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Life after olysio and sovaldi treatment
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Life after olysio and sovaldi treatment

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?  
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446474_tn?1404424777
Are you saying that you have had no viral load for 12 weeks after stopping treatment?
Or that you had no viral load at week 12 of treatment?

Thanks.
Hector
80 Comments Post a Comment
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446474_tn?1404424777
Are you saying that you have had no viral load for 12 weeks after stopping treatment?
Or that you had no viral load at week 12 of treatment?

Thanks.
Hector
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Avatar_f_tn
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.
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Avatar_f_tn
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.  
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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.
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Avatar_m_tn
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.
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Avatar_m_tn
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!
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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
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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
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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
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Avatar_f_tn
You have a positive AMA ...do you have a high GGT? Can they see on your biopsy that you have PBC?
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Someone else was on S/O and cleared but it re-ignited their autoimmune disease which was in remission.  
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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!!!!!
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Avatar_m_tn
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.  
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Avatar_n_tn
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??
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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
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Avatar_n_tn
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?
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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.
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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
:-))
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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
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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
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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
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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
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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
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That person had psoriatric arthritis.
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You had a positive RF too? AFter I did IFN in the 90's I had a positive AMA RF and other markers. Steadily over the years they came down. They thought I had PBC but it didn't show on 4 biopsies. Now those markers are negative. But, I still have a couple other markers for connective tissue.I would say maybe the IFN ignited the PBC AI markers and just go have a biopsy and be done with it. The cure for PBC is ursodiol.
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If you are on 15 mg. Temazepam you need to reduce slowly.First you get to 10 mg then down.I read some guy online said he opens a capsule and cuts the amount puts them in a gel capsule from the vitamin shop.So he went 10 for a week or two then 5mg then 2.5 etc.
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I take .5 mg of xanax for one week, then .5 mg ativan for one week then .5 mg klonopin 5 mg ambien.  I rotate like that so I won't develop a tolerance.
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Thought I would also chime in on this conversation.   Wasn't on S and O, but S and Ribavirin.   I felt like crap for 2 months at EOT.   Brain fog, neurotransmitters out of whack, horrible fatigue, aches and pains.   What was really bad was that my mind was mixed up.  Couldn't think straight, and became depressed for the 1st time in my life.  Didn't have the energy or willpower to leave my bedroom.  Avoided friends and family.
After 2 months, everything cleared.   Felt like my old self, and continue to feel better everyday.   My RA, is still present but manageable.
Will comment on the platelets Rubysky, they rise during treatment, and then crash back down EOT.  That is typical for everyone.  If, you end up with
SVR12, they start to go up again.  At least that's what my Hepa has said.
I so understand what all of you are going thru.  For me tho, it took a couple of months to shake the aftermath of these pills.  I do hope and feel that you will gradually start to get back to your A game.   Found that lottsa fluids and exercise really helped.  
Hope that is whats happening to most of us is just temporary.  As a cancer survivor, and having done chemo, it took a good year to feel better from that.
We were given extremely strong drugs for 3+ months.  It does take time to bounce back, and I hope that you start to gradually feel better.
Take Care and Be Well
...Kim..
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Thanks so much for your reply.  Very encouraging!  I was really flattened by the tx this time and couldn't believe I felt just so bad.  Guess It's been quite awhile since I've done a tx after the Riba and Interf days.  I forgot.
We shall see what viral response is at 12 wks post tx. Go from there.
thanks again,
RS
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Good point.  I will pick up som caps next time I go to town, which isn't until next week, but really want to start getting off this stuff as I start to feel a little better.
RS
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Well, two weeks after EOT I'm feeling a "bit" better...So yeah, there is life after treatment for me. And I feel the hep gone. Sure hope it doesn't come back, but there we are...hope the same for all of us!
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French or French keyboard?  Totally irrelevant, but I'm studying French and noticed your cedilla and accent marks.  :)
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I'm starting to loose track of the days.  Lets see, EOT was June 27. Now it's July 26th, so close to 4 weeks post tx.  Tues was my worst day ever.  I went to my GP, who I actually once worked with as a Hospice RN, and couldn't even talk.  I'd call it more like  stilted stuttering. I felt so embarrassed, but he has seen me at my best and worst, so whatever. Still, when your brain doesn't wok right it's terribly frustrating.  Add to that a body that can't move, and you pretty much feel like a vegie,  He wanted me to start an antidepressant because I told him I new I couldn't take muh more of feeling so bad since I was having suicidal ideations...So of course, he immediately suggests antidepressants.
However, that is just my marker, so to speak, about how bad "bad" is for me.  I know that when I start that stuff in my head, I need to do some things to investigate is going on.  I do not want to start anything new, expecially a drug that can and does affect the liver until I find out my 3 month PCR.  That's it.  I took the RX and filled it, but will wait to start.  In the mean time I jumped on the things and got my liver MRI done, it was overdue, and had them also do an abd. MRI, since I have an issue there that has to be relooked at. So, I felt like I was making a little progress and being my own medical advocate, which seems to give me some of my power back to continue on. Reading that others have experienced a significant neurotransmitter type shift - probably causing the depression and suicidal ideations helped too.
Since then the brain fog seems to be lifting a bit each day, my confusion seems less, and I took a walk every morning since Tues.(Dr. day).  It doesn't last all day, and when that happens, I pick up a book or try to clean something just to put myself into auto pilot mode.  
The point is, I'm having good days this week, and even though it took a month with no sunshine or ruby skies to boost my mental or physical outlook, the times when I can't move or think are less than before and filled with thoughts of "this too shall pass"., because I have visited the sun and gazed on the evening red skies once again.
Still here and  still taking one day at a time!
Have a good day all!
RS
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I hope you feel better soon, I finished Sovaldi and Olysio may 8th
I was extremely fatigued during treatment, in bed most of the time
But two weeks after
I was hiking, and having allot more energy
Now almost 3 months out I feel great
Having stomach issues but unrelated
And had a little aches but think that's also unrelated
It will get better
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Avatar_f_tn
I just wanted to let you know I got a lot out of your post, sometimes I think, what's up...am I really, really sick or something? And it's just been 2 weeks EOT S & O....It's good to know there is life after this, we just have to be patient and not freak out...because yes, I'm still feeling pretty bad, felt better on the meds. Going for a blood test tomorrow just to make sure everything is on the up and up. Oh, and anytime youre on benzos (like me, small dose) you have to titer down very, very carefully, by quarters if you can. One does not one to get off those things full on, will nilly. Just my take. Same with prednisone. Thanks for this thread, Rubysky!
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Hi, have you ever tried ginger for your stomach issues (if youre just talking about nausea or stomach ache) It's great! I take Solaray's Ginger Trips wafers. They have a lot of ginger in them and the tummy troubles and/or nausea go away in 15 min! thanks for your post!
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Avatar_m_tn
"irritable bowel" stomach issues?
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Maybe doing tests, possible peptic ulcer :-((
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Neither, LOL.  bad typing!
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You are right about tittering off.  I generally just quit and go through a few days of no sleep, but if a slow decrease helps, I'm all for it.  I only started it for the treatment, since I always get slammed with insomnia (as I was), and tried to prepare.  I don't like taking ambien at all.  there is something in it that disagrees with my body, though both are "benzo" derivatives I think.  Sometimes I can't believe I was an RN once upon a time.  Seems like it was far off.
Thanks for you supportive replies.  I really appreciate it!
RS
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I had heard a while back that it takes up to 6 mon. for the meds to clear out of your system and for things to settle back down.  Susan400
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Some afterthoughts. Happy that some of my post EOT comments helped you guys as I believe I was the 1st treater on these boards with the new Sovoldi drug, other then the clinical trial gang and therefore had no input what to expect post EOT.  Started Tx Jan 15th. This is why I want to be there for all
of you.
Well, it's been almost 4 months since finishing Tx and SVR12 EOT,  UND.
Guess I'm cured.    I feel GREAT!
Never felt so good in my life.  Again, it took at least 2 months or more after EOT.  Even tho I'm at my 4 month post, everyday it gets better, and I don't know how it can get better then this so PLEASE, hang in there.  I even have early cirrhosis, and feel like that's gone or at least has regenerated.  Have no symptoms of it at all.
Please know that even if the virus does returned don't lose hope. The next time will be the one,  as they have finally figured out how to shut down the sneaky lousy mutating virus.
We are soooooo lucky to be able to finally be cured and that has never been accomplished, ever.  Would totally get the let down if you dont reach UND as I would too, but in the end we will all be cured.
Keep the faith and get thru Tx and its aftermath as best you can.  Try to stay positive and know in the end this Virus will soon lose its grip, and the devastation it has caused, in all of our lives.
xoxo.   Kim





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Avatar_m_tn
Did you ever have the sensitivity to light or have skin rashes? Trying to decide whether to start or wait for new treatment.
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I feel a bit like the whirlwind of sensational information surrounding solvaldi has gotten a little on the deceptive side. When. I was told i would treat. With sovaldi the physician assistant referred to it as a "cure."  I left there feeling as thought it was an automatic thing and I would have minimal or no side effects. Don't get me wrong, at this point it has been a walk in the park. But as time has gone on the symptoms are creeping up.
When i looked at the clinical trials for sovaldi and ribivirin treatment. I found the success rate for my particular situation is 60 percent.  That. Is still high compared to older drugs but 90 percent rates were being freely floated.  I think it is probably important when we post about symptoms and treatment outcomes that we state our particulars. From my reading it appears people with cirrhosis have greater side effects.

Me:
Age: 55
Sex: male
Disease state Genotype 3, stage 4 cirrhosis, viral 10 mil prior to treatment
Current treatment: sovaldi + ribivirin 24 weeks. Day 34
Prior treatment: interferon + ribivirin 48 weeks, interferon + ribivirin 72 weeks

Mike
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The light sensitivity that you are referring to is ONLY, for people being treated with Olysio.  Not sure of the protocol that has been suggested for you.  
I was on Sovaldi / Ribavirin and live in Fla so at the beach daily without sun related issues or rashes.
As far as treating now or later, there are considerations to consider.  The most important one being if you are F3 or higher, I would def think about treating now.  Other key factors include geno type, prior treater, cirrhotic or non, ect.  Should you have any form of liver disease your best bet would be to see a hepatologist.  They can look at all your paticular variables and help you decipher your best shot at SVR.  This is not a cookie cutter situation as what is good for one, is not always right for another.   Fortunately, we now have options which were not available before.
If I were in your shoes, I would seek the advice of the specialist and get a plan of action into place.  I do feel if you decide to wait to the fall to treat, you may have to wait in line as thousands will also be anxious to get their meds also.   You really don't want to delay so make your appts now, and get clearence with insurance so your ready the day these pills hit the shelves.
Good luck and keep us posted.
....Kim
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The point is, I'm having good days this week, and even though it took a month with no sunshine or ruby skies to boost my mental or physical outlook, the times when I can't move or think are less than before and filled with thoughts of "this too shall pass"., because I have visited the sun and gazed on the evening red skies once again.
------------
I love that :)
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Avatar_m_tn
same here, 4 weeks stopped, feelling weak, nausious, and minor headaches.
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I love reading this thread, it gives me so much hope. I guess the feeling better one day, worse the next is what is so exasperating. But I do think I'm getting marginally better, Monday I'll go for my 4 week viral load test. I may be wrong, but I feel this creep is gone. (Realizing it might come back, but at least there is more hope around the corner, what else to do?) I do know there is light at the end of this tunnel, and not a train like having that HCV. We have to keep going on, right? Nothing else to do. Just watching a lot of documentaries and reading books again, trying to get my brain oiled up again. I wish you all the best, thanks so much for posting your results and experiences.
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Monday is my 4 wk VL test as well. Lets both stay positive. I know that UD at 4 wks is not some kind of indicator of eventual SVR but it sure would be a nice morale booster.
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I sure agree with you on this one.  Some of us perhaps are more desperate for a cure than others pending how much damage the virus has already done on our livers and how hard the previous txs were on our bodies.  My mental capabilities really suffered with the interferon and "Ribavarin treatment, and I don't feel I've ever fully come back.  almost an allergic response to it.
And then along came the O & S treatment being touted as a real cure and they rush to market to make money off of us, who are rather desperate.  But low and behold, there are non-responders to this too!
I feel I should have been a bit slower to jump on the band wagon and done better research.  But I was just so tired of the fight.  It was killing me, literally!  I may or may not be one of the lucky ones this time.  I'll know at my 12 wk post treatment PCR.  Until then, I'm focusing on enjoying the respite of the moment.  That is what we must do.  
In my early days of nursing, I worked on the AIDS unit, when many who had that were dying d/t lack of treatment capabilities.  I haven't forgotton what they went through and there are many similarities of what we have had to go through to find a cure for Hep C.  
May you enjoy the evening Red Skies my friend and fellow warrior.
RS
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I am anxiously awaiting to hear how your 12 week post tx PCR was!  Hope you will share.  My thoughts and prayers are with you!
RS
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Thanks so much for your encouraging posts!  I hope many who read this will know that there is hope finally, if not this round, the next one.Even though I am starting to feel stronger each day and am able to stay on a strengthening routine physically, I am still waiting for the brain fog to clear and to be able to think again.  Sometimes I even worry that I am permanently brain damaged by all this. Lord, I hope not.  A functioning body without a fully functioning brain doesn't seem like a good trade off.  However, you gotta have a little faith, and I do.  
RS
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Hi Rubysky - I hope you see this message. I am also on the S/O combo - 3 1/2 weeks to go.

PLATELETS:
prior to tx = 113
week 1 = 146
week 2 = 185
week 4 = 127!! what gives?!

Are your platelets continuing to drop???
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Can I ask which autoimmune disease? I have Hashimotos, which I was hoping I could get under control (bring down the antibodies) following successful treatment with O/S.
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After a few weeks of reflection, I have decided to cancel my vacation - push it out 2 months....sigh....but this irritation is nothing to mess with. It is on the face, neck especially and the v-part of the chest, on the upper forearms and the tops of the hands. I assume it is due to sun sensitivity, although nights can be irritating, as the rest of my body is cold and my face and neck are on fire and itching.

The doc looked at it, didn't ask me how it felt, and said no big deal. I certainly don't want to make anything of it as they might want to take me off the tx. Well, they can't now...cause I have my last bottles of pills and the aint gonna pry them out of my hands now!! ;)
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THANKS Livelife777!!

I REALLY NEEDED TO HEAR THIS TODAY!!! :)
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Yup cured, after 43 years
Took Sovaldi olysio worked
Allot of fatigue during treatment

but after no more meds, took two weeks then lots of energy
God luck

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It's so hard to predict how each of us handle Tx as we are all unique individuals with different physio make-ups.  I read an article someone posted regarding "Host Factors" and its somewhat compelling.  It relates to the differences we all have, and our chances of reaching a cure.  The factors included weight, sex, prior treater, viral load, cirrhotic or non, race, and 1or 2 more.  Based on these factors it gives you %s of clearing based on either Sovd\Riba or with Peg/Sovd/Riba.   The #s were also almost identicle with Oyslio.  It says if you have for example zero or 1 factor, your chances of clearing are 100%, and so forth, so on, down the list.  You can type in the search bar
Host Factors should you care to read more.
I bring this up because I believe alot of our side effects we experience relate to our own host factors.  I do know that females have a harder time as do cirrhotics.  This is why some people breeze right thru, while others struggle and don't know why.  Unfortunately even our Drs don't have the answers since these meds are so new.  It's kinda up to us to help the people we are treating with, and others just getting started.  All of us will react differently so we should not be worried if one feels great while another may not.  I can
assure you that in time, these meds will leave your system and your new life will begin.  Try not to worry if you fail to get better when others do, as we all have different Host Factors, which alter our recovery time.   I'm using generalization, as this is not a perfect science, but an easy way to understand the complexities of our own individual reactions.
Wanted to mention platelets again as it keeps coming up.  When we start Tx our Platelets go up, and when Tx is over they go back to where they were before Tx began.  If you achieve SVR12, they will gradually start to rise over time if you continue to stay healthy.
Many of you are on the verge of finding out your Hep C status,  and if you've become cured.  I do believe you know intuitively whether the virus is gone or not.  I remember knowing I was def OK before being told, and others that didn't make it saying they knew they weren't prior to the reveal.  Unfortunately they were right.
On a personal note, after Tx I was so mentally not with it I ended a 2+ year relationship with a wonderful man.  Would not have done so had my mind been clear thinking.   My emotional vision was so clouded by these meds post Tx, and I made bad decisions.  It took months to get out of the fog, and we are now back together....smiling....  Please know that each of us will recover in our own time and space, and your new life will then begin.  No doubt!
Be well
...Kim


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Hello...sorry to hear of your pain issues...but I spoke of the same sort of issues early...maybe about May or June....2014.I completed my S/O treatment April 24,2014.I was still undetected at 8 weeks and my next appointment with my gastro doc is October,2014 with a abdomen ultrasound to be taken in September,2014.I already had back and neck pain issues...but never experienced the high level of pain....along with digestive problems...as profound as when I finished treatment.I have never taken a lot of pain pills,because my body never seemed to tolerate it.But trying to take pain medication after treatment became impossible and I was experiencing things like nightmares and incontinence.I stopped the pain pills but still remained it an immense amount of pain...couldn't do much of anything from day to day.With that being said...I also take a  thyroid pill for an underactive thyroid...daily.Thyroid pills should be taken on an empty stomach and without interaction with other medicines.In other words,don't take other medicines with your thyroid pill...it cancels it out.Check your thyroid and keep yourself hydrated...Since I started paying more attention to my thyroid my pain has decreased.And,stay hydrated.I added a multi-vitamin for women over 50...I am 63.Hope you feel better...I do.
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ago, the blood draw was at the 2 month point - probably went undetectable some< Back to Communitywhere around 4 weeks….and oh, my God, this is the greatest feeling EVER! It actually took a few days to sink in. But wow!

Maybe it is just knowing that, but I only have 9 more days in this 3-month trial of O/S and it has been pretty easy overall, now that I look at it in perspective. My platelets did go up at first, then down, but now they are back up again, almost as high as in the beginning. I do take really good care of myself. Frankly, I have been having more energy lately. I have more stamina. More of me left at the end of the day!!!!

Yes, I have been very photo sensitive, but it did not kick in until week 6, which was when they then said "oh yes, that is about right" Hmmmm…they never said anything about week 6.

Anyway, for anyone having problems with photosensitivity - like myself - I would highly recommend accupuncture. It was a kind of miracle. I went from constantly icing down my chest and neck, to my skin aging overnight and actually peeling from the heat, to taking antihistamines - the highest dose overnight to trying not to scratch cause, oh brother you will be sorry! To ahhhhhh…… accupuncture good…. ;)
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This is a very depressing thread for those of us who have not yet begun therapy but have committed to S+O. If I had known that the sides were so bad I would not have applied for S+O. Likewise re the after-effects.

I'm really beginning to wonder if the treatment isn't worse than the disease. I[m a symptom-less F3, and I sure don't want to end up virus-free but physically and mentally destroyed by therapy.

It looks like Olysio is the main culprit. However, I wouldn't put it past both companies to have under-reported side effects. But the bigger danger is lasting after-effects. Maybe S+O shouldn't have been approved so fast. Abbvie triple-therapy had no side-effects in Phase III trials and 100% SVR rates, but hasn't been approved yet. I wonder why?

Mike

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Probably because they asked for approval later? They were not ready to submit. I agree with Livelife777 the reason why some have a harder time than others is because some have multiple conditions other than hep c anxiety, depression, RA, immune system issues I would be surprised if having those did not make therapy harder to handle.

I personally find hope in these pages. How many of us have been cured so far that had absolutely no hope before. How many of us had ticking time bombs in our bodies waiting to take us out that are now quiet.

Hopefully soon these pages will only be a memory of what it was like before there was a cure for hepatitis c and we can all go forward with our lives not waiting for the next symptom or liver disease. bleeding from esophageal varicies, massively swollen abdomen making it difficult to breath and eat and hoping you don't develop an infection in the aceitic fluid, or becoming confused and forgetting everything due to hepatic encephalopathy and falling into a coma.

Thankfully if we cure those fears will be forgotten. Where there is life there is hope

Good luck everyone
Lynn
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If you think long and hard each and everyone of us wants this ugly beast that dwells in us to be eradicated! Gone so we no longer have to have a communicable virus hanging on our backs. We research and research but end up treating with the strong drugs that our doctors suggest. We're all just trying our best to live and not let this virus do any more damage. When we agree to take these drugs we also agree to the not so good side affects that come along with the treatment. I guess what I'm trying to say, is we really don't have a lot of options. I am 1a, tx before with interferon and RIBA. Three months in had to stop. I was a slow responder. Now today, it's my 80th. , day tx with Sovaldi/Olysio. I have RA and this hasn't been fun with the autoimmune issues but doable. I knew the risk going in and DO NOT like what these drugs are doing to me but understand why I agreed to do them. I just want this beast gone! I see others post on here and it makes me cry that they are having transplants, had transplants, fighting cancer, and just purely fighting just to stay alive. I pray for their souls just to have the strength to keep fighting. I haven't had to miss any work. Some days I come home and just drop. I thank God for this community of such awesome people that we all can go and ask anything. I just felt like posting this. In the end of it all, I pray we all made the correct decisions for each and everyone. Sticking together is one of the best things we can do. Holding someone's hand along the way can't hurt. God Bless each and Everyone!
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I think GoGG said it all, but I just wanted to remind you of a few things. One, this thread was started because so FEW people were talking about sides with S &O that Rubysky decided to talk about her experiences, and I'm very glad she did, because it gave those of us who do have worse sides (which, let's face it, is actually pretty rare...MOST people on this regimen report very little sides, comparatively speaking.) I have some idea because I go to a few boards looking for posters who report about harsher sides, so I can get a bead on whether I'm doing pretty poorly - and if I'm the only one? So I think you're going to get a pretty skewed viewpoint if you want to know what the general population of treaters is experiencing...We are not the general population of treaters (for the most part) We are the relatively few people who have harsher sides than most and we're just sharing our own experiences. Please don't take away our experiences emblematic of what EVERYBODY who treats with this regimen will experience. As mentioned in this thread...my own hepatologist who is the head of the Liver Dept at supposedly one of the 10 best hospitals in the US (according to Forbes Mag) A patient perhaps will do worse with symptoms of Hep c and the treatments depending on gender (she says women do report more symptoms and sides to treatments, (perhaps because of hormonal and other factors)

Remember, the liver is the general of the hormone processes. Many of us are in menopause, and many of us have other conditions, immune and otherwise. All this might have an impact on the general picture. I myself have underwent a bone-marrow transplant due to leukemia a few years ago, of course I might have a harder time with the hep and the treatment. Then there is amount of liver disease (my liver is mostly okay but my doc told me I was prolly being so symptomatic of the hep itself because I was one of the patients where the virus itself was wreaking havoc on my immune system, if not my liver itself, that happens with some people.

That's why it was incumbent on me to get rid of this, and soon I will know if it worked, and, like I said...I'm only a stage 1 liver fibrosis, barely nothing. But I couldn't take this disease anymore, I had enough! I feel like it's gone...that weird type of cloud of depression is gone. The water retention, a whole host of symptoms that I know I can at least attribute some of them to the Hep. But no, not all people manifest symptoms.

One thing I have noticed though, a lot of people who SVR report that they haven't felt this good in years! It can be subtle how the dragon takes one over. So please realize that a lot of people hardly report any symptoms on this regiment, or they are negligible. The older SOC treatments I remember from people talking about them, they were brutal to a lot of people. And it took almost 6 months to a year to get over that stuff, so we're lucky if we're just complaining about a few months.  Most people say they feel better in a few weeks! So I just wanted to talk about some perspective here. I'm very glad for this thread as I said, it's been a life saver for me. Thanks!
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one more thing (sorry) my age. I bet I could fly through this treatment if I was 45 or younger. I'm 60 though.
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Well said Sovaldi13Newbie and GoGG

I would much rather face side effects than the alternatives of decompensated liver disease.

And if you go to a place where people can voice their concerns and problems that is what you will find there.

Wishing you both long healthy lives and all our comrades in the fight
Lynn

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I'm new to this community and finished the S/O treatment in May. The side effects that have bothered me (& hubby) the most was the change of my temperament (grouchy & emotional) and mental slowness. I was always fast in the word games I play online and now not so much. I am not as unbearable as I was but I hope my quick thinking returns. Has anyone here experienced one or both of these symptoms? Please tell me it's temporary!
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I have been for foggy for quite a while, but my mental alacrity seems to be slowly coming back as I get further and further away from treatment (S & O) --if that's any help. I was foggy from the hep, as well. Now I'm getting much more clarity. Just my own experience.
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Hello , I did 12 weeks of the solvaldi olysio treatment too , I cleared the virus in the first month actually the  first two weeks , everything looked good . BUT AFTER I STOPPED IT CAME BACK !  I was stunned to say the least . The Dr. said I was the only one whom it came back on so far ? I am 1a have had hep C for 43 years . i NOW HAVE THIS AWFULL RASH all over my stomache neck elbows groin area and back near my waist thias is awfull got meds ointment went away for a week came back. When I was on the treatment I had no appetite and EXTREME INSOMNIA It was awfull I wasnt sleeping at all one week I was up for three days with no sleep . I also had mouth sores and one awfull night I felt like my chest was getting smashed and I could take deep breaths VERY SCARRY I almost stopped the treatment . antway now I have to wait for october again to try solvaldi and ledipesfer i belive its a one pill treatment I hope this rash goes away this is nuts . again I guess I have a "mutated form of hep c "
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Hi Alexandra

Welcome to the forum.

Sorry to hear you did not make SVR you are not alone unfortunately others also failed with the same treatment.

I am week 11 post treatment today next week I will do my 12 week post treatment viral load test I have not tested since I stopped on 6/10 so I have no idea of my status. I am (or hopefully was) GT 1a, cirrhosis DX in Jan 2008, MELD 7, 3 time TX non responder.

Sovaldi ledipasvir is rumored to be approved on October 10th but will take a month or 2 more before patients will be able to get the meds by prescription. I also have heard it will be a single pill and the results have been great for genotype 1.

You did not say what is your genotype or if you have treated before and with what treatment or the condition of your liver for example if you have cirrhosis. Those are all factors in what treatment is the best for you and your own individual likelyhood of success.

If I can make a suggestion if you have a question for the group, instead of adding a comment to an existing thread, click the orange button at the top right of the page that says "Post a Question" that way more people will see your question and respond to your concerns.

good luck
Lynn
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How long have you been off the meds? I reached SVR-12 this month, 6 months will be in Nov.  I am cirrhotic, 1b. And you?
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I HAVE NEVER HAD SO MUCH SUPPORT AND POSITIVE FEEDBACK AS I HAVE ON THIS WEBSITE. ITS BEEN SO NICE TO BE ABLE TO SHARE MY CONCERNS, FEARS AND QUESTIONS NO MATTER HOW SILLY I THOT THEY SOUNDED AND REC'D SUCH SUPPORT FROM YOU ALL. I FINALLY FEEL LIKE I HAVE FOUND A GROUP OF PEOPLE WHO ARE WARRIORS JUST AS I AM AND WE UNFORTUNATELY HAVE THE SAME ENEMY...HCV...WE WILL BEAT THIS, EVERYONE OF US WILL ATTAIN SVR BECAUSE WE ARE SURVIVORS...EVEN THO I HAVN'T SPOKEN TO ALL OF YOU I  WISH GOOD HEALTH AND A LONG SVR
DEBBIE
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As afraid as I am of meds an sides I too rather deal with the sides and avoid liver decompensation.
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Hi there and just checking in.  I do see that the misty dark cloud is starting to wither and fade.  Happy that you are starting to see blue sky's.  it's only really a matter of time.
Continue to keep the faith
....Kim
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Couldn't agree more with your 'cure' percentages.  I'm 3A like you.  Finished treatment 7/15.  After two weeks viral load back up so the 90percent cure I think is over optimistic. The only difference I feel now is I don't have the rashes or itching.  That and my hair still continues to fall out six weeks after.
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I just had a thought (amazing I'm able to think?), how many people on here are on an anti-depressant med during treatment and then, when they stopped the treatment, they went off their anti-depressant??  If one is on an anti-depressant during treatment, they need to be careful coming off of them, when the Hep C treatment stops.  Many antidepressants can't be stopped suddenly and have to actually be 'weaned' off of them.  I didn't use antidepressants on most of my Hep treatments including this one.  Bascially, because many years ago when I was 30 yrs old and having had a hysterectomy, I went through a deep depression period of time and was on a lot of different types of antidepressants. My Christian psychiatrist would start me on one A/D and I'd be on it awhile to see if it would work and then, when it wasn't and/or I was having side effects, I'd be weaned off of that one and a new one was tried.  I did several different ones and this went on for months. I finally, decided to give up on anti-depressant meds and try something different.  For me that was talk therapy and exercise. But, I say this to you all about the anti-D's because I know on at lot of them, there are warnings or recommendations about not stopping them suddenly.  I'm thinking that if one was to stop their Hep C meds and their antidepressant at the same time, that would be really bad.  I just wanted to throw that out there for anybody getting ready to be at the end of their treatment and thinking that they could just stop their anti-D's...  better check with your doctor first on that.  Susan400
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Livelife, thank you for your inspiring post.  I also am worse eot which is going on 6 weeks now. If I don't bounce back within the next few weeks so I can get back to work and back to being my old self and mother, things are going to get grim personally and financially.  It's criminal that the pharm companies get away with 100% withholding information and misleading the public on the severity of it's side effects and eot recovery.  I would have waited until the new drugs come out next year.   Not that I am overlooking the huge milestone of curing this disease but certainly would have made a different decision on when and what I pursued.  If this goes beyond the next month, I feel legal action is warranted.
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I just want to thank you all, this thread has been a lifesaver for me, I smile when I see it pop up again and hope you all are doing better...and my heart goes out to the relapsers and I wish them strength to take tx again soon.

It will be 2 months out of EOT the 16th of this month and yesterday I called the on call nurse (think my brain goes on little journeys sometimes, but I'm also post menopausal, hah!) because I was almost convinced I was anemic....then I had the sores on the sides of my lip to prove it to myself (hadn't gotten those since I did chemo therapy 2 years ago) Nurse told me that I had great blood work, that with my red blood work there could be little chance I was anemic, but I have been inside a lot (light sensitive - though the Olysio was to blame for that, I also had a bone marrow transplant which makes me a bit sun sensitive) so I'm a bit stir crazy as well, LA gets hot in September....It's just so good to talk to people who are either treating or doing the waiting game, before and after. I just don't know anyone with this illness, at all. You're my "support group" and you all really help. If Hector is reading this, thanks for all your help and I wish you the best outcome for your tx...Few people here help as much as you do. Be well everyone!!!
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I have had to address this issue.  My gastro/liver Dr. told me HepC has been known to hide in the intestinal tract.  The way I view S/O treatment is it kills (an operative term) the virus where ever it is hiding.  My IBS kicked up after treatment (been finished and on week 3 of afterward).  However, the subject was brought up about the possibility of my IBS actually being caused by the HepC inflammation.  Follow your IBS diet, take it easy.  From what I can tell from many of the comments it takes a while for your body to equalize after treatment, then you can figure out if other steps need to be taken.
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I am one of the rare people born with HepC.  3 years ago I was "pronounced" and had two months to get a transplant due to autoimmune hep deciding to appear - it is believed due to the stress of a gall bladder removal.  Went through the battery of tests - got on the transplant list and, lo and behold, the HepC and autoimmune finished their battle (not without leaving me with 1/5 operational liver).  Then I started getting a little better.  Two month moved to three, three to four.    Treated the autoimmune briefly since treatment for autoimmune may let hepC flourish (which it did) however, the cocktail is not an option for my level of autoimmune hep.

Treatment is a hard decision to make.  You may be right, we are the forerunners of a new protocol.  It is the risk you take.  Having HepC is also a risk.  The decision is yours, but progressive liver disease is just that, progressive.
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