I have just read through some similar posts on here….. I have been on Pred since end of January 24 after being undiagnosed for 8 long months…… Started on 15 mg now at 6.75mg. Was left to my own devices until 7/8mg when a Dr signing off my repeat prescriptions (about 5) sent me a message to call and make a telephone with her. She advised me about tapering etc (I had done 2.5mg a month and then more slowly from 10mg) and prescribed some 1mg as well as my usual 5mgs. When I got to 6mg I had a flare and doubled my pred for about 10 days and then had to ring the surgery for more tablets as I realised I was going to run out as my repeat prescription for pred had disappeared! This week I was running short and checked the NHS app and there was still no repeat so had to go online to the e consult and ask about having it reinstated …. Why do they do this? It’s so hard to get hold of the surgery anyway, I’m hardly going to take more than I need! Just feels like an insurance policy knowing there’s a spare packet in the cupboard!
Pred script changed from ‘repeat’ to ‘acute’ - PMRGCAuk
Pred script changed from ‘repeat’ to ‘acute’
I agree to have some spare is a great feeling. I am still lucky in that my prescription is still on repeat for 9mg, and I am on 3.5mg. At the moment I am only asking for the 1mg tablets but would order a pack of 5mg when these run out of date
I've never understood this attitude from some surgeries, mine was on repeat and I would work out what I would probably need for the next four months or so and then tell them how many boxes of 1.0mg and 5.0mg I needed. No problem and easy peasy for all concerned.
I have been on prednisolone for 5½yrs now and like Koalajane I've accumulated spare tablets in 10mg, 5mg, 2½mg & 1mg doses.
This has just happened naturally during tapers when the prescription has taken a little longer to be changed to catch up with the new change in dose.
I always carry spare tablets in my handbag just in case I go out in the morning having forgotten to take my daily dose. (This has only happened twice in 5½yrs though, as taking my medication is part of my morning routine.)
I also always take extra away on holiday with me too, just in case I get delayed there or experience a situation that may require a higher dose. For example, a flare, illness, an accident, adrenal insufficiency etc.
Sorry you're finding communication with your 'practice' a challenge at the moment but hopefully you'll resolve the situation quickly.
Hi,
Throughout my seven plus years with pmr, I always kept a spare packet of pred, which, like with Kendrew, accumulated as I tapered down. I sometimes asked for less, if I got too many packets.
I just do not understand the attitude of some GPs, who feel the need to restrict supplies. As you say, it’s not as if you want to overdose!
Good luck.
Why do they do it? Because they have no understanding of PMR and longterm use of pred. They are told it is evil and should be stopped asap without realising that for us it is their RA patient's DMARD - they wouldn't ask THEM to stop all of a sudden because they know the symptoms would return.
Who knows how their systems work? Even they don't! I had 5mg pred on repeat prescrip. & then was given 1mg & 2.5mg by doctor at one point with him inputting the info for the pharmacist. But, when I wanted either 1mg or 2.5mg then 5mg was delivered as the other amounts weren't on a repeat. What a waste, as still had to then chase up amount I really wanted & the 5mg cannot be returned. So much medication is wasted these days.
5mg tablets do cut nicely though unless they are enteric coated ...
I think the main problem lies with many GPs who are more used to prescribing Pred in “acute’ circumstances in respect of flares for Asthma, COPD etc… and have difficulty in getting their head around a long term condition like PMR. It’s not exactly rocket science is it?
Also think some practices have a default rider on their computer system to amend from ‘repeat’ to ‘acute’ at a certain period. That seems to have happened in the past to others.
But my BP meds have been on repeat for 5 years!
A very similar thing happened to me only this week. I’ve been on Pred since last September. After a hiccup at the start, have been getting my repeat prescription as usual from the Pharmacy. I only get one box of 28 x 5mg at a time. Ordered last week and got a call from the Pharmacy yesterday, to say they’d been sent a prescription for 4 boxes of 1mg. Rang the surgery to be informed that the 5mg isn’t on repeat. Their records showed that I hadn’t had 5mg since November. I explained that is not the case and I’ve been on Pred since Sept 23. Had to explain how I order my repeats. I told them and said also when my last one was(Aug). They said they’d have to check with the Pharmacy to confirm what I’ve had. (Shouldn’t that be on the Surgery records??) Anyway, the upshot is that I’ve got my 5mg and have been assured that it is on repeat, but having read Dorset Lady’s comment about them swapping to acute after a certain time, I wonder if this is what happened to me. I’d better be prepared for it to happen again in a few months time. I could certainly have done without the aggravation.
I could ‘maybe’ understand it dropping off my repeat prescription, but to say that their records show that I last had 5mg in November seems incredible. It’s a good job the Pharmacy could confirm I’ve had repeats since Sept. However, it begs the question, ‘do they know what they’re doing?’ Perhaps best not to speculate on that one.
They do come up for review, after a while and quite rightly so, I think. In the past, there have been some elderly people who were knocking back hatfulls of pills that they no longer needed. The GP practice that I go to review mine every two years and I get a call to make an appointment for a review. I don't think my pred has ever fallen off the list though, that I can remember. Though the pharmacist did tell me to order them, even if I don't need them as they will disappear from the repeat list if I do not re-order after a 3 month gap. And I always re-order early to make sure that I have a buffer in case of supply issues, holidays etc.