When I was first diagnosed with PMR (June/July 24) I was given a reduction plan which didn’t work. On Monday I requested my usual dose of prednisolone. Today I rang the doctors as I’d not received the prescription and was told that I should be on 1 mg a day as advised by the doctor last year and not the 8.5 mg that I was currently taking. The prescription had not been issued. I explained that I had since seen a rheumatologist who had advised on an alternative reduction plan which I was following. The medical receptionist said that they had not received the consultant’s letter. I advised that they had as it was dated 26th January 2025 (I had a copy). Suddenly the letter was found and my request was going to be dealt with.
The problem is that I have no more prednisolone and if I don’t receive the prescription today I will have nothing for the weekend. Presumably my condition will just get worse without treatment and I would be grateful if anyone can advise if there is anything that I can do to alleviate the symptoms a bit. I can only think of painkillers which are not the ideal.
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InTheMoors
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If you feel bullish you could call them to say that if you don’t get your Pred they are putting you at risk of an adrenal crisis so they should be expediting it. Or you could go to your pharmacist and get a few days emergency supply as has been done by others. In this day and age, your surgery should be able to send your prescription to them electronically today and really ought to given it was their mistake.
Returning pain when stopping 8.5mg/day suddenly is likely to be the least of your problems - you are at a very real risk of developing an adrenal crisis which at best will make you very ill requiring admission to hospital, possibly ICU, and potentially could kill you. You MUST not stop pred suddenly at any dose - you are likely to have NO adrenal function at that dose.
If they don't cough up this afternoon, go to the pharmacist and explain what has happened - they should issue you with an emergency supply to at least cover the weekend - the one I spoke to was happy to give me enough for a week.
Then, initiate a complaint to the practice to identify who it was who decided a long term pred patient should have their supply cut off without warning - at most they should have issued a short supply and insisted you have a review appointment to continue. This is happening far too much and it will result in a death sooner or later.
It is happening far too much, just now happened to me. Got prescription with one packet of 5 mg in, prescription has been getting smaller and smaller every time. I have non in hand now. I now rang surgery they looked at screen and said that’s what they say you are on now. I said with non in hand this could be dangerous, they are talking to GP and ringing me later. It has done me no good with Max Yates saying he now “thinks”I have Fibromyalgia, even though he says I may have to stay st 5mg. Sorry to still moan about the same old thing. Hope you are enjoying our improved weather.
As I just said - I'm in the north! Blue sky and sun - and a bitter breeze, bit more than a breeze here in Whitby. even flagged on the forecast. Warm at the moment, inside, First time this week ...
My normal pharmacy for prescriptions from my GP is Boots and they would never offer any sort of emergency prescription, I don’t think. They dispense only what they are instructed to and are quite unmoving and seem not to be terribly knowledgeable
When I did emergency prescription through 111 they sent it to an independent pharmacy. No idea if that’s just a Cambridge thing or not.
111 probably have a list of ‘recommended ’/‘approved’ pharmacies in all locations. They are also more likely to be independents as well.. the bigger Boots seem to have lost their way a bit!
It was Boots in Hartlepool who supplied me with a week's emergency supply - they charged me £8 for the privilege mind! The pharmacist did apologise. But I explained I had forgotten to pack the tablet box and he immediately said it was too risky NOT to provide the cover, I only asked for 2 days, he offered a week. It is the pharmacist you have to ask,
Otherwise I agree wholeheartedly with Gimme's comments - seen that side of them - but needs must ...
I once forgot to take my morning prednisone on holiday in Greece... I was miles from my drugs. I went into a local pharmacist and explained that I needed prednisone as a matter of urgency. Not only did they immediately give me two 5mg tablet, they didn't even charge. I think you should walk into your local pharmacy....
Ok, thank you for that.....it's ironic because a few wee ks ago my GP said don't lower because your ACTH reading wasn't very good......I am in the mood I'm afraid that if she rings me I will be reminding her of that!!....
I've just had a search to see if a drug safety update letter has been sent out over the last year, but couldn't find one. That would be the normal route to inform doctors, if there were concerns. All I found was a lot of drug safety activity surrounding topical corticosteroids and also government moves to reduce anabolic steroid use in sport over the last couple of years. I have an inkling that even some medics don't always fully appreciate the difference between anabolic steroids and corticosteroids. I mentioned that daft pharmacist that I met on holiday a couple of weeks ago. It just occurred to me that I wonder if she thought that I was self medicating somehow, as I may have said that I am on steroids, not that I am on prednisolone. That might explain why she got so shirty.
lol @ "my friend". It never occurred to me at the time. And I doubt that it would have occurred to her that I worked in the field, even with the vocabulary I use, with 45 years in drug development and some of that time in drug safety. I never wanted to go on prednisolone in the first place, because I spent so much time over the years writing about adrenal suppression on product literature, but hey ho, in the end, it was Hobson's choice. It was not a decision that I made lightly.
Saw this yesterday - will put it on forum when published -
Timing of the spring vaccine
You should be offered an appointment between April and June, with those at highest risk being called in first. You will be invited to have your booster around 6 months after your last dose, but you can have it as soon as 3 months.
If you are turning 75 years of age between April and June, you do not have to wait until your birthday, you can attend when you are called for vaccination.
You will be invited for your booster, your GP may offer you the vaccine or you can book using the NHS app for Apple or Android. You can also find your nearest walk-in vaccination site from the NHS website.
Following a phone call to a medical receptionist I sent an email along the lines of PMRpro (many thanks for that). I have now received a text message:
As advised this morning the current medication on you ‘Acute medications’ is listed as 1 mg which is why it was it was unable to be processed, it wasn’t refused 😊
Just phoned the pharmacy. The prescription has not gone through yet, but the very helpful man I spoke to is giving me a box of 28 1 mg tablets later today. Thanks Snazzyd for suggesting this.
Why do i feel that I'm fighting with my GP surgery over this? It's more stressful than dealing with PMR.
I have had that problem with a week supply of 1 mg to last a month. It’s enuff to get sorted over the weekend when you can start the endless fight for more. I get the same every time I see the Dr. I have now been clear of Pred for 19 days while waiting for my knee op on 31st. Consultant request. Hope the good lasts 😊
I live in N London and if you live anywhere near I could get a new pkt of 5 mg to you until you get your full prescription. It was scary to read that one can die if Pred is suddenly stopped. I will check this site regularly in case I can help you.
Thanks for the offer Motida. I'm sorted now (until Monday). It's a bit scary knowing that I could have become seriously ill or died. Without this site and the helpful people here I could have been in a lot of trouble.
In addition to the complaint to the practice, as PmrPro recommended, I'd suggest a reply to the text you received, asking for an explanation as to why it has taken them nearly two full months to FAIL to update their Acute medications records. They have put you in serious personal danger by this behaviour. Defending it is egregiously WRONG!
(if I'm overstating things, ignore me, but I'd certainly feel I was fighting the surgery, too)
I am so sorry to hear that you, and others, have this stress. It can't be good for you.I was going you give a shout out for our GP surgery and pharmacy this morning but I won't, because it would be insensitive.
Ok, well we have been with ours for 45 years and they have never let us down. Yes, some GPs have been preferable to others but the current bunch are good. The reception/admin staff are very helpful, so much so that I sent in a tin of biscuits recently to show my appreciation. On their website some of the reviews are appalling and uncalled for and I left a review to say so. There is no call for abuse and bad manners. If you want to be respected you need to treat the staff with respect.
I echo the same. Can't fault the doctors surgery that I attend or my lovely GP, in the care of my PMR. If there has been any kind of issue, as soon as I have explained, the non medical staff have been brilliant at helping to find a fix. The only exception was the grumpy rheumatologist attached to the surgery and I take great care to avoid him after that episode.
The NHS is slowly sinking beneath the waves. You read the most horrific stories of young people being misdiagnosed or ignored and some even lose their lives due to, in my opinion, ineptitude. Older people don’t stand a chance!!
Yes, you are unfortunately right!....I have just got an email through from my Pharmacy to say a new prescription has just come through!.......but what about those that can't deal with this rubbish going on....I don't need too much confusing how I'm feeling at the moment.....and don't get me started on the strugg le people are having getting dentist!....I need a cup of tea now!!
I don't want to sound complacent but our dentist is almost as good as our doctors. I wonder if quality of service depends on which part of the country you are in 🤔
We had wonderful dentist practise for 25 years....18 months ago when I went for a check up he couldn't get me out of the chair quick enough!....went to reception to pay.. ...she said we are now private!...have since been lucky enough to find another good one.....Doctor must have sorted out when I complained this morning about prescription....now have another one to pick up!!
We did Tiggy. We moved here in 1980 when I had just had my first pregnancy confirmed. Eldest son remains local and he and his family go to the same practice and are equally satisfied with the service 🙂.
I was chatting to a pharmacist at a social event, and I said about the pred, well im on a low dose now but still months to go even if nothing goes wrong .... she said it has to be slow! absolutely dont get tempted to drop faster or stop, you could get really ill.
I could weep for you,and others who are put in this dangerous position.If it was me and I could not get any Pred from anywhere,I would get to A and E.You never know,they might even put a rocket up the proverbial of the dr in question seeing as they are putting your life at risk.Stay safe and let us know how you fare won’t you ITM?xxx💐💐😜🤬🤬🤬🤬🤬🤬
Thanks to a very helpful pharmacist I'm sorted for the weekend at least.
I'm just glad that i paid to see a rheumatologist who sent a three page letter to the doctors (copy to me). I'm now following his reduction plan and I would imagine that the doctors will not want to argue with that too much. Without the letter I would be in a bit of a awkward situation.
All quite now until Monday when the 'fight' with the doctors starts again.
The lady who does the prescriptions at surgery, which are sent from pharmacy to her to process rang me yesterday to ask if l had come of pred. She said the tick box had been left blank as if l didn't need it any more. On 3mg. At least she was on the ball and was going to rectify it. There was another item not ticked which the doctor sorted. No idea why pharmacy got two things wrong. Glad it wasn't a Bank holiday. I get blister packs delivered.
I’ve used this service in the past and it worked very well (I got a week’s supply of HBP meds) although when there’s a discrepancy between what you need and what’s in your records it may be a bit of a negotiation.
Can you get to a walking A & E. Hospital. as they probably can help you with a prescription - obviously show then details of your health issues/medications. & correspondence regarding your Prednisilone..
The letter from the consultant is a red herring. They shouldn't have untrained/unsupervised non medical staff processing prescription requests. Especially when it might put lives at risk.It does strike me as odd that the receptionist was fielding that. I know for a fact that repeat prescriptions are triaged by a medic at the surgery that I attend.
I do think that you should put a complaint in writing. Whatever excuse they want to put forward is irrelevant, the fact is that you were denied a medicine that you are physically dependent on and to suddenly stop can be dangerous. The person responsible should be aware of that and if they weren't going to issue your prescription, at the very least, they should have let you know. There is absolutely no excuse for it. They have a duty of care. That's me with the regulatory hat on!
oh, and if you do send a letter, make sure that you say in the letter that you will follow up if you have not heard from them within 5 days. That way, if your letter is intercepted, it should reduce the temptation for it to not reach its destination. It already sounds like they are being defensive, but the issue isn't who is to blame, it is more a case of whoever made the decision wasn't aware of the clinical implications and they shouldn't have been placed in that position in the first place.
Just been to the pharmacist and picked up my prescription. Surprised to note that i now have a 28 day supply, more than twice the amount i was previously prescribed.
I'm now due to have a telephone call from the senior partner later this week. I'm not sure what the call is about (i didn't ask for a call) but can only assume it is about PMR or my dosage.
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Alendronic acid
Advice before doctors appointment - Monday
Victory with scrip mess
Seriously... are you f**king kidding me? 
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