|
|
Post by Alsdad on Oct 10, 2015 23:29:15 GMT
A warm welcome to you over here Em. The broader we spread this generics info thing, the bigger it'll get.
|
|
dan
New Member
Posts: 13 
|
Post by dan on Oct 10, 2015 23:31:53 GMT
Great. Did you buy the Dac and Sof just for 12 weeks or for 24. How long was the delivery?
Do you know if private insurance would cover the Hepatoligist at Pall Mall? I can take out company insurance, which covers preexisting conditions, but not sure if they would cover small clinics. I'm just trying to consider the options for monitoring on tx, as getting the meds is becoming easier, but hard to find the consultant/ doctor to monitor on tx. How often do you see your private Hep. Consultant?
|
|
|
|
Post by Alsdad on Oct 10, 2015 23:40:11 GMT
Blimey, I bet they sound like rumba shakers when you swallow them Nadia  . Have you put them into a re-sealable container with a sachet of silica? It'll stop them from getting moisture contamination. |
|
|
|
Post by Alsdad on Oct 10, 2015 23:53:09 GMT
I got a prescription for 24 weeks supply of Sof and Riba, which was my original plan. But I ordered 12 weeks supply of Sof (with Riba that I didn't need by this stage) from Greg Jefferys, which took about two weeks from order to delivery. And I ordered 6 grammes of Dac API from Rachel at Mesochem (it was the minimum order, and enough for about 16 weeks), which I didn't need a prescription for, and was delivered four days after ordering it.
I don't know anything about medical insurance. Pall Mall are the best people to ask.
I've seen my consultant twice, and will probably see him twice more.
|
|
jolie
New Member
Posts: 23 
|
Post by jolie on Oct 11, 2015 16:35:39 GMT
hi Alsdad!
Thanks for starting this UK forum & sharing your tx story. I was following you on a few forums so am glad now this is all in one place.
Our tx histories are very similar, I too have Geno 3, I treated with Peg/Riba approx. 10 years ago & was UND at week 4 of tx & all throughout only to relapse 1 months after the tx finished.
It was a horrendous experience & I lost 2 years of my life to the tx & then post tx recovery.
Like you I was waiting for the new DAA meds that are more tolerable as I’d never re-treat with Peg/Riba again.
Unfortunately because my Fibroscan showed 8.7 PKA I was not offered the new DAA by my NHS consultant,
I’m apparently “too healthy” for any tx, something I’d strongly disagree with as 8.7PKA means advanced fibrosis & I have plenty of symptoms.
I hope to follow your footsteps with generic tx soon as 10 years waiting for the new DAA is really enough! with no tx in sight!
To make matters worse the hospital I’m under has just bankrupted in the last few weeks & the top managers resigned, just like many other hospitals across the UK, they apparently just run out of money! which is affecting all services & patient's tx, anyway….
Sharing stories like yours, Greg's from AU & the other pioneers is extremely valuable for all of us who wish to go via the generic tx route, so one again, Big Thanks!
You're all most courageous!
the best of luck to you !
Jolie,
|
|
|
|
Post by Alsdad on Oct 11, 2015 21:22:11 GMT
Hi jolie,
Welcome to the forum, and thanks for the supportive words. We've chatted a little elsewhere, and I know you were struggling to get a private prescription. Hope that doctor in London comes up trumps for you.
If you have any friends/acquaintances in pharmacy, the no-prescription Mesochem door has opened again subject to a letter from a pharmacist confirming that they will encapsulate the API's for you. These are the API's that are tested and used by Dr Freeman's Buyers Club.
|
|
debs
New Member
Posts: 4
|
Post by debs on Oct 12, 2015 12:13:12 GMT
Hi Alsdad - glad all is going well. Feeling quite positive reading through your story today ! Just wanted to ask - is ALL of your monitoring done privately now? And when if ever do you see the NHS consultant? Also how much is the total cost of monitoring, not the drugs, if I were to follow in your footsteps and use pall mall medical?
Thanks, deb
|
|
|
|
Post by Alsdad on Oct 12, 2015 15:03:00 GMT
Hi debs, My GP practice has been very helpful. The GP who has mainly been dealing with this was very sympathetic and understanding. She understandably declined to give me a prescription because she would be going into, for her, uncharted territory. But she offered to do my LFT monitoring for me, which she is now doing. And she wrote to my NHS Consultant asking him to consider issuing me with a prescription, and to monitor my viral load (which is a specialist test that my GP practise can't do). His response was pathetic. I only recently found out just how pathetic it was when I obtained my case file under the Freedom of Information laws. I've attached it to this post (the 20 weeks Sof/Riba he mentioned was a mistake by my GP btw). The only reason I'll be in contact with his clinic again is if my private treatment is a success, just to let them know  . The Consultant at Pall Mall Medical costs £225 per visit. I had to pay nearly £300 for a full set of starting blood tests with them because I couldn't get them from my NHS Consultant at the time. Viral load tests are expensive, about £250 if I remember correctly, but you only really need to have one done at about 4 - 6 weeks into treatment, then the one for SVR could be done at your NHS hepatology clinic (just act dumb and keep mum about the generic meds) on your next appointment there. I reckon you could get away with one private consultancy if you go prepared with your blood test results, starting viral load and recent liver scan/biopsy, and have your GP onside. But three visits would be better if you can afford it. At the end of the day, what price do you put on your health, and ultimately your life? You'll just get 'warehoused' for the forseeable future by the NHS until you're dying. Unless, of course, you try one of the barbaric Interferon-based treatments (I did) that have poor-to-middling SVR rates and will ruin your life for at least two years, or help to kill you anyway as it did with a friend of mine. Attachments:Letter 03 09 15.pdf (605.56 KB)
|
|
debs
New Member
Posts: 4
|
Post by debs on Oct 13, 2015 22:12:01 GMT
Thank you Alsdad, that is very interesting. And I did read the letter - happy to warehouse you it seems for however long, terrible. I am sick of being warehoused, lovely as the hep team are at my hospital. Recently my viral load has gone from low to 6 million and I feel very symptomatic now. Joint pain, muscle pain, fatigue and a variety of other symptoms too boring to mention.
I had heard that blood tests were expensive but £300 doesn't seem too bad and , as you say, in the scheme of things....it looks like generic Harvoni may be available soon according to gregs blog for around £1,000. So maybe monitoring, blood tests and the meds for around 2,000 on a credit card? Sounds good.
i have my NHS appointment soon at the end of the month. I think they may offer me the new triple ( sof, riba and interferon) But I am wary of interferon even for 12 weeks. Am in a bit of a dilemma. There were some heart issues detected previously, so in a way I want to be under their wing. Some mild bundle block. But they still said it was o.k to take interferon after some debate.
And the riba is not exactly a walk in the park. Doctor James freeman says the new meds are more gentle so I'm presuming that includes on the heart. What happened to your friend? How did the old regime contribute to his death? I am sorry.
Once again, thanks for sharing your story, Debbie
|
|
|
|
Post by Alsdad on Oct 13, 2015 22:35:50 GMT
The Pall Mall Consultant runs an NHS clinic in his 'day job;. He's impressive.
If you have joint pains now, nothing can prepare you for the body pain you will get on Interferon a few weeks in from starting, and the Riba will make sure you stay awake at night to 'enjoy' the pain 24/7. You will start lying down (not sleeping) downstairs at night because getting up the stairs is pure torture. If your bathroom is upstairs.....well, I won't go into that. And I was the healthiest hepper in the world when I started on that filth.
My pal wasn't in too bad shape when he started 48 weeks Inerferon/Riba, suffered but stayed positive throughout. Treatment failed and he was quite ill (as was I, but less so, when I stopped after 12 weeks). He just got more and more sick after that and died about a year later. Never saw his fiftieth birthday. Great big bear of a guy. Stong as a bear too.
These new DAA's are everything people are saying they are. They're a walk in the park.
|
|
debs
New Member
Posts: 4
|
Post by debs on Oct 13, 2015 23:53:52 GMT
Thankyou Alsdad, for being so clear, very sobering. Appreciate your honesty, debs
|
|
jolie
New Member
Posts: 23
|
Post by jolie on Oct 14, 2015 16:24:13 GMT
Dear Alsdad,
Thanks for your welcome,
I really like the way you organized the categories here, many thanks for your time & effort!,
I also enjoyed playing with the Avatar maker as you can see, had great fun doing it!
I hope you tx is progressing well & family feeling better?
Concerning my own hep tx, things are moving slow here due to a combination of working full time, chronic fatigue, brain fog, now flu & other obstacles on the way.
Still I feel very optimistic & hopeful to start the tx either in December or January.
As to Mesochem request, as you know well, getting a letter from a chemist/pharmacist is almost impossible to arrange in the UK, just as getting that private script for generics! from a private doctor.
So getting the API’s from China might not be the best option for me as it stands at the moment.
That leaves me with the option to buy Indian Sofo & Dac via Greg's, he wrote in his last blog that Dac should be available in India in the first week of November, so am trying to get the scrip in the next 2 weeks.
Very exciting times ahead!
|
|
thurl
New Member
Posts: 8
|
Post by thurl on Nov 4, 2015 7:27:20 GMT
Thanks for setting up this forum. It's a very helpful source of info.
|
|
jolie
New Member
Posts: 23
|
Post by jolie on Nov 8, 2015 19:02:25 GMT
hi Alsdad,
How are you doing? as you did not post much lately, are you OK ?
did you read the studies by the French docs about the possible heart rate problems? over on the Fix HepC ? Doc James's post.
nothing to worry about as very few patients are known to be affected but was wondering if you have noticed anything? any heart beat problems?
Hope you're sailing through & just having a great time away from forums & HCV talks,
best
Jolie xxxx
|
|
|
|
Post by Alsdad on Nov 9, 2015 14:45:03 GMT
hi Jolie, I'm doing fine thanks. Busy with work last week, and just got back from a weekend at PortAventura in Spain (not as good as it sounds when you're being dragged all over the park all day long by an excited 7 year old!).
On the heart beat thing, I've suffered from occasional mild palpitations for many years. Strangely (or not), they've improved slightly on treatment. Doesn't a contraindicated drug interact with the meds to slow the heart in a small percentage of patients? Anyway, my treatment's flying by, only two weeks left now! I'm a bit excited for you with your impending treatment after all the discussion, and hope to hear all about it.
|
|
.
.