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Post Info TOPIC: Recovery from "Harvoni" Q & A's Lets figure it out !


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RE: Recovery from "Harvoni" Q & A's Lets figure it out !
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So what about liver area pain people? Anybody have it post treatment? I'm worried here And about to eat a bag of Oreos!!!!



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



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Thanks for the Forum and the feedback from everyone.

FYI Post Harvoni 9 days mild liver discomfort, swollen feet, mild fatigue and some sleeplessness, drink fluids for headaches, I can attribute some of these ailment to my age and being a paraplegic

What a difference a day make feeling much more upbeat. biggrin

Just as a side bar I was infected with Help C from a Blood transfusion in 1987. I received a letter from the Hospital in 1994 stating they had given me infected blood, testing for Hep C in blood donors did not began until early 1990's.



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sandi49

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Thanks for the update Chili! That's what I was hoping. The target of <12 was achieved and there is no mention that the virus was "detected but unquantifiable". That's what we like to see! Good luck on your week 12 tests. smile



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hello, spoke with my Dr. this morning she said the results are as well as 0 and I have my labs set for 12 weeks.

When I began this is was a GT 1 treatment naïve w/o cirrhosis.

My labs Oct 6  before I began treatment were:

HCV RNA 1014585 million

SGPT-35

SGOT-33

!!/3/2015        SGOT-17, SGPT-12 HCV RNA 16    4 weeks

11/25/2015     SGOT-19, SGPT-15 HCV RNA <12  8 weeks

12/29/2015                                  HVC RNA   <12  12 weeks     Interpretation: As of 2/18/15 reportable range is <12 IU/ML to 50 million IU/ML. This test is a quantitative PCR intended for patients with HCV infection. The limit of detection may be lower than the limit of quantification this assay is non linear at lower limits and will be reported as HCV RNA detected but below the limits of quantification.

 11/5/11 to 2/18/15 Reportable range is 45 IU/ML to 50 million IU/ML

This was the same interpretation at 8 and 12 weeks.

Thanks everyone for the positive thoughts and I feel better will also be positive about result and co

 



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Do you have a copy of your results on hand? Some literature states that <12 is the goal of treatment. Our immune systems then take over and control it from there. Does it specifically state that you are "detected - <12" ? The test may consider a result of <12 IU/ml as undetected, unless it specifically mentions that it's detected. What does it say exactly?

Just know that it's not uncommon to still be detectable at EOT. The rates of success are based on the viral load at EOT +12. I think you should wait until then and have your labs done. That's the test that counts. It's way too early to consider your treatment a failure! Hang in there...



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hi Chili.

Don't be "bummed" yet. Gracie is right. With Harvoni the 12 weeks post treatment VL result is the one that counts most. It is not unheard of to test <12 during treatment or at EOT. Your story reminds me of one of our members (Coolheat) who achieved SVR 12 just a few weeks ago after having 'detected' VL test results throughout treatment and also at EOT. See THIS THREAD and search Marsha's previous post and you will see that you still can achieve SVR.

 According to your previous post in the 'New Members' section on November 17th you are genotype 1a, treatment naive, only 1 million VL @ SOT and biopsy's showed that your liver damage is not extensive, therefore 12 weeks of Harvoni is the correct amount of treatment for you. I would request a re-test when you get in touch with your doctor since mistakes on lab test do get made. Did you get a hard copy of your test result or was this latest result given to you via telephone, messaging etc?

Hang in there Chili. There is a solution. smile

 



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57 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52,+115wks = SVR-115

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I agree, less than 12 sounds like it's almost gone... Wait until post 12, you could be SVR. I don't think starting again after more than a week off would be allowed.

I've been done two weeks, and today noticed some liver area pain. Has anybody else who finished experiences that? Of course now I'm worried again.



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



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Hi Chili,

I'm sure Tig or others will be along soon, I'm new to all this but <12 sounds like a number not to be worried about, I'll let them chime in here to give you their opinions, hang in there, try not to stress, talk to your Dr, see what they have to say.

There's a reason that many doctors wait until 12 weeks After treatment.

 

Linux



-- Edited by Linuxter on Wednesday 6th of January 2016 12:59:21 AM

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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 



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Well, Just got my results and after 12 weeks my results are still <12, which is really disappointing. Its been 8 days since my last dose. Called Harvoni and they would not say if there was any protocol for stopping and restarting the drug to fulfill the 24 week course which is supposed to have a 99 percent cure rate. Trying to get ahold of my Dr. she was out of town over the holidays.no  Bummed...

 



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Hi Chili,

Congrats for finishing treatment! Fortunately Harvoni clears the system pretty fast. It takes about a week altogether. The old Interferon and Ribavirin treatments could take 6 months or more to be free of it. You just beat down the virus and used some strong drugs to do it. Don't expect to feel brand new, at least not for awhile. Take some time and let the rest and recovery period begin. It seems some sail right through with no side effects, others take a month or more to get a good idea on how long it might take. Treat yourself right, eat well and keep up your hydration, that's very important.

Good luck with your test results. Be sure to let us know when you get the good news!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Well I have successfully ate my way through the holidays. Guess my harvoni sweet addiction lives on. My feet are less sore - still pops up, but not as much. The side that scares me the most is when my hands get puffy. I've had puffy hands for years, and during treatment, they weren't as puffy. Now they come and go. I'm pretty sure it's the cirrhosis or what I'm eating, but when I notice it, my mind says "it's back!!! ". Sleeping well, more tired than usual (fall asleep at night in my chair when watching a movie etc.), but still maintaining my exercise regime. 

.... And the time ticks on ... hoe many more weeks before 12 week blood draw? Oh yea, TEN!



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



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I am 66 year old paraplegic, did 12 weeks of Harvoni last day 12/28/2015. I do not have my results yet but my 12 weeks taking Harvoni I had very minimal side effects, fatigue and headaches resolved with water and keeping busy for fatigue.  My original viral load was just above 1 million, my last blood test it was <12 at 8 weeks.

Something I have noticed post Harvoni mild liver tenderness some fatigue and increased bowel elimination.

Does any one know how long it takes Harvoni to be eliminated from the body?

Waiting for an undetectable in next couple days. Fingers crossed. 



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Great stuff Matt.

Have a great 2016. Cheers from down-under.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 74 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +4 years

Malcolm



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 When I grow up I want to be just like you Matt! You were a role model when fighting and killing the dragon, and you've shown that the job is not finished just because the dragon is dead. Your patience with giving your body time to recover and your actions of continuing to take care of your body have paid off big time. And you have been so helpful to myself and so many other forum members along the way. I'm happy for your success and I'm following in your tracks. Carry on! smile



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57 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52,+115wks = SVR-115

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Matt, Great to hear such wonderful news! ALL The Best For 2016 And Beyond!

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36 yo M, first dia in 2002, geno 3A, TX naive, starting trial of sof/vel 12 weeks on 1/6/2016

VL on 12/21/15- 507,000

12 week EOT 3/30/16, VL-UNDETECTED ALT-23, AST-24

24 wk post tx  10/16 VL-UNDETECTED! ALT-16, AST-18

SVR24+all LFTs normal=1 DEAD Dragon!

 

Don't stop fighting til the dragon is DEAD!

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Hey Matt,

I really enjoyed your update. It's nice to see your treatment success and good news expand into so many areas. I can tell you're feeling better by the way. Your posts are always helpful and more upbeat all the time. You fought hard to pin on your SVR Wings and we're all thrilled to be here to celebrate your success. It's so great to see the "Old Guard" here, those long time members, that tried and failed repeat attempts of Interferon and DAA hell, finally win! Congrats buddy and enjoy the coming year... smile



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61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hey All

Thought I should relate my SVR-24 / year end recovery status report.

Since Dec. 7 (24-week EOT) I have had all new Labs /CBC,LP, Pro-time etc. All came back in the normal range except Platelets, but they have increase as well. Also had my Gastro Doctor perform a colonoscopy, and liver ultrasound scan which turned out clear of any issues. Then had my PCP do a complete physical with PSA, Lipids, etc. labs and urine analysis. All turned out normal. Wanted to take advantage of insurance with the full deductible having been met.

Having all these results revealing no new additional issues had a calming effect which in itself leads to the feeling of well being.

In addition to and before these tests and found that my intermittent abdominal inflammation had disappeared when I started to take digestive enzymes and probiotics before I eat any big meals. My energy levels are still increasing every month and can say that with the combination of eating healthy and working out/exercising I have reached a point where I can say that I have not felt this good in 8 years. Also trying out some new supplements for eyes / vision care and joint aches. (Astaxanthin & Krill Oil) so far so good, but time will tell if they have any worthiness. All in all most of my post Harvoni complaints have dissipated to the point of no return.   

 

Matt     



-- Edited by Matt Chris on Friday 1st of January 2016 04:33:33 AM

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61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



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I forgot about this thread and it's interesting to read what I posted earlier. At the time when I did I felt great and was so happy to finally be finished my 24 weeks. Only a few days after posting it I had severe fatigue crash. About a month later I thought I was beginning to come around but a few days later it started again. I finished my 24 weeks exactly 2 months ago literally to the minute as I type this.

The last week has been much better and lately I've been sleeping very well...finally without any need for sleep meds except all of 3 mgs of melatonin...I think soon I will be able to drop that to. I gave myself a few weeks off from my usual workout routine...I may have put myself into what's referred to as CNS (central nervous system) over-training. I don't know...maybe I was fighting a flu? But I can't help but feel it was the Harvoni. Although I'm much better I'm still not as energized as I was early tx. I'm beginning to realize and accept that it may not be until the summer before I feel really good again...at least I hope to feel really good again. In 4 weeks from tomorrow I will have my 12 EOT test.



-- Edited by Jaded on Tuesday 29th of December 2015 07:53:04 AM

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63 year old EOT 10-28-15,SVR24 April 21 2016  ALT-21/AST-28 July '18 - fibroscan 7.4



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I haven't posted any of my 'recovery' results in this thread yet because I don't qualify as "recovering" yet. But I will qualify in 10 more days and I will be interested in anything posted here. That said: I vote to 'sticky' this thread if that's okay with everybody. Thanks to you Matt Chris for starting this 'useful tool' thread!



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57 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52,+115wks = SVR-115

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Tig


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Hi Everyone,

I'm going to bump this thread back into the mainstream, it seems to have been absorbed and lost. I'm noticing a lot of new threads and comments being left regarding their experiences following the end of Harvoni treatment. We would like to keep this section updated and active if possible. 

Our Moderator, Matt Chris, set up this thread to document and compare some of the issues affecting Harvoni users following treatment. If you have recently posted information pertaining to this on another thread, please take a moment and add your thoughts here. Copy and paste your own comments and only if they apply to this subject, please.

Thanks so much for your help and if you could keep checking back in and updating, i would be forever grateful! We need a place to compare notes and we hope this thread will be most informative. In some, issues affecting your joints are mentioned, others have sore feet, wrists, heart flutters, etc. Now we have some members mentioning eye/vision differences and differing issues between male and female patients.

Your help is greatly appreciated!



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61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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It's December now (30 days off Harvoni) and I've had no negative side effects. In fact, i had a couple of scares with my sugar levels dropping low. I thought, oh great, now I have to worry about my Type 2 Diabetes sugar levels raising too high from cheating with sweets and now have to make sure I have the right amount of sugar/insulin ratio.  Well, I stopped taking my Glipizide for one day, then two days, etc... and also could eat a 1/2 box of Oreos and my sugar didn't skyrocket... I  thought my diabetes was cured. The nurse said it would make sense that the Hep C effected my liver's ability to process insulin... My primary doctor always said I could determine when to start and stop the insulin medication, i.e., lose the weight, eat healthy and avoid Type 1 diabetes... I no longer am taking Glipizide, but am still on Metformin until I get a full blood work done for Hep C and everything else.

So it's a month off Harvoni and I feel great.  Just to know psychologically that this horrible disease is very possibly eradicated from my system is a relief, but physically I feel better than usual.  I enjoy a dessert on occasion, but still want to get rid of this weight. I'm tall and I may not look obese, but I technically am. And now there is no reason to feel that the monkey is still on my back. I still have some health issues that limit my activity, but I am far from being crippled. I celebrate how fortunate my life is and the second chance been given to live a healthier life.  No way am I going to blow it.



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50 y/o, DX 2003, geno 1a,

30 Days post (60 Day/Harvoni) - feel great. No longer need/take Glipizide for Type 2 diabetes.  

* Will provide more specific stats afte Feb. blood work.



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Welcome to the forum Pam. As Tig56 said, you should start getting some relief fairly soon from the side effects of Harvoni. It's a shame you didn;t find the forum until after treatment but 'better late than never'. Keep us up to date on your recovery from the side effects. Your doctor should have you scheduled for a viral load test somewhere around Feb 18 2016 and that result should show 'Undetected'. Let us know that result when you get it so we can help you celebrate. smile



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57 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52,+115wks = SVR-115

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Pab


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TY for reassuring me. 

I did update my signature.

 



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68 yo female, geno 1a, 

tx #1 harvoni x 8 wks , completed tx Thanksgiving Day!

 

 

 



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I want to say thank you as I have learned so much and can be reassured that what I feel is normal. The bloating, insomnia and brain fog are the worst for me. I have insomnia anyway so that does not help. Reading the threads also makes me laugh at myself, the one on a different page about hissy fit in Walmart helped immensely. I know I am not alone. I mentioned when I first joined the forum that I will be losing my job first Q 2016....had a bad case of brain fog yesterday and had a phone interview, Oh my! But today I feel better and know it is a day at a time and this too shall pass. 

 

Have a great today everyone,

wendy



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 

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Hi Pam,

Welcome to the forum. First of all, congratulations for completing treatment! We have had many here mention the same problem with abdominal discomfort, bloating (gas) and digestive difficulties during and post treatment. The good news is it tends to improve fairly soon once you've had a couple of weeks to clear the drugs and to allow your system to get back on track. It will happen, just doesn't occur fast enough! The same improvements with the brain fog should happen too. You've been on some strong medications and it takes awhile to get things normalized. Hang in there.

PS: Here's some info to help set up your signature line if desired. It helps us respond to your posts and lets us understand where you stand with treatment, genotype, etc, without having to ask or refer to your bio. There's also a helpful list of abbreviations used here on the forum.

http://hepcfriends.activeboard.com/t58862021/forum-abbreviations-link-and-help-with-creating-your-signatu/



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Pab


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I took my last (of 8 wk tx) on Thankgiving Day! Post harvoni I am getting left side pain, bloating, gas and constipation. U/s shows enlarged fatty liver onlyhas anyone else experienced this post tx?

foggy brain and some dizziness also remain.

new to this forum and thankful to find you



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tx #1 harvoni x 8 wks , completed tx Thanksgiving Day!

 

 

 



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During treatment  2014  sof-riba 16 weeks   S/X  were   insomnia  (bad)  irritated easy!!  amped up from riba surge   Post treatment - insomnia and brain fog. Muscle fatigue.

Treatment  now  12 weeks peg-sof-riba    insomnia-irritated very easy-very foggy-Muscle"s hurt!

I"m very grateful for where I"m at with my treatment, I "m this far into it  and still waiting for week 4 results. Its worth it all to kill the dragon.    RC



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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Tig asked me to add my info to this thread even though I treated with Sovaldi/Olysio:

I'm SVR, 16 months past EOT on Sovaldi/Olysio. I had Hep C for 40 years, and have cirrhosis. My short term memory is horrible. It was bad immediately following treatment, then seemed to get a little better. The past 2 months have been awful..... Sometimes lately I worry that this may be the onset of Alzheimers.

This is a good thread, I'll keep checking back: I think I get more info here than from my hepatologist-

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 Female. When treated: age 63, gt 1a, compensated cirrhosis, platelets 67,S/O 12 week treatment,EOT July 30 2014

Oct. 23 2014 EOT + 12 SVR !!!!!! Thank you God and Medical Science.

Jan 19 2015  EOT + 24 results: still SVR



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I finished 12-weeks on Harvoni about 9 months ago. At 15 weeks post treatment I was undetected for which I am very thankful. My post-Harvoni experience is that my mental state/memory has improved.  I developed tinnitus during treatment which seems to be lessening as time passes. Otherwise, physically I haven't noticed any improvement. Aches and pains persist but they can be attributed to pre-treatment conditions +age and old injuries.  I was hoping for a noticeable physical improvement but that's probably too much to wish for, especially working on a computer 12 hours a day and sitting on my butt way too much :). 



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HCV Gen 1a diagnosed 2001; Labs 11/13/14: VL 1.2 million IU/mL, ast 88, alt 111. Harvoni TX 12 weeks.  EOT - 2/18/15, VL UND & normal ast/alt.

4 wks after EOT, VL = UND; normal AST/ALT at 4, 8 and 14 weeks after EOT.  15 weeks after EOT = Undetectable!

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Hi Marsha,

We yall's doin purdy good around here, ha, ha!! I'm so glad you checked in. I just sent you a PM to see how things are going. 

We're asking for input regarding the experiences people are having on Harvoni, so you might see a couple of new threads discussing that now. Feel free to share your experiences and any lingering side effects you may or may not be having. We'd like to get a bit of information put together to compare the number of people experiencing similar side effects post treatment. 

I'm choosing to keep my fingers crossed that your upcoming viral load will come back undetected and this will be the end of the track for you. You have some very qualified doctors in your neck of the woods, and the new protocols are improving all the time. If you have to retreat, I know you'll succeed. I admire your positive attitude and you messages are always uplifting. I'm looking forward to hearing back from you on those results, just as soon as you get them. I'll be looking for some info early next week! Don't forget smile

Keep working on your physical fitness, it sounds like it's really benefiting you. I hope you've had time to do some more of your artwork. We need a fresh infusion of beauty soon! Talk to you soon, we all wish you the very best for your upcoming tests!



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61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hi everyone, hope all are well and enjoying the season. Will be back to post my 3 mo. VL blood test which I will take on this coming fri.. Even though I came back detected, but unquantifiable through my treatment with harvoni, I can say that I am feeling better. Feeling better in many ways; BP finally going down, skin is clearing and healing, appetite not as ravenous, sleeping better, have lost 10 to 15 lbs, brain fog is still there but better. I can laugh at the brain fog now, because its leaving, slowly. My hip is better, PT has me in the pool and working on me on a table. We think we have identified when this happened to my leg and hip. I was at the gym still 1.5 mo. into my harvoni tx, I was doing Mtn climbers and developed a "drop click" in my hip. Because I was on tx, I decided to take it easy and do my last 1.5 mo. of tx not working out or stressing my body. I was sedentary for that last part of tx. My muscles got stringy at the hip, I developed trochanter Bursitis. It effected my sciatic and IT band. For almost 2 mo. now I have been in treatment for this issue. It is better and they think that it will healed completely by the end of the year. In the first couple of weeks after harvoni tx, I was not able to walk without a cane and at night sometimes had to be helped to bed. I took low dose pain killers and still am taking maybe 1 to 2 a day. Its better. I keep looking at my right side to see if a bulge is coming back with the inflammation of my liver it is not.  Many Dr.s names have been given to me that are within 50 miles of where we live and I will be call one or more of them to get an appt. with the test results I should have next week.  Then I will wait another 3 mo. to make an even 6 mo. and if the hep c is replicating; I will be blessed with a positive direction in Doctors. My reg GP wants to do a total blood chem on fri. as well. The Dr. I have only ordered a VL test. I would like to know if my platelets are up and all the good stuff. Thinking of you all. Now that I can get around better, I have been away from the computer and have been working to get things in order for a longer stay on the earthly plane, one way or another. Now I will see whats ya awl' have been doing. Thanks for all your help and support to keep me aware of all liver related imfo. and your friendship in knowing we are not alone and have a support system in place to help during and after tx. Hugs, Marsha



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65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED



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Other than a perception that my pre-existing moderate tinnitus has been slightly exacerbated, I am not experiencing any post-Harvoni issues that weren't a problem before treatment. For me the side effects during the 12-week course were mild occasional headaches and tinnitus which I think were due to the drugs. On the other hand, in spite of lab results indicating a return to normal liver enzyme levels, I have not felt a notable energy increase or other obvious improvements in my physical well-being yet. I've been through with the Harvoni for a little less than three weeks though, and it may be premature for me to expect too much.

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61 yo, GT 1a, liver F1-F2 pre-treatment.

Diagnosis circa 2000. tx naive till 8/6/15, Harvoni tx initiated 8/6/15 through Gilead's Support Path. 28day labs: virus "und." Sides mild. EOT 10/28/15. EOT liver enzymes normal range: AST 25, ALT 18.



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Cured 4 months ago. Near zero side effects/complaints. Feel great, life is much better now!

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I had been treated with peg interferon, RIBA, infergen, incevik triple.....I developed chirrosis and was miserable, exhausted, foggy brain, no appetite, lethargic, insomnia, severe itching, some depression and irritability.  No real joy.  Life was an effort.

I completed 24 week Harvoni treatment on April 23.  

On treatment I experienced severe joint pains (especially my left shoulder), incapacitating "pseudo gout" (right foot),  cold sores and a persistent cough....

Since EOT

Platelets remain low.  

Joint pains have eased

Increased energy

Have developed a ferocious appetite  

Frequent cold sores especially after being in the sun.

More energetic

Sleep through the night.  

Bloating with increased gastric motility.

Have had  spike in my blood pressure (which has always been a low normal)

Vision issues, but this may be due to aging

Skin texture is better

No itching.

The main thing after treatment is my general feeling of well being and the desire to "do things" and make plans for my future...At 65 I feel I have been given back  my life and pray everyday that my liver will begin to heal itself 



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Thanks all for responding with your real world results, we will be compiling a list of issues then try to create a poll to find a common denominator to "Harvoni" exclusive issues

matt  



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



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I am 9 months post treatment and had blood work to see how my Hep C status is a few days ago.  No results yet.  Pretty sure all is well. 

I was treatment naïve and was only having acute symptoms for about 6 months before getting diagnosed.  Liver area pain bad enough I couldn't roll over in bed.  Constantly catching one cold after another.  Just fatigued and unwell.  I have suffered with muscle aches and pains for at least 25 years.  I just thought it was me.  My friends didn't feel like I did and I kept active and lived life. I had reoccurring gastritis and stomach issues for my whole adult life.  Sought treatment for it, had an endoscopy and they only found irritation.   After the first week of treatment I noticed headaches, brain fog, blurry vision and cramping in my feet.  Never had any of those things prior.  It has taken months but my hands and feet aren't better.  My vision is probably the best it will be and going downhill.  Brain fog is way better.  I have major stomach issues still, worse than before treatment and live on 2 Zantac a day.  Headaches are less frequent now but I still get them and have spikes in my blood pressure for no reason.  I look like hell.  Most concerning for me is how my eyes are still puffy and wrinkled up which happened during treatment and never went away.  I seriously look like I aged 10 years in those two months!  I think that bothers me the most!!!



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!



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Thanks PL

Had you ever been treated before? 

Also how many months from EOT would you estimate until you could say you felt better physically than before treatment?

matt

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Hi Matt, I was treatment naive when I started Harvoni.  I'm pretty sure I've had Hep C for at least 40 years or so, or at least in that ballpark.  My main symptom (aside from brain fog) however was the debilitating fatigue and I'd say the last 7-8 years I literally felt like I was waiting to kick the bucket, just from the fatigue.  I'd do NOTHING and feel tired.  I can't really explain how bad it was.   So while on Harvoni I felt a bursts of energy, while there were some days I'd feel tired  (but never the same fatigue feeling like pre-Harvoni).  And at EOT, I feel good. I feel like I have a life again.  I go out and do things...more importantly, the "desire" to do things is coming back.  Don't get me wrong, I'm 63 and I get tired, but its a different tired Matt...It's like a "normal" tired.

So my answer I gues would be I felt better immediately because Harvoni got rid of that desperate fatigue feeling for me..



-- Edited by pl1952 on Thursday 5th of November 2015 12:47:21 AM

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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5



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am now 11months since eot. to be totally honest ever since i found out i had hep c and was put on interferon riba and twice taken off because of intolerance to the interfer. then told they could do nothing for me.then in 2014 hospitalised due to ammonia flooding brain.was put on solvidi/daclatasvir/riba.was not in a gd way when put on tx was 2stone underweight. have cleared virus but have come to accept i will never be the same man as i was when all this started.just age has a massive part to play in how i feel.my 50s where lost in a hep c haze. am still waiting to hear about transplant but as time goes on the thought of having to go through a long recovery from that does'nt appeal to me. ive spent so much time getting over treaments that life stopped.feel now i want to enjoy life.am left post tx with muscle/joints aching tingling and numbness in hands and feet some gastro probs never had these prior to tx. but am free from that brain fog and chronic fatigue.have now got a totally different view of life dont live worrying about whats going to happen tomorrow have got enough to get on with today. but getting back to post tx probs have had nearly everything that has been mentioned but as time went by they eased still get down days but who does'nt. as they get more info on these drugs am sure wont be long before ther will be hardly any side affects.sorry ive been a bit long winded but thats how it is.best of health to you all                                                                                                                                                                                                                                      william



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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



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Matt, this is a good topic for discussion.  As most know I did 24 weeks Harvoni and as my signature line shows, tx ended 4/28/15.  I still have ,the brain fog, joint, and muscular issues.  My job kept me sitting behind a computer for many years and I am not getting any younger :).   Though I can't say with complete certainty, I do believe my joint/arthritic, tendonitis, and muscular issues were made worse by the Harvoni.  During tx, I had sharp hip and shoulder pains which I'd never experienced prior to tx.  These have improved post treatment.   I have tendonitis in my elbows which I never experienced prior to tx.  I also have increased knee/hand joint, arthritic issues that worsened during tx.  While this could be aging, I don't think it is all attributable to being an old fart. :)   These aches and pains definitely contribute to insomnia.  The burning in the feet and muscular issues are worse at night while lying in bed.  There seems to be an overall increase in bodily inflammation if that makes sense? 

Years ago, my primary care doc diagnosed me with neuropathy, no testing or nerve conduction studies were ever done.  I recently contacted my hepatologist for a referral to a neurologist.  The earliest new patient appt. with the teaching hospital is in March of 2016  AIEEEE not good.  My primary care doc mentioned I may want to see a rheumatologist.  Was fortunate to get a timely appointment as they had a cancellation.  Needless to say, I am not complaining, just stating conditions.  I'd do the Harvoni again in a heartbeat.  If I should learn more or determine the cause of these issues after seeing the rheumatologist, I'll definitely share.

 



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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.



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I finished 24 weeks of Harvoni 6 days ago. I had a pretty easy ride...a brief middle period of fatigue which I believe was resolved through more hydration and some mild back ache but at 60 years of age I have been dealing with things like that anyways and I'm not sure there are many people my age who don't have the same issues regardless. Compared to my previous experiences with both mono therapy Interferon and Interferon/Ribavirin...this was a walk in the park. I feel very good at the moment and much better than pre-treatment in every way. One reason may be that from the beginning of this Hep C journey 20 years ago I made full on commitment to my health which include a very demanding exercise regiment and high quality nutrition...and no matter how tired or how much I didn't feel like exercising whether on tx or not...I did it anyways. I have seen a study that concludes that after 40 years of age a sedentary person will lose 20% of their ability to regenerate per decade as opposed to 2% for an active person. So if you have been sedentary for some time before tx and then gave in becoming even more so during tx it will likely take you more time to bounce back and be more difficult to regenerate your whole body...not just your liver. But everyone is different and maybe so far I have just been lucky. I am aware that anything can happen and change at anytime for anyone...for now I'm just grateful for how I feel. I am still waiting for my 24 week tx viral load test results which may come in tomorrow hopefully...and then 4/12/24 EOT still to come.

One very strange thing I am dealing with which I never anticipated is learning how to live without this dragon leaning on me and controlling a large part of my life. For the last third of my life there has always been something to worry about and all of the sudden there is not really that much to worry about at all. Worrying became a learned reaction and now I have to learn how to unlearn it and it's very strange indeed.




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63 year old EOT 10-28-15,SVR24 April 21 2016  ALT-21/AST-28 July '18 - fibroscan 7.4



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My symptoms are all new. Never had any of that going on prior to Tx. I had brain fog during and immediately after Tx but no more. 



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Ww

Dx 2002, GT 1B, VL 86.5k IU/ml, ALT 47 AST 36, Tx Harvoni 8 weeks (4/20/15-6/15/15) SVR-12!!!



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Thanks PL

Had you ever been treated before? 

Also how many months from EOT would you estimate until you could say you felt better physically than before treatment?

matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



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Hi Matt, if I'm understanding you correctly, you're asking for complaints directly attributable to taking Harvoni after end of treatment...If that is correct, I can't attribute anything directly to Harvoni.   My main complaints are tingling in my feet and brain fog...I still have it and it was there before treatment, so I can find nothing that I am feeling now that I can say is a direct result of being treated with Harvoni...



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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5



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This was my first and only treatment. My doctor qualified me for treatment because of the cryoglobulins present. That was the only thing I was experiencing prior to treatment. I have no liver scarring and my viral load was 86.5k UI/ml

 



-- Edited by WarriorWolf on Tuesday 3rd of November 2015 07:13:28 PM

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Ww

Dx 2002, GT 1B, VL 86.5k IU/ml, ALT 47 AST 36, Tx Harvoni 8 weeks (4/20/15-6/15/15) SVR-12!!!



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Hey Katrina

Thanks for contributing,  I have a question. Did you have any prior Hep-C treatment with older protocols?

With this thread we will try to narrow down the most common issues then build a survey poll that others within the Harvoni treatment group can input dat

Matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



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I'm not sure how to start out but I would like to participate. Here is a list of things I've noticed. 

Depression 

Severe acne breakouts 

Cold sore breakouts 

Weak ankles

Mild discomfort in my hands

Fatigue 

Irritability 

IBS 

Weak vision early after Tx (didn't persist) 

Painful and sensative feet

I was experiencing pain in my hands and feet prior to TX on occasion. It was due to cryoglobulins in my blood. Now it is worse in my feet. 

 



-- Edited by WarriorWolf on Wednesday 4th of November 2015 02:23:17 PM

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Ww

Dx 2002, GT 1B, VL 86.5k IU/ml, ALT 47 AST 36, Tx Harvoni 8 weeks (4/20/15-6/15/15) SVR-12!!!



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Lets figure this out. 

With many of our members dealing with questions and concerns about how they feel after the end of treatment it would make sense for us to address this issue by means of either poling our members or having a deep examination of the common complaints that all patients/members of the forum that have been on "Harvoni" or other Sofosbuvir based DAA  

One way we can isolate the sides effects and complaints of "Harvoni" is to make sure that they are exclusive to that drug. All chronic Hep-C patients that have been successful treated with non Harvoni treatment protocol have experienced recovery woes and side effects of their treatment protocol. So the obvious question is which complaints / side FXs can be associated with "Harvoni" only or are exclusive to "Harvoni "

In addition to finding that information our goal should be to also find ways to remedy and lessen the issues or complaints

The first thing we will try to do is compile a list of complaints / issues that our forum members can put into words. We can categorize them into three types Physical, Psychological and Emotional.

We would like input from all members that have achieved SVR regardless of the means, Just indicate your treatment protocol if it does not appear in your signature at the bottom of your post

I will start out with a few thoughts of my own, the first thing I think is after treatment sometimes we expect to much. What I mean is after 12 weeks or 24 weeks (my case) of treatment by Harvoni , we expect a big change or relief of Hep-C related woes and sometimes between the anxiety of wondering & waited to see if you achieved SVR and your body coming down from a long drug exposure it can be a period of tribulation both emotional and physically.

Is this issue exclusive to "Harvoni" I don't think so

Or how about thinking that I would be having more energy after treatment ended even after 12 weeks or longer. Like others had mentioned sometimes yes, but other times worse. My thought is after having our Liver endure 20, 30, 40, plus years of the Hep-C Virus their will  be a necessary recovery period especially if we have other co-morbidities / physically challenges. The words "recovery time" and pace should be considered along with the time your Liver lived with Hep-C. Is this issue exclusive to "Harvoni" not sure,  but being on the older SOC protocol that lasted 48 weeks of Interferon and Ribavirin certainly was a harder and harsher treatment

So describe your issue and then ask yourself is this exclusive to "Harvoni" ?

Lets figure it out ! Please express yourself we need you.

matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 

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