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Post Info TOPIC: Health Updates - Among Friends


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update on hubby's medical news.

he was diagnosed with a high ck ..creatine kinise? that means muscle disease... prob not brought on by the harvoni is my guess, but a lifetime of athletics. 

but the ck factor is a good test to define more muscle disease.... now he'll be off to another rhumatologist soon  for further testing and advice



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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Hi 5!

This is good news, that you have a plan 5.  This health business is a full time job.  Hopefully evicting the GB will make you feel better.  It's remarkable that we actually give up a body part.  Our livers wouldn't put up with that!  

Now, if you can quit smacking stuff, you veins will thank you.  Weird one.  I'll have to look at the link Iris shared.

 

Lam,

Do you have any test reports?



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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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thnx obs and harry



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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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All the very best wishes 5 , I'm sure a lot of people are on this ride with you, everything will be ok ,sounds like your in good hands .

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What a relief to have a plan 5! Hope that naughty GB behaves itself until October. I also hope the fibres havent interfered with getting it laperoscopied out. smile



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

3 years...post tx... successful dragon slayer 



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i saw the surgeon today and he recommends we move the GB outta there since it can only cause drama and trauma again, and again.

i'm looking at the end of october for the ceremony. 

i like my doctor who is also a vascular surgeon.

i told him my f3 status and he said that if the fibrosis has gathered up the GB then he might have to make an incision , otherwise the laproscopy will work. He will only know that once he's looking inside, and i would spend a cpl days in the hospital , but at least i'll have doctors and nurses making sure i'm ok

the best part is no more extra tests! just lab work and another visit a month before the surgery. 

i am as ready as i'll ever be and i'm sure i'll be sharing my journey here with everyone. 



-- Edited by 5-1-18 on Wednesday 17th of July 2019 03:00:37 AM



-- Edited by 5-1-18 on Wednesday 17th of July 2019 03:01:41 AM



-- Edited by 5-1-18 on Wednesday 17th of July 2019 03:02:38 AM

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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Thanks Iris for the link...they do look like that although never a whole finger...thank goodness...perhaps if thats what it is...its not too bad in my case.  Im glad Im not the only one (but sorry you have had them ) and Im glad it doesnt foretell something horrid. Now I think on it, my hand ones have sometimes been caused by using scissors or some other *trauma* no 

thanks Harry and 5... icing it does seem to help with the immediate burning pain (although I was at the park with my dog when it happened on my wrist yesterday so I had no ice hmm)

I figured it was vascular...I sure dont want my gut veins to ever do it wink



-- Edited by Observer on Tuesday 16th of July 2019 05:22:36 AM

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

3 years...post tx... successful dragon slayer 



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Observer wrote:

I have a weird thing that happens and am wondering if anyone else gets these..I get little areas of an extremely swollen vein usually in my fingers and/or feet that hurt like stink for about 20-30 minutes, then turn into a bruise. Ive had them come and go for years (pretreatment as well so not caused by DAAs, more likely cirrhosis related) 

Ihave showed them to all levels of Drs,from family doc to liver man and no one has been able to (or inclined to) explain them.

I got one on my inner wrist today...dogs leash was around wrist ..he pulled sharp/hardish but no harder then everyday... my vein swelled up to double size and burned  for over an hour...my hand was sensitive..now I have a sore bruise the whole inner wrist from one side to the other and my vein is still slightly enlarged.no


 Hey Observer, I get those. Incredibly painful then intense itching followed by bruising. It's very random and the slightest thing will trigger an attack, once I was removing a ring and yeioOOOWwie. I pressed the nozzle on the hose into my palm and it triggered one you could sorta see the vein turning in my hand. I found cold water or ice cube lessens the immediate attack and lessens the itching to.

It's called Achenbach syndrome but thus far they say they don't know what causes it and that it isn't know to be dangerous or a foreteller of some other weird health thing...yet. I had it before treatment rather rarely though it seems I have had about three attacks since completing Tx.

http://www.healthcaretip.com/2017/05/Achenbach-syndrome-Pictures-Symptoms-Causes-Treatmet.html

 

BB, Iris



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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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Yep I agree !! This cold weather here arm is bit much hard to believe it will be so hot soon..look after yourself.

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my veins react when i smack into something... the ortho says some ppl are just like that 

blankstare

the swelling goes down with ice and sometimes leaves a bruise.



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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Observer, that's a strange one I guess you have tried a cold or hot pack on it sometimes can give you bit of relief,good luck with it .

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I have a weird thing that happens and am wondering if anyone else gets these..I get little areas of an extremely swollen vein usually in my fingers and/or feet that hurt like stink for about 20-30 minutes, then turn into a bruise. Ive had them come and go for years (pretreatment as well so not caused by DAAs, more likely cirrhosis related) 

Ihave showed them to all levels of Drs,from family doc to liver man and no one has been able to (or inclined to) explain them.

I got one on my inner wrist today...dogs leash was around wrist ..he pulled sharp/hardish but no harder then everyday... my vein swelled up to double size and burned  for over an hour...my hand was sensitive..now I have a sore bruise the whole inner wrist from one side to the other and my vein is still slightly enlarged.no



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

3 years...post tx... successful dragon slayer 



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Iris,hope your numbness is improving in feet ,IV been waiting to hear from neurogist specialist finally got letter ,they can fit me in 3 MTHS time ,( great ) even when see him dont know what he can do,my local Dr has left, now I have a new Dr looks about 20yrs old and knows very little about DAA s or nerve damage ,does anybody else get like body jerks where arms or legs jerk especially when relaxing or about to doze off?? I had one other night just about fell out of bed and my knee is now swollen from leg jerking ,told my Dr he had no idea why,just said mention it to neurologist when I finally see him,wish Gilead would let people who may be getting side effects poste treatment maybe some kind of explanation why some of these wierd things are happening and will they go away or get worse, I had so much more energy and no numbness before Epclusa tx,I'm hoping it goes away but it's been about 7mths now, pre treatment liver people used to ring me,but they haven't made contact in MTHS ,Idont know about other places but no one seems to have any answers here .

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Hey lam, 

What a lot of ka-fuffle trying to get all tested out, but ... you are doing a fine job at it! I am glad you have the where-for-all and the knowledgeable thorough stick-withed-ness to exhaust the avenues you should be, to get to the bottom of things.

Rule out stuff, that seems to be the way to go.

I am glad your cardiac and vessel status looks OK. I am glad you were able to get that testing done.

Nobody takes care of number one better than number one - you are doing a good job.  : ) 

 

5,

I am sorry for your 2 week delay, but you are right, sleep deprived was no way to present yourself to your doc appoint. Thnak goodness all is relatively quiet on the GB front for you for the moment?, i hope so anyway. I too wonder if a stone has moved or left home or is just giving you the silent treatment, either way, here is hoping for a forever well-behaved GB!  : )

 

Iris, 

Do we have 2 left feet! hee hee, (you said) ... " My left toes are in and out of numbness, some days worst than others " ...

- Me too, my "pedal" numbness affects my left foot, bottom of, (and weirdo icy cold shivery sensations down my leg!), it varies a fair bit. Between you and me and Harry and Obs and a bunch of us here we got some numby stuff going on, but, there can be some very common good reasons for this shat we have to experience, put up with and recover from! I cannot at all blame my neuro symptoms on Gilead's DAA cure of me.  : ) 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

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Thanks Cheddy, every time I have to see a new specialist I spend half a day getting approval from my HMO and scheduling tests. All the work is done I have the CT scan scheduled next week and see the pulmonologist in two weeks so should have answers then. Thank God I am retired and have time to do all the running around to get the ball rolling. Have a safe and happy 4th all!



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Male, 66, 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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Wow, Lam.  They're sure covering the tests.  I never did see a pulmonary doc.  My GP has been able to treat me.

That's some very good news regarding your heart.  You got an A on your tests.  

I'm eager to hear the next findings

 



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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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i had to reschedule with the GB Doc, i didn't get any sleep and couldn't see driving over there in that condition. They were real good about it and i go in 2 weeks with a little bit later appt.

i may call tomorrow to see if i can get it on a day that i don't have to work the nite before.

at least my GB is cooperating with me these days, bu i still want the evaluation in case it does decide to act up.

ok, chores and errands now after i finally slept about 5 hours after i called the docs.

be well friends



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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Cheddy wrote:

Lam,

Somewhere in my adult life I was diagnosed with Exercise Induced Asthma.  No allergies, but sensitive bronchia.  Be sure to cover that possibility too. My shortness of breath is treated with inhalers - one for maintenance and one for emergencies. Just guessing.

I'm eager to hear what you find out.  I'm glad you din't need a stent, but as Tig says, it's one of the better/easier heart issues to deal with.

Please keep up posted.

 


 

Hi Cheddy,

Good call! I saw my cardiologist for a follow up today and he says no way is my shortness of breath related to my heart but must be my lungs instead. My ejection fraction is normal on echocardiogram and my coronary arteries are good, no blockage.  He set me up for a CT scan of my lungs and a consult with a pulmonologist. Finally getting closer to an answer after two months of waiting for tests to be approved by Medicare. He also ruled out my F3 status as a possible cause of dyspnea. No stents needed is great news, they are routine now but more meds are required and there is the increased chance of a stroke.



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Male, 66, 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.

Tig


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And you, my Sister! Spelling was the only class I excelled in, ha, ha! That and welding wink  Oh and partying...



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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 5+ years!

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You're right Tig.  I was being lazy.

Wellness wishes to yooo!

 

 



-- Edited by Cheddy on Tuesday 2nd of July 2019 04:03:22 PM

__________________

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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Harry wrote:

Hi Lamassu,why are these problems happening,?Think it's about time gilliard maybe explained a few things regarding poste treatment side effects breathlessnes  especially with people over 50yrs old.


Hi Harry,

There is no indication that my shortness of breath is a post treatment side effect of Epclusa. I finished Epclusa over a year ago. I see my hepatologist for a one year post treatment Fibroscan and consult this month and will get his opinion on whether the dyspnea is in any way related to my liver function.



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Male, 66, 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.

Tig


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That is all...  School’s out for Summer! wink



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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 5+ years!

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Lam,

Somewhere in my adult life I was diagnosed with Exercise Induced Asthma.  No allergies, but sensitive bronchia.  Be sure to cover that possibility too. My shortness of breath is treated with inhalers - one for maintenance and one for emergencies. Just guessing.

I'm eager to hear what you find out.  I'm glad you din't need a stent, but as Tig says, it's one of the better/easier heart issues to deal with.

Please keep up posted.

 

Harry, 

Yes, it's confusing to discern what is treatment related and what is not.  I've heard more complaints from Harvoni users, but I don't know the facts or the causes.  Perhaps Gilliad has looked into it and maybe part of why treatment options keep changing. It's looking like the new treatments are more trouble free, even long term. I'm sure sorry to hear that you are still having these problems.

 

Canuck,

OMG!! You need a break!!!

 



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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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Also neuropathy and numbness I never had these symptoms pre treatment if gilliard could just explain,after all there the experts.



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Hi Lamassu,why are these problems happening,?Think it's about time gilliard maybe explained a few things regarding poste treatment side effects breathlessnes  especially with people over 50yrs old.



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No allergies non-smoker. Everything was fine until suddenly two months ago I started having shortness of breath on exertion. I'll ask my cardiologist if he is sure this problem is heart related or if I should see a pulmonologist.



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Male, 66, 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.

Tig


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Good news, Lam! Better they didn't find any pathology and no extra parts added to your pumper. If something had to be done, a stent is far easier than a bypass, and then another. They seem to come in two's and three's. Might be a good idea, after the Cardiologist visit, to see a Pulmonologist. Could be some underlying issues there, that aren't allowing you to ventilate properly. Have you ever smoked? My Dad smoked for 40 years and quit around 1980. It wasn't until the last 10 years of his life did he start having shortness of breath occasionally. They discovered he was developing emphysema. Environmental issues can sometimes be the culprit, too. I know you, you'll find out and get things right!



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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 5+ years!

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lam, i'm glad to hear your procedure was easier than you imagined.....now to get the rest of this addressed.

do you have allergies?



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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Thanks everyone for the kind words.

I just got back from my left heart cath. They have improved the procedure, there is a new way of closing the femoral puncture that only requires you to lay flat for 2 hours rather than 6 for a clot to form, called Suture Mediated Closure using Perclose ProGlide.

The cath lab I went to looks like something you would see on Star Trek Enterprise. All white and very high tech. Took a half hour. Good news is I have no coronary artery blockages, no need for stents. Bad news is the interventional cardiologist can't explain my shortness of breath. I have an appointment with my regular cardiologist tomorrow to explore next steps. At least I don't have a stent to worry about, that means more drugs to take and increased risk of stroke. To be continued ...



-- Edited by lamassu on Monday 1st of July 2019 04:07:45 PM

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Male, 66, 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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Geez you guys.  I get swamped for a few days and look all of these health updates.  So much going on.  When my current guests leave, I have a lot of questions about what's going on.  The one I know best is fatigue, seems to go with sleep issues.  I'm sooo sorry so many of us are in serious discomfort. We came here to get better, and we did, but still we stumble of the other landmines.  More later.  Please find your happy places where you can and take time for your own comforts.  

xoxo

Cheddy

 



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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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Hey, will be sending you good energy Lammasu!!! hope all goes swiftly and with the best possible outcome! I was in cath lab in 2005, and it was pretty neat watching the procedure on the monitor. I didn't have a stint though, it was a radio ablation for an electrical haywire.

 

@5, I really glad to hear that you and hubs are feeling some improvements, as I am at about 9 months post and really ready and waiting for this too. Oh and thanks for the reminder on the magnet therapy :) I'm going to go dig my bracelet out and give it a go.

@Harry I've been trying to find info on the nerve disruptions and any correlation to Harvoni and so far nadda. My left toes are in and out of numbness, some days worst than others, it's really my back right now, just doesn't seem to have the strength to hold me up, and it's painful as ****!

Stay cool everyone, seems tolerating the heat is now the new challenge

html5[video=https://giphy.com/gifs/FzpNPTpiDpsmk/html5]

https://giphy.com/gifs/FzpNPTpiDpsmk/html5

<iframe src="https://giphy.com/embed/FzpNPTpiDpsmk" width="480" height="480" frameBorder="0" class="giphy-embed" allowFullScreen></iframe><p><a href="https://giphy.com/gifs/design-blog-FzpNPTpiDpsmk">via GIPHY</a></p>

LoL ok...I give up, I can't figure out how to embed a GIF cry

BB, Iris



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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 5,glad to hear you both feeling better,I'm in same boat I'm on wrong side of 60 as well,we are really lucky to get this far plenty of my old friends didn't ,I keep forgetting that getting older means few more aches pains ,I really get a shock when I see the date 2000s wow 50s sound long time ago lol,we sure have seen a lot our generation,couldn't believe it was so hot in Europe few days ago. Hope that's not a sign of what summer is gonna be over here,anyway makes me feel better that you guys are going ok.cheers Harry

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it's been a year for me and i'm starting to feel pretty good for being 67 as well.

it's been about a year and half for hubs and he is starting to get better now, he's getting his appetite back and that helps so much to be nourished.he has pain but he always did; it was just worse... but at 70 i think hes doing pretty good too.

we are both still looking forward to more better , but yea for sure ..... the mean old virus is g.o.n.e. ;and nothing would be possible without that



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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Hi all I wish everyone best of luck with all there medical issues,I don't know about everybody else,I'm really happy to be rid of this terrible virus,but I was really looking forward to feeling a big improvement 8 MTHS after treatment ,I'm really hoping the DAAs haven't had anything to do with neuropathic problems some of us are experiencing,I found it really hard to get a straight answer from the liver people over here, I recall reading somewhere that the virus can be found in lots of different organs besides the liver, it's great that the new meds can wipe the virus out ,

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Hey Lam,

I hope it goes smoothly and you only need a stent. Im glad you have a good cardio centre and your insurance has preapproved any necessary procedures for you.

catch us up when you can



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Hey Lam,


Good luck, Brother! I know what you mean about all these things catching up to us in our most knowledgeable years (sounds better than worn out)! Get er Done and let us know as soon as you can, how things went. Better to find out now than when an MI causes some damage. Smart move to go in and have it checked out.



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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 5+ years!

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lamassu, good luck and i hope it's the easiest of all the choices be well and see you here soon hopefully



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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Hi friends,

I may be away from the forum for a week or so. I have been having shortness of breath and my cardiologist has me scheduled for a left heart cath tomorrow. Now that is an outpatient procedure and if I only need a stent I should be back home same day. On the other hand if imaging shows significant blockage of coronary arteries the rules change and I may be admitted same day for bypass surgery. It depends on the severity of the problem and availability of a surgeon. If I need a CABG or HCR I may just be sent home and have to wait a few days. Shoot you get one problem out of the way and another pops up. It's a **** getting old:)

Good news is I have never had any chest pain so odds are I just need a stent and caught the problem early before I had a heart attack. Also Medicare has already approved whatever I need and where I live we have a nationally recognized heart institute. Will update as I am able.



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Male, 66, 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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hi C,

i have tons of magnetic braces and spot magnets etc. something for everything except the GB

i have bracelets i wear for work, knee braces that are lined with magnets for my arms and feet

bigger wraps for neck and back.

spot magnets with a special bandaid type patch that sticks for days , that i use on my thumb joint and sometimes my neck. [shhhh, i haven't needed one for a while now ]

i ice my pains religiously to keep the inflamation down and numb it down. heating pad more in the winter months but so far so good on that right now too .

i get my magnets from amazon.com  Not everyone is lucky enough to have it work for them, i am so thankful since i can't take meds very well.

so, tuesday i get GB evaluated, but i'm sure he will need new ultra sounds to see where it's at now. i'm bettting it was inflamed due to the passing of a stone that hurt so bad. so far it's pretty quiet... it must know it's going to get evaluated. 

i'll let ya'all know how it goes and what the doc says. at any rate i'll be on board with the surgeon in case it needs to go bye bye.

i hope you are recovered from your trip and racking up the walking miles. i'm sure you are sad about the yoga cry ,  i know how i feel when i have to give something up cos my body just says no .

 

water arobics and yoga sound easier. take it easy



-- Edited by 5-1-18 on Sunday 30th of June 2019 05:18:45 AM

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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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uumm, we are needing further updates from folks who are sporting broken teeth and own uncooperative GB's. (You know who you are.)  : ) 

5,  I know very little about magnetic therapy, heard of it, but that's about it. Saw some magnetic wrist bands once, and supposedly, some kind of magnetic stockings? Can you tell me more please. What do you do and how does it help? Would appreciate the info.  C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

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hi friends,

have you guys tried magnetic therapy? i have used it for years and it helps me so much.



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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Hey Harry,

Thanks for asking. It IS a bummer these physical bugger-up things that happen to us eh? Yours do not sound like any fun AT ALL, mine I am hating. Mind you, I don't end up slamming my fingers in the car door because of them! That sounds terrible/dangerous! as well with dumping hot coffee on yourself. I sure hope they can do something to improve the nerve communication down your arm.

I am still being assessed, but my first (recent) MRI results are back. That and the orignal xray are somewhat informative. 

MRI shows no herniation of the disc(s)  persay, just "bulging discs" and more arthritic areas show on the MRI than what we saw on the original xray. The MRI shows the bulging discs, where the xray does not, but both xray and MRI conclude some similar things, DDD mostly at L3,4,5.  MRI says "mild multi-level DDD" and xray says "severe DDD from L3 down" . 

MRI in brief:

- between L2-3 - "annular disc bulge with mild anterior effacement of the dural sac".

- between L3-4 - (same as above as far as bulging disc) except that it says the disc is also "mildly compressing the dural sac", and, "moderate disc space narrowing" is noted. "Mild bilateral facet OA" present.

- between L4-5 - (same as above as far as bulging disc) except that the disc is also "mildly compressing the dural sac", and, this one also shows "moderate disc narrowing". "Mild right facet OA" present.

- between L5 and S1 - "mild disc bulge not affecting the dural sac", and, "mild right facet OA", and some typo I have not been able to decipher yet.

So, MRI says no "nerve root" compression, no "spinal stenosis". I can only assume the L3-4 and L 4-5 are the worse narrowed/bulging areas causing some compression on the dural sac which are causing symptoms for me? 

I have had some slight decreases in symptoms, but not much, my trial of gaba and antiinflammatoires did not seem to help that much, avoiding certain postures, movements and exercises I think has helped, as well as just waiting (carefully) "over time" while trying not to aggravate anything. The hands-on chiro and the massage therapist i think is helpful. I stopped yoga for now, I try to go to the pool a bit every week and stretch a bit in the pools sauna, that can't hurt! I might join aquasize for some kind of overall exercise. Mostly I have just been doing walking as much as i can each day, my leg/foot numbness does not bother me as much when I am walking, sitting is bad, bending over is not good, sometimes even laying in bed is not good. I am experimenting in what improves it and what worsens it and going with that as a rule for now. I rigged up a slant board where i can lay upside down and try to open my discs/, dangerous getting on and off that thing!, jury is out on whether it is helpful (it might just be!), I lay there for about 15-20 mins. Chiro wants me to lay on a bolster under the small of my back for 20 mins each day, so, I am trying everything.

So there ya go, my "back" update, I will see a neurologist sometime in the near future - I too have not heard when that will happen Harry. I hope they do not keep you waiting too much longer - Harry did you ask for a copy of your imaging report to be given to you so you can read it for yourself or share it with us for our opinions? 

Later, C.

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hi Canuck, how was your trip, I hope there was some good news for you, I'm still waiting to hear from neurologist for appointment,been thinking about it wondering what they will be able to do about numbness an joint pains ect,every Dr I go to over hear as soon as I mention just finished treatment ,they seem to throw you in the too hard basket ,last Dr I went to cause my fingers an feet were driving me insane offered me aspro,s 1 in morning and 1 at night ,didn't bother cashing script ,anyway hope your going ok.take care.

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Hey Chuck,

My friend, I wish you the very best and a safe journey to the big city. I'm sorry you're having such a rough time with all these different issues. I know you'll at least figure out what's going on and will be able to make a plan that takes you closer to a more comfortable conclusion. I need to do something similar, but have had about enough of this nonsense. My brain is tired, my body is tired, everything is tired. Good luck and if they have one of their happy ah-ha moments, grab it and run for the hills! Tell your Chauffeur to take it easy on those mountain roads! We want you back in good shape wink xo



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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 5+ years!

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Hi Canuck, good luck with your adventures hope it all works out for you ,I'm still waiting to hear when I can get into see specialist about my neck problem s an numb fingers and toes ,jambed my dam fingers in car door this morning ,cold weather didn't help don't know if fingers being numb made it better or worse, have safe trip mate good luck with everything ,not too many Mac's hopefully,and watch those sleazy motels. cheers

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have a nice trip C

i go to GB surgeon on 7-1 ; the past few weeks i have had only a few very mild symptoms so i'll def ask for a new ultrasound to see if it stopped being inflamed.

i might have been passing a stone over the period that was so bad.

 



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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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New day, same ole shat ... rollin on down the road tomorrow, going to the next big town (2 hours over) to have my pictures taken, a repeat Abd CAT (deluxe? - would you like that with dye or without?), "I'll have the side of dye please, and a great big glass of water with that" ... then, the next day, the second course, I get a MRI of my spine to see what's what with my foot numbness and this lack of discs they see on my lumbar xray.

So, we shall see what kind of calcified crispy critter crustaceans the CAT finds in my kidneys, pancreas, aorta and who know what else this time! 

I am dreading but also looking forward to getting more info on my spine with the MRI though - if that makes sense, and IF it does shed any helpful info on my back issue!

We'll see.

I get to go to Macs, DQ and Wallys and overnight at my fav sleazy cheap motel to soak in the hot soup of shed skin cells of millions (their hot tub). Yes, please, I'll have some bleach with that, thanks.

I didn't get to your fatigue topic yet Iris, but fatigue has taken on a strange new nasty ironic twist for me, basically a "new kind" of fatigue or "new reason/cause" for fatigue, just happening more this year - hated insomnia periods, it is really weird, unpleasant and very much not wanted! - how cruel is this! after all the profound fatigue problems I (and so many others) have had in the past, or, for those who still struggle with their energy levels now for various reasons. I have become the owner of many different kinds of ear plugs, brother!

Here's best wishes for a good rest to everyone tonight! 

I'll let ya's know how the photos turn out.

Man, I hope every meal I do out of town doesn't end up being junk food.  C.

 

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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The "old" days (and the old days were NOT that long ago!), were tough times for treatment, the drugs so cruel. I thank my lucky stars, everyday, I am ever so grateful, that even though i packed the hep unknowingly/undiagnosed for many decades, that I did NOT get diagnosed sooner, otherwise the drug choices that would have been offered to me (prior) would have been far less than the ideal drugs I ultimately ended up getting in 2016. And lucky, lucky, lucky, after my cure on the easy drugs, my fscore reversed itself. So grateful indeed. 

Tig, keep us posted on what you will do about the broken teeth. 

That story you told us about your friends funeral/death - OMG, I can't stop thinking about him and his parents.  

Such hard stuff we have to deal with in life.

Hey to everyone else too, and nice to see you too Scruf. C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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i agree sruffy, it was that treatment or death cry . at the time my fibrosis wasn't too bad so they opted me out of the tx since i didn't respond in the trial period. they didn't even try a cocktail, just "wait for something that will work".

wish it had come along before i got to f3 , but i'm thankful to be cured.



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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=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Tig...Sorry for your loss. 

I clicked that link on the interferon WOW, but that was only one med in the three drug treatment and the other two were just as bad. All in all I'm still thankful for getting it even though I had one foot in the grave for 48 weeks as a lot of us did.

Way back when Observer  hepc and its complications were like a death sentence and a lot of us already saws deaths associated to it. We had nothing to lose.



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!

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