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6708370 tn?1471490210

Harvoni Riba post treatment side effects

I have done a lot of research about post treatment side effects but they are all about Interferon + Riba

Is is too early for there to be data available about post side effects from Harvoni and Riba?

I think my doctor thought that I should feeling great right now - I think I thought so too but I can't find anyt studies showing post treatment sx and I am Not feeling great - better though...

8 weeks post treatment...
9 Responses
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317787 tn?1473358451
Hi there 8 weeks is still early, like Susan above said it takes up to 6 months for the riba to leave your system.
Like you I did not feel better immediately.  It took time.
Try to eat really healthy, drink lots of water.  I get purified water delivered.
You also might want to try D3, that is supposed to be good.
I hope that you will soon have good days here and there until you are feeling good again.  It took a long time for me but I was on Incivek, Peg, Riba
My best to you
Dee
Helpful - 0
6815474 tn?1385511611
I am at day 14 Harvoni treatment and have essentially no side effects. I do have fibromyalgia for about 40 years and Type 1b for 47 years. The Fibro seems a little worse right now and I may have a bit of fatigue but that is all, nothing else.I have been losing some weight because I am just not very hungry. I am sure I will gain it back when this is finished and I need to.

Harvoni should not stick around at all. The drugs have a two day half life in the body, far, far shorter than previous drugs. That means after a couple of weeks it is basically gone from your body. I do not expect any long term side effects. I started with very little liver damage.

The degree of side effects most likely depends on the amount of liver damage you have going in. Harvoni does not cure your liver, your body does. Once the virus is dead the body must repair all that damage and that does not happen overnight. It can take at the very least weeks and possibly months.

If you have cirrhosis then your liver will never be fully repaired. Cirrhosis is permanent damage and will always reduce the ability of the liver to do its job. The worse the cirrhosis is, the worse the liver will stay. Nothing can be done about it no matter what the treatment is except for a transplant.

As for how much better you should feel, that depends on very many things. The liver is not the only part of the body that is damaged by Hep C. The virus lives throughout the body and causes damage in many other places including from your toes to your brain. It all depends on just how much  damage each individual person has. There is no "general" rule for that so what I tell you or anybody else says will not apply directly to you.
Helpful - 0
6708370 tn?1471490210
nice response, Pat

I agree that our group is more erudite

But just couldn't find anything about post Riba symptoms and I am trying to make the case that my doctor extend my disability until my 12 week EOT so I can figure out if I can still work full-time or not

And I was thinking lately about how many things happen to your body throughout a lifetime that effect your future health. That's why we are are all so unique and even if you told your doctor everything that ever happened - that time you fell off the horse or dove into the river onto some rocks or suffered peritonitius, every person bears the scars of their experiences and the docs necessarily have to work with generalities. It would be so challenging to figure all the variables that effect one's treatment and recovery

BTW, I had a baby when I was very young (19) and never felt bad or had any difficulty "recovering".

I do use Vit D2 - a once a week capsule, take Vit B12 everyday and recently had a bone density test that looked good. But I do remember researching Vit K years ago and I don't think we test for it in my labs now

Have a great weekend!

Helpful - 0
Avatar universal
So glad I found this Forum and not that one!  I am not saying that those people are not experiencing what they say.  I'm sure they are, BUT ther is no one telling them to keep on with proper hydration, liver friendly foods, exercise, ... You get the picture, and only a few who pare trying to get them to look at the whole picture - as we age, we get aches and pains, and some get depressed, all from other conditions than Hep C and its meds, and, sometimes, just goes with our age.  Of course, I am probably older than most of them (73).  Also, clearing this stuff from our systems takes a while.  I am enclined to think some even longer than 6 mo to a year.  One person talked about celebrating and enjoying the good days.  That is a big help, overall.  Having a baby takes a toll on a body on that site I saw someone mention a year for recovery from that.  Well, when I was of an age to be concerned they were telling us to allow 2 years for complete recovery, even if we felt good from the beginning!  I cannot believe these meds are any less taxing on our bodies that pregnancy and delivery.  

On another note, was it you who mentioned low Vitamin D?  When I got my annual wellness Labs, I noticed low Vit D, remembered that someone on here mentioned it and others agreed, so I began using a Vitamin D, Calcium Vitamin K chew that I used to use regularly.  Then when Dr got the results of my Bone Density study this week, he had the nurse call and tell me to start a calcium supplement, did not mention having to use prescription med, for which I am grateful.  anyway, I asked if the chew met the requirements, ad she told me to use the full daily dose age, not just half, as I was doing.  Of course, I had loss of bone density in the 90s even before Interferon, so I do not attribute my hip and low back pain and discomfort to Sol/RIBA as I know the history.

Didn't mean to write a book, but you know me - wordy!  Just wanted to say how special this Forum and the people on it, with sharing tips, offering encouragement, and common sense and caring, has been, and is, to me!  And, again, how glad I found this site first!

Blessings to All,

Pat
Helpful - 0
6708370 tn?1471490210
I did find some interesting comments on the net - anecdotal - here:

http://www.drugs.com/answers/sovaldi-long-after-12-week-treatment-side-effects-1452960.html

So, I think that some who undergo treatment with just Harvoni, are treatment naive and have no other liver disease issues, do feel just fine after treatment

But, it's also clear to me now that expecting to finish treatment and thinking that you will feel wonderful from then on is not realistic. From what I am reading, that time period can be from 6 months to 2-3 years although I certainly hope that everyone who treats and reached SVR does feel better sooner than that!

It's complicated by different legacy ailments and the amount of damage already done to one's liver and other vital organs because of the virus

And, there do seem to be studies re: post treatment sx but usually related to some other illness - thyroid, Vit E deficiency, HIV and neuropathy.

I'm sure we will learn more as more patients complete treatment
Helpful - 0
Avatar universal
Linda it took a minimum of 6 months for the RIBA to clear out and almost a year to feel normal.  I still find that Im fatigued more then before but blame it on just getting older. We have been living in a war zone inside our bodies for so long it's amazing that we've survived at all.  Just wish treatment wasn't so harsh with that RIBA thrown in but without it, who knows.
You've had a lot on your plate the last year and I think the combo of various ailments may have contributed.  Try to go easy on yourself and enjoy the good days.  Even tho you are cured, cirrhosis still remains.  That's gotta have some side effects besides the RIBA treatment.
....Kim
Helpful - 0
Avatar universal
The Riba takes quite awhile to clear out.., unfortunately, but that's just how it is.  A good sign, though, is that you cleared, I'm praying, keeping my fingers crossed for you, that you are SVR.   I've used SO MUCH Riba over the years, that I'm probably a good reference for what I'm saying.  It all takes time to wean out of your system.  How many weeks exactly, did you take the Riba? I know some on here, only took it for 1/2 of the treatment.., of those adding it in to the Harvoni. Can't remember is that what you did to?  If it is, I'm thinking you probably took about 12 wks worth of Riba?  You can correct me in this, as I can't remember every person's treatment history.  If you did take 12 wks, then, chances are, it will be right about 12 wks, that you'll feel more like normal.  I heard from one of the nurses (I've had several over the years through different trial sites and doctors), that however long you are on the Riba is approximately how long it takes to clear out.  Like in the old days when people treatmented for 24 wks regularly with SOC..., the common advice was don't get pregnant at least 6 mon. post Riba.  So, the school of thought, here was like, if you took 12 wks of Riba, in about 12 wks, it would be cleared. 24 wks of Riba, 24 wks over it being cleared.  Now, with that said, I've not seen any scientific papers stating that, but it makes sense.  Obviously, as soon as you stop taking the Riba, the level drops, but the reminents of it takes time to totally get out of every part of you. I'm thinking that if you drink alot of water, like when you've on treatments, and if you like it-the juicing drinks like Kale, and other healthy cleaning juices, that it might help to wash that out.  I'm sorry that you're not back where you were, yet. I know it's frustrating.   When I came off my last SOC, last year, my thyroid wacked out (from the interferon I'd just had).  This had happened to me once before.  It was normal pre-TX and normal all through TX and then, boom, went haywire.  I had to take Synthroid for a very short period of time, to get everything all evened out and then, was able to wean off of it and the thyroid went back to normal and I had no lingering Hypothyroid issues. The treatment and then, the soon after relapse, just sent my immune system all screwed up and caused a thyroid craziness.  Anyhow, just curious, have you had a TSH done, since stopping TX? I know you didn't do the Interferon on this last treatment, but since there are so many unknowns and Harvoni is still pretty new, it wouldn't hurt to rule this out, maybe?  Let me know what happens and if you start feeling better again soon.  You can PM me if you want.  Because I'm not on here as often as som people.  Susan400
Helpful - 0
200956 tn?1425591539
I am now 8wks EOT; I am feeling better than I have in years. I have been going on long swims in the bay and working without tiring. I did 24 wks. Harvoni, but ended the 18 wks. of RBV 5 wks. before ending the Harvoni, which means I am now 13 wks. past ending RBV and 8 wks. past ending RBV. My 4th wk blood work showed no virus and all blood counts happily in mid-range. You should start feeling better soon. Talk to your Doc., RBV is brutal.
Mike
Helpful - 0
Avatar universal
I didn't respond to this at first since I treated with Viekira Pak not Harvoni. I have started to wonder about general patterns of recovery after treatment.
- Changes in body chemistry as liver health improves
- Adjusting to life without millions of creepies doing a wraith number the on fresh meat
- And... Exposure to the classes of treatment drugs that make up DAA combinations

During the first month after stopping treatment my digestive system went ballistic. Felt like I was ulcerated from end-to-end. Good probiotics fixed it  no time.

4-weeks post my cholesterol level which has never been anything but normal has gone high. Insulin was measured and normal at EOT,  but this was not tested at 12-weeks post. I think it will be tested at 24-weeks. I have packed on 2kgs of pot belly blubber since stopping treatment. Something is different alright.

I am near 14-weeks post and I still tire easily after what I would consider mild physical activity. My doctor said give it 6-months. I am certainly improving but I wish there was some information on what to expect. Some understanding of the process.

I asked one of the trial doctors about how the immune system reacts to the absence of a virus that it has been battling for 30-years or more. He said that they don't think it is a problem because the virus is so specific (sic). What they are concerned with is an association between diabetes and HCV.

Anyhow I want more info!

Helpful - 0
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