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Hep C Discussion Forum -> Post Treatment -> Recovery from "Harvoni" Q & A's Lets figure it out !
Post Info TOPIC: Recovery from "Harvoni" Q & A's Lets figure it out !
Canuck


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Recovery from "Harvoni" Q & A's Lets figure it out !
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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

__________________

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)
awaw5


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Thx!

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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
Tig


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The reason to avoid the herbal supplements during and after treatment is due to the action they often have on either the action of the treatment drugs, or they alter the test results, especially the liver enzymes. So waiting until after EOT +12 assures your test results are accurate. 

Keep active, eat well and hydrate. Get some fresh air and take a walk if you can. It will help! Keep in touch, it's good to discuss it with people that understand. We try anyway!



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Tig

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

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awaw5


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Thx Tig56 & Wendyo for listening! Ya know, I actually had 1 great day & I expected more AT LEAST so/so days sprinkled with some bad days, & just not as bad as I feel now. As for insomnia, there some herbs that have helped me, one being lemon balm, also called melissa herb. BUT I put away all my herbs to the basement because my hepatologist said no herbs, vitamins or liver cleanses while on Harvoni & for 3 mos after EOT. On this board there was discussion about 5-HTP. I'd like to try that. Does anyone know if we really can't have herbs etc until SVR??

__________________

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
Tig


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Recovery from "Harvoni" Q & A's Lets figure it out !
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Hi Awaw5,

Sorry you're experiencing these post treatment side effects. It's very early yet and as Wendy mentioned, it can take several months before you start to feel better. Your body just fought a hard battle, whether you felt it going on or not. These are powerful treatments and your system has experienced quite a shock. Now that you have cleared the virus, it takes time for things to straighten out. It will happen but not in a matter of weeks. 

Start by reveling in the knowledge that you're undetected! That's a huge accomplishment all by itself, don't lose sight of that. It's vital that you keep up the same hydration routine that got you through treatment. 2-4 liters of water daily, without fail. The Harvoni clears quickly, usually within a week, it has a short half life. The changes it has placed on your system are another story. It will improve, I'm certain of that. 

Best of luck and health to you and your Dad! 

PS: Don't know about the paragraph break. That hasn't been mentioned before.

 



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Tig

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

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wendyo


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Hi awaw5,

Keep pushing the H2O. It will help flush the harvoni out and help with the headaches. Took me a few months to feel better. I too suffer from insomnia and I take an all natural aid to assist staying asleep. I can fall asleep but have trouble staying there. After treatment I was feeling tired and moody a lot and did get my thyroid and hormone levels checked. For me it was menopause related. As they took me off the pill (which helped with my mood) I did go on a low dose anti depressant. My body temperature gauge is so off it makes me laugh. Occasional hot flashes and then other times quite cold. But I will take this anyday as I am HCV free

hope you feel better,

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

 
awaw5


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Btw- I made separate paragraphs for my post but somehow it all got smushed together. Is it because i am on Activeboard Moblie?

__________________

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
awaw5


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I wanted to wait for more time to pass before I shared my experience post-Harvoni, but since it is after 12 midnight & I still can't sleep -well here it goes. I AM glad VL is undetected still 1 week after completing Harvoni, BUT 2.5 wks after EOT, I didn't think I'd feel this poorly! The insomnia that started on the 3rd mth of treatment hasn't abated. The headaches that got worse with treatment have continued & some days are WORSE than when on treatment! As others have expressed, I have been feeling very irritated at small things. My insomnia isn't bad though because I usually feel ok sort-of, the next day. It only lasts about 2 hrs & I end up sleeping 7-8 hrs which most people normally get anyway (I usually need 9-12 hrs sleep). BUT I can't stay up & accomplish anything for those 2 hrs. I like to read, but it's hard to even do that. I don't even feel comfortable in bed - it's hard to explain. I just finished crying out of sheer frustration. Treatment is over so I should be able to get together with my dad (who's on chemo) for lunch but it seems like an overwhelmong task to me, not to him... Also a new phenomenon is I have cold hands & feel cold at wk when all of my adult life (since I've had Hep C), I usually feel warmer than other women at wk. Wondering about my thyroid but I want to TRY to wait until 3 mos pass & "things settle down" to look into that. Does anyone know how long it takes until Harvoni "washes out" of our system?

__________________

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
Sydhanrahan


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Hi Roey,

we never mind Pablo being long winded - he says what a lot of us feel. That depression and anxiety are with a lot of us from adolescence and we become self medicating depressives - on whatever it takes - to alleviate the pain. Hence Hep C - that was my track too. Maybe not yours but have a look at the last 12 months - losing your mother is still very recent.

In addition you have had the Hep C treatment journey which is a ride no one who hasn't been there can really understand. There's highs but a lot of anxiety, blood tests, doctors trips - plus the side effects and the big will it work question.

Cut yourself some slack - no wonder you are feeling vulnerable. Trying to change that self talk which has rattled around my head my whole life is a challenge. One way or another, we are in a better place to find strategies that work for each of us.

take care,

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
Pablito


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Hi Roey

Glad to hear about SVR.  Re depression and anxiety, I can relate.  I find CBT techniques good for anxiety, less so depression (though many find this useful for depression too).  Healthy eating, exercise and good sleep really help both too when I do it, but to be honest I find it hard to keep going with exercise. I've also had longterm psychotherapy too.

At this stage though - many years down the line - acceptance of these problems is key...yes, my mood is often low and anxiety is debilitating, they don't define me....I am not my mood.

It is hard though if one's baseline mood is low to enjoy day to day life fully.  I'm pretty sure depression and anxiety were my route into addiction, which in turn lead to HCV.  On the upside, since going UND the anxiety and depression are substantially better.

Long-winded, as usual, Pablo.



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.
Phyllis


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I understand what you mean regarding depression and anxiety. EOT for me was May 2015. So I don't understand what the medicine does but it really is tough. 

I do hope you feel better. 

Phyllis



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genotype 3

sot. 12/11/14

eot. 5/15

Sovaldi and Ribavirin for 24 weeks

clear of virus as af 4 /16

 
tomyboy


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Hey Bill, Great to hear you are still SVR sorry to hear that you are still depressed and have other medical issues. Bill, you remind so much of Tom as he had numerous other medical issues which interfered with his treatment. Blood clots though. what a shame. Are you still being treated at NY Presbyterian for these medical issues? Thinking of you and praying for a positive outcome for you. You've been down a tough road yourself and pray you find good health in the future.

Tig,

Thanks for the nice comments. We are very excited and happy at how things are going. I go to the eye institute in Manhattan Tuesday to see if my eyes are permanently damaged or if there is something they can do for me. Tom is flying high, but we are waiting on that VACATION still, as I'm still afraid to book for this year as I haven't had a follow up brain MRI yet, and go for another swallow eval in May. Don't want to take any chances just yet. But I wills say, if we make it through this year without a hitch, another trip to Ireland may be in our future along with a nice long cruise. All the best, thanks for the support. Laura



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Cinnamon Girl


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tomyboy wrote:

Tom has not mentioned having any allergies since completing harvoni. Actually, he just went to his gastro doctor locally and was told he was on automatic pilot. Tom is going to miss seeing most of his doctors as they have been treating him for over 20 years. He will continue to go to the city for his MRI's and cancer check up's but as for his hep C......it is GONE. I will keep you posted and ask if he is experiencing any of these things. I don't notice any depression, red eyes or anything. The only thing I do notice is that he is thrilled he finally beat the dragon. Good luck all who are experiencing side effects after completing treatment. Grateful Tom didn't. Guess that is one break, he finally got. That is to people who know our history with him. Best to all. God bless, Laura and Tom

Hi Laura, great to hear your news, I`m so happy that Tom has beaten the Dragon!! Congrats to you both, you`ve been on such a long and difficult journey, and you deserve a break from those endless appointments! Sounds like he`s doing great, and I hope you are too.

Do keep in touch and I wish you both health and happiness! smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

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

UND @ Wk.4, UND @ EOT, 

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

 

 
Cinnamon Girl


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Roey wrote:

Hi all, Tig, cinnamon girl and, Bill, I'm now SvR free but this depression and anxiety is really kicking my ass. I also have terrible joint pain in my shoulders that it gets so bad that sometimes I need to have my S.O. Rub something like Ben Gay, into my shoulders It's called capsazine. The worst thing is my depression and the anxiety. I really can't function and don't know how to cope. My Mom passed away on July 31,2015. We were very, very close, so I miss her terribly cause my dad died when I was 5 years old, which made us very close. I'm on anti depressant and anti anxiety meds right now and I'm still depressed. The anxiety cleared up a bit. Anyway, I'm grateful that the Hep C is Gone. I'd thought I would never be able to say that I'm Hep C free, a now I can say it! Hope every is feeling better and coping with life a lot better than I am. Take care, Roey

Hi again Roey, I`m glad to hear from you again, but sorry you`re having these health issues hanging on since your EOT. Depression is very debilitating, I know, because I`ve had bouts of it myself over the years. The joint pain in itself must be getting you down as well as the fact that you`re still grieving over the loss of your beloved mom. I agree with Tig that if your medication is no longer working you really should talk to you doctor about changing to a different one that suits you better. Your quality of life is important and you deserve to be able to enjoy being free from Hep C!

Also, have you had any bereavement counselling? I found it very helpful after I lost my own mum, 3 years ago. Just a thought anyway.

Please do keep in touch, and I hope you`ll find some relief from the pain and depression very soon! smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

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

UND @ Wk.4, UND @ EOT, 

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

 

 
Tig


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Hi Laura and Tom,

The good news keeps coming!! I'm glad to hear Tom has been relieved of a portion of those endless appointments! That must free you up a little more too. I hope you're on the mend as well and enjoying your return to work. I think it's time to start putting those plans for the "great vacation" into gear! You're both impressive Warriors and I'm proud of your determination and dedication to winning. Knowing you did it is great, doing it together is amazing!smile



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Tig

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

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Tig


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Hi Roey,

The depression can be the most difficult thing to deal with IMO. If you have been on the same meds for awhile, it may serve you well to talk to your doc about some changes. There are some new approaches that are worth investigating. Don't settle for the status quo if you're not satisfied. We all came a long way, don't stop now! The joint aches and arthritis may be relieved symptomatically, but they should also be addressed when they impact your quality of life severely. Hang in there, we're all planning on better days ahead. The wait for those improvements is often the most difficult. We achieved SVR (yeah!), the rest of the good stuff is hopefully on the way soon!



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Tig

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

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tomyboy


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Tom has not mentioned having any allergies since completing harvoni. Actually, he just went to his gastro doctor locally and was told he was on automatic pilot. Tom is going to miss seeing most of his doctors as they have been treating him for over 20 years. He will continue to go to the city for his MRI's and cancer check up's but as for his hep C......it is GONE. I will keep you posted and ask if he is experiencing any of these things. I don't notice any depression, red eyes or anything. The only thing I do notice is that he is thrilled he finally beat the dragon. Good luck all who are experiencing side effects after completing treatment. Grateful Tom didn't. Guess that is one break, he finally got. That is to people who know our history with him. Best to all. God bless, Laura and Tom



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Roey


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Hi all, Tig, cinnamon girl and, Bill, I'm now SvR free but this depression and anxiety is really kicking my ass. I also have terrible joint pain in my shoulders that it gets so bad that sometimes I need to have my S.O. Rub something like Ben Gay, into my shoulders It's called capsazine. The worst thing is my depression and the anxiety. I really can't function and don't know how to cope. My Mom passed away on July 31,2015. We were very, very close, so I miss her terribly cause my dad died when I was 5 years old, which made us very close. I'm on anti depressant and anti anxiety meds right now and I'm still depressed. The anxiety cleared up a bit. Anyway, I'm grateful that the Hep C is Gone. I'd thought I would never be able to say that I'm Hep C free, a now I can say it! Hope every is feeling better and coping with life a lot better than I am. Take care, Roey



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58 y o female genotype 1a naive to treatment, 2-1-15 start Harvoni 
Tig


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Hi Vic,

Big congrats on the one year SVR anniversary! Excellent news and no reason to worry about relapse, you're a winner. The risk of that is so low by now, it's not visible. 

Now the complaints about increased allergies during and after Harvoni seems to be real. The incidence is difficult to put a figure on, but there are others that make the same claims. I have included a link that expands across several forums, so you'll see posts from a number of people and places discussing the problems you mention. Don't let your dislike of trips to the doctor deny you the comfort you seek. Good luck!

https://treato.com/Harvoni,Allergies/?a=s



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Tig

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

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wendyo


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Congrats Marsha and thanks for sharing about the brain fog. That is the one I await to get better. 

Vic - I have allergies that seem to have gotten worse the past few months. Especially my eyes. Not sure if it is eye strain (computer) not helping or what. Started using Naphcon A and it helped (me). I have the eye issue they refer to as surfers eye and the drops help the dry eye, itching, all the symptoms from bith that and allergy. Not sure about the hives so check back as others here will chime in. 

All best,

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

 
Bestmomy


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Hello everyone! I'm a year off 12 weeks of harvoni and testing clear still 9 months end of treatment. Yahoo!!!!! I was very fearful I didn't clear just after finishing because I was so sick with a flu, and then went into a low level depression that has gotten much better. Last December I started developing allergies that I didn't have ever and it makes me worry of relapse. My eyes are so itchy and red and swollen and I get minor hives every night. My doctor released me last December saying I was cured of hep c. Has anyone else experienced this? I have the typical joint problems that everyone mentions and I'm hoping this will get better also. But the allergies make me think I should have more blood work but I'm so tired of going to the doctor.

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Hi Marsha. Congrats on the SVR-24! That's pretty impressive for someone who was told that they failed treatment. I'm sorry your only alternate medical provider option will require you to travel far but it may be worth it to get away from Dr. Frankenstein.  I'm glad your brain fog is getting better and wish you well on getting some relief from pain via therapy. Your low platelets should not be a big concern, an that should continue to improve. Keep us updated on your continued progress and enjoy your Hep C free life. 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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coolheat


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Hi everyone, and hope all is well with you. Have been still recovering from the Harvoni.

Just got my 6 mo. report. Its "dead". Still have like a dermatitis on arms and inside of knees and on shoulders. It comes and goes, almost like an auto immune response. Leg problems I was having are caused by stenosis of the L 4-5, besides all the other bulging disks and catywhampas verts. Mention only because it was not a big problem until half way through tx. Have started aqua  aerobics X2 @ wk. and other meditation practices in groups locally. Blood pressure dropped to normal. Also taking voice 101 at local college. Feel like I have to sing about how glad to be here. Brain fog is getting better, wish it move along faster. It is a definite feature of the Harvoni.

Because of a "Good o'l Boy" system that is alive and well in our area, I have not been able to secure a new Dr.. Thought I had it handled, but am back to sq. 1. Will have to drive a distance, I guess.

Harvoni works, anyone considering, won't be disappointed, they will be extending their lives and increasing their quality of life. I am also putting up my latest lab reports. Plts are still low, might be that's just where they are period. I also seem to run on a regular basis low on potassium.  This harvoni train met the world to me going through tx, day or night with insomnia. Thank you all for being there for me and hope my posts have helped you in return. I will be here more to cheer for our new peps and the regulars. What a Blessing            BIG HUG to Tig   :  )



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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
wendyo


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reporting back in from seeing the dermatologist;

He has other patients with HCV but no one has shared with him that they were or are on harvoni. I am the first. So he has no baseline for comparing what I shared about aging/skin concerns. I did help him in the past as he had noticed patients with squamous cell carcinoma appearing in the red ink of tattoos (fortunately not me) and he always made a point of bringing his interns in to see me and learn how to examine a heavily tattooed person, so I have hope/faith that he will keep an eye out for his HCV patients. 



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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

 
Cinnamon Girl


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Hello Ari, thanks for sharing your concerns and I do understand why you feel this way.  I`ve read your bio and I can see you`ve been through a lot of trauma and distress in your past, and I think that fact that you`ve completed your treatment is a big step forward for you, and shows your strong spirit and courage. 

While I`m feeling very optimistic about your future SVR and the positive changes that being cured from Hep C will give you, I think that the topic of dealing with the changes in our lives that an improvement in health, energy and independence can would bring is well worth discussing, maybe on a separate thread.  It`s certainly something I experienced after getting so much better after I cleared the virus after being infected and ill for over 40 years.  And although I`m extremely thankful for that, I did need to go through a period of adjustment in many ways.

The thought of change can be scary, especially when you`ve been through a lot of difficult times, but with an improvement in health, which we all hope for, we usually find unexpected benefits and renewal appear in our lives, so try not to be too worried. 

Wishing all the very best for you, Ari, you deserve a good life!! 

 

 

 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

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

UND @ Wk.4, UND @ EOT, 

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

 

 
Ari-anna


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I am interested in what Nirmalee has said about her depression becoming worse since coming off treatment. I am ok at the moment myself however I have concerns as I have been previously diagnosed with having Adjustment Disorder - where a person becomes overwhelmed by changes in their life, causing depression.

While on tx I started talking this over with my counsellor as I have been unwell for 45 years now and it probably has become a part of my identity. Although I am still tired from tx and am not yet declared SVR sometimes the thought that I could be a lot healthier and more independent than I was leaves me wondering if I will cope with the change.

I have not seen this side of recovery discussed on the forum - maybe I have missed a topic and posts somewhere? I certainly would be interested in hearing what other people think.

Also, I agree with Nirmalee - if you are feeling depressed and it is lasting for some length of time, seek help.

 



__________________

Genotype 1a diagnosed 2005, Cirrhosis.

Pyglated Interferon/Ribavirin 2006, non-responder 

Viekira Pak/Ribavirin 24 weeks, virus undetected EOT 12 weeks SVR Feb 2016

New Zealand 64 yo
dragonfly


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Hi all, I have to say that the depression since my clearing the virus has gone off the scale, maybe being focussed on finding a cure helped.  It is crippling and distressing and difficult to explain to family and friends because they are like 'what have you got to moan about the treatment worked'.  yes it did and I am so grateful for it but 40 or so years of being infected takes a toll on you.  You think SVR whoo hoo but you have to remember your body has taken a beating and it's difficult to ask for help but you should.

Nirmalee xx



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Groupergetter


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I'm depressed that I didn't buy any Powerball tickets :)   Hope all are having a great New Year.  Gracie and Wendy,  SVR is in your future.  That will be the best reason throw a party.  Would really be great if we could all get together and celebrate.   Tig, when you win the Powerball, drinks are on you :)  Make mine a cranberry juice spritzer.



__________________

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.
Gracie


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I have one thing to say ...

WIN THE POWERBALL TIG AND LETS PARTY!!!!

A non alcohol, healthy food party with a few Oreos for old times sake.



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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.
Tig


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Gracie,

How about we set up a special fund here and rent a really BIG BUS or maybe even a really BIG PLANE ("The Plane, The Plane" who remembers that show?) We fly around and pick everybody up and have one great big SVR party. Lots of good food, we can have our newest member Mike, the Chef, plan the food, RC can be in charge of music and Brownie will handle the entertainment. We can start in Key West and use the bus to hit all of the Florida hotspots! If I win the Powerball tonight, we'll make plans!! I bet there will even be enough money left over (and then some) to pay for everyone's treatment. I better get out and buy some more tickets.....  The current value of tonight's Powerball is $1.5 Billion, with a B! We could probably have some fun with that, lol biggrin

Don't let that depression get you down, none of you. If we can beat the Dragon, we can beat the blues too. All we need are the right drugs, a few weeks and each other. Stay positive my friends! There are great days ahead...

 



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Tig

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

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Gracie


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That's it... We are all moving down south and living with Tig. Then I won't have to deal with the 35 cm of snow we got today... Lol. I don't think I'm depressed, just overly annoyed at small things. Could be the stress of waiting to see if I'm SVR or not. 



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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.
wendyo


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Tig and all - I am seeing the dermatologist Monday (yearly check in seeing as I live in FL) and will being it up.....keep you posted. And for the laugh of the day, I wrote myself a note so I don't forget ....can we say brain fog lol 



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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

 
Ari-anna


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I've had problems with depression most of my life - also had Hep C most of my life!!! I was first diagnosed and treated about 10 years ago by my naturopath who prescribed 5HTP, a natural remedy that is easy on the liver.

whilst on Interferon and Ribovirin I had a serious episode of depression and was referred to the local Psych Emergency Services. The psychiatrist I saw was from Germany where, apparently, 5HTP is commonly used. He told me that 5HTP was the best thing I could be on in my situation. I understand that this psychiatrist has since spoken to the Hep C team here and they are now open to the use of this remedy.

When I was in hospital in 2013 recovering from some very serious surgery I was off all natural remedies as my situation was too precarious to take any risks. Once again I became depressed - my gastroenterologist supported me going back on the 5HTP. It has been well researched so the pharmacologists can check out its inter-reactions.

While on Veikira Pak I continued with 5HTP - Abbie Vie had researched it and approved it's use. They had also researched St Johns Wort and that cannot be used with Viekira Pak.

I have also tried several other ADs, the latest being Citalopram. None have worked and all have given me intolerable side effects. I get no side effects from 5HTP.

Regarding winter blues (or Sadd) one of my son's suffered from this - he uses 5HTP over the winter. 

5HTP is a precursor to Serotonin, it helps the body make Serotonin. Serotonin is necessary to make Melatonin which helps us sleep.

Word of warning - do not take 5HTP with other ADs and do check out it's inter-actions with other medication first.



__________________

Genotype 1a diagnosed 2005, Cirrhosis.

Pyglated Interferon/Ribavirin 2006, non-responder 

Viekira Pak/Ribavirin 24 weeks, virus undetected EOT 12 weeks SVR Feb 2016

New Zealand 64 yo
Bills


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I'm getting more depressed seeing all this depression lol

I am clinically depressed and been on welbutrin /or  lexapro about 8 yrs now It helps but it comes and goes in waves. Some think it's partial due to being buzzed or drunk most of my life. Its been very hard to keep looking for the anti depressant that may really work for me. Mainly trying a new drug every few months when being in 4 different treatments would have been risky to success in HVC TX I stayed with these 2 safe choices. For me to say it was harvoni would be unfair. I'm treating blood clots in my liver ( near the portals ) 10 days away for my 3 months of lovenx ? 2 injections a day I'll get CT scan next week. But its always something that happens that interferes with the another. It's no wonder were depressed. But as you all also say I'M Undetected post TX over 6 months now and that's starting to sink in does give a warm and fuzzy 

BillS     

 By the way nice to see you fourlocos



-- Edited by Bills on Wednesday 13th of January 2016 06:27:01 PM

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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

Tig


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Hi 4L,

Nice to see you again! I know you have mentioned the wrinkles and skin changes previously and have a question. Have you discussed this with a Dermatologist? I would be very interested to hear what a specialist had to say. You're not the only one that has mentioned having some post tx skin issues. You can also report your long term experiences with the FDA and Gilead. They should know about these problems as well.

Winter depression isn't unusual, especially when it's below zero and constantly gray outside. That kind of weather was one reason I used to pack my boxes and move to southern Florida. We even have a dog beach here, so come on down!! I hope you get to feeling better. Stay in touch, it's nice having you around smile



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Tig

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

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fourlocos


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I would have to say I am more depressed since treating.  I never felt depressed before.  I would say it's my like the blahhhhhs as well.  But I also agree it's because I am worn out.  Tired and dragging my ass far to often.  Winter sure doesn't help it.  What does help me is my long walks in the woods everyday but the single digit temps have killed that for far to long.  I walk with my dog in Home Depot and Lowes just to get our legs working but it isn't the same.  I need fresh air and sunshine!!!  I know aging is half my battle here but seriously I don't know anyone who went from no wrinkles to triple wrinkles under their eyes in one year.  I accept what is.  I have no choices.  But it does irk me to no end.



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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!
Gracie


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So it appears I have a frozen shoulder. Probably not caused by harvoni, but thought I'd mention it just in case anybody else has one. And also because I just feel like complaining about it because it's so darn annoying, and we are in the middle of a snowstorm.

Is it Friday yet? Lol... I need a sunshine vacation. 



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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.
dharmabum


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One year after treatment:

depressed, therefore fatigued.

no, fatigued therefore depressed.

who knows, but at least HCV is gone.

I agree with others.  My skin texture has definately changed.  Prior to Harvoni I had a porcelain glow to my skin.  That is gone and it will be missed...



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Joann

 

Geno 1a  - failed Tx Inc/Int/Rib - Tx Harvoni 1/14/15 - UND at EOT 4/7/15, 7/7/15, 9/9/15, 12/04/15, 10/26/16
wendyo


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I wanted to chime in regarding the depression.....I was on AD rx prior to interferon and during. Was able to get off it per Doc's approval and have not had to go back on. Some people's depression is situational and other folks have chemical imbalances so anyone struggling in this area please talk to a professional. It is a scary thing and in my years in recovery, I have seen people tell others to stop taking meds only to have them hurt themselves or worse.

Only off the harvoni a month but my skin is not the same for sure. I will report more long term effects (if they crop up) as I continue the journey with you all. 



__________________

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

 
Gracie


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So yesterday was a bad day. Had the blahs all day. The closest to depressed as I've been. Then last night, my right arm started aching- inside my arm, and up into my hands. I had to take a tylenol and get a heating pad out. Once I went to bed, I slept for 11 hours which I NEVER do. I feel better this morning, but these after sides are real and strange and have to be inter-related somehow.

Going out for a walk today, try and work off some of these blahs, although I do feel better after all that sleep and my hand feels fine, so far anyway.

and the beat goes on ....



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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.
Tig


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I know I'm not speaking from personal knowledge of Harvoni, Sovaldi or any of the new drugs treating HCV, but I want to throw out my experience with depression. 

I never had a day of depression, serious depression anyway, in my life. Not that is, until the weeks following my initial HCV diagnosis in 1996 and starting an Interferon monotherapy protocol. My doctor, a hepatologist didnt bother to mention that depression may follow. Two weeks after I started treatment, it was like someone threw a switch and I was hit by crushing depression. It continued and two weeks later I saw my doctor and told him I was about ready to find a bridge and jump off. He then informed me that HCV and Interferon were known causes. "Well, thank you doc!" I expressed my thoughts on his failure to advise me ahead of time and he started me on Zoloft, an antidepressant (AD). It thankfully stopped the worsening depression, but it has never been fully resolved. I have tried various medications over the years, stopped them for a time to see how I would feel and never did return to that happy go lucky guy that I remembered. 

When I started treatment again, this time with Interferon, Ribavirin and Victrelis, I knew I was in store for a real battle with depression. I requested and received a prescription for an AD, pretreatment. It helped head it off at the pass, but I still recognized Mr. Happy was/is still in my past. Something changed and that is something I have had to accept. 

I discussed this with my doctor when necessary, but have had to realize (after the discontinuation of the AD following my last treatment) that my moods were pretty gray and hard on my family, as well as myself (duh!). I came to the conclusion that the AD's helped to correct whatever had been changed, or altered, by either the disease process, or the treatment to destroy it. I don't know what happened, but do realize that something did. I made the decision, after discussing it with my doc and family, that life would be better by resuming one of these medications and it is.

I know my story may be different from yours, but I can relate and want all affected by the ugliness that is depression, to know that it's real and if you're having trouble dealing with it, please consider talking to your doctor about it. There are a number of things that you can do to improve it, you just need to seek the answers. If I can help anyone, please let me know. I don't have all the answers, but I like to think I'm a good listener. We have a lot of good friends and listeners right here on this forum. I think we're pretty fortunate to have such a great group, reach out if you want to talk, it helps...

The sun is shining, all we have to do is move a few clouds out of our way to see it!

                                                                             



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Tig

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

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basser


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its just over a year now since eot.like roey i am quite depressed.i dont know if its the new meds or years of my system battling with the virus.i suspect its a combo of the two.being f4 cirrhotic dont help either.but one thing on my side is im svr.which not so long ago i thought that was never possible. again and again i have to remind myself how blessed i am to be rid of the virus.some days are really hard work when i get really low i also get really fatigued.a vicious cycle.again its two words ive come to dislike time and patience. thats where this forum comes into its own.people have travelled the same track as me and have come out the other side.best of health to you all                                                                                                                                                                                                                                                           w[lliam



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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
Tig


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Hi Roey,

I did see your post on the Happy New Year thread, Jill and I responded there. If you sent a PM, then no, I didn't receive that.

We have had some complaints regarding skin and complexion issues. Four Locos said she looks like she's aged years since EOT. Others have mentioned it too. I'm not aware of any long term depression being mentioned. Anything with Ribavirin or Interferon was very well known for that. The new drugs don't claim to be responsible for these issues, but they are all so new that you have to talk to your doctors about it and insist they share your concerns with the FDA and the manufacturers. That's the only way these issues are brought forward.

Good luck with your upcoming procedure. Please let us know what you find out. Everything you can share is important and we want to know. Adding your comments and personal insight on this thread will help us document the various experiences people are having with Harvoni longterm. It will take some time to gather it, but it's going to be an informative resource.



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Tig

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

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Roey


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Hi Tig,  I wrote to you and jill aka cinnamon girl yesterday but I don't think you received it.  I started my 12 week journey on February 1, 2015.  It was 3 months after Harvoni was stopped that my Dr. Took my viral load which came back undetected.  That was Great, something I thought I was going to die from I along with others help slayed the dragon.  Now to bring you guys up to date almost a year later, I'm having a cystoscopy due to a lot of UTI's, extreme fatigue, messed up looking legs and skin, complexion, and extreme depression.  Is anybody else that finished Harvoni almost a year ago, feeling any of these awful things?



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58 y o female genotype 1a naive to treatment, 2-1-15 start Harvoni 
Linuxter


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Good job Gracie,

Oranges are good and two little ol' chocolates is not bad at all.

Tomorrow's another day and as they say "One day at a time".

I'm a chocoholic so treating my liver well is a bit of a battle ... no Oreos here but I do like Neslie's Special Dark Chocolate Chips ... on occasion.

Now if I can just not have an occasion too often I'll be fine too.

 

Linux

 



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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

 
Gracie


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You'll all be glad to hear I survived the evening eating only two chocolates and two oranges. The Oreos are safe and will remain so until at least tomorrow. I'm totally addicted to "the making of a murderer" on. Netflicts and it's kept my mind off those little brown discs of joy. The liver pain is hard on the nerves but I do have cirrhosis I suppose and it still could be causing some inflammation and pain. Just want it over.... With SVR!!!! 



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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.
Linuxter


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Especially if you were eating this kind ...

 

c73394165987f830295abe832db51942.jpg

Ok, I'd better stop now before I get banned for getting WAY off topic ... sorry 'bout that.



-- Edited by Linuxter on Thursday 7th of January 2016 12:10:39 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

 
wmlj1960


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Maybe all those Oreo cookies have you feeling blue? biggrin

Oreo Cookie Monster.jpg



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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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Linuxter


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Solution for Bathroom Scales

" Fed up with how her diet is gong, Charlene takes a more serious aim at her target weight".

There's a solution for those faulty bathroom scales.



-- Edited by Linuxter on Wednesday 6th of January 2016 11:53:11 PM

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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

 
Tig


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Just remember there are no pain receptors in the liver itself. The supporting tissues and other "stuff" in the area are generally the things that are responsible for the discomfort. There's a loop of the large intestine that passes through that area and if you're experiencing bloating and gas or some other digestive issue, it could very easily be responsible for the discomfort. Now Gracie, if you eat that whole bag of Oreos, you may discover a problem with your bathroom scale as well. Darn things always register high for some reason.... biggrin



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Tig

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

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