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Dan's Twinvir story 8 years 4 months ago #4507

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Thanks LG. Very good advice. It is hard not to itch, but I will try. :-)

CJ I'm in UK. LG sent me links to good organic websites and I already use organic products.

Finished the first box today. Day 6.

I didn't notice any improvements yet. This could be due to a lot of symptoms before tx.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

Dan's Twinvir story 8 years 4 months ago #4533

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Best of luck tomorrow at the doctors Dan, :)
In the last few days I get few hours here & there of more energy & sense of better well being, kind of "calmness", but it does not last , usually followed by the more familiar fatigue & foggy brain.
This is a positive change from experiencing only fatigue & fog, now there is some brightness coming through from time to time , like sudden blue sky appearing from behind heavy dark clouds….& then it vanishes again,
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
The following user(s) said Thank You: LondonGirl

Dan's Twinvir story 8 years 4 months ago #4543

Try the " new itchy triple" ;-) (after checking drug interactions) :

Lavender oil in water + cotton wool pad, Cortizone and a small piece of a Piriton tab"
The tiny bit of organic mosituriser.

How are you feeling in yourself on the meds?
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

Dan's Twinvir story 8 years 4 months ago #4563

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Hi Dan, sorry to hear about your skin problems, I have eczema/allergies myself, it's in the family.
Completely agree with London Girl's advice. I have also found pure Aloe Vera gel - I keep in the fridge - mixed with a few drops of Lavender oil and Chamomile Essential Oils - very soothing and light, not greasy, my Pop loves it, helps me and my son when we get it too.

Very important to buy Pure Essential Oils and not Fragrant oils - they do not have the therapeutic chemical properties, in fact fragrant oils would make you worse.

Another soothing thing is Organic Chamomile tea, make a cup or pot of tea, let it cool and dilute with more cold water and soak a flannel/wash cloth and place it over your face or other areas for several minutes. If you have a bath, you could throw a couple of tea bags in with some Lavender Oil and soak yourself - very relaxing and soothing.
Don't have hot baths though - most people with eczema find heat makes it worse. As others have said oatmeal is great too. put a few spoonfuls in a clean sock/stocking tie it up and pop it in the bath, this will create the soothing milkiness without the chunks floating around and feeling gross!! Add a few spoonfuls of Epsom Salts too as this Magnesium source will relax you.

I also make up a Chamomile tea and add a few drops of Lavender oil and put it in a spray bottle and keep in the fridge and 'mist' myself several times a day. Always shake well before use to keep the mix blended.

Good Luck, there's a lot of great advice here.
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
The following user(s) said Thank You: LondonGirl

Dan's Twinvir story 8 years 4 months ago #4626

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Thanks Chejai. Will try some remedies advised.

LG- I feel a bit unbalanced at the moment. Like previous comments say, there is a war in the body. I got slight tremor at night, couldn't sleep first time from 1am until about 5, a bit tired today. Due to that I feel a bit dizzy and shaky, but still positive, as it could take time.

I hope to get some bloods done today or if they refuse at the hospital next week privately, to make sure that the meds are working and there are no issues.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

Dan's Twinvir story 8 years 4 months ago #4651

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I got no no, from consultant for monitoring on generics. I was told it is not allowed, as the quality of drugs is not great. I got the blood drawn, will see what I have after 1 week. My Alt/ast was just above norm and the Viral load 400000 2 month ago.

She told me that due to my skin condition, she won't offer interferon and will apply for a new 8 week treatment (Harvoni) when it is possible. She said possibly April or slightly longer. Next appointment is early March, but I hope to finish my tx by then.

I have GP appointment on the 21 st and hope to get more bloods from him. The 4 week VL have to be a private one.

Has anyone tried online blood tests in the UK?
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

Dan's Twinvir story 8 years 4 months ago #4654

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"I got no no, from consultant for monitoring on generics. I was told it is not allowed, as the quality of drugs is not great"

Dan, am sorry to hear this,
what does the consultant know of the quality of the generic HCV drugs ? not allowed ?? total rubbish,

Anyway, hopefully you can have some bloods done at your GP and/or privately, there are at least 2 brands of clinics doing it online in the whole of UK.
I know of people who did use their services for other health problems & they were happy with it.
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.

Dan's Twinvir story 8 years 4 months ago #4660

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Why am I not surprised at the MRI Hepatology Clinic's behaviour toward you today Dan?

Funnily enough, I had an eot review appointment at my GP clinic this morning. It was a new, very friendly and amenable doctor, who was expecting a routine patient appointment. I explained why I'd been booked in, and he asked me what treatment I'd been prescribed :D
I told him: "This might be a bit of an eye-opener for you, but bear with me for a couple of minutes." After me giving him the basics of my treatment program, he asked what involvement MRI Hepatology Clinic had had. Me: "None whatsoever." Him: "Why not?" Me: I think Dr ****** saw his arse over my getting generics without his say so." Much laughter from the GP. Next, he wanted to know how much involvement the GP Practice had had in my treatment. Me: "They did as much monitoring as they could, but I had to get my starting viral load result from my rheumatologist at MRI, and I had to pay for subsequent viral load tests privately." Him: "Why?" Me: " I repeatedly asked the MRI Clinic for my blood results, but was ignored. And Dr ****** from your GP Practise wrote to Dr ****** at MRI, asking him do do the viral load tests, but he wrote back with a flat refusal." Him: "That's just silly!" Me: "Yes, I know." Him: "Why has he been behaving like this?" Me: " I think he has his way of doing things, and he doesn't like any other ways over which he doesn't have complete control." On which note, can anybody tell me how I find out what funding my hepatology clinic/it's individual consultants receive from private enterprise? I intend to stoke some fires over this if I can. :evil:

Anyway, the new GP was absolutely fascinated by the whole story, took copious notes, and asked me to keep him updated on my eot progress, which I will.

It's become obvious to me that GPs in the UK aren't under the strict NHS Trust guidance that Hepatology clinics are, and are even less under the malign influence of Big Pharma. Which will make a lot of them amenable to giving help, with some charming-but-firm persuasion. Don't expect them to write scripts (but they're not absolutely necessary now, anyway), but monitoring should often be possible.
The following user(s) said Thank You: Chejai

Dan's Twinvir story 8 years 4 months ago #4670

Well arn't they going to be upset if you turn up UND already :P

You probably won't be after 6 days but there is some stunning results after 7 days reported on Twinvr . I know of 2 UND @ 7 days. You have a low viral load so fingers crossed Dan.

cheers
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV

Dan's Twinvir story 8 years 4 months ago #4675

Hi Dan, Sorry to hear of your hospital's response - I'm pretty sure my hospital will be the same.

Did you get the blood test before you asked them? This monitoring in itself isn't it? (!)

My GP offered me a viral load test last August and bloods, I thought I was going to get full bloods but when I got the result back, it was just 5 test results so I decided to get some done privately through Blue Horizon. My experience wasn't great, they held onto the test results for over 7 days, their excuse being that they hadn't been seen by a GP yet and I had some results out of range. I had already explained that I did not need them to go to a GP as I knew I was living with a chronic illness and the results would be going to my consultant. I also pointed out that as the test results were going to be sent electronically, they could just email them to me (!) and if they felt the need to send a separate GP the results so be it, but please send me my results that I had paid for in the meantime . This took up quite a few phone calls, an online chat and some emails and caused me added stress. On chasing the results up there was also a slightly unfriendly manner from their online chat office too. My instinct is they were angling for me to spend more on seeing a private GP, why else would they hold them back from me? It is very annoying that they had my blood and wouldn't send me the results! When I went to see my latest assigned consultant at the hospital, he asked where I had had the tests done' and then said "hmmmm". Who knows? They don't seem to want to tell patients anything. My bloods were taken at a private Squire hospital, they took an hour to get them - A right old palavar - you may have read my account on here, I was quite upset. The results it turns out were ready the same afternoon as taken, but BH held onto them for a week and I had to push to get them sent.

Others have used this company and haven't had any problems, but this was my own experience.

Try your GP first I reckon but be sure to ask him for a full blood test and VL not just LFTs.

Good luck.
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

Dan's Twinvir story 8 years 4 months ago #4676

"It's become obvious to me that GPs in the UK aren't under the strict NHS Trust guidance that Hepatology clinics are"

I agree, we were just discussing this this evening. Although GPs have budget restrictions that can vary, so it's not a 'given'.

I keep trying to rehearse what I say to my GP in advance...Brain fog is not helping!
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

Dan's Twinvir story 8 years 4 months ago #4688

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I got the blood test after I asked them about the generic meds. I didn't tell them that I'm on tx already.

The nurse took the bloods after I've seen the doctor and said that most results will be ready tomorrow and VL next week. She said that she'll ring me if they are abnormal. It will be interesting to see their reaction if it will be UND. They'll most likely ask me to repeat the test.

The blood tests were for liver and VL the codes are: LFT, VL, SBC, CE1, AFP, CRP, CE1, E2.

I guess I need to ask GP for the full blood count, lft, vl and kidney function test.

I'll see him in 2 weeks, which will be 3 weeks of tx.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
The following user(s) said Thank You: LondonGirl

Dan's Twinvir story 8 years 4 months ago #4738

,Hmm I wonder if they gave you a blood test after your generic conversation to check you out in more ways than one?
Oh well, if they recall you for another test, at least you get another freebie !

It will be interesting to see what happens in these circumstances as more patients take this route.

Good luck Dan

Ps My hospital, the Royal Free London, didn't offer me anything. No bloods, no Fibroscan, no discussion re symptoms, I had to push for an US as recommended by previous consultant . The doc basically said I will get nothing until treatment and that could be 8 months plus and no guarantee of that.

I read about patients who have a HepC nurse, I have never seen one at this hospital.
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

Dan's Twinvir story 8 years 4 months ago #4763

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I was told that I was not the first one to ask about generics in this hospital. I think I know who the other person was B)
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

Dan's Twinvir story 8 years 4 months ago #4764

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Dan wrote: I was told that I was not the first one to ask about generics in this hospital. I think I know who the other person was B)


:blush:
:D
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