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TOPIC: Cirrhosis and Resistant Hep C - New Symptoms are they serious?

Cirrhosis and Resistant Hep C - New Symptoms are they serious? 2 months 3 days ago #28092

  • barry666
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H there.
I have my first months supply of Mayvret sitting here and a script for three months more teed up at the Pharmacy. The extra meds are on their way to me. When they are all here I can start my treatment.
I have my 6 monthly appointment with the specialist nurse on Tuesday morning so Im hoping that they will provide support to me in some sort of capacity.
I know it isnt advisable but Im 5 days into cold turkey Quetiapine withdrawal which isn't pleasant but Ill get through it dead or alive so that it is out of my life before I start the Hep treatment. It feels like Ive been hit head on by a train but my eyes are on the prize. Sleep is erratic but my GP has advised that he will help me with that and I only have to ask if it gets real bad.
Not scared about the treatment at all apart from knowing that this will be my last chance due to Cirrhosis etc and that state of my insides. Withe the treatment taking 4 months and the 3 month wait after that to check whether I have cleared it, it'll be around April 2020 before I know. I have to look at both sides of the treatment coin as I am a hard headed pessimist (realist) so need to prepare either way.
I need to clarify with you all the outcomes and need an honest answer if you can.?
1. If the treatment clears the Hep and depending on the variables, I will be left with maintaining my cirrhosis and checking regularly for cancer and more deterioration right?
2. If for some reason it fails to clear it, the liver disease will slowly progress over time and eventually will turn into liver failure/cancer. I know that a transplant wont be offered to me if Hep C is still rampant and I don't think I would ask for one even if able to.
Are those scenarios reasonably accurate? I realise you cant predict the future but in general terms that's the way it would roll wouldn't it?
Thanks all. Ill keep you up to date on the treatment as it starts and goes on.
This forum has been amazing to me and has not only allowed me to get the treatment opportunity, it has also given me answers to questions I simply cannot get answered locally.
So glad FixHepC came into my life.
cheers all
G (Gordon)
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 2 months 1 day ago #28096

  • DrJames
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Hi G,

There is a 96% chance this treatment will cure you. Cured you are unlikely to die of liver disease, your liver function will improve, but you will still require monitoring for HCC.

In the event you're in the 4% (again) then yes, your disease will progress and it will quite possibly kill you.

Transplanting the livers of patients with end-stage Hep C is common - it's the commonest cause of liver transplantation. Patients with active Hep C are transplanted and then cured post-transplant - we find that Hep C is much easier than cure post transplant than with cirrhosis. Because the DAAs have been doing such a good job getting rid of Hep C it's much easier to find a liver transplant these days as the demand (from Hep C) has virtually disappeared.
YMMV
Last Edit: 2 months 1 day ago by DrJames.
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 1 month 4 weeks ago #28113

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Dear Barry,

I’m NO doctor but I’ve seen the blues when HCV has taken hold of most all of us. In my own experience you’re just a short jaunt away from coming back to your old self.
The HCV treatment/cure will also checkmate the sleepless nights your having and that will give you more energy, relaxation and mind clarity.
Remember to follow Dr James’s recommendations as he is a world renowned expert in treating this issue, I know that 1000%.
Yes I treated here and this Dr’s protocol made me HCV free and you’re success is just right around the corner.
Be well.
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 1 month 4 weeks ago #28118

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Thanks for the positives! I'm day 5 in to the treatment and following the doctors instructions to the letter. Insomnia is still an issue for me but that's also because of the quetiapine no longer being used. I guess I'll get used to that and hopefully it'll improve as time goes on. I'm a natural pessimist and that's hard to shake as because I work very closely with people in suicide prevention I guess its also a kind of emotional "insurance" that I've naturally developed in response to losing people from time to time.Also, my support network is small and mainly consists of a dog and cat but this forum is a major element for me now as I don't do social networking at all. I guess this is my "facebook"!
Thanks for all the support and for the chance to try again. Also, please tell me if there are things I should be doing on the forum that I'm ignorant of as the whole internet thing is something I haven't really embraced.
g
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 1 month 4 weeks ago #28119

  • Mar
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Hi G, I'm glad that you're following the doctors instructions to the letter, even if it's a bit difficult at the beginning. Hopefully it will be completely worth it at the end, and as Sven said, the treatment/cure will checkmate these sleepless nights. I understand your pessimism, especially since your work in suicide prevention, but being more optimistic can help with any difficulties during treatment, after all, on paper you have a 96% chance of cure as Dr James noted.

I think you're doing just fine on the forum, I can't think of anything else that you can do. Best of luck to you.
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 1 month 1 week ago #28166

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An update.
Almost through month number 1 and the nausea and headaches have stopped which is great!
The one side effect that I found difficult when I did my first treatment with Viekira Pak was the slow build up of depression by the last month. I have suffered from depression since my teens and know how it feels inside and out, but that depression on Viekira was a different, dark experience that took some time to fade after I completed treatment.
I just wanted to know whether depression is a possible side effect of what I am taking at the moment as I think I can feel hints of something starting to move in that have a faint sniff of before. I'm just trying to head things off at the pass as I have 3 more months ahead of me and I will have to be prepared in order to push through if its a possibility that I'm about to be hit like last time.
My specialist has ordered bloods for the end of each month of the treatment so I will post those up if you would like me to when I receive them?
g
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 1 month 6 days ago #28170

  • Sven
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The depression will fade 100%. I too experienced it and had to take a moment, day or two or three, to get myself back on track. Just know that those little virus bastards are leaving your systems and one by one your killing them off. Hang in there and you'll be free before you know.
May your God be with you always.
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 1 month 6 days ago #28173

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Thanks for your reply Sven.
Taking stock daily and getting through to bedtime I guess is the key. One bite at a time and eyes on the prize is what Im hearing from you.
Thanks for your wisdom!
Take care
g
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 1 month 3 days ago #28178

  • DrJames
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Hi G,

If you could post the results as they come to hand that would be great.

The depression with Viekira towards the end was almost certainly a ribavirin side effect so, fingers and toes crossed, it will probably NOT happen this time around.
YMMV
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 2 weeks 5 days ago #28237

  • barry666
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Hi Dr James.1 week and Ill be at the end of month 2. Attached are the results of a blood test I did a week or so ago. I would appreciate any feedback or comments on the results. I dont have a scanner so these are digital photos. If you cant read them, let me know and ill find someone with a scanner.

Regards

g

Attachments:
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 2 weeks 4 days ago #28247

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Hi G,

That all looks in line with expectations.

Your platelets have not changed and we don't really expect them to. Anything over 50 is enough so your good there. Your liver function has improved a bit which can be seen in the reduction in the INR (clotting time - needs liver made proteins to work properly) and fall in the ALT enzyme back into the normal range.

Things are on track. You're taking the best medication available for Hep C re-treatment namely Sofosbuvir and Maviret which are the strongest NS5B, NS5A and NS3/4A inhibitors in existence.

How are you feeling?
YMMV
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 2 weeks 4 days ago #28248

  • barry666
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Thanks Dr James.
To be honest i feel pretty rough. Heres what im going through:
In the last month I have had an ear infection and two bouts of chest in fection. I have psoriasis which has always been under control but its been coming up again in new places on my skin. Also been experiencing some throbbing neck pain which is annoying. Im also feeling low and Im still experiencing horrifying cramps in my inner things, just up from the knees. When I get them at night I cant get back to sleep. My balance frequently plays up and Ill miss the odd stair or fall against a wall or two to help me not fall over.
Some of these might be unconnected to the meds etc

g
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 2 weeks 3 days ago #28249

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Hi G,

Sorry to hear it's not smooth sailing.

Insomnia, specifically the can't get back to sleep one is a well known and quite common (20%) side effect of sofosbuvir. Unfortunately, you need that drug so the general approach is to use some sleeping tablets to tide you over while we wait to get to the end of the medication.

Hep C is a neurological disease and some people do get neurological things on treatment but it's more likely the balance stuff relates to the inner ear infection.

The chest infection and psoriasis are probably not related at all other than psoriasis tends to play up when people are stressed. What do you use to treat the psoriasis?

For the cramps you should try taking 2 magnesium tablets a couple of times a day, or just at night if that's when then main problem happens. Generally, that will settle cramps down.
YMMV
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 20 hours 19 minutes ago #28294

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HI.Sorry for the lack of answer to your query Dr James. I haven't been on the internet for awhile as I have been off work to help me relax and rest for the last stretch of the treatment. I use Daivobet for my psoriasis which is breaking out at the moment.
I am now almost 9 weeks down and its been pretty hard so far but I'm soldiering on. I have been losing weight at a steady pace and have lost almost 10kgs according to my GP over the last few months which I have not even noticed. My belts are peppered with new holes and Ive dropped from a 38 to a 30 in waist and have had to buy new pants as I'm starting to look like a tramp according to my elderly mother! lol
The cognitive changes and depression have been intense so far, esp the depression and I'm probably going to sign myself off work till the end of the treatment mid Jan. My Dr asked me if I wanted to stop the treatment but it's my last stab at it so I politely advised him Ill power through. He has offered to sign me on a temporary sickness benefit and rest asap but the drop in money will drive me into a hole esp over Xmas. I'm also unsure because being alone at home for almost two months will make the depression so much worse so I need to keep something going where my colleagues can keep an eye on me.
Wow its been a ride so far and Ill get bloods done on Monday and see my specialist at the end of the month so Ill upload the results and update you all then.
Its like being on the back of a Rodeo Bull who is sitting in the first car on the worlds most intense roller coaster with your hands tied behind your back! Win or lose I will not forget this in a hurry!

g
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Cirrhosis and Resistant Hep C - New Symptoms are they serious? 20 hours 15 minutes ago #28295

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Sorry, to clarify, "signing myself off work" refers to taking on no support work for mentally ill or suicidal peoplke as my capacity to take it on board is questionable right now. Ill join the admin game and continue my site management and landscaping role at the Retreat.

g
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