This is my first post, though I have been following this forum since I was diagnosed with PMR 4 years ago. Due to a complete lack of knowledge/understanding at my GP practice, I have largely been managing my condition myself during this time and have tapered, very slowly, down to 4mg of pred. I have had periodic blood tests and the odd phone call with different GPs, each giving conflicting advice. One wanting me to reduce (from 12 mg) by 1 mg a fortnight and to let him know when I reached 5mg! When I queried it, he said all his other patients had managed to do it. I doubt they had PMR. Anyway, I ignored him and got a second opinion from a GP who agreed with me that it was too fast a taper. So I have continued with the slow taper and managed my condition quite well. However, I recently got a text from the GP practice saying I needed to book a medication review with a pharmacist and my repeat meds would be stopped pending this. The trouble is the earliest they could book me in for a review was the end of March! So, not wanting to run out I phoned the Practice and the receptionist put in the request for me. My worry is that the pharmacist will have no idea about PMR and try to stop me taking it, then what will I do? Has anybody else faced this predicament? Any advice would be welcome.
Repeat meds stopped pending review!: This is my... - PMRGCAuk
Repeat meds stopped pending review!
Hi and welcome now you have emerged from the shadows!!
This is becoming a familiar story recently - there have been posts both here and on other forums as patients panic as their regular prescriptions for pred seem under threat. Someone who is familiar with the system, Afibflipper, wrote a great reply about what to do which appears in this post which deals with several similar incidents:
healthunlocked.com/pmrgcauk...
PMR is not your primary problem here, it is the long term use of pred which means you MUST NOT STOP TAKING PRED SUDDENLY and the pharmacist should actually be more aware than many doctors. I recently forgot to pack my pred when going somewhere for 2 or 3 days and the pharmacist I saw immediately agreed with me it was too risky to leave me without pred even for such a short time and provided an emergency supply.
In terms of the PMR, you can educate them! But the GP is responsible for issuing the scripts, so when you have the opportunity make sure they have a note on your records about how much pred you need and how often you can get it. You must not be left with inadequate stocks and they must all know that.
I would be much more confident that the pharmacist knew about steroids that my GP. Pharmacists are usually much more knowledgable about medication than doctors.
This sounds a bit like a general threat rather than one directed at a Pred user. The use of annual reviews for medication seems to have become a bigger thing in recent years (perhaps as fewer people ever get to speak to a GP otherwise). If so, your surgery may have decided to be a bit heavy-handed to make sure their blandishments and protocols are not ignored. That's not say their threats aren't a worry, and I agree with everything said by PMRpro and piglette.
Annual reviews have been a thing for years…I can remember when my late hubby was on heart meds and I was still at work - so about 18 years ago- we had reviews with the pharmacist at local Boots. The review date has been on the prescription form for yonks ..but whether it was done in consultation with patients or just by GP/pharmacist seems to vary.
They should be done - and it is absolutely true that there are thousands (if not millions) of people getting prescriptions for drugs they no longer need, even worse, on duplicated medications that they shouldn't be because they are causing unwanted effects - too much BP medication causing dizzy spells or other risky effects. It is the job of pharmacists to pick up on such situations - all ward prescriptions are reviewed for that reason and now it is rightly being extended to the GPs. It makes his day when my grandson identifies such errors!!
However - in the case of pred, you can't just stop it willy nilly. The review date should be fixed BEFORE announcing the drug will be stopped and in the case of vulnerable patients, it be checked that they have understood and come to the review. Many patients become confused, don't understand the risks and wouldn't bother - and potentially put their lives at risk.
yes, we have a yearly medication review and have had one for years. It’s usually very helpful here & carried out by the pharmacist.
I get yearly checkups, but have never had or been invited to a medication review. Equally I've never had a problem with getting medication.
In that case, the GP probably reviews it themselves following results from annual check up. If you have the copy of prescription do you notice a change in review date?
It now says please check the medications you have at home before ordering - obviously to stop over ordering.
The receptionist told me reviews had previously been done behind the scenes, but new protocols required them to be with the patient. I order my repeats online through the NHS app and have not noticed anything requiring a review until now. I just didn’t expect to be blocked from reordering meds pending the review.
No, you shouldn’t be blocked pending review - especially with a drug like Pred..
You could inform the receptionist that if your Pred is blocked till your review date, then if you run out you'll go straight to A&E and ask for them, as Pred is vital for adrenal function, and you can't just stop it willy nilly.
The other thing you could do is call 111, and they'll sort out a pharmacy nearby to supply you with an emergency ration of Pred that lasts until you are able to see your GP.
Either way, I think the practice could do more to ensure that you have enough Pred to last until your review, so remind them of that fact, and don't take no for an answer.
Just got a review date on mine. I suspect that because over the last few years I've had fairly regular contact worth surgery then it gets sorted out as we go along. Then, probably reinforced at my annual check up. Had a meeting with docs when we moved so that probably all got all medication agreed then. Will have to wait and see what happens over the next few months.Off to Barbados on Monday for two weeks, been off Pred for about six months now but have packed some for just in case. Do you think that is being sensible or over the top?
Very sensible actually - like insurance - have it on hand but hope it not needed😂🤣
Most of all, enjoy…
👍👍👍
I had a review with the practice pharmacist and she was absolutely useless in so many ways so I have said I won’t meet with her again as I can’t trust her advice, sadly.
I'm sorry that you have found yourself in this stressful situation. You've already been given great advice and I feel sure that you will get the pred sorted out, one way or another.
Just wanted to add that it is probably a good thing that they do these checks now, as in the past, there were many elderly people on repeat meds for illnesses that they had recovered from decades before, or were being given cocktails of drugs that potentially interacted and other issues that might have consequences for long term health. That said, I've heard similar stories on here before relating to the pred, and a close friend had her blood pressure tablets suddenly stopped for the same reason, which means somewhere along the line, it's not been very well thought through. It's not good enough really.
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