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Hep C Discussion Forum -> Post Treatment -> HORVANI POST TREATMENT SIDE EFFECTS
Post Info TOPIC: HORVANI POST TREATMENT SIDE EFFECTS
shadow10cats


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RE: HORVANI POST TREATMENT SIDE EFFECTS
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About 2 mos post treatment. Haven't posted in a while bec I have been having some issues with fatigue and raging lower back pain. I know I have arthritis; degenerative disc disease but it never bothered me as much as it has now. Sure Im older but for crying out loud this is just ridiculous. I wake up in the morning in pain or should I say the pain wakes me up. I've actually had dreams that I'm being hurt or shot or stabbed in my lower back but it's just the pain in my lower back taking effect on my dreams.  How crazy is that? Could it be that the Harvoni has something to do with this flaring up so badly?  I don't know how since I'm off it.  We even went out and bought an uber expensive mattress to no avail.  Really kind of sucks that big wazoo. It's a beautiful day today and I picture myself mountain biking or hiking - Have these beautiful spots in the Adirondacks that I want to be but hiking is grueling and my lower back isn't allowing me the pleasures. I haven't posted bec I didn't want to be negative or scare anyone who is starting treatment.   Don't get me wrong I am so happy and thankful to have that dragon off my back and would do treatment again in a heartbeat to be rid of it.  AT this point I'm just curious if anyone else is feeling less than "perky" after completing treatment.



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Diagnosed 10/04 / VL 12.7 M / Genotype 1b - Grade 2, Stage 1 / 2007 -Pegylated Interferon & Ribavirin - Stopped Due to Sides / 2011 - Telaprevir, Interferon & Ribavirin - Stopped Due to Sides / APR 2015 - COMPLETED HARVONI So Far Undetectable :) 
bubble


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Brian:  My Favorite ,  Organic Carrot Juice with a shot of Aloe Vera juice (Unpasteurized). My new ****tail.  Watch the iron intake though !



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60 yrs. Geno1b 2001. 9mil. VL. �Failed Post Riba/Peg tx. 2006 46 weeks. Diagnosed 1A 2015(?) F3 fibr. 225k VL. Vikera/Riba 12 weeks 3/20/2015. "Undetected" start to finish. Undetected 1yr post tx.
skewedButNotBroken


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I was on the Sovaldi/Olysio treatment and I'm still experiencing chest pain and many heart flutters, a general LSD-like feeling and really bad back problems lately. For me, it's been a catch-22 situation ,i.e., no seemingly  logical alternative. Suffer the consequences of treatment or die being slowly poisoned to death.



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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Brian1412


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Groupgetter. Yes i frequently had pain In the area. I had it 3days ago and even at the beginning. Only one thing seemed to be the issue.. my body wanted food. Whenever that happened i ate. Someting and it went away. Every single time. Just a thought.... i started buying the poms smaller. Bottles of pomegranate. 100 percent juice with cherries. Or blueberry and that too made it go away...i still think it was time to eat alert from body

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Tig


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Good luck William!! We're all rooting for you. We'll be waiting for the good news!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Cinnamon Girl


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Hi William,

Good luck with your 6 month viral load test, you`ve been undetected all the way through including at 12 weeks post tx, so you`ve already got this! 

Good to hear about the Hep C group in Portsmouth, I lived there for most of my adult life and still have some good friends living in the area.  I`m sure you have a lot you can share with the members of that group and vice versa. 

I`m so glad you`re feeling better now and losing some of the worst symptoms that were troubling you, it does take a while post tx especially when you`ve had the infection for many years.

All the best for you, take care and keep us updated.

~ Jill

Ps - I love your new avatar photo, i have areas in my garden I keep for wild flowers to grow...  smile

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
basser


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have 6month post tx viral load test tomorrow.was on sol/daclatasvir/riba.for 12wks.am cirrohtic.am sure it makes a massive differance to getting over tx.we are fortunate here in portsmouth uk.we have a hep c group going here.so have people coming in thinking of going on tx.some on tx and others post tx.have seen those without cirrohsis within 3months are really well.plus they havant got the damage of being hep c for yrs.ive come out of tx with more aches and pains than before tx.am slowly getting bk to health.have lost that awful brain fog and cramps that used to keep me awake at night.am still waiting to see if i have to have a transplant.hopefully not.gettint rid of virus is a miracle and does give me hope for the future. beat of health to you all                                                                                                              william smile



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 william.61 yo.lives in uk.geno 1b.started sol/dac/riba sept 2014 12wks.am now svr and now had liver transplant on 19/07/ 16
rblood


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Thanks Tig! I'll Take a look at the link......Roger

 



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Groupergetter


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Sorry I had posted this question on the "all aboard Harvoni" thread.  My apologies a bit excited with the eot +4 results.  Has anyone experienced more frequent"twinges" sensations or pain in their liver post Harvoni tx?  Throughout the 24 week tx and 2 weeks post tx I had only occasional/rare minor pains in what seemed to be the upper right quadrant of my liver.  In the last 10 days or so I've been experiencing more frequent sensations/pains twinges in my liver.  Any thoughts as to why this might occur?  I'm wondering if this might actually be a good sign (liver absent of virus)   Thanks



-- Edited by Groupergetter on Tuesday 2nd of June 2015 05:05:37 AM

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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Tig


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Hi Roger,

If you Google 'Statins and Liver Disease', you'll find a lot of references. I don't think you should have any problems as long as your doctors are aware of your history of HCV and periodic LFTs are done, at least annually. The various articles I've read mention the possibility of raising your ALT/AST levels, but rarely, and they don't seem to indicate a need to worry about damage. Malcolm should have some input when he checks in.

I imagine your ALT/AST on last exam was well within normal limits, thus indicating nothing happening in your liver. That's good news!! You got this buddy =-)

http://blogs.webmd.com/cholesterol-management/2011/03/do-statins-harm-the-liver.html



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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rblood


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Hello Forum,

I saw a cardiologist today about chest pains I've been having for awhile. He said he thinks my heart is okay but he wants me to start taking Simvastatin (Zocor) for preventive maintenance. But after doing a little research on the drug I'm hesitant to take it. It can (in rare cases can have effects on the liver)
Anybody here have any good news about Statins?

Oh I all most forgot, he said that by my resent blood tests that he could tell I have cleared the hep C. It will be another month before my hepetologist will test me and give me the official report.

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Tig


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HARVONI POST TREATMENT SIDE EFFECTS
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Hey Ro,

Just wanted to say good luck on the tests today! Confidence is always a winner =) Let us know as soon as you hear the good news!

------------

Roger,

Do you suppose some of those aches and pains are because we're a couple of old farts? Just kidding, but we're close (I keep telling myself that)! My tinnitus is back at full force too. The insomnia is accompanied by that high pitched screaming. Annoying as hell.....

I hope those issues you spoke of are improving. I'm sure that it has to be stressful at the very least. Take care of that ticker Brother, without it, nothing else matters. Keep us updated and don't forget to find some "Roger" time! Good luck buddy....



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Ro


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RE: HORVANI POST TREATMENT SIDE EFFECTS
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Finished my 24 weeks on April 23.. I too have lingering effects of joint pain and body aches and I tire easily.  

Really hoping to start seeing these issues lessen, soon!

Going for 4 week post treatment labs today

Ro

 



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rblood


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Hello,

I have been off the Harvoni since 4/10/2015. So far I feel no difference. I'm still fatigued, all the aches and pains are still there, the neuropathy still the same. My ears are still ringing. I am having issues with blood pressure. I've been in the hospital three times since EOT over blood pressure and heart issues but I have been going through some tough personal issues since EOT that I'm sure has not helped. Seeing primary Doc tomorrow about the blood pressure and take some blood tests.
At first my blood pressure was going through the roof and now it is getting too low. Heart rate is fluctuating to way high to way low.

I'm hoping to turn the page any day now and start feeling more energetic. I don't know if Ive cleared the virus yet. Liver Doctor wont do blood tests until three months EOT.......Roger

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shadow10cats


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I too was quite tired after I stopped Harvoni & during it.  

I also had some gastr-entro issues that really heated up. I had always had the problem, probably IBS or something w/ the colon but shortly after stopping that issue got really bad.  Looking back, with Harvoni causing dehydration it could have caused the issue to flare up worse than ever. Who knows.
- 
But now it's been about a month and I think energy is starting to come back.  However, it's not just physical energy - it's motivational energy.  I WANT to get up and do stuff.  A month ago I would think about doing stuff as I lie on the couch, the fall asleep.  10 days ago I could not walk up a step w/o screaming out in pain.  Yesterday I hiked a pretty tough 7.5 mile hike almost straight up Hopkins mountain in the Adirondacks.  It got a bit tough and I though about quitting but that hike used to be our "go to" hike when we wanted to do something quick & easy so I wasn't about to let the mountain beat me down. Plus I had the angels of my mom, sister and step mom kicking my butt up the mountain!!

I guess we have to rid our bodies of the Harvoni - have to read up on how long that takes. Plus depending on our lifestyle choices our results will all be different. Our bodies have been thru a lot and just because some test says "undetectable" it doesn't mean we are automatically "healthy".  Hopefully we have all gained a bit more respect for these bodies that give us life and learned that there are consequences for the choices we make: some of which may not rear their ugly heads for years to come - but sooner or later they do! 



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Diagnosed 10/04 / VL 12.7 M / Genotype 1b - Grade 2, Stage 1 / 2007 -Pegylated Interferon & Ribavirin - Stopped Due to Sides / 2011 - Telaprevir, Interferon & Ribavirin - Stopped Due to Sides / APR 2015 - COMPLETED HARVONI So Far Undetectable :) 
Groupergetter


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Hi Steve,  I've had joint pain, arthritic symptoms, tendonitis, brain fog, insomnia, and neuropathy prior to and while on Harvoni.  I do think they were for the most part exacerbated by the Harvoni (especially headaches and insomnia).   The good news for me is that just over 2 weeks post tx, I'm starting to notice subtle changes for the better.  I'm not sure if it's just getting off the meds or my liver having a break for the last 26 weeks.  The past few days I've had a small but noticeable improvement in the brain fog.  Very encouraging.  I've also noticed a slight improvement in skin issues I've had on my arms.  None of my symptoms post eot have gotten worse.... (so far :)   Just hoping and praying the 4 week eot labs come back und.   Hopefully you'll start feeling better.  Gotta remember we've had this crap for years.



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Michaele


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Hi   This may sound really strange and not worth mentioning , but I noticed my hair does not grow as fast post Harvoni .  My hair used to grow at an excellerated rated , maybe due to the Hep C?  But I noticed the slow growth  over the past few months . Could be a good thing . Sorry about all the post Tx pains.   Michaele

 



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MDodrow
Tig


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Hi Steven,

We've been discussing this more often and have seen people experience everything from very uncomfortable leg and back pain, joint discomfort and the generalized fatigue you spoke of. Seems that insomnia is bothering some as well. We also have some, like Lon in the post just before yours, that has been experiencing none of it and is actually feeling energized and more youthful! I think it hasn't been determined precisely how anyone is going to react during or post treatment. This is so new and we're gathering more and more knowledge regarding Harvoni's impact with each patient's experience. That's why it's important to document how it affects you and share it with your doctor.

The feelings you're experiencing isn't uncommon. The members going through the same treatment have expressed they do feel better, after the medications have cleared and once they've had ample time to rest and recover. Just know it does take time.

Congratulations on finishing treatment! Please let us know what you find out. You should do very well, good luck!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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ss


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HAS ANYBODY EXPERIENCED ANY SIDE EFFECTS ONCE THEY FINISHED HARVONI - I JUST FINISHED 2 WEEKS AGO A 24 WEEK TREATMENT. FEELING SOME TIREDNESS AND JOINT PAIN



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Harvoni Started - November 23 2014

Geno 1b  Cirrohsis started incivek October 13, 2011 ended incivek on January 5, 2012

 FAILED

6 months Undetectable! 

8 months UNDETECTABLE

Last Shot Sept 7 2012.

Last Ribo Sept 13 2012

Graduated now to Post Treatment

  

 

 

 

 
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