Olysio and Savoldi

[rockymoe]

I am on my last week of tx and for last 2 weeks I have been an emotional wreck. Mood swings, emotional sensitivity I cry at the drop of a hat. Depressed and yesterday I had a complete melt down. Wondering how many others have experienced this in last three weeks of treatment. Other than this and fatigue and headaches this treatment has been a cake walk compared to the last 8 treatments.
If I don't SVR this time I don't know what I will do. I am so tired of this fight!

[Dee1956]

I am thinking of you, hoping all is well with you, Bean is so right, it is very unfair for you to have to suffer.
On a brighter side I have seen that people bounce back quicker after finishing tx.  I believe Candyce was one of the people who said she was feeling better pretty quickly.
I am thinking of you, praying for you my friend.
Take care, Dee

[Livelife777]

Hi and congrats on almost finishing treatment.    Had to chime in as far as the last couple of weeks on meds.   I am geno 2, and took the RIBA/Sovd combo for 12 weeks.   Just had my post 4 week blood draw and still UND.    Everyone experiences treatment differently but I can echo your emotional roller coaster near the end.   Have never had issues with depression or exaggerated mood swings before so this was new to me.   Have also had cancer and chemos in the past but never did my mood swings fluctuate as much as these new drugs.    Again, did pretty well up until the last couple of weeks.    Wanted to let you know this so that you would not think your alone with these feelings.   I also would cry for no reason and could care less if my world came to an end.   The best advise I can give you is to try and walk, swim, or any activity that increases your endorphins.   Think that is the key to release the frustration and fear which we have all experienced with liver disease.   Do also know that once done it takes awhile to adjust so be patient and assured that this is only temporary and you will have your life back.  When you look back you will feel so happy and blessed that you hung in there as more of us are becoming Hep C free. It will be all worth it.    ....Kim

[Sovaldi13Newbie]

Firstly, I am not advocating anything to anyone else, I am just sharing my own experience. I am far from a doctor. But I went through chemo therapy for cancer and the way I did it is with the help of a relatively small amount of clonopin (which I titrated off of once I left the hospital, as I said, I wasn't taking a big amount in the first place: I know how addictive benzos can be, particularly in larger amounts.

Well, I'm not saying this is happening to everybody on Sovaldi/Olysio, I've gone to other hep c boards besides this one, additionally, I've spoken to the pharmacist at the place that dispenses my treatment, and she shared with me some of the experiences of people on this combo. For the most part, it would seem to me that MOST people almost slide through this treatment, without very many side effects at all, and get great results, I'm very grateful to be able to be on this treatment to get rid of this dragon once and for all. My last blood tests showed my liver function tests go from an average of 45 -50 -60 (on average) to just 16 and 17 in just two weeks! I'm coming up on my 4 week viral load test next Wed. But I must admit, just for myself (and I'm an odd case, because I'm also on immune suppression, prednisone, cyclosporin) after my first 2 relatively care-free weeks, I got the mood swings something bad. It scared me. (I also suffered from moderate to severe depression in my 20s, (but yoga, guided meditation and a very healthy lifestyle helped ameliorate all that for years and years now, even with the hep.) I started getting really bad mood swings. I'd be fine for some hours, then go into a deep, anxious depression where I could barely focus and felt almost helpless.

I just didn't expect it cause I had read that so many were doing this treatment with nary a side effect. But some people do experience side fx with this treatment, not many, but some. My hepatologist (at a major hospital) she thinks that women get hit harder with side fx with hep and the treatment because of hormonal differences, but that's her theory. Anyway, I thought to myself, I'm going to get through this no matter what it takes, so I took half a .5 clonopin with my treatment, sometimes a whole if the half doesn't do the trick, and I'm much, much better now. I still get the fatigue, sometimes I'm unable to focus very well, brain fog, etc...but not that horrible anxiety and mood swing...it's there, but not that noticeable. I will do this for the rest of my treatment because that's what I need to get me through, like I said, I'm not advocating this for anybody else. And once I finish, I will titrate off of them like I did after I beat the cancer. Just my experience. I wish you smooth sailing and soon you will be SVR!!!! Yay!!!! Youre almost there!!!! I'm so grateful that these less harsh treatments are available to us, and have so much admiration for those that had to take much harsher treatments. The bravery here astounds me daily.

Oh, and just to let you know, I went through cancer and 3 chemo rounds with no pain pills except tylenol, so it's not like I'm that squeamish about handling pain, but psychic pain is to me the worst of all. Thanks for your post!!!!

[frijole]

I am not happy to hear about this.  If anyone deserves to get through this smoothly it is you.  You have paid your dues over and over and over.  I think the depression and fatique you are having now is still much better than the last treatment on Vic.  But still, I don't think it is good.  I haven't read a lot of posts but if Dee says she is reading this a lot from others then the drug companies still need to work on their products.

Hang in there, rockymoe.  I have been thinking a lot about you lately.  I wrote may 18 on my calendar as your end date a long time ago.  After this is over I hope you can take a vacation.

When was your last PCR?  I will be crossing my fingers for you and I support you 100%

bean

[soberguy]

Skeie8  I'd like to hear about your co-pay plan, I'm 2 weeks on olisio/sovaldi , my insurance humana, medicare supplement only allows 28 day at a time, I got a grant for my co-pay but it was pretty much exhausted for first month, I need help with second and third months co-pays, been fighting this for a lot of years but new to this site, any help is much appreciated

[Skeie8]

Hi, I just started the treatment seven days ago
If anyone out there is in need of help with co-pays I have found a great organization which grants you the money within a four minute phone call
I would like to become your friend on here as we are both taking the same meds.... I have tried the other treatments and either failed or was not able to take them they were to toxic.... so this one I'm hoping will work maybe you can give me some helpful hints

[candyce1953]

I hope you are ok with NHL, so you can start treatment !

Just curios did they say if it was related or not related to the hepatitis c?
Xoxo
Candyce

[Dee1956]

Hi there, here are a couple people talking about sx,  I think Candyce is one of them :)

http://www.medhelp.org/posts/Hepatitis-C/Side-effects/show/2119901

[Dee1956]

Hey there, I am so sorry,  I have read of others on here with similar side effects.  One was a person who had just started two weeks before.  Hang in there.  You are so very close! I will search for some and be back
My best to you, Dee

[zarmar]

Hearing your good reports are a ray of sunshine.  I have not started tx yet but expect it will be off-label Sof/Sim.  1a genotype; no prior treatment but co-morbid with Non Hodgkin Lymphoma.  In remission after one course of Rituxan a year ago.  The NHL must not flair since they will not start liver treatment if cancer is active again. PET scan next week. You have motivated me to exercise today -- it does help a lot.

[candyce1953]

You will stay cleared, this is great stuff, you know I had the fatigue and depression swings too last 2-3 weeks were the worst
I am now done with all meds one week today
And although I am not planning to climb a mountain, I am going to an exercise class, and cleaned a closet, and that is more Thani have done in a few years
My pre treatment fatigue was so bad I didn't work out, today I am going to try some mild Pilates
There is light in the end of the tunnel

The meds got out of me in 48 hours, for real
I am still not risking sun with out sun block, but I did go on a short bike ride

If you are on RIBA, May take you a little while longer to get it all out of you

But the difference between last Sunday, and this Sunday is insane
Really hang in there, you are almost done !!!
Xoxoxoxoxoxox CH