3 weeks and continued weekly tests, and my irregular heartbeat persisted, and then my hep c Dr. recommended I stop the meds altogether.

Has anyone had a side effect related to irregular heartbeat or change in heart rate?

Also, hoping i don't relapse due to cutting treatment 3 weeks short.
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Avatar_m_tn
Yes!  I have the same side effects as you with the palpitations.  I did have them in the past though but they were only brought on when I had caffeine and then engaged in some sort of exercise in the same day.  So I quit coffee a few months before treatment and they went away altogether even when i exercised.  Then at week two, I noticed the palpitations when I did something light, even climbing the stairs.  My RBC and Hemoglobin are on the low end of the allowable limits but not too bad (4.3 and 13.2 respectively)

Some days were more noticeable than others so I have learned to just slow down and avoid conflict.

At 5 weeks I am undetected.  F* yea!

I am/was GT:1a, no Q80K, , no cirrhosis, 1.6M viral load and am on Solvadi/Olysio/Ribasphere
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