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Post Info TOPIC: New member - Treatment one week Hep C


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I'd like to know how you know you have thrush, what does it look like? My tongue has felt weird ever since I had covid in Feb.

I've seen 3 dr's and they said I needed more flonase becos it is allergy but that made it worse so I quit that and got a little better...then I quit my antihistamines awhile back and it improved some more and I haven't had any allergy symptoms [except for the tongue but those things didn't make it go away anyway].

so I figured I'd ask you guys here.

thanks everyone, 5.



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hurray Bluestate 

congratulations on finishing the treatment

i smoke rollies have done so since I was 13. I get organic tobacco the process of rolling makes one want that ciggy instead of just lighting up.. I only smoke a few a day.

 

your salad dressing sounds yummy (and healthy)  I make a similar one but I use balsamic vinegar and maple syrup (I am Canadian ) the mustard certainly helps it emulsify and a flattened garlic clove adds a nice tang 

cheers 



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

4 years.... successful dragon slayer 

Tig


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Congratulations on reaching the finish line!

 

20CC5F26-980F-4813-986F-C22F694C19A9.jpeg



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Tig

66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Hi Blue, nothing wrong with crying, you've just got through a rigorous treatment to get cured. I'm sure you'll have lots of emotions right now, esp since you still have other things going on.

I didn't think coffee is bad unless your dr. said no.

I'm so glad you got through tx so well and pray everything goes in a good direction for you.

I'm so proud of you for keep on keeping on.

5



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hi - ya all...well today was my last pill feels like a mountain though I take a pill every day for thyroid it really isn't the same.  I am so relieved I managed to follow the protocol & was rarely late more than a hour or so taking it.  Also the water I've noticed I cut down my water & my skin and tops of my fingers looked dry & like I'd been swimming for ages!  Within half an hour & half bottle of water completely changed.  I have one more problem that has showed up.  The muscle cramps have gone but I know they are somewhat serious - I think partly they were caused by stopping smoking & coffee.  It was too much all at once.  So roll-ups are fine & maybe 2 coffees which is very little for a coffee addict. 

Tig dear...yes I always get thrush from antibiotics & it can take a while to right it.  I just got the bacteria in pill form 1million live bacteria you can get from health food shops.  It has taken about 10 days to feel completely sorted.  It is very painful & for me has got worse over the years if good bacteria is compromised.  Luckily the Epclusa did not cause this that would be a nitemare for sure.  I only took antibiotics 7 days!!

I am left though with my right leg top on right side just below last 3 toes has edema which is proving very difficult to get rid of.  There is also a little build up on right front of same leg in the middle by the shin about 6-8 inches like a bulge but it indents a bit.  So because I've had it in the other leg cramps etc but any swelling reduced quickly I'm not sure it could be a DVT - more because I'm not moving enough.. the problem there is my spine.  The pain is terrible after about 15 mins & I have to sit down.  I also checked the accupuncture points on the foot & would you believe it both areas on the foot & shin are related to the right lung which is where I have had the problem.  So I really need to stop the smoking or continue to reduce that.  This one is the hardest addiction for me.  Anyway enough just slowly trying to do more.  Been into town alone & enjoyed the time & as long as I could cross a road walk a little I felt better.  The other thing is a lot of past memories coming up & I'm crying a lot...frankly think its ridiculous as I should be so grateful to be free of that terrible virus.  Love to you all.  Thanks for reading x  Roll on 5th December when I get final blood work



-- Edited by Blueslate on Tuesday 13th of September 2022 10:13:57 PM

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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22

Tig


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Hello, Blueslate and congrats for the coming end of treatment! I remember having thrush during my course of treatment. It was awful, and so painful. Mine affected my mouth and throat so harshly I couldn’t swallow for a week. A compounding pharmacy made a solution for me called “Magic Mouthwash”. The lidocaine in it was a blessing! I’m sorry you had to deal with that, along with the other issues. The good news is it’s almost over! smile



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Tig

66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Sept 13th , that's next Tuesday

I'm so glad for you that you are where you are and are on your way to 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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Thanks all of you for your wonderful support.  I seem to have got over the bacterial pneumonia.  As for the smoking I am having a few roll ups which seem to have put a stop on smoking much at all.  I have the last pill on 13th September will be very happy to finish.  Still in process of getting my internal bacteria back as antibiotics give me aweful thrush.  I got some good bacteria 1 million a day which is slow bringing it back.  Otherwise my body is functioning much better - changed my diet so that I am having a lot of salads & mixing my own olive oil & balsamic vinegar with some dijon mustard & brown sugar.  It has made a real difference & seems to be acting as a detox as well making me very regular & easy.  Energy levels are still pretty bad - the next stop is to lose some of this weight.  I am so very grateful.  My girlfriend told me again there would have been no help for me either for the arthritis or the Hep C in the UK - the health service waiting lists are simply enormous.  Do take take care everyone & thank you for helping me not feel alone.  I will come back with my results in December.

 



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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OMG Fantastic news!

Seems you just got started and now you're well on your way to full recovery, what a blessed day.

And let me give extra kudos for getting that other serious dragon off your back!!! That is a great start so keep it going! the first two weeks were hardest for me. At the ren faire they call the smoking area the "Dragon Zone" Looks like you may have slain two dragons with this battle! Yeah!

blessings, Iriss



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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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  BluuuuuuueState. Hurray hurray so glad the stars lined up and made sure you are where you need to be.

 

undetected!!!!!    such fabulous news, and yes it IS emotional!!!!

you have slayed the dragon now the next month of meds will just make sure there is zero chance for that nasty virus to ever return 

The pneumonia certainly does take some time to heal, but ya the blood is worrisome. 
thats interesting about losing the desire for ciggys a silver lining from the pneumonia

 

 

 



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4 years.... successful dragon slayer 

Tig


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WOOHOO!! Welcome to Club Zero  

It sounds to me like you’re in the right place, at the right time! How absolutely perfect that is. We are all thrilled with your good news. Keep on track and continue hydrating like water will run out tomorrow, lol! You got this smile

38AA1BB9-21C6-43D2-BFB3-6400AFB9A06B.jpeg



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66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Blue, @ undetected!!!!



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hi - 5, Iris, Observer & Tig....wow amazing & for sure divine intervention.  I spoke with my dear friend yesterday who is in UK - she said you know Nic you would still be waiting for the hip op here & litte chance of Hep C treatment.

The news while waiting yesterday for the bloodwork re: the pneumonia which is weird because I have had no fever...Doctor on the island is going to liase when I go to get checked on Monday or Tuesday.  Today she is still a bit worried about it as it takes time to recover - still a little blood 

blood but no pain so I will just keep quiet, eat & sleep & heal.  The CBD that way Iris sounds good for me ...& yes after all these years looking over my shoulder for smoking its now legal is so ironic.

Ok so as I'm waiting to see the Doc...I was phoned by the Hep Doctor...he just told me VL....I'm undetected!! Amazing its so emotional.  Thank you so much you are good people & I go back 5th December so one more month of Epclusa generic + 3 months.  Woooha. - I did not want to stop smoking cigarettes as I had given up so much stupid I know...but the desire has been lifted for a cigarette the last 6 days which is absolutely incredible.  



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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Oh man that does not sound good at all. My husband was coughing up blood once and it turned out to be tuberculosis. The swelling sounds just crazy, ouch! I can't help but think something else might be going on. I'm sure you will follow up with the health care team. 

It sounds so beautiful where you are Use it it to you're advantage. 

It won't be Long and this will all be in the past! Already been 4 years since I cleared, wow! Time does fly! 

Personally I found smoking the oil made me cough so much more and I was getting so short of breath the dr. gave me a rescue inhaler. A chocolate chunk with thc and cbd in the evening makes for pretty restful sleep.

Obs, isn't that hilarious? we snuck around and now when it's legal we just can't do it anymore...cue the ironic song....lol

Keep on healing!

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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Awww Bluestate

You poor dear  What a relief that it is pneumonia. Coughing blood must have been kinda extremely terrifying. Hopefully you are going to start feeling better really really soon with the IV antibiotics and youll probably be happier being an outpatient and not being stuck in the hospital. Keep drinking that water .
interesting that your Dr didnt blame the CBD oil for triggering your sharp and moving pains its probably just your poor old immune system and damaged liver not being able to process.

Ive had pneumonia and it is very overwhelmingly awful 

Those enzyme numbers are great!!! Cant wait to hear about your VL. Do let us know 

 



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

4 years.... successful dragon slayer 



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HI Blue,

I'm glad you got on the IV tx for the pneumonia . Get well quick.

I look forward to your Wednesday post and the VL



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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An update...after coughing up blood & generally freaking out - I got to see my doctor yesterday.  He sent me to pulmonary & I haven't smoked now for 4 days nor had any desire after 50+.  Decided it was bacterial pneumonia which

frankly is a relief - they decided they wanted me in for 5 days hospital for an IV antibiotic.  The cost with everything else was prohibitive like $1,000 a day only for the bed...then meds etc.  so I am going outpatient for 2nd IV today!.

I am very sick still but woooping as also at the end of everything I went back to the Hep C doc & he reckons I may only need another month of Epclusa.  My blood work looking much better but at the top of the range or at the low end not much inbetween.  AST is 29 ALT 38.  The WBC is high at 10.42 but I think that is to be expected.  He is waiting for the VL which should get on Wednesday.   I told the Dr about the CBD oil he didn't think that was the cause.  The same as observer...here in Thailand they just made it legal on 9th June...& now I cannot.  I thank you all for the support I have really needed it so very grateful that I found this place. Blessings to all of you on our spiritual & life journeys.  



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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Hi Blue,

I hope you are feeling better than you were.

Yay for only 3 days left now

Please let us know how you are doing and how your labs are doing.

Feel better.

5



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0

Tig


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Hi Blue,

I’m sorry you had such a bad reaction! I can’t for the life of me understand why CBD oil would cause such a problem, especially in such small amounts. Is it possible that it wasn’t pure, and had something else in it, like a high solvent content? Did it taste off? That probably scared you to no end! Please let us know how you’re coming along. I would try and find out where that oil came from as well. Experiencing that kind of pain from two drops of pure CBD oil doesn’t sound right.

Congratulations on reaching the half way point! Are you keeping up on your water intake? That’s so important. Keep yourself hydrated and flushing out those toxins. 

I hope you’re feeling better!



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66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Oh yikes! 

Thats scary stuff Bluestate, have you reacted to CBD before?  I have had to give up all forms of cannabis (which sucks after being a daily consumer for over 50 years while it was illegal and now that its legal in Canada, I cant partake) 

I sure hope the pains stop soon and you can get some rest and feel comfortable.

my long term HCV and even the DAAs that cured me, left me with some nerve problems that come and go and move from shoulder one day to my knee another day, to burning pain on my feet (peripheral neuropathy) to no pain, I hope that you and your Drs are able to figure out whats what. 

You are almost done your 12 weeks? Hurrah for that.



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4 years.... successful dragon slayer 



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Thanks again all of you.  I am sorry to hear the forum will close.  I did something really stupid & my doctor is 4 hours drive away.  I have 4 more days on the 12 week course & someone came to see me yesterday & I had two drops

of strong CBD in my coffee....a few hours later I was in a lot of pain my liver is totally swollen & pressing against my lung so its difficult to breathe....I couldn't sleep all last night due to the pain.  I can't sit or lie down its constant pain & stabbing too  - never  before had swelling a little but not pain like this.  I then coughed up a bit of blood.  So I rang the Doctor ...he's on day off.  It was a tiny streak of blood  very very little   I don't want to take ibruphen (Neuophen) I'm scared too just drinking green tea & two spoons of porridge.  I don't feel sick.  It seems to me that pains have been moving around my body like the cramp & gout for a few days.  Wonder if this is the same.  Sorry that's all I can write....can't think because of the pain x



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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Hey Blueslate, sorry I'm late to the party Glad you found us!

The folks here are fantastic, they have offered many shoulders to cry on and brought out the pom poms when it was time to celebrate, I too struggled with this beast for over 40 years and this place has helped to ground me when I was waiting for the right treatment for me to come around.

So much great information and support. I am so glad to have had this board to come to, and I hope we can be there for you too.

Glad I popped in, good to see you Tig, 5, Obs!! Hope everyone is enjoying their summer so far!

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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Awwww Blue  

you are such a warrior sweetheart, Im soooo happy you are living where you are and have people that can help you with your meals , its so important to have support.and coffee  
It sounds like you have been having a really brutal go.  The cramps I can relate to, I had full leg charlie horses that wouldnt stop..(I still get cramps if I run out of my magnesium glycinate), but the gout hmm and the back ..poor poor you!  
I cant guarantee it but when I finished my treatment and was cured of the HCV , my metabolism started working better and i definitely lost a fair amountplus had the energy to exercise again

Stay strong youre getting there  



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

4 years.... successful dragon slayer 



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Hi Blue,

wow, it sounds like you have been on a roller coaster! 

It does sound like you are managing really well for all you've been through.

I hope that leg thing is all better now, couldn't hurt to have your liver doc check it out on the 15th.

We all look forward to your next labs

You are doing so good



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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All that have wished me well & given your time to write...thank you so much!!  It amazes me that after getting great results you return to help others get through it.  Had a bit of a fright over the last couple of weeks.  It started with my right leg on the inner calf a small lump.  I definately think it may have been a blood clot.  It disapated over a few days and I thought it would be fine with a few leg exercises I continued as I spend a lot of time on my bed after the hip op & particuarly as my feet had edema on and off after going to town walking & driving.  Unfortuntately a few days later a cramp began on the back of the right leg calf.  It was continuous but the pain was bearable & the calf fairly hard.  Then the gout started boy was that painful, I had to take para.  It lasted about 5 days in the right foot big toe and at the same time the cramp moved down towards the ankle.  Anyway it all lifted completely what a relief!! However yesterday I drove to the mainland to get my visa stamp & the car serviced.  Over the previous few days my ankle was very swollen full of water & it wasn't reducing on the bed or after sleep.  Just before the night before I went to town as a pillow didn't appear to work I put a box under the foot of my bed to raise it & it did the trick...my ankle returned to normal.  It was swollen when I returned yesterday but this morning its fine.  However on the outside calf of the leg I was shocked to see many blue veins not spider similar to varicous veins they looked horrid & I am sure came from all the problems cramping & gout from before.  Now the positive I've changed to carnation & I am a total coffee addict so 3 a day is now usual.  Thank for the feedback on that treat!! I am so lucky as I have this homestay in Thailand & we built a restaurant too believe me if I was in UK I wouldn't have been able to even get shopping in let alone cook so I am so very grateful for my staff & have no doubt that finding myself here on this island was absolutely divine intervention.  My energy at least yesterday was ok.  My back is very painful walking after about 10 mins, but I found that if I sit for a minute or two I can walk again for a few minutes.  The next goal has to be getting this weight off as I am still 100 kgs.  If any of you that have kept me positive head out to Thailand you are very welcome to come to spend a few days with me here, its called Journey's End...its beautiful.  Ok I go back to Doc on 15th so nearly done for retests.



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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BlueState, 

I totally agree with Tig about using sugar and crème in your coffeedont sacrifice enjoying your coffee. Coffee is very good for your liver and you deserve to drink it the way you enjoy it.



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

4 years.... successful dragon slayer 

Tig


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Hi Nicky,

I'm sorry you're feeling like a bucket of poo, but trust me, we've been there, and we know exactly how difficult a time it is for you. The best advice is to treat yourself like the champion you have proven yourself to be already, and commit to fighting even harder toward your goal. It's not an easy journey, as you well know, but it's worth every ugly day of it. When you achieve SVR following the completion of this, you're going to feel like you've reached the summit of Mt. Everest!

I want you to allow yourself the occasional luxury of sugar and cream with your coffee. You're sacrificing so much already, between the loss of sleep, the resulting fatigue, the aches and pains of treatment and the isolation, it's okay to give yourself permission to enjoy a cup of coffee the way you want it! Limit it, you can do that. Continue to drink water like there won't be any left for tomorrow, your mind and body will be so much better for it!

If you're drinking a lot of lemon water, don't forget to rinse/brush your teeth soon after. The acids will harm your teeth otherwise. I was on Interferon, Ribavirin and Victrelis for 28 weeks. The Interferon caused a significant amount of dental bone loss and sadly, I lost some teeth as well. I'm going through extensive dental work now related to all of that. I went through treatment in 2013 using the old school treatment drugs. I'm glad you don't have to experience those horrid side effects and the lifelong problems they have caused. The DAA's have improved both the outcomes, and reduced the side effects immensely. I tell you this only to provide you with a window into the past. We're here to support you and share our journey with you. We understand your bravery and the discomfort that getting healthy involves. It's worth it!

You're a Warrior among friends, and we're here to help you battle your Dragon. It's a mean and nasty beast, but you have it on its knees now. Kick it while it's down, give it no quarter. For so many years, that lizard has caused you grief and ill health, and it's time to return the favor!

If you have any questions at all, don't hesitate to share them with us. You're going to beat this, that I'm certain of! Keep your chin up, stay positive, and treat yourself well. Of course, drink water until you feel you can't drink another drop, then drink another glass! You can do it, I know you can...  



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66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Hang in there Blue State, I too was beyond exhausted during treatment, I would crawl up the stairs, brushing my hair was tiring, standing to try to cook was just too muchand emotionally it felt too much, I was frequently on the edge of tears so I know how tough it can be.

but.now I have great energy and it was worth it

 

 



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Hang in there Bluestate, rest, water and eating well are all you need right now.



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hi - just going into 9th week of TX.  Very tired & only sleeping 2-3 hours at a time.  27 more days & back for tests at 12 weeks.  Did some study to find the protocol seems to come under Astral 4 study which is the only one that was done for 24 weeks.  However they did not publish this study only the one for the 12 weeks & the one with the additional drug Ribvirin over 24 weeks ( not sure of spelling) as for the 24 weeks of just Epclusa it stated there was not a noted difference in the result from 12 weeks!!  I have to say I am uncomfortable being expected to take it for 24 weeks..it feels quite toxic but I am not allergic.  My kidneys are taking a beating pee colour has completely changed to light yellow feel the need often to go yet sometimes a lot & other times surprised it is so little.  Definately still inflamed liver though not as uncomfortable as 2-3 weeks ago.  Eating well never lost getting hungry still trying not to snack & just have breakfast + pills about 10.30am & then a meal 4-5pm & thats it.  Drink water, lemon juice, tea lots.  Cut back on sugar & cream in my coffee...I know not good.  Definately relieved that I am finally on TX after all these years.  No intention to get Hep B vax at the moment also in a safe place so no concerns about the other viruses or whatever they are floating around.  Exercise is extremely difficult to do as the worst side effect is the fatigue even taking a shower saps my energy so praying that my energy will return to a decent level.  Brain fog is slight.  Best wishes to all.  

 



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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So sorry to hear about your rash, it makes sense that its toxins. I get a lot of annoying  skin stuff when my immune system is struggling. I hope you can get some relief or that its short lived. I had days or weeks of major itchiness when I was doing treatment. 

Sorry youre feeling low emotionally, it is a hard slog some days. but each day is closer to healing.  Do make sure you are eating as well as drinking water. I had to take my meds 2x (12 hours apart) a day and with foodI spoiled myself with cinnamon buns or other treats. 
 
Take care, and let us know what dr says , Obs



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4 years.... successful dragon slayer 

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Hi Blue,

Sorry to hear about the rash. Is it widespread or localized? A mild rash on these medications may come and go, but you should contact your doctor if it’s severe. You don’t want an allergic reaction to go unchecked. Mild symptoms tend to come and go. They can be treated with OTC therapy after your doc agrees. I have no doubt that your upcoming appointment and tests will be outstanding! Keep drinking that water. It’s liquid gold for you right now! 

Here‘s a link to some additional Hep B vaccine information. Mine was a 2 shot regimen that didn’t provide the planned immunity. That was a long time ago and I didn’t repeat it. Getting HBV and HCV together is never desired! Not Liver approved!! wink

HBV Vaccine Info



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66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Thanks to all of you for the useful replies.  I am having a rash now here & there not too many - like little pimples coming & going small with a white head.  Toxins I think. Interesting about the Hep B, I did not know it was a series.  I know when I first came to Thailand living about 13 years ago I had one Hep A...but did not go back for the 2nd.  I am getting some very rough days, metally memory lapses & tired.  I feel ok some mornings - other days I feel terrible but nothing particular - rare headaches.  I do hope that I get a good result at the next visit.  As for the Kefir yes I read where it originally came from.  I think it is normal to have an upset stomach & I do know you are supposed to start of slowly but as someone did it for me in a pint mug I kept drinking it.  Now I'm back to normal.  Very happy to talk a little.  I don't speak Thai so I spend a lot of time alone presently.  That should change now the country is opening up.  I am a bit freaked out as although the hip replacement is good now - 2 years on exactly my back is bad since & I have arthritis badly in one vertibrae now 3 years on where I haven't returned to the UK I have aged so much that I don't think I can go back...here is praying that I can do that as I must even for 2 weeks soon.



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22

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Hi 5,

I should’ve used the correct terminology. Following the second half of the series, you wait a given amount of time for the antibodies to develop. I never did, and haven’t repeated the series. I’ll ask my new doctor what he thinks about trying again. 



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66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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hey Bluestate ,

oh yes I remember the peeing all night from  the water consumption, but flushing those drugs out make it worth it.  Thats wonderful that your liver enzymes are lower.  
I lost some weight after I was curedI think my metabolism just wasnt working well. Livers have a lot of jobs.

I also did not get the covid jab I am quite sure I had it in the very first month of the pandemic the rules in Canada at the time were very strict about even testing people (you had to have been to China or exposed to someone who had ,have a high fever. etc ) so I never got the test and we werent allowed to get antibody tests to see if we had had it.

When I did kiefer it gave me diarrhea, my dr guy said its a genetic/ancestor influenced food and the nomads that discovered it are from the Caucasian mountains so unless I have that ancestry,  my body wont tolerate it. Which I found sad because I really loved the taste and ritual of it. (My sister gave me the starters/seeds/blobs and I would add milk shake it in a little mason jar every night)

anyhoo.. thats great that youre 1/3if the way through 

 



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tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 



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Tig, good luck with the new doc .

What do you mean by you didn't respond to the b shot ?

I haven't got the hepB shot but still wonder what you mean.



-- Edited by 5-1-18 on Tuesday 28th of June 2022 02:01:38 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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0

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Hello Blue & 5 smile

So glad you got an explanation from your Doc. It is uncommon to extend out to 24, but we all have circumstances that warrant changes to protocol. I have zero doubt that you will be successful. By your next appointment, your LFTs and VL will be right where you want them

You have to do your homework when it comes to starting a new dug regimen. I didn't respond to my Hep B vax and haven?t repeated it yet. I do recommend getting it. The older I get, some of these latest and greatest vaccines are sounding better! I go in next week to meet my new Doc. The worst part is all the paperwork/online preparation before you can say hello! 

Hydrate! 



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66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Hi Bluestate,

I'm glad the doctor explained to you about the length of treatment.

I haven't had the covid shot either but did get omicrom in January. I had the worse sore throat ever and it took nearly 6 month for my mouth to feel better.

I'm glad your blood tests are better and that you feel more like walking.

Yep, the peeing is too much but also good for us.

I'm in the U.S and our insurance covered the whole tx but a cure for HepC at the good price you get is a good deal too.

I bet the medicine is knocking out that virus as we speak

Take care, 5



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hi Observer & all.  Firstly Tig I spoke to my Doctor it seems that because I have had it so long 30-34 years I think because after 1989 I have not been at risk.  Found out by accident in 2003.  Anyway he said for 12 weeks its about 80% whereas with 24 weeks its higher I think he said 94%.  I can see its not often done alone usually with another drug - I told him I had not had the jab but bolstered my immunity, he said I should & I just looked at him.  He then said I should get the Hep B vax - that I do not have a problem with so I may do that.  I do think he knows what he is doing so very happy for that.

He gave me 2 more months supply so my costs so far just over $2,500.00 (if that helps anyone - because the costs caused me not to get treatment for so long)  I think it may cost me in total about $4,000.   The AST & ALT levels are down well  AST is normal range, ALT not quite about 10 points off & my platelet count is normal range where it was low.  Although they said my kidneys are fine I don't think they've been working properly for some time & although not ascites I have been holding water quite bloated & massively overweight.  Lost a bit after a month on the meds 4kgs but sure now it will come off if I can clear this.  All last night I was peeing every 2 hours last night much more than the water I'm drinking though I am drinking loads more while on the meds as suggested.  As for exercise its been so difficult because every muscle & bone aches.  Anyway I walked all day in the hospital - had to kill an hour after blood taken & so I walked all over two blocks.  It took me a couple of days to recover but undoubtedly I am feeling better & desire to move is returning.  Qi Gong I have done before glad you find it helpful - today my aches are pretty much gone...sure its to do with all that peeing.  I slowed down on the kefir as it effected my stomach too much so I shall continue but with smaller amounts.  Like a cup not a pint mug!! My feet have tingled & a bit numb for a few years now, I smoke which is probably why, however I found that taking B1 seemed to help that & now its not too bad at all.  Anyway all keep well & thanks for the tips & support.  So two months he just gave me & said he will next time check my VL.



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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Hey Blue, 

it sounds like your path has led you to a wonderful peaceful place to live and I know when you have kicked the dragon out. you will flourish.  I see you mentioned that you cant exercise much but I have to share the simplicity and power of doing a bit of qigong every day.even if you just are sitting on the edge of your bed and do the breathing and do some basic simple arms practices it will help 

I made a rule for myself because I know if I do them after coffeeI might miss a day then miss a month then quit..so I do 5-10 minutes while Im in my nighty (but after I pee of course haha) I dont get dressed until Ive done minimum 5 and I keep it super simpleonly do 4 or 5 different exercises and I can feel a huge difference in my arthritis and my balance and I can actually walk up the stairs right foot then left foot. I have been having to walk lead with right foot right foot right footfor years thats an unexpected change and Ive only been doing them faithfully for  a month or 6 weeks. theres a lot of videos on youtube , I found them a bit hard to absorb and put into practice (I a high functioning dyslexic and often get instructions confused )  but Id happily private message you the article link I got my simple practice from 

do you suffer from cramps? Like leg cramps at night or anything? 
I am super glad youre getting treatment and Im glad you found this board 

Obs

 



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4 years.... successful dragon slayer 



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Making the kefir now & have all thai kale & blueberries so let you know how that daily smoothy goes.  Should be ready in 48 hours.



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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Thanks 5 - yes I will speak with the Dr.  I suspect now it was just about keeping to a low fat diet.  My diet is really good its really inability to exercise for the last 2 years & damage being done fatigue etc.  I should be able to swim now when I tried a little while ago the leg went up & my head went down into the water..the weight of the metal in my leg I had no strength to bring it down. Actually it was quite funny...now my muscles are much much better & healed so I will try again soon.



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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So grateful to read your story Observer. Just like mine - I think I was infected then around 1985.  So sorry yours came through transfusion.  I too did not want to go interferon/peg I saw many people with side effects & not surviving.  I thought I was clear until 2003 when I went to get a check to find I had clamydia boy did they give me heavy antibiotics for that one - about 3 courses.  Anyway when they tested they asked if I wanted a Hep C.  The result of which they called me to return.  Frankly I was in shock & my parents needed a lot of my time then.  Years of fatigue followed - the rest is so similar to you including energy work & later reiki classes. I have no doubt that Chinese herbs work well but could not clear it though got me back on my feet & working,  I am acutely aware that some divine intervention brought me to this place in Koh Chang 7 years ago now where I have 6 Bungalows & very little to no stress, wonderful thai look after me which would have been completely impossible in UK with the total hip operation or the drugs for this dragon.  Still not able to do much exercise because of long healing.  However in two weeks of TX I was weighed at the local hospital a couple of days ago lost 4 kgs with food etc the same! So glad to hear life is so much better for you now.  



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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Hi from me too Blueslate. Welcome 

I am one of the people who was misdiagnosed with Hep B a few days after my transfusion (1983) turned my eyes bright yellow the useless Drs only advice was to avoid butter so being of the hippie persuasionI went to a naturepath and went on a huge regimen of vitamins and healing foods but HCV is a tricksy dragon..so while I was doing everything under the sun to deal with my misdiagnosed HBV the actual HCV was quietly wrecking havoc to all my systems then in 1990 I moved and got a new family Dr. and told him about the HBV so he tested me and of course it was negative so I figured I had fixed it with diet etc but.. I was still always sick with weird stuff, and plagued with fatigue headaches tooth problems arthritis (and on and on) I asked for and was tested for HIV twice because I was always sick {but I didnt have Hep B} and I wanted an explanation. So over the years I tried foods and vitamins and every immune building flavour of the month remedy I could learn about, from keifer to apple cider vinegar to pigs thymus glands no I tried acupuncture and Chinese herbals, reiki. But I was till very very sick and bare  functioning. Then I got a letter from the Canadian Red Cross that said my donor had been infected with HCV and I should get tested I did and low and behold I was positive for HCV. hmm


anyhooI refused the early interferon treatments and tried to continue to muddle along with all the alternatives I could find but continued to deteriorate and luckily in 2015 I was able to get on one of the new treatments (I was at stage 4 and had cirrhosis) I did 3 monthsbecause of the level of illness they added ribivaron to my DAA , it was a hard slog but I survived and am *relatively * quite healthyalthough the decades of hosting a  dragon have altered most of my systemsnow that it isnt replicating and destroying more of my cellsI am very happy and relieved to have a new lease on life.

 

anyhoowater and rest and regular meals are your best companions  to get you through this. 



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Hi Bluestate,

I took Harvoni and there were no dietary restrictions. I don't know about Epclusa. Can you get ahold of your doctor or pharmacy ?

Your health smoothie sounds good .

5

 



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hello 5 - thank you for all the encouragement.  Especially as I will be 70 too soon enough.  Really good to hear that you feel much better after the treatment!  I have a calendar to mark off the days of treatment, most unlike me but ensures I won't forget.  Let you know how how the appointment goes.  One other question I have is about butter, is it suggested not to use as I saw something in a blog but it wasn't clear.  The water no doubt helps & keeps the headache away.

I have decided to make a green drink which apparently knocks a fatty liver by 43% & shows a difference after 14 days.  Not sure if hype but will try.  Make Kefir & strain, use blueberries & kale.  Can freeze those two & make the kefir every day so easy.  



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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Bluestate,  it sounds like you are doing well on tx, that's always good

My name is "5" , that was my date of starting tx 5-1-18 , but I shortened it to 5 along the way.

guru is the status the forum gave me after I posted a bunch of posts . You won't be a "newbie" long which is your status right now.

keep on keeping on. Oh, I am 70 now and doing so much better since 2018.






-- Edited by 5-1-18 on Saturday 4th of June 2022 06:23:22 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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hello Guru & Tig - thanks both of you for the welcome. 

I did read Tig the insert thank you.  My pills are green not pink import from india.  Your insert was slightly different & I did pick up a study, & yes Guru I think you are correct the 24 week thing is due to F4 according to the insert on one of the Astral trials they give 24 weeks if over 15 on the Meld.  My reading was 15.7.  We will see!  I am 10 days into treatment beginning last two days to sleep better. On the 7th day I was pretty ill all day felt like my brain was swollen with a lot of fog & I felt terrible like my body was in a major war.  I am drinking at least 2-3 bottles of water, plus juice, coffee. 

I did stop everything a week or two before I went for the tests.  I had been taking 100% red reishi mushroom for a couple of months before & D3+K2, B vits, C 1000, Queracin, zinc etc.  The reishi I cannot get in Asia surprise surprise I did try some.  My Chinese doctor in London said I couldn't because it would not be strong enough for me.  I have no doubt over the years it has put my T cell count up, because everyone around, & there were many in the previous 6 years getting flu & other relatively minor illnesses & I never did.  Although good when I took it after some dental implants it felt like they were being pushed out, so I would take for a few months then stop for one or two over the last 10 years.  Because of the hip replacement 2 years ago now I decided not to take it due to the metal in my leg.  Its taken 16 months to heal properly so I started again just a couple of months ago.  That's the story.  I also seem to be losing a lot of water kidneys working better.  They found small kidney cysts one on each, told me fairly normal at my age & no problem at all.  The other thing that is really good.  Muscle pains particularly back, legs everywhere I've had for years & used Nurophen often.  The painkillers I began to cut out just occasionally for arthritis.  The pains have really subsided everywhere only occasionally in my back since on tx.  I had no idea for all these years it has probably been due to the Hep C.  now just take my thyroxine 125mg & Hep C meds.  Thanks again. I will update.



-- Edited by Blueslate on Saturday 4th of June 2022 01:54:34 AM

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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22



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Welcome Blueslate,

Yea it's been awhile since we had anyone on tx around here so I'm glad you found us. 

These forum friends helped me so much through my tx.

I did 8 weeks on harvoni and hubs did 12, I wondered if it was due to his f3-4 status and maybe that's why they have you on it longer...yes, do quiz the doctor about this becos 24 weeks does seem long.

Good idea to drop any other supplements during tx. I only took b12 and my thyroid meds. during tx.

I look forward to your posts and updates.......good luck , take it easy and yea drink tons of water.

 

5

 



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Exactly - I did question 24 weeks & asked isn't it usually 12.  Just said he wanted me on it 24 weeks.  I will discuss it with him next visit because he seemed to think that my VL would be right down.  All I can think is he accepts that I have tried to deal with it over the years quite vigorously with accupuncture & chinese herbs over a lengthy period & it did not clear it. I was very ill when I first went there about 2006, there treatment was serious, the herbs black old socks disgusting & changed every week slowly over 7 months became lighter & I began to feel really well. I did early in the 90's know some friends who cleared it with herbs so maybe because I am very overweight as well 103kgs though no ascites.  I think he views I have failed treatment.  I will ask him.  Also I was surprised to read here about the milk thistle as that he has given me too.  Once I went for herbs years later for a couple of weeks to Chinese with ping yin prescription & was given herbs & 4 months milk thistle.  But generally I have not used it.  It struck me as very interesting about the Hep B.  It came back completely negative & he re-interated I did not have Hep B on the phone call a few days later.  Now I see from the boards there have been many that thought they had Hep B so maybe during the latTer part OF 80's & 90's C was being misdiagnosed as B.  We will see as I am sure he will do blood work again 21st June.  I am grateful for some support so thank you.  I live with thai almost completely the last two years & sadly cannot speak thai so its not been so easy from that perspective .



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69, GT 1a, F, HepC, found 2003, Infected before 1989, SOT 26/05/22, Epclusa 24 weeks, VL 1m+, AST 94, ALT 82, F4 cirrhosis. Meld 15.7. Undetected 16/08/22. Final check 5/12/22

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