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Post Info TOPIC: Recovery from "Harvoni" Q & A's Lets figure it out !
K8


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Hi Canuck Thanks for your kind words. Yes, I remember You finishing treatment just ahead of me. I still have low iron but I take Hemagenics iron once in a while along with the vitamin C. Still drinking my spinach shakes ( loved reading the healthy recipes that were posted here). I will Look at WBC - I , of course, thought the doc should just give me an infusion, but he would just say, see you in two weeks. I wrote doc a note when I got The results. He has been a Hep C specialist for many many years and I am sure he can use good news. Good to reconnect and agan thanks for positive reinforcement My dog & cat have forgiven me for the riba rage fits during the last 2 Weeks

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K8

65 yr female.Gt 2 B.  Contracted Hep C approx 71, 

tested 2007 - vl 10mil   RIBA/PEGI in 2007 6 months,  undetected EOT,  VL 600,00 in 2008

tested in Feb,2016 VL less than 2 mil, SOT 4/25/16  SOL/RIBA for 3 months , EOT July 17th, 2016

AUG 12th blood work - undetectable 

 



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Hi K8,

So glad you wrote in. Big congrats on your (wow) 1 1/2 years SVR's! How time fly's. I am coming up on my 2 year mark (approx) pretty soon too!.

I remember you well. Back then I poured over your posts, feeling for you, and your months of riba (realizing this was your second riba round experience, AND, not to mention the interferon insult of prior!) - all that you had to go through since 2008 to get cured. You were very brave. What a strong soul you must be - you got yourself through those spritual and emotional dificulties (as you put it). You should be feeling very proud of yourself.

You and I were kinda going through treatment (about) the same time period (me on the soft easy drugs) - Mar to May 2016 , and you, doing the cruel hard riba-time ride (Mar to Jul 2016). I admired your courage very much during that trying time, especially so, knowing you had been there before in 2008. Had I not been successful in landing myself a very lucky seat in a cushy 8 week trial of the soft drugs, and instead, had ended up doing the 24 weeks of sof/riba first indicated for me, I would have only wished that i would have been as strong and brave as you were.

I don't recall whatever happened about your anemia - how low did your hgb go, and how long did it take to rebuild with your NP?

Respect and only good wishes to you. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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 Kathleen,

Thanks for checking back in! I really enjoy hearing from our Veterans. I’ve been part of the forum for close to 5 years now and when I see a name from my time here, I remember them. Then I go back and see when I got to know them and read up on the things happening during that period. The new treatments are so much easier and so much more effective. I just missed the Sovaldi train and now look at how much has been accomplished in the fight against this disease! That doesn’t mean we’re clear of our friend Riba, but we’re close and I really like the sound of that! My skin has also taken on a texture I’m sure must be a gift from the Dragon and the drugs. Don’t get me started on achey joints and arthritis!

Take care of yourself!



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Tig

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

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K8


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Hi,

I haven't posted in quite a while, site was a godsend when I was so distraught while in treatment.  I, too, had Solvadi & Riba (second time with the Riba) and she was as nasty as I remembered the first time 8 years ago.  Treatment was 3 months, last couple of weeks was emotionally & spiritually difficult.

All of this is to say Thank you, for your encouragement to keep going,  virus undetectable 18 mon EOT.  Although I do give full credit for abundance of wrinkles on my beautiful face to RIBA, She did her job & I am grateful.  
Blessings,
Kathleen



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K8

65 yr female.Gt 2 B.  Contracted Hep C approx 71, 

tested 2007 - vl 10mil   RIBA/PEGI in 2007 6 months,  undetected EOT,  VL 600,00 in 2008

tested in Feb,2016 VL less than 2 mil, SOT 4/25/16  SOL/RIBA for 3 months , EOT July 17th, 2016

AUG 12th blood work - undetectable 

 



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Canuck wrote:

Gee, I dunno Lamont ... I think you have a kinda cute head ... going by your picture here! heehee 

My mainstays are to always avoid using a bright light in the bathroom, then there's less mirror shock. As I age my vision gets worse, especially night vision, night driving, reading, on and on, have had irritating double vision for eons, and intractable tinnitus for just as long, and NONE of it has anything to do with Harvoni, heehee (that's my weak attempt to stay on topic). For decades I have been lamenting for bigger, better, brighter lights all throughout the house. I'm a frequent-flyer buyer of magnifying glasses, reading glasses, but never, ever, will I increase the candles of my bathroom mirror light! Actually, I got my partner to put the lights in there on a dimmer switch! Sometimes, late at night, when I pass that bathroom mirror, I can soothe myself and say, well in this light, I don't look THAT bad! smile. This is the one time that "fog" does come in handy, on the bathroom mirror, when you are naked. I never clean the bathtub drain either (my partners duty) so I don't have to gauge how much of my hair is stored in there. I wear hats a lot. Keep the sun at your back, face in the shadow, when chatting with folks outdoors. Hair and skin, who gave it so much thought, when you were 20 eh? I had to borrow my girlfriends car one day, she has one of those super-dooper makeup light thingies built right onto her sun visor, never ever look in those to inspect your face and eye skin. It ruined my day. I've been having a bad hair day for quite some time now. wink C.


 Well, yeah. Cloudy vision, and reflextive weirdness in sunlight, and of course night driving is always fun. I took my wife and one of her friends out the other night through San Francisco after dark. I was aware that I had to be extra vigilant about what I was seeing....as my night vision has been poor for about 10 years already. If it weren't for all the lights it wouldn't be so bad. Ive ridden at night on my motorcycles all over the place, and no issue unless it's night time, and raining. Yikes, can't see anything....



__________________

Lamont Cranston "Only the Shadow knows."

65 years old, retired IT Network support 29 continuous sobriety in AA, ,DX'd in '99 with MS, DX'd with HCV 2, 2b , F0-F1 3/17/2017 VL 5.7m Starting EPCLUSA 7/28/17

No Virus Detected on November 20, 2017 3 months after EOT



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Gee, I dunno Lamont ... I think you have a kinda cute head ... going by your picture here! heehee 

My mainstays are to always avoid using a bright light in the bathroom, then there's less mirror shock. As I age my vision gets worse, especially night vision, night driving, reading, on and on, have had irritating double vision for eons, and intractable tinnitus for just as long, and NONE of it has anything to do with Harvoni, heehee (that's my weak attempt to stay on topic). For decades I have been lamenting for bigger, better, brighter lights all throughout the house. I'm a frequent-flyer buyer of magnifying glasses, reading glasses, but never, ever, will I increase the candles of my bathroom mirror light! Actually, I got my partner to put the lights in there on a dimmer switch! Sometimes, late at night, when I pass that bathroom mirror, I can soothe myself and say, well in this light, I don't look THAT bad! smile. This is the one time that "fog" does come in handy, on the bathroom mirror, when you are naked. I never clean the bathtub drain either (my partners duty) so I don't have to gauge how much of my hair is stored in there. I wear hats a lot. Keep the sun at your back, face in the shadow, when chatting with folks outdoors. Hair and skin, who gave it so much thought, when you were 20 eh? I had to borrow my girlfriends car one day, she has one of those super-dooper makeup light thingies built right onto her sun visor, never ever look in those to inspect your face and eye skin. It ruined my day. I've been having a bad hair day for quite some time now. wink C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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wendyo wrote:

Thanks all, I will be seeing her tonight. 

Lamont my hair thinned badly on interferon but did not notice any change on harvoni. Lately I think is it the meds or age lol?!


 I dunno, I had lost some hair "normally" over the years, but it had mostly been staying on since about 50 years old. I've been on Acyclovir for a nasty eye herpes attack, so I was on both Epclusa and Acyclovir and my "regular" drugs for BP and MS. Seems like a big shed all of a sudden, but maybe I have't been paying attention. Wouldn't be an issue if I didn't have such a homely head.



__________________

Lamont Cranston "Only the Shadow knows."

65 years old, retired IT Network support 29 continuous sobriety in AA, ,DX'd in '99 with MS, DX'd with HCV 2, 2b , F0-F1 3/17/2017 VL 5.7m Starting EPCLUSA 7/28/17

No Virus Detected on November 20, 2017 3 months after EOT



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fourlocos wrote:

....  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!!!


 Yeah...I got out of the shower the other day, and one look in the mirror had me turning off the lights. "That can't be me."

But seriously, I do look a little worse for wear, but fortunately I do feel better. I hope you recover your better self soon!



__________________

Lamont Cranston "Only the Shadow knows."

65 years old, retired IT Network support 29 continuous sobriety in AA, ,DX'd in '99 with MS, DX'd with HCV 2, 2b , F0-F1 3/17/2017 VL 5.7m Starting EPCLUSA 7/28/17

No Virus Detected on November 20, 2017 3 months after EOT



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Thanks all, I will be seeing her tonight. 

Lamont my hair thinned badly on interferon but did not notice any change on harvoni. Lately I think is it the meds or age lol?!



__________________

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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I had major digestive problems, and felt like I was slowly dying for about 2.5 years, I was finally DX's with HepC, but it was largely gone after about 6 weeks of Epclusa, ; slowly but surely things got better as far as stamina and overall "feeling" good.

Wonderful.....Until I got a Vicious, stubborn Herpes simplex outbreak in my right eye, that took nearly 6 months to subside. It messed up my vision, and well, what can I say? I have no idea if the Epclusa was a factor, but it sure is weird.

I have had maybe 3 cold sores, in my Entire Life, and those were all minor events, hardly even worth bothering with. Then Ocular Keratitis. Who knew?

 

Oh, and I don't know if it's my imagination, but my hair has thinned out somewhat, seems like more than just my normal slow hair death.



-- Edited by LamontCranston on Tuesday 16th of January 2018 12:55:03 AM

__________________

Lamont Cranston "Only the Shadow knows."

65 years old, retired IT Network support 29 continuous sobriety in AA, ,DX'd in '99 with MS, DX'd with HCV 2, 2b , F0-F1 3/17/2017 VL 5.7m Starting EPCLUSA 7/28/17

No Virus Detected on November 20, 2017 3 months after EOT

Tig


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Wendy,

Sorry to hear about your friend. They have gotten so good at treating different types of cancer, lets hope for the best. You’re in an area known for good care. Prayers up!

Your comment about putting your problems in the middle of the room is spot on. We never know what the person next to you is going through...  

Keep us informed. 



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Tig

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

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It's the cookies that make us smile that way. wink C.

Wen, So sorry to hear about your friend, a terrible blow. cry C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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TIG Your selfie proves you were on riba/peg way too long!    Get some dental work will ya?    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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Wendy, Im sorry the hear about your sponsor praying it can be removed.   When I had HCC I really never thought I had cancer, it was my liver that had cancer and it could be replaced. I got SOOOOO lucky!!   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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Very true, always something and today I feel like life is not too bad as I recently learned my sponsor has stage 3 cancer. Breast cancer survivor and had now it appeared elsewhere

As I have heard if we all put our problems in the middle of the room, we would probably take back our own. 



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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

 

Tig


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 Thought I’d share a recent ”selfie”

8C6EE1B6-0F0F-4C4C-AC5C-DBC9BA72E5D6.jpeg



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Tig

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

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Hey Wendy,

so relieved for you that it was tartar build up.    

I had my first molar fracture about two years after my tainted transfusion and over the next couple of decades had a miserable time with fractures, breaks, abscesses, root canals that didnt take and infections.

Having never done interferon, I blame the HCV itself.   From what I read/saw of other peoples experience,I always kinda thought interferon seemed to exaggerate symptoms of HCV, that was partly why I refused trying that treatment.

Anyhoo glad your teeth are happy 

A

 



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57 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2 year post tx- dragon slayer 



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Yay Wen!, 

So glad you got tartar versus a hole in your tooth. Whew, good, I would take tartar anyday! One less tooth to be worrying you. Dang tartar! 

I HAVE to go every 3 months for periodontal disease cleanings, ya, gets expensive! mm, reminds me, I better go off and floss now! wink

Had I known how much work all this maintaining/keeping/improving health was, say ... when I was 20, maybe I might have tried harder earlier?

Hey I paid for one of those bruxism plate things too one time, unfortunately it didn't take long before it was too tight! I wasted my money, as I somehow outgrew it, my teeth became more bucky I guess. If I tried to force it in now, i'd probably snap sumpin off! I still do a lot of grinding, I try to catch myself and prevent myself from doing so, but those plates are good for that. I envy you with a naturally nice lookin set of teeth. Wish I had been able to get braces when I was a kid! Like Tig I have some bone loss, but so far the teeth themselves do not self-destruct/crumble as poor Tig has had happen. 

Always sumpin, as JK would have said. wink C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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 Tig and C,

The dentist admitted he did not know anything about interferon (he is very young) but he did know about the newer meds. I did interferon twice so I am sure that has something to do with this. Luckily today was just a buildup of tartar that made it feel like a hole to my tongue. They removed it and at any rate have my 6 month cleaning in 3 weeks. I too am fanatical about my teeth, I have floss in every bathroom as well as my purse. Just relieved today was really a non-issue. 

thanks!

 



__________________

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

 

Tig


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Hey Wendy,

I missed your post earlier about your teeth. Trust me, I feel your frustration. I’m having an awful time with mine. I wasn’t part of the Harvoni experience, so I can’t attribute my problems to that. I can however, attribute a large part of my troubles to Interferon. I have had increasing bone and tooth loss, as well as multiple fractures in teeth previously healthy. I lost two molars with existing crowns. The teeth just fell apart under the crowns :( I have taken such good care of my teeth, flossing, brushing, cleanings, blah, blah, blah. The dentist just scratches his head and is willing to do whatever he can, but the cost of dental care and cosmetics is prohibitive and prevents me from going forward. I think I’m going to be that old fart with 3 teeth and a piece of straw sticking out of my mouth! The soundtrack from Deliverance is emanating from somewhere, that concerns me.... wink



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Tig

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

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Tig, it is a nice feeling to know that I am free from virus. And to be feeling normal!  Normal for me anyway!  

Ribavirin is bad stufF!  Sounds like Harvoni doesnt have all the side effects. 

Phyllis



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PZ

genotype 3

sot. 12/11/14

eot. 5/15

Sovaldi and Ribavirin for 24 weeks

clear of virus as af 4 /16

 



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Yes I am up early!  since starting Rexulti I do get up early. 

I am no longer taking gabapentin. toe has healed nicely and Im walking some but last week was so cold!

rexulti was first used I think, for schizophrenia. Then they found it works for major depressive disorder.

i also take .25 mg of clonozapam if needed. 

We r supposed to have another freeze next week!  Cold was easier when I was younger!  As many things were!  

P.



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PZ

genotype 3

sot. 12/11/14

eot. 5/15

Sovaldi and Ribavirin for 24 weeks

clear of virus as af 4 /16

 



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Thanks C. I will post after I see the dentist. Fortunately no teeth have fallen totally apart. The 2 previous ones were old crowns that needed replaced as they started chipping (molars) I also since then invested in a professionally made mouth guard to sleep in as I seem to clench in my sleep. I plan on asking the dentist if he knows anything about HCV. This is a new doc as the old one sold the practice.



__________________

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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Hey hiya!

Well, you're up early (or late), me too! Oh so glad to hear this. Rexulti doesn't ring a bell with me, but I will look it up now. Good stuff to know about. So glad the combo is working well. biggrin Agree, dark places can be so, so hard to take.  hm, puts me to mind of the "L'oreal" syndrome (if you know that commercial) - expensive products, but "we are so, so worth it"! Congrats on bloods AND feeling better and better. 

Is the toe OK now, and you're not on gaba anymore? Are you still taking your walks? C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Good morning Canuck!  I am glad to hear from you. The doc prescribed Rexulti to boost antidepressants. It worked right away. Pulled me out of the depression. So now my meds are Paxil, 40 mg, venfalexine, 75 mg, and Rexulti, 1. Mg.  I am so thankful to be out of that dark place. I had blood work on Dec 30 and everything was in normal range.  For me Rexulti is expensive but worth it  

Phyllis

 



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PZ

genotype 3

sot. 12/11/14

eot. 5/15

Sovaldi and Ribavirin for 24 weeks

clear of virus as af 4 /16

 



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Hey Phyllis,

Ya! So good to hear from you! Been wondering how you were doing. Glad to hear you sound like you are doing really well. If you don't mind sharing maybe you would tell us what your drug combo is now that is working better for you? Are you still on the gaba? How's the toe for walking now? Fill us in on anything you care to. Happy you checked in, it gives others out there (who have also traveled long journeys and been through the wringer) feel better to see others do well. In my neck of the woods, we had a brief reprieve from the deep freeze, made my near daily walks a tad easier, but  ... unfortunately, back in the bone chillin cold again now! sigh - hampers these outdoor ventures alright. Glad you checked in! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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 Wen,

Very clear are the parts about having to go to the denist and being sick of it and the expense, but the rest of it (the reasons for these dental disappointments) is not.

Why are we left with questions like these? Many of us do have questions like these. Almost impossible to come up with good fer sure reasons. If there were good reasons, then maybe we would feel like we could try to do something about it, or at least have a focus of understanding as to why things happen to us! Chicken or egg, 6 of one/ half dozen of ... all we got are suspicions about the mysterious interferon or "treatment" drugs we are all happy to be now virus-less from, yet, wonder about the wonder drugs. I'm waiting for brand new drugs to come out, the ones that will allow us to have taut skin, perfect teeth, snappy fully firing synapses, and no diseases whatsoever, that last 300 years - that would help me a lot with all my questioning I do! RC and I both did some of that "if I had a nickle for every time I wished I could just jump into somebody elses body, just for a while, to find out what normal was, we'd be rich" thing! I have shared thoughts with others, about feeling like we were being sucked into some mysterious vortex of early-aging-type things, prior to treatment, and then after as well! So, still, no comparisons to guage things by! https://www.youtube.com/watch?v=1-IvTF0xUxM - I'm like Nelson Riddle in this commercial - I can't tell!  

Don't undermine yourself or minimize things by saying "not that it matters at this point", because, it does, does to me dear one (and to you I am sure), and to the many here and around you who know and care about you!, justifiably so, all of your gangs want to see only good things for you!

Having a buddy tooth crumble in your mouth is and can be quite a devastating thing to go through, and having it happen multiple times?, just multiply the grief, loss, and trouble.

When things are going hunky-dory we tend to take most parts of ourselves for granted, when they screw up on us, that bitter disappointment gets our attention alright.

I have know others close to me who have gone through hard dental issues/battles/hardships/losses and improvements. I do wish that your dental "run" has mercifully run it's course. smile C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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.

 

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Tig


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Hello Phyllis,

So good to hear from you! I’m very happy to hear you found some relief from the depression. It’s a very common side effect of Ribavirin. As a matter of fact, there are way too many ugly side effects related to that drug. It’s a pharmaceutical nuclear weapon! It took me a full year to get over that. I’m glad you’re feeling better.

Congratulations on your continued SVR! You did it! It’s a nice feeling, isn’t it? Take care and stay in touch. It’s going to be a great year ahead!

smilesmilesmile



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Tig

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

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Hi Tig, its been awhile since Ive been on forum. My problem was depression from Ribavirin I believe. Anyway, about 4 months ago my doc tried a booster drug and it has relieved me of the depression. (Thank you to my Higher Power).   Anyway I am still free of virus and my EOT was May, 2015. This website has been so helpful to me. 

Phyllis

 



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PZ

genotype 3

sot. 12/11/14

eot. 5/15

Sovaldi and Ribavirin for 24 weeks

clear of virus as af 4 /16

 



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Hey family,

spent some time reading old Mallani posts last night about interferon and tooth issues as I have yet another tooth that a piece has fallen off of. I have very nice teeth, never wore braces and yet had 2 crowns in the past few months (one was replacing an old one) and had to get an implant a few years ago. Of course I want to know is this normal aging or result of HCV. Not that it matters at this point but I am getting sick of going to the dentist as well as the expense. Glad to be HCV free but just needed to vent and put this out there. 



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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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Singsong,

B+ to A-!! Wait and see. I think things will get better and better.

Michaele,

I agree with what Tig noted (and what you said) that as a result of your SVR, your pancreatic abnormality has improved - that is huge!! I am thinking of all the grief you may never know, and may have prevented in the future by just being SVR now - that is also huge!

I am glad you are getting your cataract(s) done, hopefully that will result in some nice relief on that front.

I hope you will continue to do some research and keep an open mind about whether to consider, or not consider, the advice of your Dr. Death, who mentions lipid treatment and other ideas about osteoporosis. Perhaps with further reflection/or discussions you may learn more, or think about the docs ideas some differently. Whatever will best help you improve any of your conditions, make you feel better, or prevent future risks, is what it is all about. Hard to know what is best to do sometimes. I would give what your doc suggested thus far, further thought/study. Never say never. You don't have to do anything you feel is not in your best interests, but do keep an open mind, and study up on it further to keep trying to weigh risks/benefits/ideas.

Are there any "other" contributing factors, to how you may be feeling in your SVR? Without further elaboration you mentioned "innards have turned to "crap" (excepting your pancreas), and you mentioned doc wants to increase your meds, so I have no idea what other ailments you might have or are receiving meds for, but other conditions other than just being post HCV can play in here. 

I too am having trouble that my HCV pills did nothing but wipe out my virus (which i will be eternally grateful for), I was kinda hoping there was gunna be WAAAAY more magic in dem pills, perhaps cure or improve ALL my maladies. But, I have had some improvements AND the biggest one of all, that trumps all others, is the fact that my damaging virus has been forever obliterated and can no longer wreak it's particular damage!!smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Anna,

You're fortunate to have gone 20 years without the dreadful symptoms and conditions so common with long term (chronic) Hep C infection. Have you considered that since you didn't experience any real problems beforehand, you may be one of those that won't notice any significant differences? That doesn't diminish your successful journey to SVR at all. You're much healthier now, regardless of the lack of noticeable differences. Trust me on this, when you start to feel badly from this disease, the damage is mounting. Celebrate the fact you have stopped the progressive damage caused by HCV before it had a chance to further affect your life. 

Your liver

image.bmp



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Tig

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

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wanted to join in and offer my

whose to say what is normal, the aging process etc? For me lots of things changed age 51-52. Would I have experienced these changes without having taken Harvoni? One will never know. But I am cured of HCV and that is what matters. Lots of our health items are genetic as well.

Normal is a cycle on a washing machine.  

hugz,

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 Michaele,

I know I have said this before.  As bizarre as it sounds, I was really doing well while I had HCV for close to 20 years.  No symptoms.  Took Harvoni for 8 weeks.  Was easy peasy.  No Side effects.  SVR 12 In September.  But I can't say I feel better than before.  I'm OK.  Just not a miracle healthy body revelation.  I'm still so thankful to be rid of the dragon, but I do find the journey weird.

 



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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!



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Hi Tig56    Hope your doing well. I really feel the Harvoni excellerates aging , but maybe Hep C keeps one young. I think tx was what removed the mass/cyst.

  Men get osteoporosis, too.  So take some calcium with D everyday. I take mine at nite with snack  , as now I stop chugging coffee at noon . Im almost senile with out the coffee , tried no coffee and after a week in a fog I decided there had to be a way.  Answer was to take supplement several hrs after last cup of the day. Getting cataract surg on the 14th , it will be nice to drive at nite without headlight daggers hitting my eyes.   Have a Good Life      Michaele



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Tig


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Hi Michaele,

Sorry you feel so poorly. I have no personal experience with Harvoni, so I can't relate to it, but there have been other complaints from treatment. There isn't as much attention being paid to these complaints as should be, so it's good to share the experiences. The depression is real troubling. I have continued to deal with it myself and it's no fun... Good ol AD's have worked for the most part, realizing it has been this way, only worse, pre treatment and on for ages. It's better and I'm good with that, for now... 

That's great news regarding the pancreatic mass! That had been an issue for quite awhile. That's huge! Your new doctor could be a bit less frightening in her approach. I'd point that out. The statins are useful, but have their own set of side effects. Hopefully you will figure out another option, good luck.

If coffee affects calcium absorption in the bone, I'm going to have problems. I live on the stuff!

I hope you keep in touch so we can follow things with you. It's good to talk about and it helps others looking for help. 



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Tig

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

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Ditto Jimmy K   What is normal? But I really noted a decline since the Harvoni .  Michaele



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Michaele wrote:

Hope everyone is doing well, but sounds like the Hep C is gone and everything else is questional. Sometimes I think I miss it.

 XOXO Michaele

 

 

 


Greetings,

The..".. sometimes I think I miss it..." comment is worthy of note.

I understand what you are saying. Prior to becoming UND, I always had a "reason" to feel less than great. Less than young, strong as I remember, fast as I can recall and the feeling of being invincible.

I always was able to point to Hep C and say, well.. "I have Hep C. Of course I feel the way I do."

Once it was gone. Dragon slain. The Fire in the belly of the serpent doused and arrested, I had only my pre-Hep C days to look back on and long for, questioning why not?

Fact is I am now 63 and have no idea what a "normal" 63 year old man is supposed to feel like. But in all honesty I look around at those around me, in the same age group, and am quite thankful believing I must feel abnormally good because they all look fat and miserable and I am not.

I am committed to realizing I am 63 and a century ago would have been an oddball having lived so long yet here I am today, not knowing what an older man should feel like but at the same time recognizing, I probably still don't.

The not knowing what I should feel like, given my age, and no longer having Hep C to be able to blame for how I feel, sometimes leaves me thinking, ".. sometimes I think I miss it..."

For about a minute, and then I thank God for the Cure, and the Sun that came up today, on me and mine. wink

 

JimmyK

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hey Bills and others , Its been 2 yrs since EOT and I am more depressed than ever.  Had CT few weeks ago and my innards have turned to crap, but I dont have that pesky pancreatic mass anymore . Im trying to figure out how anyone with all the clean living and eating can be going down hill so fast. I have no idea if my liver is healing  but last labs were all normal except  for platelets and LDLs . Hope everyone is doing well, but sounds like the Hep C is gone and everything else is questional. Sometimes I think I miss it.

ECU residents have changed again and my new DR, Dr Death keeps calling me with all kinds of scarry advice  , suggest more meds , higher dosages. I tell her I will work on diet and exercise more. She said, I need statins and meds for osteoporosis . When  did I get that old? I never has elevated LDLs before, and guess all the coffee Ive been chugging decreased calcium absorption.  Have a wonder life   XOXO Michaele

 

 

 



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Thank you!



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PZ

genotype 3

sot. 12/11/14

eot. 5/15

Sovaldi and Ribavirin for 24 weeks

clear of virus as af 4 /16

 

Tig


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Hi Phyllis,

Since this thread is about Harvoni problems, I don't want to take it off topic. Instead, feel free to start a new thread in the Post Treatment section. Also, use the search function at the top center of the page, enter Ribavirin and you'll find lots of discussions we've had on it. You can also look through this article, it's an oldy but a goody and talks about it in depth.

Ribavirin



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Tig

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

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Seems like my energy level is lower since treatment. Is like to read an in depth study about Ribavirin. I probably wouldn't understand it! But it has done so many things to me mentally and physically. I will be very grateful to get back to normal. 

Phyllis

 

 



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PZ

genotype 3

sot. 12/11/14

eot. 5/15

Sovaldi and Ribavirin for 24 weeks

clear of virus as af 4 /16

 



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Thanks Tig for your response. Since I am 18 months eot it seems like I'd be back to normal. I am doing better than a year ago. For sure. My doc added lithium to go with other antidepressants. anyway, I sure am tired of all these pills. I trust at some point I will be back to normal emotionally.  

Phyllis



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PZ

genotype 3

sot. 12/11/14

eot. 5/15

Sovaldi and Ribavirin for 24 weeks

clear of virus as af 4 /16

 

Tig


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Hi Phyllis,

Glad you found some helpful information here and really hope you stay active on the forum. It does help to talk with people that have been where you are. Riba is a difficult drug and most people have issues with it. The long term effects took a year to go away when I was on it. The depression I had during treatment improved considerably post treatment. It will take on average 6 months for all of the Riba to clear your system. It soaks in and hangs out for awhile! It will get better. Watch the sun, the sensitivity lasted longest. Continue hydrating well, that helps flush the system.

Stay in touch!  



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Tig

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

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Tig,

Thanks for your post. It is encouraging.  It's been a weird day. I'm on 3 types of antidepressants. But anyway it's good to hear some reassurance that we will get better. Sometimes I'm afraid the Ribavirin can do some permanent damage. and it's been the good ole depression and anxiety. But I think I'm slowly getting better...I think. 

Phyllis



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PZ

genotype 3

sot. 12/11/14

eot. 5/15

Sovaldi and Ribavirin for 24 weeks

clear of virus as af 4 /16

 



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I am SVR EOT +12.  Actually at 21 weeks now and my doc still is requesting an SVR +24, but I'm waiting until after the New Year. No real Harvoni side effects post treatment other than have less get up and go than I used to have.  I used to hit the ground running at crack of dawn.  Now I lay around watching TV until about 8AM.  Then go for my 3 mile walk  Then it's about 50/50 if I feel like getting down to my computer work (I am self employed) or just sitting in my recliner and watching more TV - or going to movies with friends.  I did come back from 17 days in Europe last month - so obviously I managed to keep my energy level up there - catching train and planes.  So it's just here at home.  I feel like I'm operating at about 75% rather than my previous (with HCV) 100%.  Hoping time will improve my energy level.



-- Edited by singsong on Monday 7th of November 2016 03:51:13 PM

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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!



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Sleep is medicine.  It's magic for immunity and recovery.

Maybe the makers of Harvoni have advice.  They have a number posted for that reason.  Don't hesitate to ask your hep specialist.  That's what you're paying for.

I'm sorry you are feeling poorly.  Waiting it out is tiring, but necessary.  

Keep taking good care of yourself.

Best to you in your continuing recovery.



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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Thanks everyone. Your input is very helpful. However as for the herbs for insomnia, I'm going to try it after 3 mos EOT just in case I don't get SVR, at least I'll know it wasn't anything I did against doctor's orders. But I did have a brainstorm that seems to be helping - this forum has discussed how 2 symptoms seems to have cropped up post-Harvoni: allergies & skin conditions. Well I just realized my allergies have gotten worse now too. MY main allergy symptoms are BAD headaches & fatigue. So this wknd I took Benadryl to sleep (it causes drowsiness) & bought Claritan for daytime ( before Harvoni my allergies weren't this bad.) MY sleep & headaches & fatigue improved to a much more tolerable level! So we'll see if it continues to help. So far, so gd. AND I'll call doc mon to confirm it's ok to take allergy meds. Without this forum I don't think it would've dawned on me to try this because I don't get the typical runny nose & itchy eyes of allergy sufferers.

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54yo, geno 1a, DX 1983 HCV

TX #1: 1999 DAILY IFN 3mu & Ribavirin for 9mos. Stopped Tx in 7mos due to HCV RNA of 260,000 increased to 1 Million from tx.  

TX #2: SOT 7/21/16 Harvoni. 

SOT: HCV RNA 3 million. F1-F2, NASH N0. ALT 288, AST 116

Current: HCV undetected, ALT 22, AST 19



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Hi awaw5,

I will post a link to the sleep aid I take so you can research the ingredients. I was allowed to take it while on TX but you have to follow YOUR docs orders. 

http://www.nutrition53.com/pages/sleep1

Also try meditation, stretching, bath at night. All things to relax you. 

 



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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 awaw5,

I also think it takes more time (drat). I do feel for you. It IS more than frustrating. Haven't we had enough of waiting!

But, if your doc said NO to herbs, well then, hmm, maybe you can bring the subject of your symptoms up with him again and discuss what things he might be willing to reconsider for you (other than time), in an effort to find you some relief.

You are your own best friend, treat yourself very well. Be well watered, well fed. Also true is that "air and movement is our friend". Without sleep, we can still try to rest.

I too am interested in what people have been exploring and what works for them for insomnia, like your lemon balm and melissa herb. I will have to go off and do some reading up on these now, and I too noted Ari-anna speaking about 5-HTP for depression symptoms - another interesting one I will have to read up on. Somewhere in Observer's thread she speaks of some drops she tried immediately after treatment finished. All interesting to me.

I didn't do harvoni. I've never really had periods of too much insomnia in my life, but I know so many people who do have insomnia that any info with feedback attached is good, just to know about. My partner is a long time insomniac, and just is, has never really tried much of anything for it, maybe a trial run of melatonin for a while, he just rolls with waves so to speak. I can't imagine how people do it! During my rare periods of it, I immediately started looking for something! Wendy mentioned she has a natural sleep-aid she can use, but I can't recall what, if she said. Mostly, my problem was the complete opposite, profound overwhelming fatigue, weakness, sleeping on a terminal level and irresistible uncontrollable marathon naps added to that, just for good measure! I figure either way, lack of sleep, or too much sleep, can just about wreck a person! My attempts with dietary supplementation experimentation were mostly for battling iron overload and joint discomfort (and I only took what they knew about and said was OK). 

Do keep us posted on how it goes, and if your doc lets you try anything.

If and when you do try any "remedies", I'd really appreciate your feedback on what ends up helping.

I am past EOT+24weeks, and I am gratefully seeing slow improvements, so, for me, it is taking time, and I am still making efforts to drink enough water!

Hang in there, be your own best friend during these early days. smile C.

 



-- Edited by Canuck on Saturday 5th of November 2016 02:50:58 AM

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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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.

 

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