Olysio & Sovaldi

[jen322]

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

[flyinlynn]

Hi Wayne and welcome

You have added a comment to a thread for last year and the person you commented to hasn't posted since March 2014.

My suggestion is to go to the top right of the page a select the green post a question link that way more people will notice your question and you will get more answers.

Good Luck
Lynn

[wayne353]

I just finished my 83 day of treatment of Sovaldi and Olysio on January 27th. 2015. I had the same symptoms you described but it is now been two weeks since I finished and I still have these symptoms. How long after you stopped take these meds did you have the symptoms. And by the way my hep c is now in the non detectible for three months.  

[JoanLynn]

Hi, good luck to everyone. I am praying for all of you. I was diagnosed with hep c September, 2003. At that time,  I went through one round of the old treatment a combination of interferon and riboverin  and I never went undetected. I tried again in 2008, but the side effects were so bad I couldn't complete therapy. I wanted to add that I began the new treatment for hep c on August 29, 2014. I am on a combination of riboverin, olysio, and sovaldi for three months. I take my first dosage in the morning with a light breakfast or nutribullet shake. My side effects are extremely minimal and a cake walk compared to the old treatment. I've only had some minor fatigue. A little nausea once in a while during the first few weeks and normally in the morning, but usually wear off after a few hours. I've also had a couple headaches, but tolerable. I am very pleased with this treatment. I've had several labs and I had my first four week viral load.  I am happy to report that I went undetected the first four weeks. In fact not just undetected, but zero hep c virus. In other words HEP C FREE! Of course I have to continue the treatment for remainder of the course, but I am overwhelmed with the outcome. If I can be of any assistance let me know. You are all in my thoughts and prayers!
Thanks Lynn

[patra_]

C:  You might want to go to the top of the thread, find the orange button that says Ask a Question, and post you question.

That way you can get the latest, updated info, in responses addressing your question.

Welcome to the Forum and good luck on getting your Tx (treatment) approved.   Pat

[chuck3333]

I have been trying to get these medications and the response I get from Am Better Magnolia Health is that these meds are not FDA approved has anyone had these problems please help

[LurkAndLearn]

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

[Topogigio1]

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.

[Topogigio1]

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.

[nan535]

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

[lanajb]

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.

[mike716]

Good luck with SVR at EOT.

[lanajb]

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.

[mike716]

Doctors? *&%$#@%$&*!!!

[Verdugo]

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.

[rockymoe]

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.

[Hurlco]

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.

[Sovaldi13Newbie]

sorry, (this has to do with focus) that's been affected, and I also have body and joint aches!

[Sovaldi13Newbie]

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.

[Sovaldi13Newbie]

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!

[jackinthebox3]

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.

[Hurlco]

Thanks for the link

[Hurlco]

Thanks

[hrsepwrguy]

"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

[Megan5515]

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?