Hi all. I wonder if I should get a pill cutter or persist with the GP s dispensary in getting the correct prescription? I recently had a flare of my PMR so went from 6 mg to 10mg for 6 days. I'm now reducing 1 mg a day, waiting until I'm sure the stiffness has subsided before reducing again. When I spoke to a GP some months back, she put me on a variable prescription to accommodate these flares (I've had two previous flares). However, the receptionists just cannot understand this and insist I speak to a GP again each time. Last week even the GP didn't seem to understand but suggested she just double my present dose, I.e. 2x 5mg and 2x 1mg tablets. Even that was messed up between the dispenser and receptionist and the latter said as I'd had 56 tablets, I couldn't have more - even though more tablets (9mg) were actually a lower dose. I gave up. Very, very frustrating! So, do I get a pill cutter and give myself roughly the dose I need, or do I continue bashing my head against a brick wall ? 🤔
Frustration with prescription: Hi all. I wonder if... - PMRGCAuk
Frustration with prescription
No point banging your head against a brick wall - get a pill cutter..
but have to say I would be more concerned about regular flaring -GP shouldn’t just be accommodating that -you should be on a more realistic taper.
Are you flaring at approximately same level each time? If so, that maybe is telling you that’s the lowest you can get at the moment. Won’t always be, but is for now. Plus you are in adrenal territory-which doesn’t always help tapering
Sounds a right Horlicks all round.
Hi smithie, what a palaver! What did they do when you were on 9mg during your previous reduction?
My surgery has a policy of not issuing more than 56 days worth of any particular medication at one time - so your receptionist might be getting confused if a rule like this is in place at your surgery.
Is there a practice manager you can ask to speak to?
Get pill cutter - least painful.
Letter to the practice manager - Hassle but may give longer term satisfaction.
Try to discuss with GP the risk of a larger cumulative dose of Pred if you taper too fast and keep having to bump back up - More hassle but better for your body and quality of life.
Get the pill cutter!
But that receptionist needs sorting out. She obviously doesn't understand that when you have to mix different dose tablets to get the right dose the 56 rule is a piece of nonsense.
And your dose/tapering also needs sorting. Tell us your history
Many thanks everyone for your replies. I started symptoms of PMR early summer of 2021 but as my bloods were high, but 'normal' the GP refused me steroids. By this time, I struggled to bend, dress and move comfortably. My legs felt like blocks of rubber, and life was difficult. I was 72 and under a lot of stress due to involvement with the finances of my son's divorce. After seeing me during a week's holiday when I couldn't interact well with my granddaughters my son found some out of date prednisolone (prescribed for his 2 Yr old some years earlier) and in desperation, I took 10mg. Next morning, as if by magic, I could move!!! I wrote to the head of my surgery admitting what I'd done and got put on a sensible prescription and was referred to a rheumatologist. The latter was brilliant, confirmed atypical PMR and upped my dose from 10 to 20mg, tapering quite quickly through 15 to 12 then 1mg per month. On the higher doses I felt like I'd been oiled!!!!So I got to 6 very slowly, felt OK but have been over doing things as I've been helping an old friend move into a care home which has involved a long a difficult battle with social services, then cleaning and clearing his house. I'm also planting much of our churchyard (a passion if mine) but hard physical work. I think it's taking me a long time to accept I can't do what I used to and what I still want to. Grrrrr!!!!!
Sorry for the long spiel x
I wouldn't be surprised if you aren't at least at your destination for now - or even a bit past it (not you, the dose!). You aren't heading relentlessly to zero but looking for the lowest effective dose. It isn't a good idea to push past it - you need enough or eventually you will be back where you started!
confirmed atypical PMR and upped my dose from 10 to 20mg, tapering quite quickly through 15 to 12 then 1mg per month.
Sounds very typical to me -and many on here - why do they fixate on bloods do much when up to 20% of patients don’t have “perceived “ high readings…
Taper to 10mg probably too quick -which would account for previous flares. But as I said earlier in thread you are in the adrenal issues territory now -so not helping - and you are not reducing relentless to zero come hell or high water -so slow up on that -and and use slower tapering plan.
..and to be honest there is no point in getting frustrated -you have to accept life is slightly different with PMR -that way you’ll get through it much easier -
Link re Adrenals-
healthunlocked.com/pmrgcauk...
Link re tapering plans -
healthunlocked.com/pmrgcauk...
Very many thanks. I'll try !!!!!
The best thing to do is to write a letter/note to add in with your next repeat prescription request explaining the intricacies of Tapering…..
The amount of Tablets needed of each mg ie 5mg; 2.5mg & 1mg plus you always need some in hand incase of a flare.
Write it simply, clearly & keep a copy, then you can use it each month if necessary!
Don’t let it stress you - GP’s are mainly used to giving 5day Courses for Chest Infections so it throws them completely!
We just have to educate them!
Have to agree with Dorset Lady, sounds very typical to me.
Are you at a dispensing surgery or do you collect your meds from a pharmacy? If the latter, see if the pharmacist can sort it for you. I'm not sure how the system works now, but in the old days I could sort out problems like this very easily.
Thanks for your reply. I'm at a dispensing surgery - split between two villages. I've now contacted the main one and they are putting me up the 1 mg tabs I need. I might switch back to them but they are further away
After many episodes such as you describe I now deliver a physical letter to my local pharmacy every 56 days - detailing all my meds that require renewal.
I include an estimate of Pred required in different strengths - together with info on where I am in reduction plan / pausing / etc. This isn’t too laborious as I keep letters in a digital file so just update as relevant.
Pharmacists seem to understand PMR and it’s vagaries much better than GPs. I suspect that their training is better and that the average over-pressed GP (who to be fair is expected to know everything about everything!) hits a computer button on their PC that comes up with a single treatment formula that is not up to the mark. If my suspicion is correct then wouldn’t it save everyone a lot of hassle if that ‘formula’ could be updated? Has anyone got a current GP in their family who might be asked that question?
I have 5mg, 2.5mg & 1mg on repeat prescription and order what I need when I need it. I have a pill cutter which works pretty well and am now resting on 1.5mg until I decide to drop to 1 or even 1.25 (ish).
I’m not sure what a variable prescription is but I’ve found having control myself is best for me and doctors (& rheumatologist) just let me get on with it.
Good luck to you x
I feel your frustration. I've had the same issue this past week. The reception doesn't understand at all. I've been told I need a medication review and happily booked the next available appointment which is 6 weeks ahead. I only have enough Prednisolone for 2 weeks. I'm currently on 4 mgs so one packet of 1 mg gives me 4 days....... I feel like I'm banging my head against a wall. This condition isn't taken seriously or the GP wouldn't hold back on medication.
Get a pill cutter - no messing. I've been using one since well before covid with no problems at all. And, if you can be bothered, have a word with the Practice Manager.
definately get a pill cutter and sort things out yourself, don’t wait for others 👍
Crikey even I'm confused. Sounds like a "Can I talk to your manager" situation. I'm not understanding the dose you're on at this time and the need to cut pills in half. Sorry.
hi Smithie49! I know everyone has sent their usual sound advice, but my attitude is this, no stress in my life, PMR adores stress, pill cutter it is, online from the usual marvellous place. Why worry about going out to get one? That shouts stress. Everything in my life these days has to be decided with the question, is this stress? Change course. I am not the same person I was 2 years ago, I don’t look back, today is today. Keep strong!
On the other hand, I find a nice walk down to the pharmacy infinitely less stress than waiting for a courier delivery, And healthier ...
I agree with anything you say. You are my mentor! X
I bought a pill cutter in order to have the correct dose to begin the slow reduction in steroids, and I LOVE it, even though it is time-consuming to cut the pills up. It's also kind of psychologically satisfying to see those nice clean cuts.
I've gone and done it!!! No excuse for not reducing by 0.5 mg each time now 😀
So sorry you are having these frustrating problems. On a practical note I find biting a pill in half is far more successful than using a pill cutter. Maybe the pill cutters in Devon are not that great - or maybe I have particularly sharp teeth.....
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