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Post Info TOPIC: Harvoni sides and beyond
Tig


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RE: Harvoni sides and beyond
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That kind of goodness will follow you into the future! Once that pesky Dragon is no longer dragging you down, great things are possible†smile†Enjoy that newfound energy!



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Tig

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

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Wonderful to hear how well you`re doing, Iris!

You`ve had to wait so long to get to this point, I know, but better late than never, and your life will be so much better now!

Great that you sold most of your corn dollies, I saw the photo of them and absolutely love them!† Well done, Iris!

Wishing you all the best! smile



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Jill†

(69 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.



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Look at you go Iris. Me too, proud of you. We all wish we had access to those corn dollies, they were neat, loved the dancey/dervishy ones. I am glad you were not too wiped out - excellent! How good it is - this healing within!†biggrin†C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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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Thanks for the great update Iris! Really really happy for you



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God.†



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most awesome irisbiggrinbiggrinbiggrin



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Gt:1a-36yrs†.Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on†3.6.18:.†A1 activity.† f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND.†Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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I managed to get up at 4:30am and out the door by a quarter of 6 to attend the fair where I sold my corn dollies. What an epic day. Pre TX would have killed me and wracked my body to the extent I would have been really tired, ill and sore and feeling like I was catching the flu. I hesitated to sign up for this show because I really didn't know how I would hold up.

Welp 'm shocked and glad to report other than my back being pretty sore I feel ok. wow, that is huge. I woke up with a headache but I'm sure I didn't drink enough water yesterday plus it is very windy today, that always dehydrates me a bit, took asprin went back to bed for an hour and woke up great.

Our show went well, I sold nearly all the dollies and presented a ceremony to promote healing within.

Wish I could put this new me into my younger me, my old body would appreciate it so much more!

Blessings, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naÔve....UNTIL 7-01-18† !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Iris Dragonfly wrote:

Actually I meant this paragraph

"I also wanted to say I had my EOT appointment with the hepatologist yesterday! The blood work was as we expected .UNDECTECTED !!!! She did say come back in 3 months and if I was undetected at that time I would be considered cured...I thought it was a year. I asked for blood work at 6 months and a year, and she said ok."

so, I'm confused.


†eot UND , these daa's are the good stuff



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Gt:1a-36yrs†.Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on†3.6.18:.†A1 activity.† f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND.†Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Yippee!



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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

Tig


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Back when you (we) joined the forum, SVR wasnít considered set in stone until 6 month and/or 1 year viral load testing. In the last few years, through exhaustive studies and comparative analysis, SVR 12 is proof of the ďcureĒ. They have even concluded, though not officially, SVR 4 is only a percentage point or two away from the same determination. I am certain that SVR 12 is the latest golden rule of thumb! Many people, especially old school Heppers, will continue to request 6 month tests until they refuse to do it. Anything after SVR 12 really isnít needed. The proof is in the rates of success!



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Tig

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

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Actually I meant this paragraph

"I also wanted to say I had my EOT appointment with the hepatologist yesterday! The blood work was as we expected .UNDECTECTED !!!! She did say come back in 3 months and if I was undetected at that time I would be considered cured...I thought it was a year. I asked for blood work at 6 months and a year, and she said ok."

so, I'm confused.



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in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naÔve....UNTIL 7-01-18† !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

Tig


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Are you referring to the dreaming, Iris? If yes, then Harvoni has been well known to cause vivid dreams. I donít know if itís the Sovaldi or the Ledipasvir or the combination. More people commented about the dreams with it, than the other DAAís. Come to think of it, more people mentioned deeper sleep on it as well. Dreaming takes place during the REM level of sleep, if I remember correctly. So, itís hard to say how it affects that. Maybe you spend more time in that level of sleep, or the drugs allow you to remember things more clearly. Even though I donít recall dreams very well, I do know Iíve had some doozies and wish I could have them again! Iíve also had plenty of them that Iím glad I donít remember...



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Tig

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

Hep C FAQ† †Lab Ref. Ranges

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Hi, thanks Tig, honestly I get lost in the long threads. Did you happen to catch my question in the last paragraph there?

Good to know that the meds may have been the dreaming thing, but I still want them back...the dreams that is.†

Up here at moms celebrating her 90th, feeing pretty good today.



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in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naÔve....UNTIL 7-01-18† !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

Tig


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We have an existing thread pertaining to this same subject. I would like to keep them as close together as possible, so have made this thread a ďStickyĒ which will keep it near the top of our post treatment threads.

Glad to hear your EOT labs returned undetected, Iris! I never had a doubt†smile



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Tig

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

Hep C FAQ† †Lab Ref. Ranges

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Iris,

I agree with Hoodie - very good documenting. Thorough. It's good to note these things (to actually write them down) as feelings/facts get lost over time and we need to know them clearly to compare how things change going forward.

I think 5 and i both tried extra hard to keep "non-stressing" ourselves as best we could (post-treatment) as i note we both had stuff happening to us for a while after treatment - i would suggest the same for you (if you possibly can) ... keep the activities/stress/demands down (as much as you can) - and keep drinking the water, eat and sleep good - still important. Recovery/equilibrium is part of the process, it will take some time yet.

I recall several people here on the site and several threads discussing "Harvoni dreams"! One in particular, as he was bothered by the intensity of the dreaming.†

CONGRATS!!!!!!!!!!!! Iris. On the EOT UND lab news you got at your doc appointment yesterday! Yay - that lovely UND goes very well with your other lovely labs and UNDS!†biggrinAnd really nice by the way that your doc has already agreed to giving you repeat VL's at EOT+12 weeks, EOT+24 weeks and then again at one year! Great!

Have a good week away from home, just try not to stretch yourself too far for too long. Try to take it a little easy. C.††



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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 Iris!† †I, too, have been having vivid dreams on this. Last night I met (and married)† Jonathan Marchessault, one of our Vegas Golden Knights hockey players.† He has a Lamborghini and is cute as a bug in a rug.† I am a 65 yr old grandma and never knew I had a crush on him. LOLOL.† Here's a pic of his ride.†

(As long as the dreams are GOOD, I say bring them on!!)



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65 yo† 40+ yrs geno 1a† VL 5,930,000† AST 29 ALT 29

Fibroscore .40 Stage F1-2

Treatment naive, starting Harvoni 9/23/18 8 weeks

T



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I forgot one

13. Dreaming- During Tx almost immediately I noticed I was dreaming more or at least it felt like it. I do not have good recall anyway, well I haven't had since I was a teenager when I did have good recall and dreamt quite lucidly.There was the occasional horrendous nightmare and I usually remember those, but this lack of dream recall has been present for most of my adult life. I'm now beginning to wonder it the virus was messing with that also?

Now even after treatment has ended I am aware those lingering memories/thoughts from a dream. I have a journal to jot down things that seem significant, I hope with time this will improve. Will get back about this one.

On one hand not being able to remember has been a blessing, because nightmares would affect my day, but on the other hand I want to remember those dreams where my dad was there or perhaps some relevant message from a distant star..lol, I don't know.

hey Hoodie! love that "train" of hearts, yea! chugging along. I'm feeling a bit better today and have already been out sweeping up a ton of ash tree seeds, boy them is little buggers. Your journey should be winding up soon. We'll see ya on the other side of the tunnel!

Thanks Cheddy, yea...I'm in a hurry to get better , maybe I should ease into it more. I did have a huge weekend at EOT and I may have been catching a cold in the days after, had to take some Cold Calm and drink my special recipe; lemon, cider vinegar, honey, salt, cayenne & ginger in a glass of water for a couple days.†

Today I'm doing ok, I have much to do with that fair coming up and my mother turns 90 this weekend, I'm leaving tomorrow to go to her house. Tying up loose ends here, will be gone for a week.

I also wanted to say I had my EOT appointment with the hepatologist yesterday! The blood work was as we expected .UNDECTECTED !!!! She did say come back in 3 months and if I was undetected at that time I would be considered cured...I though it was a year. I asked for blood work at 6 months and a year, and she said ok.

So there's the update! blessings, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naÔve....UNTIL 7-01-18† !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Geez, Iris. †This has been a long and tough time for you. †I applaud your coping/survival skill as it sometimes takes a lot to get though the treatment process. †Then there's the second phase of recovery you are in now.

It sound like you are getting better, but not as fast as you would like. †Give it time. Focus on what you like and want and continue to take the very best care of yourself.†

As long as I'm daring to make recommendations...do something special to celebrate...anything...a trip, a party, a series of bubble baths, a visit with a nurturing old friend, a bon fire, something that marks the start of a new state of being well.

Nice ideas, but I did have to start on some antidepressants to break the habit of feeling like sh*t. †For me, it worked right away. †My brain had lost it's link to serotonin, I guess.

Again, congratulations on EOT and your long long journey to being HepC free. †



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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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Great job documenting all this Iris! I related to it a great deal and saw some similarities actually a great deal of similarities! Noticed some differences as well, some things you experienced that I did not. Your story is really inspirational and Im glad we could go through this together.†

And since you like my string of emojis this one is especially for you:

† †

This symbolizes how we are here for each other on this forum, and there is light at the end of the tunnel



-- Edited by Hoodietree on Tuesday 2nd of October 2018 11:36:15 AM

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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God.†



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Salutations!

I thought I'd better jot down my complete list of side effects before I forget exactly what went on. I'm going to list them as the most severe first and then with notations as to duration or how I dealt with it.

I suppose I'll also dedicate this thread to the healing effects experienced since completing treatment.†

Iris Dragonfly's Harvoni side effects:

0. Taking the pill Daily within the hour of nine in the a.m. (I started out being real prompt at 9, but as the days went on I slipped and slipped and sometimes it was closer to 10, I meant to ask about this but I never did...hope that will not be a problem, I wouldn't think an hour to make a huge amount of difference) I used my flag of Wales to represent the dragon and traced the track the pill would take over the teeth and past he tongue and down to the liver, "look out were going to get better!" and down the hatch with a full glass of water in my black chalice. I more frequently than not took it on an empty stomach, that didn't seem to affect me at all and never had stomach upset of any kind. About 15 to 45 minutes after taking the pill I could feel it with heaviness to follow.

1. Fatigue- this was the most severe for the first 6-7 weeks. Made worse by exerting self in the out of doors, sun may have been a factor. Felt like a lead weight and this seems to tie into the weakness in#2. This began to lift around 8 weeks. I didn't nap, except a couple times, did a lot of couch potato yoga...(that would =nothing). Didn't have the gumption to do much at all.†

2. Weakness- in my back between my hips and legs mostly, and arms to small degree. This got pretty bad a few times to the point I didn't think I would be able to stand for fear of collapsing. It wasn't that there was pain, it was extreme lack of strength. This was the slug in Peanut butter effect, moving took a great deal of effort. Like above I spent much of the time on the couch, went to bed earlier than regular time by an hour sometimes two. Had no trouble with sleep.†

3. Headache- slightly worse in the first 3 weeks then more of a minor dull ache that was very tolerable at 4 weeks and beyond. Water helped to a degree and I only took a couple baby aspirin on a few occasions in the evening, but I'm supposed to take a daily baby aspirin anyway...wasn't good about that. I didn't want to take any other chemical meds.†

4. Neck pain/sore throat- this was bad in the beginning and was one of the symptoms I remember having when I first got ill in 1978. This lasted about 3-4 weeks and then to a lesser degree through the rest of treatment. Nothing helped this. except the throat a little salt water gargle helped. It was sporadic at times in the degree of pain.

5. Brain fog/confusion- already had this from the virus but it seemed to get exacerbated from the meds. Had some real uh oh moments like forgetting which side the hot water was or where I was driving while in the car. Forgetting things before they happened and thinking I missed it. That was weird.

6. Dizziness- This lasted about 6 weeks. sit down.

7. Blaaaaa- Don't know what else to call it ...all in the ball park of fatigue and weakness, icky, flu-ish, just blaaaa and that would accelerate shortly after taking pill.

8. Hallucinations-† These were minor but disturbing nonetheless because I thought I could see things moving on the computer screen and out of the corner of my eyes, this lasted about 4 -5 weeks, then only sporadically for another couple weeks. Eh, just tried to enjoy it ...must be all the buggies in the brain frying.

9. Sweeping- I don't know what else to call this sensation, but in the first 2-3 weeks I could feel a sweeping sort of sensation going across my brain and to a lesser degree through my body. It moved in waves and wasn't uncomfortable. After 4 weeks I didn't notice it as much.

10. Cooling- Don't know if this was a med effect or the lack of virus effect, but by about 8 weeks I started getting a cool sensation especially across my upper back. The burn of the dragon gone?

11. Energy- Someone said this was a Harvoni high. At about 8 weeks I started feeling a bit better, and was able to tackle† my 30 foot wall of books to add 2 boxes of books inherited from a friend, this was a more rearranging than one might grasp, plus a ton of dust, I got to places I hadn't had the energy to for some time. This continued through the remainder of my 12 week treatment. 2 days after EOT I started to feel tired again, and less motivated. As of this writing I am one week 2 days post treatment.

12. Numb toes- week 12, last week of treatment the 3 middle toes on my left foot went numb. I have no Idea if this was treatment related or an old break being irritated. When the middle of my big toe went numb I ask to move up my dr. appointment. They are referring me to foot dr.

Post treatment observances:

1. Pain lessening- my hands and back hurt less than before. I tried some bread to see if I could tolerate it. Not so much, got heartburn and my joints flared up, was hoping my lack of tolerance was Hep C related. Maybe later.

2. Fatigue- I wouldn't say I'm tired like on treatment, but I am not perky. Also I have complained about dragging my self out of bed always waking just exhausted. Well that has changed. I wake, not refreshed, but not exhausted...that feels pretty huge.†

3. Cooling sensation- This sensation I spoke of above seems to be continuing and I like it a lot. I had hot flashes for over 12 years that started with menopause and always wondered if the Hep C aggravated that I didn't sleep for almost 5 years the night sweats would wake me then keep me awake. Will be keeping an eye on this, so far I haven't really had a flash.

4. Less motivated/melancholy- I wouldn't really say I'm less motivated, more like back to pre treatment doldrums and ho hums, a little back of the mind sadness. This might be caused in part by the season shift, not sure, but I thought I would be more excited to finish treatment. This actually started about one week before EOT, and lingers still.

Ok! so this is what I have so far. I hope to be able to add updates, as I progress.

Thanks, Iris Dragonfreefly



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in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naÔve....UNTIL 7-01-18† !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

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