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Post Info TOPIC: Did Harvoni cause my medical conditions


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RE: Did Harvoni cause my medical conditions
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Hey Tig, 

Thanks for pointing out to me that julia's post was this April, my how time flies eh? Hm, maybe ... it just feels like a long time since April??  Time warp here (on one side of my hemispheres anyway). Nice to know that all you harvonians have no such time warp, and, are probably not late for anything either! hee hee. C.  



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Canuck, You warm my heart.  Thank you and Tig and Jimmy and so many others who are there to make sure we never feel alone.  A more supportive group, I can't imagine.  The initial diagnosis is beyond frightening.  But these days, you just want to make sure you get the best meds, and you'll be right as rain before you know it.  Anyone diagnosed now is so fortunate.  So many people 5-20 years ago were not so lucky. Anna



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Age 66. 1988? Dx 1996. G1a.  Biopsies 1996/1998.  Mild inflam. Tx naive.12/2015-Fibro F3/10.5 kPa. VL 1.1m Harvoni 8 wks. 5/9 VL was 69.  EOT 6-13-16. ALT/AST 13/16. Platelets 325. UND.  9/4/16 EOT+12 UND & 1-10-17 EOT+30 UND!

Tig


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Hey Chuck,

Your memory is amazing! I don't know how you keep it all in such order. We are blessed to have you here, thanks for your help!

           

           

PS: This was started last month smile



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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Hey Pat,

I see you are a newbie here?? Nothing in your bio, and no signiture line to go by, so I assume you ARE a newbie (meaning, you have not joined the forum before??), I noticed you posted on another thread here today as well.

And from what I gleaned (from the other post you made today), you are not a newcomer to treatment though, rather, you have been cured with harvoni, and had prior experience with interferon? So, welcome to the forum, if you have not been to this site before and these are your ony posts.

Maybe if you were to introduce yourself a bit more, over in the "New Members" section, we could learn more about your experience from you.

BTW - I think the thread (below) that julia1056 started, is an older thread, it is not from April of this year I beleive.

Hope to meet you better and hear more from you over in the "New Members" section. biggrin C. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hey Singsong,

Sooo glad to hear from you again, and to enjoy hearing some of your unquenchable, logical and positive attitudes again, and to know you are doing OK and adjusting to all!

I've just arbitrarily decided to assign you an A+ rating, aside from any other measuring tools you like to use! We had you waivering at about the B+, A- level (right after that overdue trip to the lab parking lot I recall) hee hee, so, in my books, by your account, A+ sound quite in order.

I am so sorry to hear about your dear freind though, I too went through loosing a nice freind last year, not easy, for anyone - she was strong for you, now you have to be strong for her. We all do the best we can in life, and that is all we can do. You are so right about how precarious (and precious) life is, curing our HCV makes one so aware of how things could have turned out otherwise.

Keep mustering. So glad to hear from you again. Please do keep us posted. C.

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Hi Anna,

Nice to hear from you! I'm glad things are progressing well for you and you're enjoying the successes of treatment. It is important to share that kind of news with those coming behind you, wondering what to expect.

I'm so sorry to hear about your friend's terminal illness. I know she's lucky to have your support and friendship. Life can indeed be precarious... 



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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Maybe I should post on a few boards.  I did have a few months of "so now what?"  after I was cured June 2016 after having HCV for likely 25 years.  8 weeks Harvoni.  After a couple 2-3 months of readjustment, I can't think of any symptom I have that I would say is Harvoni related.  But that's just me.  I can't be more thrilled to have that monkey off my back.  My dear friend had been so concerned for my health for years, and now she has a terminal illness (cancer) and has been given 6 months to live.  Life is so precarious-nothing is guaranteed.



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Age 66. 1988? Dx 1996. G1a.  Biopsies 1996/1998.  Mild inflam. Tx naive.12/2015-Fibro F3/10.5 kPa. VL 1.1m Harvoni 8 wks. 5/9 VL was 69.  EOT 6-13-16. ALT/AST 13/16. Platelets 325. UND.  9/4/16 EOT+12 UND & 1-10-17 EOT+30 UND!

Pat


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Your gyno is an idiot to say that.  It's like when people say my husband is in a better place.  I didnt lose an ounce on harvoni.  But then again I treated for a few years with interferon, pegalated and ribovirin and never had symptoms So it didn't surprise me.  But just because 97 people didn't have it doesn't mean the other 3 are wrong.  Your gastro is following with tests to determine so give it a little to see if he's right.  I wish you luck



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Tig


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Hi Julia,

You sound at wits end and I don't blame you. I'm sorry you have to deal with this. There are others that have described some of the same things. Many of the things you mentioned are well known extrahepatic manifestations. You're doing the right thing by investigating this further. I'm including a link to a page V that has dozens of reviews from patients describing their experience with Harvoni. You'll see you're not alone, but are in a small group. I also want to point out that many people that experienced a harsher side effect profile after treatment witnessed improvements, albeit slowly. Don't get discouraged!

Harvoni User Reviews



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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So sorry to hear of your health issues.

I had a bunch of auto immune issues triggered by my failing liver/immune system, they have mostly resolved with SVR...except my allergy to soy. (Although even that is a lot less scary/severe if I get exposed to it.)

My sis-in law has celiac and she was so sick from it she lost weight when she was pregnant confuse after that she was diagnosed and her next pregnancy was a lot better.

And if by chance it is celiac, at least it's treatable and it seems that gluten free everything is available.

I sure hope the gastro gets it figured out quickly for you. That gyno sounds a bit foolish.

Feel better soon

               

A

 

 



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
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4 years.... successful dragon slayer 



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My experience with 24 weeks of Harvoni ending 1-2016 did not include any weight loss issues. I actually gained a few pounds. I know these powerful medications affect different people in different ways, and some have a tougher time than others, but I don't recall anyone at all experiencing weight loss to the degree that you describe post Tx. I feel like it's a good chance you have something else going on and I hope all your focus to find out the link to Harvoni doesn't cause you to miss something else that is the real culprit.

julia1065 wrote:
My original liver biopsy was stage 3 progressing to stage four. My last check up. They now do an ultrasound test has me barely in stage 1 chirrosis!


They can't determine with accuracy a fibrosis stage via ultrasound and there is no such thing as "stage 1 cirrhosis" but it's very possible your liver has regenerated from F3 to F1 fibrosis which is very good news! 

Celiac disease is usually a genetic disorder and can cause weight loss. Do you have any history of it in your family? Your doctor may recommend a gluten free diet but he'll likely wait until he does the endoscopy before making any decisions. 

I hope you get this sorted out Julia and when you do please let us know what you find. smile

 

 



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60 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 = SVR

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Thank you for your word of support and kindness.  I wrote my post this morning when I was feeling really sick so I wasn't focusing on the good.

So let me tell you that once you get cured your liver does regenerate as long as you take care of it.  I was careful to watch the OTC drugs and thankfully gave up drinking ten years ago.

My original liver biopsy was stage 3 progressing to stage four.  My last check up. They now do an ultrasound test has me barely in stage 1 chirrosis!

I wish for everyone to find the right meds to kill the beast.  

 



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Julie Sell


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Hi julia,

I'm glad to meet you here. You were here long before I came along to this place. You're a real veteran. 

I wish I had answers to your questions but your problem (your symptoms) is a hard thing to ponder. I am very sorry for your ongoing worry right now.

I do know many people have suspicions about the long term effects of the new DAA's, just like the worry of the old drugs regimes (the months and years of the old interferon based treatments people were on), and what they could possibly do to us. More clear is what HCV will end up doing to our livers and us if left untreated, there is a lot of those stats and those experiences to rely on!

I am very glad you are cured (finally) after such a struggle to get there, despite what you are experiencing now.

I have read many concerns about "the unknowns" of ledi, and many (any, actually) of the other newer NS5A's (this new differing approach on how we are targeting the disruption of the virus replication cycle). What we do know, so far, is it is working stupendously to annihilate the virus, we are getting so close to 100% cures nowadays. What we don't know are .... well, ... the unknowns! It's early days!, all I can see, so far, is a low incidence of documented neg effects, and quite high levels of suspicion and fears. Who can blame us! (on the fear side, it is a place we all tend to go), but isn't that the weirdness of this all, we are getting so well cured, but are still finding oursleves left with doubts about the stuff that cured us.

Your first treatment was with asun, that is one that seems to have lost some favour, I am not sure if it is still in use anywhere, but I have not looked at that recently. What troubles were associated with that one? What troubles might be associated with ledi, or ANY of the new therapies for the matter - who knows at this point. Like we had a choice? Some choice!, to be party to continuing to harbour a liver/life destroying virus, or take the best the scientists have tried to create for us.

Let us know what else you and your docs keep thinking, on this bowel/wgt. loss dilemma. Wish we knew more about your labs, sugars and your weightloss and/or bowel conditions, all along since you have been experiencing this problem! So hard for us laymen to figure things out. Investigations like you and your gastro are doing sounds like the right thing to me, endo/ruling in and out celiac or many other reasons for your condition(s). What were/are your levels of fibrosis/cirrhosis, what imagings/fibroscans have you had done post-cure for "following"? Do you have any other ongoing health conditions?

Please do keep us posted on what you are finding out. I am sure we will all be more than interested, I am rooting for you for a resolution to this. smile C.



-- Edited by Canuck on Saturday 8th of April 2017 07:54:34 PM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hi there it's been a long time since I've been on this board and sorry that I haven't been keeping up :( Anyhow I was one of the "lucky" ones to get Harvoni when the FDA first approved it 10/15. The Dr put me on 6 months of treatment becuz I was a former non responder. Went thru treatment no side affects I was feeling great and losing weight! A pound a week! So after six month of Harvoni I thought the weight loss would stop. Wrong! I lost 60 lbs without trying and leveled off. Now all of a sudden I dropped another ten pounds out of nowhere. Have lots of stomach issues and dizziness which I never had before. Drs have been checking everything on me cuz of the weight loss and everyone says nothing is wrong. The gyno even said "most women would be thrilled to have your problem!". Now the Gastro is going to do an endoscopy thinks I may have celiac disease. I had less problems with my body with the disease. I am afraid that there is some permanent damage. Thanks for reading... I can't find much info on side effects after taking the drug however there is a petition going around change.org the petition wants the drug company to be more honest about side affects. Apparently there were problems during the trial phase of Harvoni that were not disclosed.

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