Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: Else on November 30, 2015, 12:06:01 pm
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I have so much to be grateful for! My 12 week treatment with Harvoni has, for the most part, been nothing but good. Okay, the occasional headache. But even those were easily addressed with lots and lots of water, a mug of coffee and maybe the occasional aspirin.
I've slept better than I have in years during treatment, so insomnia wasn't a side-effect for me at all. Vivid dreams for the first week or two but those bordered on entertaining. :)
I was "virus non-detected" by week 4, normal liver function tests at week 8, so am anticipating the same for my EOT labs a week from now.
What's improved? Everything! The grinding fatigue that had run my life for years is gone. Joint pain, gone. "Brain fog", gone. It's unfortunate that that last one doesn't have a proper explanation. No, it wasn't hepatic encephalopathy but it was debilitating just the same. And really frustrating that since it wasn't HE, it was treated as nothing at all. The improvement in cognitive function and clarity has been stunning and life-changing.
The peripheral neuropathy that had been progressing this year at a frightening pace stopped progressing upon starting treatment. After almost three months on Harvoni, feeling has returned to my left toes. The outcome of nerve damage is hard to predict, but I'm feeling upbeat that my right foot will improve as well with more time. Was the neuropathy caused by HCV infection? Considering its response to Harvoni treatment, that would appear to be the case. I hope more research will substantiate the reality of extra-hepatic symptoms caused by HCV.
So to all considering or fighting for treatment - do it! Don't give up. Appeal, appeal, and appeal again!!! It's worth it. ;D
I am feeling slightly anxious about these last 7 pills. Like I'm having a security blanket snatched away. But since I was "treatment-naive" (never took medication for HCV infection before) and did not have cirrhosis (had only mild to moderate liver scarring) 12 weeks is considered an appropriate length of time for treatment. **Big sigh** Here's hoping the Harvoni scoured my system for any last remaining viruses.
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Fantastic Else! It's great that you have been able to notice such immediate improvement in your health - and even before EOT.
At four months post-treatment, I can certainly say I am feeling more energetic and mentally functional... more my "old self" (going back many years for that). But in my case I think it has more to do with increasing my blood iron levels (through diet and supplements) from my prolonged period of iron deficiency that I only became aware of post-tx, than from clearing the HCV. Still, I am VERY glad to no longer have HCV chewing away at me! And I believe, over time, that the consequences of finally being free of HCV will improve my health and quality of life in all sorts of ways.
best to you on this last leg of your treatment journey,
kim :)
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Else, what a wonderful testimonial -- SO glad you are reaping so many benefits. I hope the adjustment to no more pills goes smoothly for you. I missed the "Harvoni High" and had episodes of needing a lot of sleep, but now, 2 months after the last pill, I'd rate my energy level as very nearly as good as while on Harvoni (certainly WAY better than before treatment).
Here's to your SVR12 and 24 -- you're certainly on your way there.
Gnatty
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Seven Harvoni's swimming......
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Awesome! Good for you! Yea, Yea, Yea!!! ;D ;D ;D
Just had my first blood draw since starting Harvoni October 23rd. This is what the outcome is just a little over a month into treatment.
I am Geno 1a
had it since 1992
No previous treatments
Dear xxxxxxxxxx
I hope this letter finds you well.
The hepatitis C level is almost zero so significant improvement, hopefully on the next lab test, it will be undetectable.
Thank you.
Sincerely,
xxxxxxxxxxxxxxx
I have so much to be grateful for! My 12 week treatment with Harvoni has, for the most part, been nothing but good. Okay, the occasional headache. But even those were easily addressed with lots and lots of water, a mug of coffee and maybe the occasional aspirin.
I've slept better than I have in years during treatment, so insomnia wasn't a side-effect for me at all. Vivid dreams for the first week or two but those bordered on entertaining. :)
I was "virus non-detected" by week 4, normal liver function tests at week 8, so am anticipating the same for my EOT labs a week from now.
What's improved? Everything! The grinding fatigue that had run my life for years is gone. Joint pain, gone. "Brain fog", gone. It's unfortunate that that last one doesn't have a proper explanation. No, it wasn't hepatic encephalopathy but it was debilitating just the same. And really frustrating that since it wasn't HE, it was treated as nothing at all. The improvement in cognitive function and clarity has been stunning and life-changing.
The peripheral neuropathy that had been progressing this year at a frightening pace stopped progressing upon starting treatment. After almost three months on Harvoni, feeling has returned to my left toes. The outcome of nerve damage is hard to predict, but I'm feeling upbeat that my right foot will improve as well with more time. Was the neuropathy caused by HCV infection? Considering its response to Harvoni treatment, that would appear to be the case. I hope more research will substantiate the reality of extra-hepatic symptoms caused by HCV.
So to all considering or fighting for treatment - do it! Don't give up. Appeal, appeal, and appeal again!!! It's worth it. ;D
I am feeling slightly anxious about these last 7 pills. Like I'm having a security blanket snatched away. But since I was "treatment-naive" (never took medication for HCV infection before) and did not have cirrhosis (had only mild to moderate liver scarring) 12 weeks is considered an appropriate length of time for treatment. **Big sigh** Here's hoping the Harvoni scoured my system for any last remaining viruses.
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Congratulations to you, Bricks!!!
Seven Harvoni's swimming......
Six Corgis praying...
(oh yeah, I'll be keeping this up everyday! ;D)
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So close, Else. So very close. :)
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Wow Elee,
We've been on this journey together and now you finish about 6 days before me. We andd it gal!
My neuropathy got a little worse during tx, with new symptoms but I think it was the ribas effects in the CNS. It seems to be getting better and I have high hopes. So glad for you, it's definitely HCV related and there are many publications on it. The brain fog is so debilitating, I believe it should be grounds to tx immediately. I became disabled because of it. I was told I had brain damage from HCV and it helped me to access tx. It has improved incredibly. I am reading a book for the first time in 4 years. One if my favourites Brideshead revisited. I am a published writer so have obviously not been able to write. I am trying again but it's not flowing the way it used to YET!
Else them benefits from this will just increase exponentially. It is exciting.
Congrats my friend. Cal :)
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Five orange diamonds!!!!!
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Ground control to major Lynn
Ground control to major Lynn
Take your Harvoni pills and put your helmet on
Ground control to major Lynn
Commencing countdown, engines on
Check ignition and may Hep's forums love be with you
Ten, nine, eight, seven, six, five, four, three, two, one, liftoff
This is ground control to major Lynn
You've really made the grade
And the papers want to know whose Pills you took
Now it's time to leave this stage of life behind
This is major Lynn to ground control
I'm stepping through the door
And I'm floating in a most peculiar way
And the stars look very different today
For I am out of Pill's I've taken every day
:D :D :D
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Counting down for Else I was just singing along :)
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:-[ :-[ :-[ :-[ :-[ :-[ :-[ :-[
Well I guess I am not completely free of my sx, that mental fogginess is still there but not as bad. Lynn, I was looking at your sig and was wondering HMMMM. but didn't connect dot to dot, just started scribbling all over the page. lol. anybody got some white out??
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Congradts Elise!
Giving us hope.
Greg
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Ground control to major Lynn
Ground control to major Lynn
Take your Harvoni pills and put your helmet on
Ground control to major Lynn
Commencing countdown, engines on
Check ignition and may Hep's forums love be with you
Ten, nine, eight, seven, six, five, four, three, two, one, liftoff
This is ground control to major Lynn
You've really made the grade
And the papers want to know whose Pills you took
Now it's time to leave this stage of life behind
This is major Lynn to ground control
I'm stepping through the door
And I'm floating in a most peculiar way
And the stars look very different today
For I am out of Pill's I've taken every day
:D :D :D
Most excellent, Chuck! ;D I was singing that as I read it. Perfect for Lynn!!!
There ya go, Highflyer... "planet earth is blue and there's nothing I can't do.." ;D ;D ;D
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Yet another song for the virtual conga line! Good on you Chuck 8) Cal
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You're getting real close now Else.I think it's safe to exhale now. :) I'm loving the news from both of you Bricks and Chuck.I know the new year is going to be the best one I've all had in a long time. :)
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made my appointment for labs ( 12 wks). Where did the time go? I have been busy getting back to my "to do" list that was quite dusty actually!My thumb shock! works perfectly again & the knee numbness is almost gone...rash disappeared. I think I may just have to wait awhile longer for my brain to completely defog but feeling hopeful at this time of the year my blessings are staggering. I never thought I would live long enough to see a cure...then when it was in sight I was denied . You ,my friends, pushed me to the finish line with all the uplifting posts. Grateful for the widom, songs, funny scribbles & joy @ SVR's. Happy Holidays All!
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I'm happy for you Rosie,
Congratulations on getting to week 12.I start week 8 tomorrow and get those labs done next Tuesday,and next Friday pick up my last batch of meds.Time really has flown,I can't believe I'll be 2/3's of the way through this.I'm glad for everyone here to.You people have really made this easier for me.Back in the interferon days I would have hated to talked to anyone on the treatment as bad as it effected us.I got a call yesterday to see how I was doing and remind me of my appointment.I told them I wore out my dancing shoes and needed a new pair for Christmas. :)
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You are sailing through too!YEAH!! I thought it was gonna be so hard & drag but it was like a dream with all the support. Get mildly nervous as this lab will be the last till febuary & if I am still undetected I will be floating through the holidays. I am an 8 wker so this is an important milestone. Bill, great that the medical team is proactive too.Have a great day now !!
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Rosie,
AN 8 weeker? You mean txing? No you can't you;ve had you
re 8 week bloods? No understand. Deerr... Cal :o
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Five orange diamonds!!!!!
Four singing nerds...
Told you I would keep this up. ;D
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hey Cal...I was saying I'm an 8 weeker as most on here are 12 so this upcoming lab is 12 weeks .I havn't had Harvoni since beginning nov. It will calm me for the next big wait (feb.) if I am still undetected .sleepy time!
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Best of luck with your upcoming labs, Rosie!!! Mine are on this coming Tuesday. :o
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Else, we be labbin' next week! Here's to perfection for both of us!
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Don't forget me y'all.I'm having my 8 week labs done on Tuesday also Else,and will have my results by Friday.The Veterans Administration has it set up so we can just walk in and have them done when we want before our appointments.I start week 8 tomorrow.I don't know what I was thinking on my last post when I said I would start yesterday.I'm sure we'll all be just fine.Btw I can't sing Else so I'm just going to hum along with you. :)
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Rosie, Else and Bill,
Drum roll......and the winner is...it's a 3 way tie. All UND!!! Cal ;D ;D ;D ;D ;D
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OK Bill we meet back here next week for the great news for us all!yeah!
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Hello to all,
I just took my first Harvoni pill this morning for a 12 week course. I have read a lot of bad side effects from others. I figured that those with bad side effects would be more vocal about it and post more. I was hoping to find some other posts about the sides being negligible. Thanks for reassuring me that I was worried for no reason. Side effects will be whatever they will be so I can only hope for the best and prepare for the worst.
And away we go!
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All the best Otto BT! You might want to consider putting some basic info in your sig so we don't endlessly ask you your genotype, fibrosis score etc. :)
This is a great time for treatment.
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Not sure what all that is.
I will ask my doctor.
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Congratulations Otto! Don't sweat the side-effects. Maybe a headache here and there. Or maybe not. Plenty of water will take you a long way in avoiding these. Other than that, I just had tons more energy. Piece of cake treatment! :)
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Hey Otto! I wonder how the bad side effects got so scary...we must have really complained & scared everyone to death! I think I was just scared at first because I don't take perscriptions or even aspirin & since it was new I felt like I was jumping down a rabbit hole. All of that was a bunch of needless worry. Relax & think about all that nasty poisen being killed off by Harvoni in the first few weeks! I has almost no sides from this miracle drug & it was gone completely by week 4 ...then still gone week 8... now we are getting the labs for week 12 & I feel like Christmas will be just a little more special this year when I no longer have to fear Hepc ...it has taken up too much of my psych for too many years & the weight of it is lifted. I hope you will be able to feel free very soon. all the best!
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Wow, only one Harvoni left for tomorrow and then that's it. :o I have a minor, silly concern about a bruise I have on my arm. I have no idea how I got it but it showed up a week or so before I started treatment. Horrific looking thing, but it faded - going through all the normal color changes that a healing bruise goes thru.
But! You can still see it. :( My concern is that what is visible is still blood under the skin that is taking forever to go away. And that blood is pre-treatment blood. I.e., contains virus. Stupid concern, I know. And there's nothing I can do about it so, oh well.
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Hi Else,
Only 1 pill tomorrow, that's wonderful!
I am glad for you. I keep reading how you are doing without Harvoni.
And about the bruise, when the virus has gone, then is is not in your blood anymore I think, the blood is getting refreshed in the vains I think?
I ask tomorrow my college, she is a doctor and will know this.
The final countdown almost .....
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Thank you so much!
Yes, I would think that having my system inundated with Harvoni for three straight months (minus 1 day! ;)) would have circulated the DAA throughout my system many, many times. All bruise debris aside, I'm sure I'm still non-dectected. Just over-thinking things.
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One Harvoni to go Ms Else, one Harvoni to go.
Sittin downtown in a railway station one Harvoni to go!
Congrats on making it EOT! Onward to SVR!
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Else, all recognition :)
I am over thinking 24/7 :-* during this treatment. You name it and I am or was thinking about is :o
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I happy for you Else.The only thing you should be over thinking right now is to how to get time to move faster so you can take that last damn pill. 8)
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One Harvoni to go Ms Else, one Harvoni to go.
Sittin downtown in a railway station one Harvoni to go!
Congrats on making it EOT! Onward to SVR!
;D LOL ;D Really, Lynn? "One Toke Over the Line"? Signs of a misspent youth, I'd say. ;) Or just lots of am radio.
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Both although I prefer to think of it as well spent ;)
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Lol BillT :) :) :)
You always make me laugh out loud :) :)
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Wow Else that is great. I hope things continue to go good for you! I hope I have the same results as you, especially when it comes to problems with fatigue and brain fog.
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Else (and many others) has given me more confidence that it probably won't be that bad. I will begin on Tuesday and as an interferon non-responder I viewed Harvoni as beneficial but with a good deal of dread (emotional memory of the worst 6 months of mu life). Thank you all.
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Hi mrl914
I can definitely relate to your concerns about interferon. I also treated with interferon and was a null responder.
I know some have had a harder time with the new meds but most have had an easy go of it especially those of us who treated before with interferon Harvoni even for 24 weeks for me was a walk in the park in comparison.
Next Tuesday will be your first step to freedom from hep c
Good luck with treatment
Lynn
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So happy for you Else - almost there!
You can see paradise in the dashboard light!
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I'm also an ifn relapser so know where you're coming from baby! Anything is easy after that crap! Bye bye ifn hello Harvoni (and in my case Viekira) Cal :)
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Else,
You finish today, hooray hooray. You made it kiddo! I finish 17 weeks in 6 days. Just coming u behind you my friend! Cal 8)
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So happy for you Else - almost there!
You can see paradise in the dashboard light!
;D ;D "Let me sleep on it, baby, baby - let me sleep on it." Mornings with Meatloaf! Nice.
Yeah Cal, today's the day. Just took my last Harvoni a few minutes ago. Labs tmrw. Yikes. What a strange feeling. :o
Really? Today's just another easy Harvoni-walk-in-the-park day. Tomorrow is no meds for the first time since September 15. Someone's snatching my "non-detected blankey". Oy.
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It's a beautiful day in the neighborhood :) :) :) :) Great feeling HUH? Time to break on through to the other side ;) :D :D :D
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;D ;D "Let me sleep on it, baby, baby - let me sleep on it." Mornings with Meatloaf! Nice.
Yeah Cal, today's the day. Just took my last Harvoni a few minutes ago. Labs tmrw. Yikes. What a strange feeling. :o
Really? Today's just another easy Harvoni-walk-in-the-park day. Tomorrow is no meds for the first time since September 15. Someone's snatching my "non-detected blankey". Oy.
First Congratulations! It is so good to read about another person being cured and feeling good.
I just took my last pill and hour ago with gratitude and amazement. I had the same easy course of treatment and the return of mental acuity and significant increase in physical energy. I have not felt this good in years.
Good luck to all those waiting for treatment and in treatment.
Gotta go to the gym now:)
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Congratulations to you, Tom! 8) Same here with I haven't felt this good in years! ;D
Bwaaaa, Tommy - I've crossed over to the other side. It's weird. What a year!
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Great that You guys are feeling so good. It's amazing as well as a little daunting at the same time. Wish I could say the same. Still way out of sorts with My usual abnormal self. But, not bad over all. It's nice to see You guys that sail through with few sides Happy for You Guys.
Hey Else, have You heard from ByeByeC lately?
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I haven't heard from Marianne. :( Miss her presence here on the boards VERY much.
Have you tried the BRAT diet yet? What do you think is the holdover issue from treatment?
It really has been smooth sailing. I am looking forward to NOT having any more Harvoni headaches, but it's worth mentioning they were few and far between.
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Yea, BRAT works for 5-7 days then right back where I started. My G.I. & I think it is an anomaly that has killed off to much of the good bacteria in the gut. Started Yogurt with live cultures and watching what I am eating. Checking out Probiotic supplements to help improve good bacteria & rectify the problem. Headaches have diminished in frequency & severity. Still have some bad tinnitus & body/muscle aches & pains but they are manageable.
SURE WISH I COULD GET ME SOME ALASKAN SUNSHINE HERE MARIANNE!
Do You think that was loud enough :-\ :P ::) ??? :o :D 8) 8) 8)
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Here's a recipe that you might want to try - plain whole milk yogurt, frozen blueberries and maple syrup to taste. It sounds bizarre but it's awesome!!! And especially, right before bed, though anytime is fine.
Can you handle Kim Chee? Best probiotic there is, IMHO! There's some great non-msg, fresh Kim Chee available in the produce section at my market. Then again, big Korean community up here so maybe not so much in Texas?
I prefer to make it myself, but everyone in the house has to be on-board. Otherwise the drama about the smell just isn't worth it. :-\
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That is the problem around the home front. Seems no one is on board. Trying to look up an old buddy of mine that I used to work with. His wife made Kim Chee all of the time. Also, there used to be a Kosher Deli that I used to get Sauerkraut & knackwurst from if they are still in business.
Been eating greek yogurt with live cultures and blueberries this week.
It seems to Me there was a Korean Market on the outskirts of town or just outside. Trying to get a location on that also.
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Congrats Else on taking your last Harvoni !!! 8)
Tommy, Miso is also a good source of probiotics - 1 tsp or 1 tbsp in a mug of warm water makes miso soup. It's a fermented grain. I buy organic fermented brown rice miso. But barley miso is also good. Keeps forever in fridge.
kim
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Congrats Else and everyone else recently done.
For me it was so weird to not think to remember to take my pill took a few days for the mental alarm to quiet
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Hi Tommy,
I am going on a strong probiotic as soon as I finish, so Monday morning. We've been on really heavy drugs and I had anti biotics a lot on tx. I think our guts are really out of sorts. I already have the post RIBA sxs of pain in the muscles and weakness. I feel like crap. But am eager to get on with repair. I started exercising and was a bit premptive . Now gave Pulled muscles everywhere! Neve mind. Can't wait to cross over, very John Edwards. :o
I spoke to Marianne on Skype. She's finished and was having her EOT bloods. She's ok, but still struggling with sxs. But better in herself. Ill let you know any other news when I speak to her. Cal :)
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Hi Else,
I expect you to have a cup of tea ready for me when I cross over on Monday! Cal :)
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Reading my forum buddies posts here gave me a warm feeling.could completely relate to "losing my blankey" after 2 months instead of 3.feel strong & so so grateful for the whole process .Tommy we are going to conga,soon ready?We'll wait till you pop the probiotic so you can hang!!!!Tomorrow labs Else,Rosie & Bill !! We be labbin'!!!
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Cal, a cuppa & a bickie right. Glad to know Marianne is O.K.! Keep us posted as You speak to her. Tell her we miss her and wish her all the best.
Rosie, Yea, need to get the lower G.I. thing under control before any strenuous dancing. LOL! Warm fuzzies are always nice.
Kim, Funny You should mention Miso. I was just reading about it. Think I might try a simple Miso veggie soup.
Else, I'll be waiting on the new horizon!
GOOD LUCK ON YOUR LABS AND EOT EVERYBODY! WE ALL USED TO BE WORTH A FORTUNE WITH THE MEDS IN US. NOW WE ARE JUST RICH FOLKS FROM THE EXPERIENCE AND A SECOND CHANCE ON LIFE. VERY REWARDING , YET DAUNTING.
OUR FUTURE IS SO BRIGHT , WE GOTTA WEAR SHADES 8) 8) 8) 8) 8) 8) 8)
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To the future!!! 8) 8) 8)
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To infinity and beyond! :D
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Just got my $30k package from UPS.
"Tonight's the night - gonna be alright."
Nervous as hell but "the future's so bright I gotta wear shades."
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Hard to fathom all that money in that little bottle will be inside of You. Kind of like an overhaul in a bottle!LOL :D
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and as an added bonus, we have very expensive pee
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Just got my $30k package from UPS.
"Tonight's the night - gonna be alright."
Nervous as hell but "the future's so bright I gotta wear shades."
Don't be! :) I just finished 12 weeks, no problem. That famous "Harvoni high" is rather nice. Barely noticeable, but nice. Mine only lasted the first few weeks. A positive side-effect, for sure.
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Else, have You jumped the fence yet? The grass isn't always greener on the other side. Sometime its the same color.
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Tommy,
Yes cuppa and a bikkie would be lovely. I'll be there Sunday. I just counted my pills I finish Saturday night not Sunday! Cool. Cal 8) (I'm wearing shades)
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"It's the final count down!"
Congrats to all finishing treatment with visions of SVR dancing in your heads!
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Hi Lynn,
Yes les than 4 days to go!!!! 8) 8) 8) 8) Cal
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I have to slow things down.I'm missing everyones EOT.Well done Else and congratulations.The list keeps getting longer and it's wonderful to see. :)
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This just in - the first of EOT labs:
ALT 11, AST 15. ;D All other labs normal and still waiting for viral load one. 8)
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Congrats!
I just took my 2nd dose (82 to go). Minor side effects, a little achy and sore,
nothing to complain much about.
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ELSE, Bitchin numbers ;D . Still can't get mine that low.
MRL, Good luck and Happy Trails! Hope it stays that way for You :)
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So this is where everyone is hanging out! Congrats Else...with those low LFT, I'm sure the VL will be great too.
Re: pro-biotics - I don't know if you have a Costco nearby but in my Costco they sell these tiny little bottles of pro-biotics, in the cold section, next to teas, juices, etc. I buy them from time to time.
Yep, I gotta put on my shades now :) 8) 8) 8)
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Else,
Dead jealous of those numbers, you're shoe in Lovey! Cal :)
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Hi Bree,
Good idea on the probiotics. I am going to take them too. Cal :)
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Else,
Hoeraaaaaa!!!
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I did attach some funny emoticons from my Iphone but they dont show,up....
Can I insert a nice picture of something in a post?
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I've had holiday company staying with me. Last labs on the way to the airport to pick-up my favorite niece. 8) No computer time at all, but this just in -
EOT HCV not detected. 8) 8) 8)
;D
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I've had holiday company staying with me. Last labs on the way to the airport to pick-up my favorite niece. 8) No computer time at all, but this just in -
EOT HCV not detected. 8) 8) 8)
;D
BRAVA, Else!! :D :D
kim
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hotziggitydog! Great news Else
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HIP HIP HOORAY!!!! 8)
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Congrats!!
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Santa's bringing everyone a shiny clean liver for the holidays!
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Awesome congrats Else!
What a great Christmas present!
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Else,
You're my hero! Cool bananas! 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) Cal
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big congrats Else!
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Cookies for 8)
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OOPS! COOKIES FOR EVERYONE ;D 8) 8) 8)
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Else: That is such wonderful news! To a happy and healthy life! Cheers!
Rubi