Home › Forums › Main Forum › Patient Stories › Hello from UK, need help please
- This topic has 37 replies, 8 voices, and was last updated 9 years, 2 months ago by Alsdad.
-
AuthorPosts
-
5 October 2015 at 9:12 pm #1860
I just did a Google, and gastroenterologists are available at both the Spire and Nuffield clinics in Cambridge. I’d phone their practice managers, have a chat and ask them to sound out their consultants. That’s all I did to find mine in Manchester. They will start out unconvinced because it’s in their programming. The key is to ‘sell’ yourself and your proposal to them, to be well prepared, with compelling evidence of your supply chain, etc.
5 October 2015 at 9:13 pm #1861Some posters have bought from both Greg and China direct and neither have had issues with customs.
Those buying from China received their drugs as a API( Powder form) the orders from India via Greg
received theirs in pill form.Anyone buying from The Buyers Club will be mailed encapsulated product I presume they will come with
documentation that is in fact acceptable to Customs.I’ve sent in my paperwork and payment to The Buyers Club I am having it shipped to London Ill update when it’s
reached the UK, I’m in Ireland we don’t allow drugs shipped via the post you can import on your person for personal use.I think you’ll find more UK Doctors come on board it takes time to convince them you could try Al’s
suggestion and call a few, worst case is you’ll get a no. You may find one who will.In terms of confusion. Firstly, The Buyers Club is new they are finding their feet with this in terms of
sending drugs on our behalf within the legal frame work they have to work in.Secondly, as new suppliers come on stream, Dr Freeman is having those products tested, its my belief,
at some point you will be able to buy direct from those generic suppliers.Lastly, you could buy from India right now, it won’t be as part of The buyers Club, my understanding is you’d
need a prescription to buy from them.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.5 October 2015 at 9:29 pm #1863Sirchinenge wrote:Some posters have bought from both Greg and China direct and neither have had issues with customs.
Those buying from China received their drugs as a API( Powder form) the orders from India via Greg
received theirs in pill form.Anyone buying from The Buyers Club will be mailed encapsulated product I presume they will come with
documentation that is in fact acceptable to Customs.I’ve sent in my paperwork and payment to The Buyers Club I am having it shipped to London Ill update when it
in the UK, I’m in Ireland we don’t allow drugs shipped via the post you can import on your person for personal use.In terms of confusion. Firstly, The Buyers Club is new they are finding their feet with this in terms of
sending drugs on our behalf within the legal frame work they have to work in.Secondly, as new suppliers come on stream, Dr Freeman is having those products tested, its my belief,
at some point you will be able to buy direct from those generic suppliers.Hi,
Thanks again for your help,
I had no idea you were from Ireland & are awaiting your medicines, for some reason I though you were from Australia – being moderator, etc. & here you’re almost next door.Are you getting all your medicines from China via the club?, if you don’t mind me asking?
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.5 October 2015 at 9:32 pm #1864hi,
Yes, I tried one of them & he refused, but will try another.
I also got another lead just now from here for a Doc in London,
Thanks!
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.5 October 2015 at 9:38 pm #1865I am buying via The Club and yes its coming from China.
Sadly, I am not in Sunny Australia
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.5 October 2015 at 10:00 pm #1866Hi Jolie, Could you message me the London contact please? It’s a lot closer to home! I did have a London contact way back, but wasn’t sure if he was still able to help. If anyone has the details, I’d be very grateful if you could pass them on via chat.
Thanks
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 HepC5 October 2015 at 11:00 pm #1867LondonGirl wrote:Hi Jolie, Could you message me the London contact please? It’s a lot closer to home! I did have a London contact way back, but wasn’t sure if he was still able to help. If anyone has the details, I’d be very grateful if you could pass them on via chat.
Thankshi LG
I just passed you the contact via chat, hope you got it OK,or if any problems let me know & I’ll re-chat 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.6 October 2015 at 12:27 am #1868Thanks Jokie, That is the one I had previously, Easier travel for sure.
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 HepC6 October 2015 at 4:29 am #1879Yeah we’ve adopted Jolie, we need him on enemy lines. Em
6 October 2015 at 12:02 pm #1914”
Yeah we’ve adopted Jolie, we need him on enemy lines. Em”Huh? Though Jolie is a ‘her’ not a ‘him’ ? ,
or are we talking about the Dr?
Has anyone seen this guy?Thanks (goes to make more coffee)
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 HepC6 October 2015 at 4:51 pm #1929Hi, I’m a newbie, this is my first post, HepC profile below.
I have decided that rather than wait indefinitely for Tx2, I’m going to try to get Sof/Dac via the Buyers Club.
I’m G3, F2/3, so I shouldn’t need RIBA, plus I had bad anaemia during Tx1 so would rather avoid it if possible.
So far I have struck out trying to get a script in UK, but still avenues available including the Manchester Clinic that people have mentioned in another topic.
I have a video appointment with Dr Freeman on 7/10, hoping he will be able to provide script & meds.
Will post again after appointment.HepC Profile
Born 1954, male
Genotype: 3a
Infected: early 80s
Diagnosed: 2013
Treatment: 24 weeks Int/Riba 2014 relapsed,
currently waiting for Sof/Int/Riba treatment (12 weeks) on NHS
Fibroscan: 10.3-F2/3 in 2/2014
Latest Viral Load: 52000 in 6/2015
ALT, ALP & AFP all in normal range 6/2015
YMMV
6 October 2015 at 8:58 pm #1938hello & Welcome
I’m also only a few days old on this forum.There are a few of us here Geno3 with exactly the same treatment history of Relapse after the old Peg/Riba tx.
It is disgraceful that due to NHS, NICE & the UK government incompetence we have no access to TX when ill, after paying lifetime of taxes & NI.
Instead we’re forced to look for help to countries that are much poorer then the West, if we wish to treat now & not wait for cirrhosis.
This is very sad state of affairs & I feel seriously let down by the UK governments, NHS managers & their incompetence.Good luck with the appointment with Doc Freeman,
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.6 October 2015 at 9:20 pm #1939Good luck. I can only agree with both of your sentiments. Dac is the way to go. Western governments are a pathetic lot.
G1 58yo F1 54,000 viral load Relapser 2003/4 Sof/Dac started 21/9/2015
6 October 2015 at 9:31 pm #1940emilio wrote:Yeah we’ve adopted Jolie, we need him on enemy lines. Em
Hi Emilio!
As London Girl said I’m a women! the last time I looked.
You’re free to adopt me as long as you’re from sunny Australia …not sure about the “enemy lines” , don’t like warfareLondon Girl,
Reading between the lines I think Emilio is referring to my post regarding Sirchinenge being Irish rather then Australian ( as I though he was), but could be wrong here
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.6 October 2015 at 9:47 pm #1941Hi Muir & Jolie -Girl
I can only agree, but I will say, that isn’t the UK, it’s England. Scotland are totally pro-active and have got rid of interferon for GT1s recently and been prescribing and treating with new meds for a while. Wales and Northern Ireland are apparently offering DAC, so it’s the English Gvt, the English Health Authority and NHS England who are trailing behind. Infuriating – Why? Hmm
We shall overcome !
Good luck to all.
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 -
AuthorPosts
- You must be logged in to reply to this topic.