Access to Advagraf post Brexit - British Liver Trust

British Liver Trust

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Access to Advagraf post Brexit

Poobear69 profile image
Poobear69
β€’37 Replies

Hi all, I don't want to get into a political debate re Brexit! I wanted to mention that when in clinic recently my liver pharmicst mentioned to me that they have contacted manafacturers and there will be approximately 6 months of this medication in stock. During and this period negotiations with manafacturers and suppliers will take place to ensure that this medication is available. I wondered if any of you, post transplant, have had a conversation regarding this in their own clinic? Again, no politics please πŸ˜€

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37 Replies
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It’s a regular topic in my clinic, I am given plenty of prescriptions in various dosages. He always ensures that I have a minimum of six months supply.

Poobear69 profile image
Poobear69 in reply to TT-2018

Im in clinic, at present, 3 monthly so get a 3 monthly prescription.

Hi my hubby was given 12 months supply even though appointments are 6 monthly.

Pharmacist was in on the consultation.

Hubby nearly 8 years post TP

Poobear69 profile image
Poobear69 in reply to freddie76

Thanks for your reply. I'll speak to my pharmacist in clinic. Could I ask which transplant centre? Many thanks.

freddie76 profile image
freddie76 in reply to Poobear69

Kings college TP unit

Poobear69 profile image
Poobear69 in reply to freddie76

Same here. I'll speak with the pharmacist.

I can't see this being a supply problem post brexit as I believe it comes from the USA. Astellas Pharma company. I'm on Prograf, 1mg

Poobear69 profile image
Poobear69 in reply to

Not whats been communicated to me by my liver pharmicst?

Poobear69 profile image
Poobear69 in reply to

My what's been communicated to me by my liver pharmicst Richard? I'm on Advagraf 5mg once a day.

Hi,

By saying "I don't want to get into a political debate re Brexit! " you just made it into a political discussion.

Politics is life and life is politics, especially health care, just ask the average American. We have to all make sure that we preserve our National Health Service and that means becoming politically aware and, if we have the time and energy, active. Its not about party politics but what is in the best interests of anyone with illness or the potential to be ill, which is everyone.

I feel fairly secure as only a few weeks ago I collected six months supply of my Adoport and Mycophenolate. I hopefully nothing does happen to cause problems for those of us taking life saving medication, we can only hope all goes well but who knows.

Jim

Poobear69 profile image
Poobear69 in reply to LAJ123

Yeah ok πŸ™„πŸ™„πŸ™„

ThreeSmiles profile image
ThreeSmiles in reply to LAJ123

Good points Jim πŸ‘

PCBnPBC profile image
PCBnPBC in reply to LAJ123

Life is politics is so true. Our NHS is potentially under attack. Not wanting to be party political (which I am sure the original poster really meant) of the two main parties out there, it is reasonable to say one appears more willing to allow the NHS to become more finance based (some think this is a good idea) and the other is desperate to preserve our NHS as a system that is free and available to everyone (some think this is a bad idea)

There, .............managed to comment without mentioning what a cnut BoJo is :)

Yeah ok πŸ™„πŸ™„πŸ™„

Hi

Being in France I hope I don’t have the same problem. However two months ago it proved difficult to get myfortic. One of the main suppliers in the Paris area was out of stock. I had to go to a different pharmacist who could get me tablets of 180 instead of 360.

Hubby has been changed from one of his diabetic drugs. One reason given by the specialist, apart from his needs changing slightly, was that it is now made in China and not as good as it was before.

Have a good day

Isabelle xx

PeterP54 profile image
PeterP54 in reply to Isabelle2

That must be a big worry that there is a suggestion that Chinese supplied medication is not as potent. Surely, the EU medications agency is batch testing all medication, whether made in the EU or imported.

I believe my Prograf is made in Ireland, but my supplies are usually packaged for: Poland, Spain, Greece, in fact anywhere but the UK. Never, so far experienced other than a days delay in the pharmacy getting my prescription in. I am prescribed two months at a time but I am usually requesting more when I have just less than a months worth left.

Isabelle2 profile image
Isabelle2 in reply to PeterP54

Yes. His endocrinologist was very scathing about some Chinese medicines. I imagine the EU is looking into it.

Trust9 profile image
Trust9Administrator

Good morning Poobear69,

I have attached the link to the most up to date information we have from Medicines and Healthcare products Regulatory Agency (MHRA).

The British Liver Trust have approached MHRA again in August and we will update you all with the reply when we receive it .

britishlivertrust.org.uk/go...

Best wishes

Trust9

Poobear69 profile image
Poobear69 in reply to Trust9

Thank you for this. This does not however fill one with confidence? I do appreciate you sharing this information though.

I was at Kings 2 weeks ago and asked the pharmacist and my consultant they both assured me there was nothing to worry about,as most pharmacuticals are made in this country. I am also on Adagraf

Let's hope they are right

Elizabeth

Poobear69 profile image
Poobear69 in reply to Beture47

Not what I was told two weeks ago at Kings? Worryi g that different information is being communicated?

Beture47 profile image
Beture47 in reply to Poobear69

Yes very

Poobear69 profile image
Poobear69 in reply to Beture47

Clearly states on my Advagraf box that the drug is manafacured and distributed from The Netherlands?

Beture47 profile image
Beture47 in reply to Poobear69

Yes I did check that out also.

I don't think we will be leaving the EU for a while yet so not going to get to worried

Poobear69 profile image
Poobear69 in reply to Beture47

Yeah don't look like we will now πŸ˜‚

If customs lines get snarled up, anything can get blocked in a queue.

I imagine part of the expensive plan is to be able to send emergency rations to those in great need. I expect lots of problems (in a no deal scenario) but I also expect we will all manage.

Poobear69 profile image
Poobear69 in reply to PCBnPBC

Manage? If we do t get the drug or our usual dosage how the hell we we manage?

Just bringing politics to this group is a no no and all your doing is causing fear amongst people in my opinion

ThreeSmiles profile image
ThreeSmiles in reply to retwos

Completely agree retwos. Bit mischievous imho.

πŸ™„πŸ™„πŸ™„

Poobear69 profile image
Poobear69 in reply to retwos

And you're certainly entitled to your opinion......

Poobear69 profile image
Poobear69 in reply to retwos

Didn't bring politics into in? Reread my post fella?

LAJ123 profile image
LAJ123 in reply to retwos

As Poobear said, he didn't want to make it political and I said, nothing party political, just discussing something which is political and will directly affect many of the members of this forum.

Would be a bit strange to ignore something so significant and incredibly relevant. What is your objection to a discussion about the political situation ? I could understand if somebody began to use this platform to promote a particular political opinion or philosophy, but this hasn't been the case in this matter.

Jim

ThreeSmiles profile image
ThreeSmiles in reply to LAJ123

But that is completely different comment from your first post above, Jim!

πŸ€”πŸ™„

Or have I misinterpreted this post? Are you saying poo has made it political or not? Sorry just don’t understand this latter post of your, Jim.

Poobear69 profile image
Poobear69 in reply to LAJ123

πŸ‘ŒπŸ’―πŸ‘

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