Life after olysio and sovaldi treatment

[rubysky]

I am very perplexed.  I finished 12 wks of the combo sovàldi and olysio with undetectable still at 12 wks.  However, since stopping I am weak as a newborn, ache all over and cant do anything.  Thinking is even difficult. From what others say I should feel good.  Any ideas? Anyone?  

[Sovaldi13Newbie]

Hi, I just posted a similar question...Believe me, you're not the only one! I just finished treatment last Wed. I feel like withdrawal symptoms...My thoughts? These are strong drugs even if they aren't as strong as older SOC. They are prolly going to mess with your dopamine levels, etc (maybe) particularly in women, as we have more hormonal issues. That's just what I think because I'm in the exact same boat as you. But like Hector said, did you just finish 3 months? or has it been 12 weeks since your stopped treatment? I think if we just keep going we'll feel better, I do seem to feel better than I did yesterday which was a complete wash out. Hope youre feeling better as I type this. Thanks for posting.

[rubysky]

I will clarify my statemènt.  I was viral undetected at
wk 4 and 12wks of treatment.  It has been 3 wks since stopping.  Ànd it seems ĺike all hell broke loose in terms of how I felt.
I was shocked that no one had said anything about post tx reactions especially when they were so profoundly different than during tx.
While I am grateful my hep Dr prescribed this since nothing else has worked or I could take anymore, I feel like im just back to being data and no one wants to hear anything negative so I feel like the odd man out. All im saying is that if others are experiencing this , we should be prepared!
Thank you kinďly for responďing.  

[rubysky]

I am truely grateful for your response.  I was getting really worried.  I clarified my tx dates on hectors post so maybe thàt will help.  It has been 4 wks since ending tx and I àm still unable to do muçh of ànything.  I am disappointed because here I thought I'd feel energy àmd oh so much better.  Just didnt expect this profoumd weakness amd other such symptoms.   Keep me poasted on how u r progressing. And thànks ever so much for posting a response.

[hoping4cure]

Around two days after ending my treatment same thing, really bad muscle and joint pain. I went to my primary doc and he said some sort of withdrawal or inflammation which he tested for and came back fine. Same thing with the gastro doctor, really didn't care to hear about it.

Any weight gain during treatment? I've seen a couple of posts where people have gained 5 pounds and had the munchies. What seems to help the most is diet, exercise, drinking lots of water and keeping regular. I'm hoping that Oyslio combined with Sovaldi doesn't turn out to be the new Inceivek where advance patients start going down hill after treatment.

[mhudnall]

HCV and tx cause nutritional deficiencies and one the hardest hit areas is mitochondria. Glutathione replacement is helpful for energy because new glutathione goes straight to the mitochondria and people sometimes feel energy from that. N acetyl cysteine is the metabolite that converts to glutathione and you can get it at the health food store. Also if you google mitochondrial nutrients, all of those might help. Those are B complex vitamins, CoQ10, Folic acid, alpha lipoic acid, betaine. Also phosphatidylcholine would be good but a little pricey perhaps.

Good luck!

[candyce1953]

That's very interesting
I have an elevated anti mittachonrial  reding, which could possibly be primary Bilary cirrhosis , but I have none of the other blood work markers for it
Just finished tx, S/O For 12 weeks
UD so far
My numbers have gone down but still elevated
Wonder if there are other vitamins I could take to regulate that
The only elevations I have is very high eospihnapls

Any ideas
Thanks CH

[rubysky]

I agree with you about the diet, exercise, ect.  No weight gain, loss actually, as I have had no appetite but that always comes and goes.  I actually got my walk in finally today.  4 wks since ending tx it took for me to be able to walk my walk, maybe 1/2 mile.  Plus, I got out in the garden and worked up a sweat.  I couldn't sweat for the first 2 wks endig tx, and that really bothered me, as we know, it's a good way to flush your system of the chemicals we've been taking. So another day away from the tx.  
May we all have a redsky evening!
rs

[flyinlynn]

Hi
I felt no different before, during, or after treatment maybe had a sore knee during but that's about it.
Currently 6 weeks post treatment and hoping when I do my 12 week post test I am SVR

Good luck all
Lynn

[penn1023]

You have a positive AMA ...do you have a high GGT? Can they see on your biopsy that you have PBC?

[penn1023]

Someone else was on S/O and cleared but it re-ignited their autoimmune disease which was in remission.  

[Sovaldi13Newbie]

I am still  feeling like poop and it will be 2 weeks post treatment tomorrow. (Sovaldi & O) I felt better "on the meds." I'm just hoping this means an eventual SVR cause that combo is doing a number on me! You're not alone...I know I wonder when all these posters say they felt great during treatment, and after! (although I'm glad for them) I wonder about myself. Think it's just withdrawals, serotonin and dopamine levels, etc. But all and all, the treatment was doable, and so is this. It will end and hopefully we will feel better than we have in a long, long time!!!!!

[scottie24]

It is very common for more severe reactions to the treatment drugs to begin after, not during, treatment.  It is likely the immune system run amok.  

Get your thyroid checked.  Drink lots of water.  Eat well.  Rest.  If it continues and you can't work, do not delay in an application for SSDI.

Good luck.  

[herblady4]

Which autoimmune disease did they have? I have hashimotos and i could never get the antibodies down - i assumed it was b/c of the hep c. Now that I am on the S/O study, i have yet to be tested again.

I got just the slightest bit of sun last Saturday, and now I am inflamed from my neck up. My face broke out in a weird rash - sort of looked like little pimples - just rough skin. Just now I had to rub my neck with an ice cube.

I am considered an early responder but I am at 5 1/2 weeks and my 4 wk labs came back as still < 25. That is 3 times in a row. Hopefully at the 8 week mark, i will come back at non detectable. I hope I hope.

And I have a vacation planned right after my last pill at 12 weeks. Going to Belize. I wonder if this is a bad idea. Has anyone heard if the sun sensitivity/skin reaction lingers??

[candyce1953]

Hi Penn
I have a high AMA , last reading went down to 77 from 114, but normal is below 20
And it has been elevated for the last 3 years, before that it was normal when I tested for vertex interferon clearance

My GGT is normal now that my hep c gone ( I think last SVR Post treatment labs Tuesday )

But very hi eospihnapls too

No biopsy 4 years ago before tested positive for AMA, we late stage 2fibrosis stage 3 inflammation

I will definelty get another biopsy before taking medication for PBC to confirm
But billy Rubin normal, alkaline phosphate normal, and those are usually elevated with PBC, so not sure what is up ?
Any ideas?
Thank you
cH

[herblady4]

Hi Candyce - so it sounds like you are saying that your autoimmune levels have been reduced since you got cleared?? I am not sure if you are saying that you are cleared of HCV. And did you do the S/O treatment? Or the interferon?

[Sovaldi13Newbie]

I know your question was not directed at me, but if I could throw my 2 cents. My hepatologist says that yes, many patients are going through withdrawal symptoms even on just the Sovaldi Olysio. I'm almost 2 weeks EOT (end of treatment) and just a few days ago I took a walk in the sun with my dog that wasn't even very long...BAD MOVE on my part. These drugs play out differently on everybody, because no two of us are exactly the same so I'm sure no one could tell you, not even your doctor...EXACTLY how you will react to getting off of them, they can just make educated guesses based on the already collected data they have which to me? Can't me much yet, this drug is so new and data is just now coming in. As to patients talking about symptoms to docs? It's the great doc who even gives this type of information any real attention, to many of them it's just patient hearsay. That's a big reason why I come to these boards so I can get some idea how many patients are responding, etc...Because I don't get a lot of precise, comprehensive information from my doc, I think they are afraid of, perhaps, saying the wrong thing. Getting your hopes up or down, or not wanting to 'psych' patients out.

But this is just my thought. You've already said you've displayed allergic reactions? Whatever they were on your skin, etc. I don't know that I would be going immediately on vacation to a sunny vacation spot right after this treatment. But I'm no expert and I can't predict the future for anyone -- I'm just saying what I would do with your same circumstances, such as I know them. For all I know you'll be fine.

[candyce1953]

I took Sovaldi Olysio for 12 weeks ( cleared 4/8/12 during treatment )
Now
I am post treatment cleared at 4/8 weeks, doing final 12 week next Tuesday, that's the one that counts!

But My thyroid is still hypothyroid even though I finished treatment

My ALT ,AST billy Rubin and GGT all normal though
And My rheumatoid arthritis numbers have gone to normal

As for the AMA going down (114 down to 77) but still highly elevated and my eosinophils  also still highly elevated

I am conducting my own experiment of the elimation of Valium, which I would take maybe 5 mg once or 2x a week
And I wonder since diazepam can induce cholestatic jaundice and thought maybe it could have an effect on my AMA
So we will see
:-))

[rubysky]

Hate to say I'm glad to hear you felt like "poop" too! But it's somehow comforting to know I'm not alone.   Man, it's been a doozy.  I just took my first walk in a month since stopping tx.  That's how bad I have felt.  The only thing changed on my labs has been my platelets falling, but that could just be the cirrhosis, thanks to HVC.  
My mind is just now clearing to where I can think again.  I felt a whole lot better on the tx than coming off.  So go figure.  I guess I will know soon enough what it all means.  Either I sustain a UND status, or I don't is yet to be known.
I find it odd that more people aren't talking about how difficult it is coming off this stuff.  I see that some say, no difference noted really at all.  
Why does it hit us harder than others?  Wish I knew the answers, but it shall become apparent I guess in a couple more months I shall get another PCR.
Thanks again for letting me know you felt this way  too.
I appreciate it!
RS

[rubysky]

I didn't realize it was so common to have such difficulties after tx than during, plus nobody seems to be talking about it much. It makes sense though when you think about it.  If you can think about it.  Brain fog has been really bad too! LOL
All my labs check out, though platelets fell again after having come up during tx, but that may be do to cirrhosis r/t HCV,  
Agree water, exercise, and now adding a grateful attitude to be best for after tx complications.
Thank you for your response
RS

[rubysky]

herblady4's  "two cents" seem like very wise words to me and I agree with everything she said!  Couldn't have said it better myself!
I'm hanging in there too!
Thanks
RS

[rubysky]

Sorry, I got that turned around.  You gave very wise advise and I found it very comforting hearing it, even though I've said it myself to myself and others in the past.
thanks
RS

[rubysky]

Thank you for reminding me of these things.  Medications seem to mess with our bodies on so many levels.  I keep trying to get to ZERO meds, but am down at least to only 1 - 3.  My next goal is to get rid of sleeping meds.  Temazepam..  Problem is, I simply cannot stand to feel horrible and not sleep either.  So, will attack that one when feeling a little better.  Any  suggestions.  I've tried the common herbs for this with no good results.
RS

[penn1023]

That person had psoriatric arthritis.