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


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RE: New member - Treatment one week Hep C
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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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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 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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Tig

65 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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N Bilich
Tig


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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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Tig

65 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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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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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

Tig


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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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Tig

65 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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N Bilich


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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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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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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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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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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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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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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 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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N Bilich


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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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N Bilich


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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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Tig


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I’m curious about your doctor prescribing the Epclusa for 24 weeks. Standard protocol has been 12 weeks, even with cirrhosis, and has been very effective. Make sure they keep an eye on your HBV status as well.

Here‘s a link to some light reading (lol) on Epclusa:

Epclusa Monograph



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Tig

65 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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Tig


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Wow! Allow me to welcome you to the forum. You have quite a history fighting the Dragon. I’m sorry you had such a roller coaster ride. That’s not at all uncommon with those of us that have been infected for decades. What’s important is getting it cured, and you will.

It has been quiet around here for the last year, or two. Actually that’s a good thing, because the new medications/treatments are so incredibly effective!

I’ll review your post again, and talk again soon. The one thing I must say, and it will provide you the most benefit during treatment is to do your absolute best to drink 3-4 liters of water everyday! I kid you not! These new drugs demand extreme hydration! Do your best to stay on that schedule. I’ll provide a picture below that might help you keep track, lol! Trust me, it helps. wink




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65 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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Hello everyone...ok first post.

I like some others was told I had Hep B & my body had cleared it.  Years later when pregnant with my son again told the same thing that I had had Hep B.  In 2003 I had a Hep C test the first & it was positive.  Family were sick so I just put it on the back burner.  I must have got it before 1989 so probably 35+ years.  I am F & 69 years now.  2005 I became sick very & went to the doctor who frankly didn't give me the time of day.  This btw is in England.  I went back to bed & wanted to die!.  Later I managed to go to a Chinese herbalist & after putting a very large blister on my stomach which lasted 5 months & 7 months of accupuncture & cooking chinese herbs twice a day I felt so much better.  I began travelling as although not cleared treatment was out of the question due to the cost.  Fast forward when I wound up in Clermont Ferrand hospital in isolation for a week with whooping cough they did all the tests on my liver it was now 2014.  I was told I had GT 1a - F-1 in blood work & fibroscan & told treatment not necessary yet check in year.  As I felt ok I didn't go back I am english & though I kept an eye on advances in treatment but after my local doctor attitude earlier I did nothing except go back to the Chinese herbs maybe for a couple of weeks each year.  Then Covid hit by now i had spent about 7 years between the UK & Thailand.  It was a no brainer whether to go back to UK so I stayed in Thailand.  They found in France that I was off the chart for thyroid in 2014 & I was balanced after about 4 months.  My reading for thyroid should have been 0.04-0.5 (something like that) my reading was 104 way off the charts.  I did not want to take the Covid vax and got Chinese herbs & vitamins etc in case & decided to stay put until it was over.  A year in my hip went & luckily I had insurance & I would never have got past the waiting list in the UK so in July 2020 had a full hip replacement.  So now I'm here a week into treatment that thank God is affordable.  A friend gave me the name of a doctor in Thailand & I went to see him 24th March 2022 a few days ago.  Ran all the tests.  I am F4 now cirrhosis 15.7 on the Meld chart. VL - 1m & AST - 82 ALT - 97 & I was immediately given Sofosbuvir & Velpatasvir 400mg/100mg.  Interestingly having read quite a bit on the boards I was also given Legalon Cap 140mg which turns out to be milk thistle!  I see many are counselled to stop it if they take it.  I rarely did but did take 100% red reishi mushroom but stopped.  Dr does not want me taking anything else even other vitamins so I did not prior to seeing him anyway.  So I am grateful to know to drink lots of water - I did not know & 5 days into treatment I began to feel lousy nothing specific though feels like my liver is being squeezed, just feel uncomfortable & unable to sleep properly all week.  All I know is I am very blessed as Dr says it should clear ok but he wants me to take it for 24 weeks.  Anyway if you read this lot.  Thank you for allowing me to write it.  



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