Repeat prescription for anti rejection tablets

[Smyally]

Had a bit of an issue getting my mychophenolate on repeat prescription this month.

Put my prescription into my GPs last Tuesday and it should have been ready for collection by last Friday. Went to chemist and there was no prescription, so went back to the surgery to be told that my request had been disregarded because I was ordering too early and national guidelines they could not process my prescription. I have been on the same dose of mychophenolate now for 18 months and not had problems before. Was wondering if anyone else had experienced the same issues. I am now down to my last couple of days of tablets and having to make complaints which doesn't come easy to me when I feel like rubbish anyway.

[RodeoJoe]

I get prescriptions from the hospital, they give me six months at a time and actively encourage me to stockpile them.

[Smyally in reply to RodeoJoe]

Thanks for your reply. I will talk to Addenbrooks tomorrow and see if I can do the same in future.

[dckimberly]

call your tx coordinator. Have consultant re write letter and send immediately.

They do this because of the cost,

They KNOW you have to have it. Go down there, to the GP or pharmacy and brook no excuses.

Ive had this same issue over and over..the liver consultants are used to it. Its stupid and life threatening,

[dckimberly in reply to dckimberly]

Im also at Addenbrookes..speak to Allison, Leithead, or whoever your coordinator is. They do have a TX pharmacy that can dispense them and ship them to you.

Is your person Mike or Ester? or Lisa? Mine is Mike, hes a gem, they all are!

XXX

[Hidden in reply to dckimberly]

how are you? cazer.

now officially on list.

are you waiting for kidney and liver? best wishes cazer. xx

[dckimberly in reply to Hidden]

Glad your finally on list. I had the riafaxin too and just in time for my first tx.

Yes, I'm waiting on a liver, and kidney tx now.

They only do about 20 a year, and half of those are children, so, not an easy one. Trying to get one organ from an angel is hard already, but two from same donor is very difficult. Plus recovery time and mortality is twice as much..sounds crazy but I hope it happens when myaughter is not here. She's coming to visit end of summer and I don't want her to spend it in a hospital.!

I miss her so much!

How long have you been on list now? How are you feeling? Ok. I hope!

Cheering you on dearest!

xxxx

Kimberly

[Hidden in reply to dckimberly]

you poor love its bsd enough the odds for one organ... so that must be mega scary. i went on in march but April by the time paperwork done.

im feeling okay about it.... but am going on research trial for new way of storing organ.... they keep oxygenated and warm.... 8sucessful so far.... you have to be lowish ukeld and no other health issues.

hadn't packed bag but have now as lady i met at part 2 has already been transplanted.

i am sure i will have a long wait but it did focus my mind.....

im so sorry you are having to go through it all again... amd i understand what you mean about your daughter. mine wants to come up for surgery but I am not sure if that is a good idea!!!!! love and best wishes. cazer. xxx

[Smyally in reply to dckimberly]

Hi. My transplant co ordinator is Ester, she's lovely they all are. I've been under Addenbrooks so long now I think I've had dealings with all of them. Unfortunately because I had my transplant a long time ago now the pharmacy hasn't got the capacity to take me on. They only do this for people transplanted after 2013. But thanks for you're advice, I managed to eventually get things sorted out at my GPs 👍🏻 Take care

[Hidden]

how ridiculous ihad this happen with rifaximin local authority cant prescribe as red drug in Somerset and can only b issued by hospital but the doctors didn't bother telling me... so they made me run out. then had to contact qe and they were brilliant sent recorded delivery that day and that wasn't even a life threatening prescription.

i kind assumed it wouldn't happen post transplant with a vital antirejection drug but sounds like the surgery ignorance continues!!!! cazer. x

[Smyally]

Just want to say thanks to everyone who replied to give me some advice. I did take the advice on board and contacted my hospital, but I eventually got the matter sorted out with the practice manager at the GPS. Thanks everyone 👍🏻👌🏻