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Fatigue - my first post 4 years 1 month ago #22074

  • London_R
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After 10 years being HCV / HIV + this is my first ever post in a forum. So Hello...!

I'm not sure where to start but I guess it is with the fact that next week I am going to see my Dr to find out if I am eligible for new treatment. Given that i am healthier than most I am expecting my Dr to say no for now. However, finding FixHepc has filled me great optimism that either way i will shortly start treatment and find an end to this dark cloud.

Nine years ago I took interferon / ribacvarin for 72 weeks, got so sick, and never gave up but was so unlucky like many. The stories i've read about new treatment make it sound like a breeze.

A few questions i wanted pose as in 10 years I have never met or discussed HCV with anyone else in the same boat...

1 - I used to be very active, i'd go to the gym 5 x a week, run, go to yoga and always feel full of energy. I do have a stressful job in the city but I used to manage an active lifestyle but since last summer this has changed and I literally drag my ass home after work every day exhausted, i've even forgotten what the gym looks like!!! So after 9 / 10 years of HCV is anyone else struggling with energy? Or is it just me? You read people don't notice symptoms for 20 -30 years but I am trying to make sense of how HCV affects you.

2 - for those of you on treatment / finished treatment successfully - how are your energy levels / does life really return to normal afterwards? Will i ever get my energy back ? (I am 40)

3 - any useful tips / knowledge worth sharing please let me know.

Thanks all #love #love #love #love
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Fatigue - my first post 4 years 1 month ago #22075

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London welcome to the forum.

To answer your question it was dragging for many years until I started treatmentt. Once I started the energy levels picked up many times over and I began to think clearly again for the first time in decades . Oh yes it is the HCV make you drag and think not as quick, and you can do something about it .
I'm no doctor and I don't give advice but my opinion is if you can get in on the GP2U trials, I would get in and get treated now and get on your way to SVR in 3 short months!
I did it, follow my blog and many others blogs who also made it through with barely any side effects to talk about .

Do you know that there is another avenue out there besides big Pharma with the same exact quality prescription for 1% of the price it's incredible . Also the physicians, the connections, the members/people answer every email it is an incredible program and big kudos must be given to Dr. James Freeman, MonkMed, Dr De Debasis and everyone else involved.
You have landed in the right place, you will have many friends here who will move you forward and want you to succeed. Take advantage of this opportunity while you can and don't look back.

In good health to you my friend.
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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Fatigue - my first post 4 years 1 month ago #22077

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@Sven, thank you for your response and kind words. I'm excited to know there is an end in sight, it feels like a long journey!

I just read your stats and congratulations on clearing HCV - such a relief.
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Fatigue - my first post 4 years 1 month ago #22080

Hi London_R

I'm not sure how long I had the virus but it is estimated about 20 years when I was diagnosed. Fatigue and crippling headaches crept up on me over a 12 month or so period which affected my work and home life. I have been extremely lucky insofar as I was alerted to FixHepC very quickly and organised my meds through them. My viral load was fairly high but my liver was in pretty good shape when diagnosed. I went on a waiting list at the Bendigo Base Hospital (which had an 18 month wait) and was well and truly cured with the generics I sourced through FixHepC and I hadn't even got an appt by that point. I have heard that the people being treated with Harvoni etc. at the liver clinic at the Hospital are those who have very compromised livers and are very unwell. Don't get me wrong, they are deserved of the treatment and I certainly don't begrudge that at all although it does mean that those like myself at the time would be waiting quite a long time for treatment.

I reached SVR 12 and am cured. My energy levels have increased ten fold and it is really noticeable given that I was nodding off at my desk at work on occasion. I feel so "different" in a good way as I did two years ago. I feel as wonderful as a 61 year old can feel :) :) :)

This Forum and the support form the people on the Forum was instrumental in keeping me sane throughout it all. I was terrified when I got the diagnosis from the Doctor but after a lot of research and reading the journeys of some on on the Forum I have been incredibly lucky. I made a decision very early on not to got down the road of Interferon and Ribavirin.

Good luck with your treatment and stay tuned to the Forum. There is a lot of support here :) Also a lot of humor on occasion too!! :)
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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Fatigue - my first post 4 years 1 month ago #22083

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Hi London_R

I was diagnosed in April, massive shock for me..... I'm 48 with a 12 YO child. I'm not sure when I got the virus....
It was either 30 or 18 years ago....but we will never really know. I had brain fog but no other symptoms.
NHS offEred me interferon and ribaviron, as I wasn't eligible for the new meds ( to be eligible fibro had to be 9.5)
I read an article in newspaper ( returning home from London) that mentioned generics and fix hep c.
I decided to go along that path, I told my GP, nurse,and Consultant...
I got the meds from fixhepc on Monday 5th September 2016, I started taking them that day.
My ALT went down to 20 and my VL UNDETECTED at the 1st blood test.
I have always been a high energy person who either swims,goes the gym, or does yoga 3-4 times a week.
I'm 5 weeks into treatment. I am still doing all this stuff, but not my usual 30 minutes.... just 15 minutes at the moment.
Side effects for me have been difficulty with sleep, and fatigue ( occasionally)
It's difficult on an emotional level, this is because I haven't been able to tell many people ( just 2)
But looking at my blood results and the fact I've got undetected on the virus.....it's going to be worth it.
Good luck with your journey, I've found this site to be invaluable. I don't feel so alone, and get good advice from the members and Dr James Freeman....
best thing I've done this year is find fixhepc and hopefully clear this Virus
Donna
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Fatigue - my first post 4 years 1 month ago #22084

  • LondonGirl
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Hi LondonR mate :+1:

I was also really 'fit' pre diagnosis and very toned muscles. I suddenly developed severe hip, lower back and joint pain and was sent for an x-ray. as I could I could hardly walk. I went to a party one night with old friends and drank wine, the next day the pain had spread to my whole pelvic area. Short story is the Doc said she wanted to run some tests and there it was. My muscles had wasted and could not support my joints and I started to rapidly lose weight and other problems. I was also permenantly exhausted and pretty depressed, I knew the suggested triple tx at that time was Interferon Riba and the even more ugly Boc or Telap :ohmy:

Thankfully, I found hope. First by reading Greg Jeffereys blog, then on discovering MonkMed on Twitter and FixHepC here - What a revelation ! My London Dr had been very supportive & said I needed to treat soon, but then he suddenly retired and was replaced by another Dr who just said 'you can wait' which was devastating, he also said he wouldn't monitor me if I took 'the private route'. I found him arrogant, patronising and also told me a few porkie-pies, I was devastated. I had spent over a year in bed mostly depressed and with joint pain which didn't stop on resting and which I couldn't take pain kilkers for, just researching. I waited for the licensed Indian generics to come out at the start of this year and started treatment Jan.

Within weeks I actually had a spring in my step and was more energised - Totally Amazing! I was one of 4 % that with a slow responder to Harvoni, but the under advise of Dr Debasis & Dr Freeman I extended with Sofo/DAC and Dr Freeman added a 3rd med for the last 4 weeks. I've now been undetected for 10 weeks and I'm waiting on final SVR 12 results to come through.

I am so improved, have gained weight and started to engage with life again. joints and muscle strength will need building up again, but really, although I am cautiously hopeful, even if the result was not perfect this time, my quality of life is so improved and my fibrosis score much lowered. If I had to treat again, I would take the same path, without question. If I had been given NHS treatment, it most likely would have been 8 weeks treatment with no extention, I believe the advise and treatment here is superior, without doubt. NHS are restricted by bureacracy and cost and will try the cheapest option first in many cases. As you are a previous relapser, You have landed ithe best place here for treatment advise and support.

Some London hospitals are totally supportive of patients taking generic medicines via a trusted supply chain such as Redemption, others not. I have learned over time not to say too much until you know their policy on this, but ultimately they do have a 'duty of care' and as my current (and only!) lovely Specialist nurse said 'you have saved the NHS thousands, it's the least we can do' but it took me a while to get there via a few ups and downs :-/

If there is a 'good' time to arrive here, it's right now, with the first trial results in and more health authorities supporting, you've come to the right place - If you want to PM me for any NHS London advise please feel free, I've been around the block a few times with this! good luck and keep us posted , I'm pretty sure you will be starting to feel better soon.

LondonG :)
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
Last Edit: 4 years 1 month ago by LondonGirl. Reason: LGs spectacular typos
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Fatigue - my first post 4 years 1 month ago #22085

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Hi LondonR
I was diagnosed in 2004, I had probably had HepC since the 70s.
In my late 40s I started to feel quite unwell - it felt as though I was living in a shadow world and I thought surely this is not how the rest of my life will be.
Before I'd had kids I was a big gym junkie and also did martial arts, but after they came along I found it impossible to work full time AND commit to a regular fitness regime, but when the youngest was 5 I started regular Yoga classes and practice, which I believe has helped me big time in many ways.
The deterioration started around 3 or 4 years after I'd started Yoga and I just couldn't figure it out.
Once I got the diagnosis I researched interferon and said thanks but no thanks (and was pretty much called an idiot by a specialist) and started taking lots of supplements which helped a little bit. A chance conversation led me to acupuncture which lifted my energy levels significantly and gave me the energy to go back to the gym which in turn gave me more energy. Around this time I heard of new treatments being developed and was advised to wait as my liver was in good condition.
So I waited. Around 5 years.
Then I also heard about the wonderful Dr James aka living legend and decided I would also go down that path. However the doctor I was seeing at the liver clinic suggested I wait a few more months as the Australian government was about to fund the new treatment. This is what I did and the rest is history.
My experience of the treatment is that in the first week I noticed that my sleep quality improved exponentially. OMG - bliss. The only negative side effect was the occasional headache that would last a few minutes. On the plus side, my brain got much sharper and clearer, energy levels changed completely, everything was better. It's only when you start to clear this shit of a disease that you realise how much damage it does to your whole being.
At the end of the first month, my liver functions were normal and while the virus was still present, it was in such small amounts as to be unquantifiable. At the end of treatment it was undetectable, and also 3 months after end of treatment - I had achieved SVR (Sustained Virological Response) which is the holy grail of these treatments.
Hopefully your path and outcome will be equally simple and happy. The you can tell those miserable bastards to go and do the proverbial
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Fatigue - my first post 4 years 1 month ago #22086

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Hi London_R,

LG, Beaches, Lynne and Donna described almost similar sx as I experienced (some headaches in the first ~3 weeks of treatment and some light episodes of insomnia).

What I could add is only this: in Romania, on the opposite side of the Earth where Australia is, people experience similar side effects :), so I am glad that I have this in common with the Australians ;-).
By compare with the interferon treatment I had some years ago (which was quite hard....), the treatment with generics seems like a piece of cake, much easy.

I wish you safe and smooth journey!

RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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Fatigue - my first post 4 years 1 month ago #22090

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Lynne, Donna, London Girl, Beaches, RHF,

Having posted for the first time last night I am touched by your responses this morning. Thank you all for taking the time to share your experiences.

To be honest the 72 treatment I did years ago was a living nightmare for me and from what you are all saying I'm now excited.

I haven't seen my liver Dr for 18 months due to appts being rescheduled but like you it's gone from we have wonder drugs to your not eligible.

My regular Dr has also just retired so I'll be seeing a new Dr and have no idea on their stance - St Mary's in London if anyone has any experience?

Thanks again all and congrats on achieving SVR - it's my dream to come true.

Big hug #love
Last Edit: 4 years 1 month ago by London_R.
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Fatigue - my first post 4 years 1 month ago #22091

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Hi again London_R
Just a quick question or so....
The doctors you are going to see soon, do you have to pay them?
Are you fairly sure of how much help they will be to you?
May I suggest you maybe save your hard-earned (and your precious time) and get your meds from a tried and trusted source and get treated?As I understand it you don't need a single thing from the doctors you have already seen and have said no to you

I'm Australian, so I hope you don't think I am being too direct. Some of us are like that here :cheer:
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Fatigue - my first post 4 years 1 month ago #22092

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I have heard St Mary's London are one of the supportive hospitals, Good luck :+1:

LG

ps I have also found,with a variety of hospitals, that when the computer system generates a new appointment date, sometimes you can phone and ask if there's a closer date, it worked for me a few times as some people cancel or change appointments.

pps (!) Also found Dr Freeman's GP cheat sheet was appreciated by my GP and resulted in a favourable result, can print out and give them a copy.

fixhepc.com/kunena-2015-11-10/gp-cheat-sheet.html
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
Last Edit: 4 years 1 month ago by LondonGirl.
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Fatigue - my first post 4 years 1 month ago #22093

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Hi Beaches, I don't have to pay as it's the NHS. I am literally going to ask them for treatment. If they say no - as expected - I will ask if they'll monitor me as I will buy the medicine through here. If not I will look at other options to get monitored. And as yet I haven't got any formal medical advice from here yet so watch this space!

LG, St Marty's have usually been great but my consultant just retired so I am not sure what the new Drs stance is. But I reckon they will be supportive.

Thank you
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Fatigue - my first post 4 years 1 month ago #22095

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Hi London _R
I was only diagnosed 6 months ago
I asked Consultant to monitor me when I got my own meds from fixhepc
He didn't say "yes" but I told him I was going to go ahead and get meds.....I also told that to my liver nurse and GP
I got the meds and luckily for me they will be monitoring me...
My GP practice is a large one in the city centre, and it has a liver clinic one day a week.
I think that this may have helped me somewhat?
The only meds on offer from NHS were interferon and riberviron.
I didn't want to take them!
I would have contracted the virus 20 years ( or longer) ago...
As a final thought I was willing to take the meds and not get monitored till the end of treatment....
I think they must have a duty of care....
And I just went ahead and got the meds, all the time keeping liver nurse and GP and Consultant informed...
Best wishes #flower #flower #flower
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Fatigue - my first post 4 years 1 month ago #22096

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Hi Donna,

Thanks for your kind words ☺️☺️

I was diagnosed 10 years ago and there wasn't a choice so I did what I thought was best.

I like your attitude as I'm willing to buy meds and do it without my Drs support. However, I think they will help, and as you say they have a duty of care.

Looking forward to telling my story and a happy outcome
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Fatigue - my first post 4 years 1 month ago #22098

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London_R wrote:
Hi Donna,

Thanks for your kind words ☺️☺️

I was diagnosed 10 years ago and there wasn't a choice so I did what I thought was best.

I like your attitude as I'm willing to buy meds and do it without my Drs support. However, I think they will help, and as you say they have a duty of care.

Looking forward to telling my story and a happy outcome



Yes I too was told I have the right to life saving medication i.e.: Duty of care....BS.
If you or anyone is not sick enough they will not give that right of meds or duty. Bottom line, I'm glad they didn't as they wanted me to take Vikera Pak w/Ribiviron, I don't think so?

So my GI acted like he was forced to take my bloods but now he sees it is the same results that they get with branded Harvoni.
I'm glad I went with GP2U, I'll never look back.

In good health to you
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!
Last Edit: 4 years 1 month ago by Sven. Reason: Grammar
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