Searching for monitoring in UK

This topic has 11 replies, 10 voices, and was last updated 8 years, 3 months ago by LondonGirl.

Viewing 12 posts - 1 through 12 (of 12 total)

Author

Posts
17 April 2016 at 12:25 pm #15634
Fernandez
- Topics: 1
- Replies: 0
- Total: 1
- Novice
@fernandez
Hi everyone!

I live in London and I am 32 years old. I’ve been diagnosed 1 year and a half ago with hep C. I know it sounds unbelievable but I contracted the virus from my ex partner around 2 years ago. During this time I was positive at the moment I contracted the virus but next 2 test – every 5 months – It was undetected. That’s the reason why my doctor said I was one of the around 25% of people who is capable to clear the virus within the first year but they left my case open as my transaminases were still high. 3 months ago they found the reason of this high levels was because I was positive again with HVC ( vl 4000 and genotype 1b) as well with coeliac disease… After studying my case in the hep department, doctors have considered the best option is getting treated with interferon + Rev as soon as possible as I am still in the acute stage with very high possibility of success clearing the virus. On the other hand, to get new drugs from NHS I have to wait…don’t know how long but for sure not in a short term as lot of people in worse situations are before me.

At the very beginning I said yes, of course! I want to get rid of it asap! But when I’ve discovered I can be treated with new drugs imported from abroad for and affordable price I don’t want to think about interferon… It scares me a little bit I’ve told my doctor about it but she said If I want to get ‘unknown’ drugs they have to stop monitoring my case by policy…on Wednesday I have an appointment with them to said my final YES or NOT.

I still have the hope of finding someone who could monitor me during the tx but I’ve hears private clinics are very expensive. Please, if anyone can help me in terms of finding it in UK I’d really appreciate it!!

Many thanks in advance!
17 April 2016 at 12:37 pm #15639
Chapel
- Topics: 7
- Replies: 112
- Total: 119
- Guardian Angel
@chapel
There are others here who can advise you directly but this thread is worth reading for a start: http://fixhepc.com/forum/patient-stories/854-has-anyone-used-the-buyers-club-from-the-uk.html#13788

M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!
17 April 2016 at 12:45 pm #15642
Ariel
- Topics: 3
- Replies: 1,060
- Total: 1,063
- Guardian Angel
@ariel
There are a few friends who blog on here pop in a search in the search box on say, NHS and see who is about and on treatment. I’m sure that the UK patients use Monkmed too. I’m in Australia so I can’t help personally but the office at FixHC might be able to advise if you email them too
Good luck hope to see you on tx asap
Cheers from Ariel
17 April 2016 at 12:58 pm #15643
flyingfox66
- Topics: 2
- Replies: 170
- Total: 172
- Guardian Angel
@flyingfox66
Did they happen to mention what state your liver was in? Have they done a Fibroscan or some similar test for cirrhosis?
If your liver is in good shape you can afford to take your time sourcing treatment, and there is less need for dedicated monitoring.
Seeing as you have not had it very long it seems likely your liver is still quite healthy.

F49HepC25ysGT1a
mild”
17 April 2016 at 1:19 pm #15645
Gaj
- Topics: 29
- Replies: 1,402
- Total: 1,431
- Guardian Angel
@gaj
Welcome Fernandez,

We do have a number of UK members who will be able to provide specific advice on your best options for monitoring in the London area. Until they arrive please feel free to ask us any more general questions you may have.

G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
17 April 2016 at 1:51 pm #15646
klhilde
- Topics: 30
- Replies: 223
- Total: 253
- Guardian Angel
@klhilde
The actual importation should be easy at this point, just find a reliable seller and order it in. The Bangladesh companies seem to have the best prices right now. Alimul Razi from Incepta, (Parvez on this forum), has been particularly helpful. We have reports of successful purchase from all four Bangladesh companies.

For a slightly higher price, you can join the REDEMPTION eTrials and use MonkMed’s sevices. MonkMed likely has a list of Drs. in the UK that will order tests for you, or you could go the route of using independent testing facilities. And you get the services of MonkMed’s Indian doctors for advisory purposes included in the price. There are some people here on the forum from the UK that have used the independent testers. Likely they’ll show up here and advise you.

Also, there are many companies out there that will put you together with specialists around the world, as a quick search of “medical tourism” will turn up. For example I searched on a site called WhatClinic.com to find a dentist in Sofia, Bulgaria, to do some emergency dental work for me …. I’m in Sofia right now, it’s a nice place. The site has gastroenterologists on their lists.

Bulgaria and Poland are only a quick flight away, and on WizzAir or RyanAir it’s inexpensive it you can travel light.

I searched this site, https://www.health-tourism.com to find my gastro Dr in Thailand. There are many such sites.

I think I remember a member from the UK jumping over to Spain to find a monitoring Doctor. My point is this …. Don’t let the stubbornness of the UK medical system stop you … You can do this.
17 April 2016 at 1:58 pm #15648
Debs
- Topics: 6
- Replies: 243
- Total: 249
- Guardian Angel
@debs
Hi Fernandez, don’t worry I think things will be getting a whole lot easier soon as Dr Freeman apparently blew them away at the.Barcelona Liver Conference and many Consultants will have been there too!
I am northern and lucky to have a sympathetic hospital obviously too far for you! London Girl will be on soon and she will have some good advice for you. The link Chapel posted is definitely worth reading in the meantime.
All the best, you have come to the right place,
Debs

PS I would definitely recommend going through the Buyers Club as you get support via Monkmed care “thrown in” and they are wonderful.

PPS. Just thinking about it again, when you see your doctor on Weds , can’t hurt to gather as much info as possible to try to change her mind.
Cipla drugs are used by the NHS and my HepcvirL (sof/led) is made by Cipla. So they are not “unknown” drugs (also mention the secure supply line that is in place via the buyers club, that makes them feel more relaxed.) I am being monitored by my specialist nurse at a big and very well respected northern hospital. So your treatment team are not really going out on a limb, it’s all been done before at different hospitals around the country, nothing for them to worry about really, they are only going to do your blood tests and VL tests.
I hope maybe LG will have info re the London area if you can’t persuade them.
18 April 2016 at 1:12 am #15698
LondonGirl
- Topics: 16
- Replies: 1,348
- Total: 1,364
- Guardian Angel
@londongirl
Hi Fernandez, I sent you a private message a day or two ago.
lg

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
18 April 2016 at 1:42 am #15700
Gaj
- Topics: 29
- Replies: 1,402
- Total: 1,431
- Guardian Angel
@gaj
Hi Fernandez, to find Private Messages click on your user name or go to your profile. You will find the PM link on the left hand side under your details.

G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
31 July 2016 at 3:48 am #21702
akiniai
- Topics: 0
- Replies: 6
- Total: 6
- Novice
@akiniai
Hi everyone,

I was diagnosed just a few months ago. I was reading everyones stories and this forum helped me alot. It gives me a hope. I have HepC 3. I live in London. I was offered a half a year of peg interferon +ribabirin treatment by NHS. I have a very active job, I spend all day on my feet. I am so scared that I will not be able to have a treatment or I will have to leave my job. I would love to buy Sof+Dac on line but I am afraid to tell my doctor about that as someone mentioned that he might refuse to treat me. Please help me. I do not know should I ask my doctor about it. Does anyone have any advice Please.
31 July 2016 at 3:52 am #21703
Tina-Hill-facebook
- Topics: 28
- Replies: 705
- Total: 733
- Guardian Angel
@tina-hill-facebook
Hi akiniai & welcome.

Have a read of this thread re UK treatment options.

http://fixhepc.com/forum/geopolitics/1210-major-uk-hospitals-that-monitor-generics.html

SVR 24
31 July 2016 at 11:59 am #21729
LondonGirl
- Topics: 16
- Replies: 1,348
- Total: 1,364
- Guardian Angel
@londongirl
Hey, have PMd you, I have lots of advise

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
Author

Posts