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Post Info TOPIC: Harvoni sides and beyond


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RE: Harvoni sides and beyond
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iris , you've been thru a lot lately so it could all be related.cry

hang in there smile



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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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Virtual hugs to you ((((((IRIS))))))). 

Its still very early in terms of getting the medications out of our systems. Please hang in there. I think we need to give it more time. You know how they say in the course of an illness that sometimes it gets worse before gets better? I think we may become intimately familiar with that phrase in the coming weeks and months. I think you are going to feel much much better, but its going to take time.

You have to continue treating yourself well and conserving your energy for a little while I think. Ive also been suffering with some of the same problems I had before and during treatment chiefly fatigue but also that electrical feeling that you described? I have that too, as well as itchiness, craziness, anxiety, and paranoia/PTSD flares. 

Please continue talking about this, I think it is tremendously helpful to get it out of your head. Speaking your truth about it is a super positive way of dealing with it. Please know that we are with you in spirit and we want the best for you.  Keep talking it out my sistah!

Big hugs and love to you

 



__________________

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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Iris -- you have my empathy for all these little maladies that are happening. You have had a LOT going on there, and sometimes the stresses of life creep out through our bodies in strange ways. I hope you are feeling safe in your home now. Glad you shared with us and I sincerely hope that you will have time to be gentle with you while your body and overall being heals from all the trauma around you out there. You've been close to many tragic occurrences, so hang in there girl...and lay low as needed.

ps

 



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Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

Club Zero Member.

PoloSilver



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I wanted to give a brief up date.

I seem to be having issues related to the nervous system, not really sure yet and I do not want to say they were Tx related because I did have some of these issues prior. 

That pain I was getting in may back, feeling kinda like some one is cutting off the nerves, like sudden weakness or lack of strength has been present but fleeting, that heavy feeling in my arms and legs same as above, these I did not have prior. The carpal tunnel seems to have accelerated but I have been busy with my hands (as always), my foot numbness persists and is worse on some days, not so much on others. The vision in my right eye seems to be worse, but only slightly. I have had horrible sciatica flares and ones that feel like it may flare then doesn't, this causes blisters on my leg and the nether regions. These herpes breakouts almost always occur after a sciatic attack, well I've had three since completing treatment, they don't usually happen that often, and now I have a blister on my lip that sprang up while I was hiking in the ashes. I don't think I have had a lip blister in 10 years. Wonder if nuclear dust is to blame, or are my nerves just toasted? I also have a low voltage kind of zzzzzz that I can sense internally, and my mouth sorta taste like metal, not real strong, just there.

All for now, thanks for listening.

Iris 

(EDIT..oh ya, and I seem crazier than before, if that's possible, LoL)



-- Edited by Iris Dragonfly on Sunday 18th of November 2018 02:48:33 PM

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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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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One more entry. That way I can be part of this discussion! We have a number of moderation options, but the one we need the most (merging or moving a single post) leaves much to be desired. The subject has been discussed with the Internet service provider and we have repeatedly been given what I consider a virtual shoulder shrug. I will continue to seek a solution. Thanks for the help and understanding!



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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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The solution would be for lamassu and me to delete our posts (There is a "delete post" option under the - More - menu) But I agree with Iris it is more of a learning curve thing and I should have been more mindful about it. Since she's not asking for us to delete and we've already moved on deleting would actually cause more confusion when reading though the thread so I'm with Iris, the better solution is just to live and learn  

Thanks and happy Saturday everyone!



__________________

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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It's really ok, learning curve/teachable moment, stuff happens.

I'm on another forum where I moderate, we are able to move individual posts. Sometimes that does mangle other threads because it merges them according to date. Maybe Hoodie or lamassu can put a link to the post here. Or we can forget it all together, LoL smile

bb, Iris

 



__________________

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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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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Well, it turns out that this software does no allow me to move an individual thread.  I can only merge whole threads but it's easy to loose track of who said what when.  It's so easy for us to hijack a thread as we are responding to various people at once.  The best way to keep a thread on track is to pay attention to the overall topic so we can post relies where they fit.  

Often, this doesn't matter as we are chatting and sharing everything, but in the case of someone documenting, it's helpful to keep it clean.

So, now I've hijacked this thread with technicalities.  I will erase this information after ya'll get it.  

Remember, you can delete your own threads or merge them to your own area.  I can't invade.

And thank you, Iris, for documenting your journey.  It's helpful to other people in the same boat.



__________________

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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Iris, Hoodie, and lammasu,

I agree, the topics have mutated.  I'm trying to fix it but hit a dead end.  Rather than lose any of the information, I've sent up smoke signals for help.  I'll take care of it as soon as I can.

Thanks for the heads up.

When the Tig's away...the trainees fray.

 

Cheddy



__________________

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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they never do, but other medical professionals see it in us and know that the daa's exacerbate anything we already had and that the hcv may have been part of it all along.

in time it should lessen as you recover from tx and your body gets a chance to heal other things besides just fighting the virus.

hang in there iris



__________________

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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Ok, so finally the Hep dr. called back. She doesn't think any of my symptoms are lingering side effects, Guess I'm just crazyhmm



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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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:

No worries, deletion unnecessary Thanks for understanding. 

Ride on Appaloosa woman!! 


 You're incredibly gracious darling Iris



__________________

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. 



Guru

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No worries, deletion unnecessary Thanks for understanding. 

Ride on Appaloosa woman!! 



__________________

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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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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Absolutely let's take this to the Hoodie thread. 

Apologies Iris.

Cheddy if your reading can you move these posts to Hoodies Epclusa Journey? Many thanks in advance. 



__________________

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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Hi Iris, a moderator is free to move or delete no problem. Hoodietree has been posting here and I wanted to make sure she saw the info I had no intention to derail your thread.

Edit: I see no option to delete posts by the way. Sorry about that.



-- Edited by lamassu on Thursday 25th of October 2018 07:20:39 PM

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Male, 65, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. Week 10 VL not detected, ALT 12, AST 18. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24.



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no offence but could you take this important information over to Hoodies thread? This is about Harvoni. Wouldn't want folks looking for Epclusa info to get confused. TY Iris



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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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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Hi Hoodietree,

Its your body and your peace of mind, just tell your doc to quit screwing around and write you the damn lab order for a viral load and LFTs. As long as your insurance covers the cost I would expect your doc to be more receptive and caring. You could remind him/her it is the standard of care to check viral load and LFTs at end of treatment with Epclusa, and then again at EOT + 12 weeks. Especially for GT3 patients.

I don't mean to be a "Debbie Downer" here but you are Genotype 3 and while Epclusa is the best first choice for treatment naive HCV patients with GT3 according to the Astral 3 study the cure percentage at 12 weeks post treatment is lower than other genotypes depending on whether or not you are NS5A resistant.

Please don't stress out about this (I am sure you are cured!) but I would think you need the EOT viral load plus the EOT + 12 week follow up to confirm you are cured. In the rare event you are not HCV undetectable at EOT + 12 weeks you have the evidence to prove to your insurance carrier that they need to cover an additional round of treatment with Vosevi. Again, please don't stress out. I just want you to receive the best care possible.






-- Edited by lamassu on Thursday 25th of October 2018 12:19:57 PM

__________________

Male, 65, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. Week 10 VL not detected, ALT 12, AST 18. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24.



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hoodie! exactly! you want to know if the viral load is down after going thru the treatment.

keep up the asking, someone will take notice smile



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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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Hi lamassu! I have requested it twice now from the nurse and will escalate to the doctor tomorrow or possibly this weekend. The nurse is saying no, they don't want to do a viral load test until January. But I will try to insist Rather I have already tried twice! now I guess I need to bump it up to the doctor and say "I insist!!"  and then hope for the best  



__________________

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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Hi Hoodietree,

Congrats I see you finished your treatment on Epclusa! Did your doctor order an EOT viral load and LFTs? It seems some doctors especially in Canada are just ordering EOT + 12 week viral loads now but after three months of treatment I think we all deserve EOT labs. I would insist on it.



__________________

Male, 65, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. Week 10 VL not detected, ALT 12, AST 18. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24.



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hey iris, my hubs had really bad physical pain too. slowly he is getting better. The docs just don't know what to do for us since this is a treatment for a deadly viruscry

i also remember how depressed i was when i couldn't control my sides... once i made peace with it i was def in a better frame of mind.. i was like "ok, lets just get it done".

as for me, i'd let him marinate in that chewing out... if you can handle it and let go of the guilt then he can't turn around and make it all about you being the bad guy. if he's as hard headed as you say he may never see his part in all of this.

stay strong iris



-- Edited by 5-1-18 on Wednesday 24th of October 2018 06:28:13 PM

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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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Iris Dragonfly wrote:

I really wish I knew if this was related to the Rx Tx or not. I remember all too well the horrible time I had while still having my monthly, I used to joke I only had one normal week out of a month. But I have been menopausal for so long this took me by complete surprise.


Iris! I think you're onto something I think our hormones get out of whack when we have HCV, and then they get back on track somehow after treatment. My current tired spell of horrible fatigue coincides with my ovulation cycle. I'm gearing up for a period in a couple of weeks.  I have a theory that hormonal fluctuations can be attributed to both HCV and the rebalancing effect of treatment. Hormones can make us terribly irritable and tired even when they're heading in the right direction. Even when we're in menopause, maybe especially when were in menopause!

Obviously I'm no doctor and don't even play one on TV LOL so take that with a grain of salt 

In other words, I got it from Pooma University (Pulled Out Of My A$$). But it does sort of makes sense from what I know about hormones.

 



-- Edited by Hoodietree on Wednesday 24th of October 2018 06:19:39 PM

__________________

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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Thanks for the report, Iris.  That's a lot of symptoms.  What does your doctor have to say?  Are the multiple issues related?

Just to reinforce our mantra here, keep drinking massive water!!!! It's still key in flushing things out. You've got a lot to cope with, and remember you are still in recovery.

BTW, hormonal fluctuations do continue post menopause.  It seems they come in from out of the blue, though not as often or as radically,

As for the apology: it's okay to apologize for your behavior and stand firm on your convictions.  I'm not sure he can listen, but you need to let people know what you're going through. Do not live by his example. You'll feel better with each step toward grace.  

Stay away from the brick pile! Be good to Iris.



__________________

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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Hi...thanks you guys, I'm feeling, eh, on the fence this morning. My headache is present but not to the degree of the last three days, but I took aspirin anyway. Not as tearful this a.m. and thankfully mr. *^$%# is out of the house in the mornings. I didn't speak to him for the rest of the day and I'm feeling like I should apologize for screaming at him, but that doesn't change my stance on his actions so I may withhold a "sorry" ...when the hell has he ever apologized to me???? never. Unfortunately I cannot leave at this time, My daughter and I have to meet an insurance adjuster for my moms house (long story) and my washing machine has been on the fritz for over a year and I finally had the repair (nephew) guy out last week. He should be back to fix it today... am currently drowning in dirty clothes and I really hate public laundry mats. I've been filling it with the hose, but now it doesn't agitate or rinse, tired of water all over the garage from the wet willie hose.

I really wish I knew if this was related to the Rx Tx or not. I remember all too well the horrible time I had while still having my monthly, I used to joke I only had one normal week out of a month. But I have been menopausal for so long this took me by complete surprise.

Again I am so grateful to you folks, and Cheddy, Hoodie, Canuck and 5 after reading your comments I was again a blubbering mess but this time it was because some one gave a ****, I really haven't much support here (from friends or family), except daughter, but she at one point was trying to rationalize her fathers action, when I almost bit her head off too...*sigh*

@ Cheddy, that video was excellent and so true and unfortunately I had once taken a brick to the windshield of my ex boyfriends 69 Lincoln Continental. Sheeze that glass was tough, musta hit it ten times before it broke, and then there was my vw bug, I punched the windshield after an argument and it broke instantly no wish he would cheat that would make it soooooo easy. (That sounded bad, huh?)

@ Hoodie, Yes I (try to) meditate, sorry I never answered your other question about a social media meditation type group? I really am not on line much but I did have my Pandora tuned to the Heart meditation channel that was helpful I'll keep at that, (frustrated it keeps turning off after a short while, (I have the free version)) People are still shocked when I tell them I don't have a cell phone, I really need that electrical disconnect. Sorry you are feeling tired, I hope this turns around for you. Anyone who can work and get better is a super warrior!

@ Canuck, You know the open wound thing makes a lot of sense, thanks for pointing that out. Not to mention my brain feel like an open emotional wound. I wondered about the medicine and the brain, I did have some weird hallucinations and had a pretty good one yesterday where I thought I saw our (dead) cat standing next to the tv. It was like a flash, there, then not.

@ 5, LoL ! Patience has probably been my greatest challenge, after that energy burst around 8, 9 weeks into Tx I thought that would be the new norm. I was feeling super deflated and scared that it may be returning, I so do not want to relapse. Now to sweep those negative thoughts away!!! I am my own worst enemy. Grrrrr

Now for the progress report:

My hands are pretty sore still (all my joints became hugely arthritic a few years into menopause) but my back and hips do not hurt as much, rising out of bed isn't such a painful event. I haven't been hiking much and better try that some to see how my hips hold out. I lead a weed walk every Fall through to Spring and feel super out of shape. I want to see the difference in pre treatment and post, because as much as I love hiking it would be a few days recovery after. My carpal tunnel seems to be getting worse, and my toes on the left foot are still going numb. Brain fog was bad in the last several days and even had some trouble finding words but that may have been in association to the migraine. I feel like I'm forgetting something. Well, I was sad to miss the full moon walk, the plane crash was two exits before the off ramp to our location what a mess the 101 was, that was weird. 

Bye for now, Iris UnDragonfly



__________________

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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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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I don't know how to attach a song, but you might get a kick out of Brandy Clark's song "Crazy Women" on YouTube.  Stay away from the matches.  Save yourself first, sister!

 Heal first.

Sorry guys.  We still love you.



__________________

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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Just got home, Iris.  I'm glad to see these wise replies.  How are you this moment?  Please just try to handle one thing at a time starting with putting yourself first.  If you need to grieve, get 'er done.  There is no shame in facing the past.  I just hope you can find yourself a safe place to find respite.  I understand losing my sh*t and going f*ing crazy, but you have had some crazy pushing you into this, too.  

Hang on.  Please report.



__________________

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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Hi Iris,

Just got back on-line not long that ago - we had some power outages around here last night (twice!) and, apparently they aren't finished inconveniencing us yet either, there will be more power outages tonight? Man! I was right in the middle of on-line something last night when we went out!

You sound a bit like me Iris, i had a lot of mixed and some very unpleasant feelings (not so long ago), I reached out to others where i could for some support, but sometimes these things (these times, these events) have no rhyme/reason/understanding. One of my galfriends said it was like a scab that keeps getting picked off/knocked off - and that odd way of looking at my pain did make a fair bit of sense to me at the time - painful sore bits denuded, made newly raw, uncovered from time to time, adding to other pains and woes, making the hurts worse/harder to tolerate, wounds that maybe shouldn't have been exposed at all or so soon, at least not before better/further healing took place (the bandaid off too soon) ... but I do think that these things (times/events) which occur/plague/torture/chase us - need time to find their own proper places, each heals in it's own time I am afraid. There can be a longer-than-we-want, cruel shuffling that takes place which we must endure, until time heals us and sweeps these events, and us and our scars into their proper order of importance.

I think Cheddy hears you right, when she notes the "boiling over", your cup is just too full at the moment. And Hoodie is right about taking care of number one. No choice but to accept was is happening, and no alternate but to do everything you need to to take care of yourself.

Good you share with us, and have an outlet/help like this therapist you mentioned, good you know what to try to do to comfort yourself and help your headache. Keep pulling Iris, it is early days, you are raw, be patient, wait for your healing to come in dribs and drabs. It will come. 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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yep, i get lots of tired! and a lot less tolerant.cryconfuse

there has been great changes in our liver and system so we just have to hang in there.

hubs was at the dr today and as they were talking the doc said "be patient, it hasn't even been a year yet"..... so some dr's know the truth.

no matter what, we were pretty much doomed if we didn't take it; and sooner or later we would be crashing and burning and being crankier just from the virus.

we had to do this treatment to save our lives, and now we have to go one day at a time till we wake up one day and realize our moods and fatigue have gotten better.



-- Edited by 5-1-18 on Tuesday 23rd of October 2018 11:00:30 PM

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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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Iris I'm sorry you're feeling so irritable and sad. I do think this is part of the transition off the Harvoni, yes.

I am Just finishing day 6 EOT off of Appaloosa, and I was great for four days but yesterday I had a fatigue crash. Came home from work early and slept for 12 solid hours. 

You're going to be OK, I promise. But I do think that you need to allow yourself extra time for sleeping, gentle exercise, and proper nutrition. Great that you're in therapy! And great that the pilot of the vintage plane survived!  

Do you have a meditation practice by any chance? I generally hit the meditation hard when I'm in a high stress situation. I should do it more regularly to control my stress but heck I'm only human

I find relationships so stressful, to be honest, that I choose to live alone.  I have good friends and family that I give my attention to, but flying solo works best for me because I need lots of time for sleep and to take good care of myself. Every time  I get into a relationship the guy always wants me to do more for him than I am capable of doing without sacrificing my own needs. I'm simply unwilling to do that anymore. It's way too stressful. 

It's really hard in this modern age that we're living in. Please hang in there and please take some time for yourself every single day. Hoodies orders!



-- Edited by Hoodietree on Tuesday 23rd of October 2018 09:53:08 PM

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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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Whoa, Iris.  I just hit an unsent message to you from earlier, but it does not go with your recent post  My goodness!  What is going on? ??

What I know is that your body will be adjusting for a while, including ups and down, but this is a big one. Have you considered going to your doc to get something to settle you down as you make your transitions.  I don't know if that's the way to go, but I'm very concerned about you feeling so badly and really hate to find you feeling so hard hit.

Your husband has no right to be treating you badly, ever.  Maybe you've just stuffed too much away and it's boiling over.  Any clues from your therapist? I really don't know what to say just yet, but at least want you to know that you have my sympathies.  I will have to give this some thought and will get back to you on this later tonight.

Can you get out of there for a few days?  Maybe visit a friend or hide out on your own.

I know for certain that you are going to feel better.  You're a diligent survivor.  Sorry its so hard now. Many hugs for now.



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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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That's such a great update, Iris.  That was a long haul and you endured a lot!  You might be surprised how much younger that older body feels. I am really just tickled for you.  

Thanks for all the input and good advice you've given along the way.  You've been a real trooper and a fine member of our group.



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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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If I didn't know better I would say I have PMS. (that has not been an issue for nearly 10 years now)  I have felt terribly blue and listless. I am missing my cousin and my ferret, at least those were the first thoughts of yesterday and today, respectively. Will be honoring my cousin soon, at Hallows, but my ferret has been dead over 16 years now. Why would that be my tearful awakening? Included was the worst headache ever, for about 3 days now. And I am exhausted. I have been nodding out in the day time, just little 1 minute...oh, I'll just rest my eyes a bit and then realize I'm falling asleep. I feel like I tried to do everything to get out of the funk... do something I like, exercise, take a shower, go out and do something with people, draw, crochet, cook. Nothing feels good or right and all I want to do is cry, Not to mention about an hour ago I just got home and mr. *&#%@! has sprayed mud all over the car that is parked in front of our house because he doesn't like it parked there. I went ****ing crazy. I mean really crazy, I have been able to hold it together in the past because with him, I have to "grey rock" it quite a bit around here, BUT I told him he was a F-ing ass hole and a jerk and he is going to get our house damaged when they found out who did it. (We don't live in the bestest part of town, it's just stupid to do such a thing.) He pisses me off so much when he is disrespectful of others property, if it were just him that would be retributed upon I wouldn't care but I live here too. After that I flip on the TV and the vintage airplane I just pointed out to the parking director at my therapist's office ( really love these vintage planes and you can here them coming miles away) has just crashed on the 101 fwy. I burst into tears. initially thinking the pilot had perished, it looked bad, but he survived. (There is a group of vintage planes that fly in formation every Wednesday eve, I always run out to see them, must be the pilot in my dad that got me interested) Still, all so strange to add to my strange days.

I guess what I'm wondering is if there is any chance this is related to the Harvoni. Someone suggested it sounds hormonal and maybe my system is resetting??? does that happen? The tiredness is bothersome, and the crushing headache ain't much fun either. Aspirin helps.

bb, Iris

 



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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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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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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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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(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



__________________

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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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 wasn’t 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 “cure”. 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 isn’t 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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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 don’t know if it’s the Sovaldi or the Ledipasvir or the combination. More people commented about the dreams with it, than the other DAA’s. 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, it’s 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 don’t recall dreams very well, I do know I’ve had some doozies and wish I could have them again! I’ve also had plenty of them that I’m glad I don’t 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!

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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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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 “Sticky” 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!

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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! biggrin And 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 

5 weeks VL undetected. AST 16  ALT 10

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

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....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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