Potential Prograf Shortage?

[PeterP54]

There is an article in the Business & Money section of today's Sunday telegraph about pharmacies having trouble in supplying some key medicines. The article comments specifically on Epipen, but also "specific treatments for a host of serious conditions". This concerns me as having had a liver transplant I am dependent on Prograf. Although this medicine is NOT mentioned in the article, I cannot remember an occasion in the last 12 years when I have received a box of Prograf designed for the UK market. Mostly my prescription is satisfied with re-packaged boxes from Poland or Greece and my current stock is one box from Poland and another from Spain (all made by Astellas).

There may be many reasons why this is the case; one is that the medicine is cheaper on mainland Europe and another is that it is in short supply in the UK. Over time I have used two different pharmacies; one a small chain and the other an independent. Both supplied medicines originally destined for overseas markets but re-packed for the UK market (by putting a UK sticker on the box).

I am concerned that with Brexit around the corner, we may no longer find it easy to bring in medicines from overseas. To try and get a feel for the rest of the UK (I am in Manchester): Where do your supplies of Prograf originate from?

[Isabelle2]

Hi

I live in France and I believe Astellas is French. I used to take it but now have Advagraf. The same but slow release and only need 1 in 24hrs. I use an indépendant chemist in a small shopping centre with large supermarket, so always busy. However I always have to order and pick up the next day. I know that my Dad in Somerset always used to get Spanish blood pressure pills.

I hope that it will be ok. Nice, or whoever, must make sure there are stocks available.

[jojokarak]

Hi Peter I am in Manchester as well 😁 my gp won't prescribe my advagraf so the hospital I under send the prescription to a Lloyds pharmacy who then deliver my meds

I honestly can't see any reason they would run out of life saving meds it's probably just more scare mongering I would take them tablets wherever they were made if it keeps me alive 😊

Can I be nosey and ask whereabouts in Manchester are you?

[PeterP54 in reply to jojokarak]

Hi JoJo. I live in Tyldesley.

Who knows what will happen if/when Brexit happens. If the reason I get EU sourced medicine is because of a shortage of supply in the UK then it needs flagging up after all who would have thought the Windrush people would be asked at this late date to prove when they came to the UK.

I suspect however that the real reason why I get EU sourced meds is that it is cheaper elsewhere but that is only a suspicion.

[jojokarak in reply to PeterP54]

Near Wigan then? I am in Eccles 😊 I am under Leeds are you?

And I know they definitely give us cheaper meds I was changed last year to azathioprine and wow the side effects I had off that med was crazy.... So I phoned them and told them I wasn't continuing on it my body wasn't handling it well... When I went next time for my appointment they said they were putting me on mychophenelate I asked what was that and they told me it was the purer version of azathioprine I was a little taken aback ....

I couldn't understand the mess around when I was fine on the advagraf

[PeterP54]

@JoJo yes Leeds. We're practically neighbours. I had Azathioprine and Prograf for a while. Day to day had no side effects but got PTLD after 7 years so after chemo was switched to Prograf and prednisolone. Now just on Prograf.

[jojokarak in reply to PeterP54]

Oh wow good news I can't wait to finally get off the predisolone .... Are you on the Facebook support group for Leeds ?

[PeterP54 in reply to jojokarak]

Hi JoJo

No don't do Facebook although I have an ID which I only use once in a blue moon to see what the kids are up to.

Wish I was still getting Prednisolone. Seems it was masking arthritis I had no pain or joint discomfort and quality of life was very good. The transplant itself has been fantastic. Now however have had a lot of pain in my leg and knees but has now migrated to my shoulders and lower back. Cannot do half the things I used to. When I was told they were going to reduce my pred, they didn't tell me it was being reduced to zero. If they had of done I might have asked more questions.

[jojokarak in reply to PeterP54]

I have heard a few people having problems coming off them completely, sorry to hear your another one, have you not discussed going back on them I know a couple who had to because of aches and pains

A few of us meet up every 2 months or so if you would like to join us one time? Next one will be in may in Bolton if you fancy it I will inbox you the details x

[PeterP54 in reply to jojokarak]

Hi JoJo

Yes please, send me the details.

[Litimag]

Prograf is a proprietary formulation of tacro, it will always be manufactured by the same company. I find it odd that we seem to get grey market box's of the stuff too, mine are also Greek Polish and Spanish language versions. It's probably down to them mainly producing the stuff in factory's in those country's, but it doesn't really matter as long as they keep up with demand I suppose 🙂

[PeterP54 in reply to Litimag]

Hi

Thanks for your response. I thought they may be made in Ireland. The leaflet in my box of Spanish sourced tablets says manufactured in County Kerry, Ireland. Maybe there is more than one factory.

[Litimag in reply to PeterP54]

They probably have their head office there because of Ireland's super unfair corporate tax scam. Like Apple Inc and all those other amoral companies.

[PeterP54 in reply to Litimag]

No doubt the tax situation was a factor in setting up an office in Ireland but it did actually say "manufactured". The Astellas website says Prograf is manufactured in Co Kerry.

[Litimag in reply to PeterP54]

So manufactured in Ireland, sold presumably to Poland etc, then bought from there. NHS procurement at its finest lol

[PeterP54 in reply to Litimag]

Sure is something wrong.

[JamesTargett]

Would be interested in what answer the NHS give regarding supply of Prograf. (My son is 7 years post transplant with Leeds)' will ask at out next checkup. Googled the maker of Prograf, and it is a Japanese multinational; the UK marketing address is in Surrey. No idea where their manufacturing is.