So I rang for my '2 monthly' repeat prescription in which I normally get enough pred (1mg and 5mg) for that length of time. I received my order delivered to find enough 1mg pred for 2 months, but only 1 month supply of 5mg pred. I rang the doctors to question this to be told by the receptionist 'Pred is a controlled drug'. I tried having a 'normal', calm conversation with her to explain there has never been a problem before and I have been taking pred for over 4 years so I know how to use it, to which she replied 'we're trying to get people off steroids'! I couldn't respond other than with a laugh!! I was left wondering a couple of things...1/ has anyone else encountered this? ...and 2/ what happens if GCA decides to rear its head (as has happened with me losing sight in one eye albeit for a short time? )
I can't help but feel that my control of this PMR is being slowly taken out of my hands 🤔
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Artnmusiclover
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No, I luckily haven’t encountered this, and for what it’s worth I think it’s awful. It shouldn’t be up to a receptionist to inform you that ‘they’re trying to get people off steroids’, and it should not in any case be done too quickly.
I think you need to discuss with your GP, and let them know that upyou have not received the medication that you need. And you do need it!
Re GCA, if your meds aren’t sorted out and you have a recurrence of symptoms, then contact your surgery urgently, or the rheumy hotline if you have one….or if these are not useful, go to A&E without delay.
I would consider a stiffly-worded complaint in the form of a letter to the Practice Manager, and a copy to your GP ( if you have a named one- many of us no longer have this.)
A receptionist going beyond her brief, issuing directions that are the prerogative of a professionally qualified medic is grounds for complaint and an urgent need for retraining.
Hi, yes the manager is very nice ...as is my current GP...its a year ago I complained to them about a receptionist getting me a repeat prescription of antibiotics at teatime on a Friday when I'd requested the anti-viral as I had Covid! 🙄
hi, I only get enough of my tablets, pred, Vit d3/calcium, statins, blood pressure tablets etc to last for 4 weeks. If I need to ask for them early I have to put my case in the remarks on the Patient Access website where I order them.
I am shocked that a receptionist would say that they are trying to get people off steroids. Do they think we take them for fun! I think I would have said that we are all trying to get off them!
Hi Koalajane, unfortunately my surgery doesn't use patient access ...I was trying to stay calm and couldn't help but point out all the side effects that go with it and had to laugh sarcastically or I would have 'lost it' 😬
If so, I would write and ask a GP to explain the change of policy...but have to say a lot of surgeries will only prescribe most medicines for 28 days as mentioned by Koalajane ... mine always have.
If Pred is controlled drug [although it is not listed under most common here] - why is 5mg affected but not 1mg?
Yes tat woukd be an excellent reply to the receptionist. We don't take them for fun and we would all like to get off them. Most of us are on a controlled taper or have got to a level that if we drop below we will get a flair up.Re GCA I don't think many of us have enough stock of Pred to last many days of the high dosage necessary. That is a definite case where you have to see a GP or Rhumatologust urgently. I lost sight in one Eye because of GCA and it will never recover.
My GP has steadily reduced my prescription to approx 1 months prednisolone ending up with a request for a formal medication review before prescribing any more.
I get the impression that this is NHS policy because my sister has to have a health review and suddenly found her 4 month prescription for beta blockers was delayed.
I avoided my review only by citing an up and coming meeting with my hospital rheumatology consultant. She is determined that I no longer have PMR and must taper off prednisolone.
I guess that the GP will follow the rheumatology instructions in terms of prescriptions. I will have to fail my taper to get significant additional supplies.
Ahh, I'm thinking it must be happening in general and she has used the wrong terminology by saying 'were trying to get people off steroids'. Can't understand why it's ok for 1mg's though 🤔
I don't think it's a general policy as I have no problem getting mine from Doctor or Pharmicist. Not worked it out to the last box, but think I came back with around six months worth last week. Also I'm very lucky in that I have doctors who put no pressure on me to reduce or give up and they are very happy with the way things are going.
I think it is a fundamental lack of understanding that we are an anomaly! Pred to them is used short term and everyone must be got off it - we have a chronic disease and the only drug it responds to is pred. Once you have been on pred for more than a short time you can't just stop it.
She's wrong though - there is a specific legal meaning for the term "Controlled drug" and pred isn't one. Their practice may refer to keeping control of its use - but that isn't the same thing at all.
I think there is something about steroids being “controlled” as my surgery used to fax prescriptions over to the pharmacy on the other side of the road and the told me that they were not allowed to fax steroid prescriptions over, when my prescription had not been received by the pharmacy. Goodness knows how they got them there, by post, carrier pigeon??
HUH????? Anabolic steroids are controlled drugs - Class C - but not corticosteroids which is what we are on. Bet someone just heard that "steroids" were Class C drugs and doesn't know the difference. It's like the question of flying into Australia with our medications - not the sort of steroids they are interested in.
Hi PMRpro, yes it's quite worrying that we find ourselves in situations where we have to educate them. I can't leave this, I'm going to have to talk to my GP, the receptionist really ruffled my feathers speaking like an expert on Pred 😬
Good grief! I am down to 2mg and have been taking prednisone since September of 2017. I have been down to zero a couple times but then get a flare and go back to 5mg for awhile. So much for PMR lasting 2 1/2 years like they said in 2017!
That’s terrible and causing more stress for you. So unnecessary! My GP just wrote a me prescription for 1mg x 100 tabs with 3 repeats. I don’t need 5s but I asked if I could have some in case of an emergency and he gave me a prescription for 60 with 2 repeats. I think I’ll keep him!
Hi...he's definitely a keeper! 😊 ....yes I see it as unnecessary too....especially when they know I'm seeing a rheumatologist and I treat steroids with respect
I'm not on steroids but I got the same issue when organising my tramadol. I received a letter saying that they are working to help people stop opioids and that as I had not used it recently it would be taken off my repeat list. Interestingly, my friend whom takes tramadol every day got the same letter!
I rang, explained I only take it for one particular issue , but when it happens , chronic pancreatitis, by the way , I need to have quick access to it which wouldn't happen if it was removed as I would need to go through the whole process of speaking to a GP and wasting an appointment, basically it needed to remain on my list for their convenience as well as mine.
The nurse said that was fine and sensible and it wouldn't be removed.
Lo and behold , a month later I had a bout of pancreatitis and had no tramadol left. Called up , and they'd removed it despite the conversation so they were left in a flap trying to find a GP then not managing to sort it out for 48 hours.
Obviously, we have pointed out that was exactly what the repeat was trying to avoid and it's been put back on.
My other friend is having difficulty with their Methotrexate too.
Hi Blearyeyed ...How frustrating for you!! Again this is a situation where the patient knows what is in best for them....it is a fear of mine not having enough, as I would know exactly if I need to increase (been there 3 times!) because of self management. The fact you don't just increase the dose for fun gets overlooked, in fact I am sometimes guilty of trying to do the opposite and not increase when I should. I do hope there are no further problems for you, the stress of that is enough to make you more poorly!
I will double check before I get down to three days left. It's ridiculous because in reality I use two boxes at most every twelve months . Obviously, I'm not addicted or abusing the medication I'm on so realistically if they are actually checking before removing it they should see that and realise there is no issue.More worrying was my friend , whom didn't get the letter because of postal delays before Christmas only to discover the date they needed to ring by had passed. When they rang the prescription had been removed despite it being their daily painkiller. As they pointed out if they are just making this blanket decision they aren't allowing people whom may need to come off it time to taper the dose and then they will become ill with withdrawal and no replacement.
My other friend was not allowed to order their Methotrexate until they had blood tests , but they had already had them done by the hospital. Then they mucked up doing the test and told them they'd have to wait until after another test was done. You can guess how they reacted and the GP caved but really these things shouldn't keep happening.
It's not like they haven't got too much work on their hands already so why they are searching for more by fiddling with the meds of chronic patients us beyond me.
What a worry! ....and unbelievably stressful for yourfriend too!....I have a reminder on my phone 4 days before order due date AND on my whiteboard ...as you say we know to treat these drugs with respect. I also think the receptionist has made the situation worse with her terminology 🙄
I take tramadol and received a letter last year about taking a drug holiday, trying to do without one once a week to test if it’s still working etc etc. I think it was following a nice guideline to take the action…it was quite a sensible idea, I thought as I’ve been on tramadol for over 15 years …but it didn’t work for me as new medical issues took over, but no mention of removal from repeat prescription! On collection of all my repeats from the surgery, the rest are in one or two big bags, but the tramadol is always in a separate locked drawer and is, I believe, a controlled drug. No doubt you know this, but others may be unaware!
Yes the guideline to try a reduction and holiday does sound sensible , however out Trust seems to have read it wrong and seem to think they can just cut everyone off cold turkey , or haven't explained how they want people to reduce. The Methotrexate issue is because they don't seem to understand that people with different conditions and different doses don't all have the same period between blood tests as each other.
My surgery is not what you would call well informed !
Hi, thanks for your reply....I am fortunate that is one drug I haven't been prescribed. I do worry they make these decisions and we become yet another guinea pig 😬
Um…tbh, it’s been the one tablet I can take without any side effects! For some years, it controlled all if my pain, but now it doesn’t, probably because I’ve been taking it too long!
I put in my prescription request last week and I am on 7mg for PMR/GCA and got 5 and 1mg. Methotrexate I get from the hospital., I can also get pred from hospital if needed.
Hi, they will give me a months supply. When I go for my rheumatology appointments (approximately every 4 months) they will give me enough meds to last until the next appointment. They only drug that is controlled is the methotrexate. The hospital monitors how many I have been prescribed and check bloods. I usually get 3 months supply each time.
Well for once I can say that I’m fortunate. I had a review of tablets with the surgery pharmacist. I explained that all of my tablets fell due at different times which meant I was repeatedly putting in requests(taking up surgery time, my time and pharmacy time). He immediately issued prescriptions for all of them on 2 monthly basis and said that he wasn’t concerned that I had more than I currently needed but in future could just leave any off the reorder. What a star!! Told me his remit was to sort out the whole repeat prescription service.
I did note that there is now a notice saying doctors won’t give prescriptions for medicines available to buy at pharmacy.
mmm maybe something is going on, the pharmacist is at my practice rang a few months ago saying the doctor would like you to come down 1mg a month, I am on 3mg, I said really! does he not know that 1mg is far to high and I try constantly to come down slooowwwlllyyy to avoid a flare, every month since she rings to see what I am on 🤷
I have been taking prednisolone since October for a mild case of PMR. The prescriptions have always been for 28 days.
I suppose that if my condition deteriorated in such a way that I needed to increase the dose I would contact the medical practice and a GP would decide whether to increase the dose.
When I have had a query about my prescription it has been the pharmacy team at the medical practice that has dealt with it, online or by telephone.
Hi, I remember being in the 'early days' and following plans of how many mgs you should take. I do hope it works for you and that if you feel too unwell to taper, for whatever reason, that they will 'hear' you. I found I hit a point when I couldn't taper any more at one particular time, so I chose to not to go down 1mg (despite being told to) until I felt better, and learned to listen to my body. I have managed to get from 50mg to 6mg but in my time ...hope you continue to improve 🙏
My GP gives me 2 months worth, but getting them in time is another matter. Notices say to please allow 72 hours for repeat prescriptions. However I usually have to wait at least 5 days sometimes a fortnight. So I have to plan ahead! They are so short of GPs now - we only have one now, full time, and 2 part timers. And they all keep going off sick. The surgery serves about 5000 people.
My steroids are only ever prescribed at a face to face GP appointment. This can be stressful when there are no appointments available. Prescription for 28days.
Think your GP [surgery] needs to a better understanding of PMR - your meds should be classed as repeat or regular prescription - not one that needs a F2F appointment each time.
Problem is, many GPs are used to prescribing Pred for other illnesses on an acute basis, not for PMR as a chronic illness.
This is dreadful. I get my 2 monthly supply so far. I have looked into this and can’t see any new direction re prednisone. I would get back to the receptionist at the GP and say they are leaving you at risk by reducing the amount of prednisone you have access to due to your GCA and they have a duty of care to you. If it’s not changed you will have no option but to report it as a safeguarding issues to the local authority. That should help Good luck
Hi, thank you...I'm ringing tomorrow. I will also be mentioning that it's dangerous for receptionists to be giving information out about such ilnessess as PMR and its treatment 🙄
I think that there may be a crack down on the drugs budget going on. I've been getting text messages to go and see the pharmacist for medication review. This has never happened before. I rang to get an appointment. None available to pre-book! Was advised to see my GP instead! So luckily I had picked up my meds so have a month's supply. So now I have to pick a day and get up at 7.45 so I can be ready to get in the phone queue for a same day appointment with my GP who hasn't any pre-bookable either. I know I will get an appointment eventually but I can't see how this helps GPs when even pharmacists are fully booked out!I am on a "controlled drug" but its not prednisolone! So far as I know pred is not in the CD category.
Is it me or does everyone think things are more and more difficult these days!
Definitely - I'm so glad that where I live is about 20 years behind on some things. Was talking to a friend who teaches IT about the online revolution that happened here as a result of Covid. But you have to hand it to Italy, their IT does usually work and there is always the option of a person to speak to in person whether it is the bank (2 in the village and dozens in town one stop up the train line), the doctor who answers the phone herself or the utility supplier since I chose the one in town even if it is slightly more expensive. Maybe ... We even have charitable bodies who provide help for anything official that requires a knowledge of Italian and IT skills. OTOH - Germany seem unable to cope with their own IT pensions software!
Hi, yes indeed....maybe she was! She kept interrupting like she was a specialist in steroids...I told her she doesn't need to tell me about them and asked if she thought I wanted to take them...I had to laugh...literally...or I was going to lose my blob! 😬
It seems like the bar has been lowered in terms of qualifications and education for workers in general these days, and lots of employees seem really indifferent and incompetent...
ugh, infuriating. I’d be making a complaint to the practice manager, they usually record the calls so it would be easy to go back and check what info she was giving out.
I think this is definitely something that needs to be watched here in the UK and I have a feeling that once guidelines, or whatever, get through and are actioned by surgeries we may see more of your experience, Artnmusiclover, though hopefully not that expressed by the receptionist.
The last time I ordered my monthly supply of Pred (and other medication) online, I am sure I read something about 5mg being limited, however, I can't now find that on my medical centre's website or, indeed, on the paper copy of my prescription that I always get from my pharmacy, when collecting drugs.
But I do recall feeling worried, when I read whatever I read. It left me feeling frightened too: if I can't get the drugs I need, what then? I should add that, in the end, I received the usual amount ie a month's supply.
What happened to you though, Artnmusiclover, is quite disgraceful. I suppose 'they' think we love taking Pred and are using it like some kind of drug enhancer to our, already stressful, lives!! Mmm...wonder what the Beeb would think of this🤔 DO let us know how you get on after you speak to your GP (if you manage to get an appointment that is). Sorry, I feel like letting off steam today about this...
Hi, totally agree with everything you've said! Only pred takers can fully understand the fears, worries and anger we face! I can't help but feel something underhand is about to happen and control will lie with pharmacists. I felt like they thought I was abusing them ...or selling them on the black market as Koalajane says 😁 ...my list of questions is growing...I might just ask to meet practice manager first!
Unfortunately, while pharmacists may be very good at the finer points of drugs, their clinical knowledge is likely to be patchy, Given how ignorant the average GP manages to be when it comes to PMR and GCA, saints preserve us from the not fully informed pharmacist.
Ah. This explains my recent experience. In my 7 years on pred it had always been on free repeat and I always had a good stock. Having been put back on 20 again I was getting low and asked for more. They had to have a letter from the rheumatologist stating the new dose before they would give it. It’s a new young GP. My old one has retired, I think he would just have increased it.Of course the letter should have been sent anyway but that’s another story 🥴
I have to order mine from PODS which is an online and telephone service based in the SW. They are really tight, asking how much you have and when I asked for an explanation I was told it was for economical reasons. Large quantities of drugs are wasted through non-use and clearly the NHS has to tighten its belt for obvious reasons. Like others I would like to keep a stack back just in case GCA ever rears its head. The delay between ordering and receipt is 5 days!
That IS fair enough - but there should be a way of flagging the chronic patients who must have a supply available and fr whom running out is a life-threatening possibility.
Hi, yes...ordering has to be well planned..now I have to think 1mgs 2 monthly and 5mgs 1 monthly...as if my brain fog isn't bad enough. I agree with GCA I'd like to know I have enough 👍
This could have been my post verbatim! My rheumy hasn’t prescribed 5mg tablets for months. During my last flare, I was counting out eight 1mg tablets every day. Not the end of the world, but it’s the thought that he decided I couldn’t be trusted with a 5mg tablet. As if I was addicted to them! My blood boils even now.
That's awful! And yes it does make your blood boil!! ....there is nothing more annoying than when managing your PMR they throw a spanner in the works as if you're taking smarties!! I honestly could turn into Jack Nicholson as 'here's Johnny' in the Shining!
There's an awful lot wrong with our health care system in Nova Scotia, but (so far, here I touch wood) access to pred is not one of them. When I heard China, possible source of our ingredients, was probably going to be on sick leave for the next year or so I proactively had an early renewal of my pred prescription, and I note the Dr, for the very first time, stated that the dosage was variable, "according to response of rheumatoid condition". He probably thought he was giving me enough for three months, but if all goes well it might be a lot longer than that . That is the way our pred should be prescribed. Btw, when I was successfully tapering with my former doctor, one time she said, come back in a year, and gave me enough prescription refills to cover that year! I have been puzzled by the tight controls over pred in the UK, but maybe it's because your medication costs are covered, whereas ours are not?
Gosh...imagine how good it would be for those of us finely tuned to our bodies, to have a variable dosage "according to response of rheumatoid condition". 😊
Hi, this all sounds ridiculous. I have no such issues getting the pred I need in Ireland. Maybe it's an NHS thing🤔. Also I don't think Pred is a controlled drug at all! The receptionist has no place telling you that 'they' are trying to get patients off steroids.....a discussion with your GP/Rhumy is needed. Good luck with it.
"The dashboard calculates the total cumulative dose of prednisolone prescribed to patients in England in the past 12 months, allowing those at risk to be considered for alternative treatment methods"
Ooooh - does that mean they might offer us TCZ??? It being the only alternative that works ...
"In 2020 alone more than 35,500 people were prescribed over three grams of prednisolone, considered a high dose."
And how many of them were PMR or GCA patients? Or adrenal insufficiency? They have to get their act together and recognise the patients who require it long term,
Given the population of the UK that doesn't seem like a remarkable number. I looked it up and apparently about 4,500 people are diagnosed with GCA in the UK annually. One in 1,200 develop PMR each year.
Well, exactly. If the population of the UK is approaching 67 million, and only 35,500 receive this very high dose annually (even correcting for age cohort as DorsetLady suggests) it hardly seems like pred is generally being over-prescribed. Doctors are already reluctant to prescribe it so we really don't want to give them another reason to deny a needy patient. I don't suppose any of us have actually met or communicated with anyone who wants to take more pred than they absolutely need for their treatment! 🤔🤷♀️
I certainly don't know anyone who would choose to be on Pred...despite how well it works for PMR the side effects are not nice as we know.....and beggars belief how they could think it's over-prescribed with those figures...honestly don't know if I trust what the powers that be are thinking or have got up their sleeves 🤔
No, I doubt if anyone wants to take it unnecessarily and as Bcol says of it’s not likely anyone is selling it on the black market, it’s not worth the hassle…..
but I’m sure there is a lot more expensive medication going unused that maybe needs to be targeted -if cost is the driver, which I suspect it is.
“Given the population of the UK that doesn't seem like a remarkable number. I looked it up and apparently about 4,500 people are diagnosed with GCA in the UK annually. “
But that’s not full population -over 50s only make up just over a third of total…… and as patients have illness(es) for a number of years it does add up.
But as PMRpro says there must be a lot of other patients on steroids for other issues.
Many moons ago, long before the dreaded Covid hit, everyone [irrespective of age] on long term meds had an annual medication review …..but it obviously became all too difficult!…
I put in my repeat prescription every month and every month I ask for 28 x 5mg and 28 x 1mg, for the last 4 months when I get my meds I only get the 1mg I complain to the receptionist that this happens eveytime and just get a blank look and another scrip sent to the chemist
So am I right that you are still getting the correct amount to control your PMR but that the 5mgs are replaced with 1s then? You are not losing out in the amount they give you, I trust. It's all V strange...(is it China's fault?)!
🙂...not sure whether it's China's fault??? ....I was given 2 months of 1mgs but only 1 month of 5mg...the point is its never been a problem having 2 months of both.. (I have GCA and have needed to go up to 40mg/50mgs 3 times during the last 4 years!) It's reassuring having a few extra should I need...and taking more is certainly not something I'd do lightheartedly...yes it's very strange
It's just that China seemed to get blamed for most things, it seems, or maybe that's my imagination🤫 Actually, I was wondering whether Pred was imported from China but I think not!
Although frustrating, I suspect this issue occurs for many 'repeat prescription meds':- a) to reduce patient stockpiling(=waste both medicines and health finances)
b) to trigger patient health reviews, many of which have fallen by the wayside due to pandemic restrictions and subsequent 'backlog'. Many of us who have been 'self-managing' have not seen a GP face to face for over 2 years, others have had only telephone consults. As I said, it is frustrating, especially when a person is on 3 or 4 different meds, that don't last for the same length of time.
The receptionist may have misunderstood the reasons?
Hi, thank you...yes they are possible reasons for many I should imagine...however as I am regularly having bloods and have recently seen the rheumy I find it odd, especially having been given the 1mgs 🤔 I do think it's important with something as important as PMR and steroid use that receptionists do fully understand the reasons...or at least suggest you make an appointment for a 'proper' explanation
I get my prescriptions through PODS, so am supposed to request when I'm down to 7days meds left....which doesn't allow for the times I might have to adjust dose/quantity to manage the illness. I'm grateful our practice functions as it does currenty...including our receptionists, however that hasn't always been the case. I hope you get a satisfactory response and improvement of service
Where I, unfortunately, have to go, there are no available GPs and an admin person performs a "medicines management" function. It is becoming very tedious, especially as they chose not to supply me with leflunomide. To date, they have not argued about preds but I expect that to happen. These people are NOT pharmacists and are not medically trained. Bah. Humbug.
Sad thing is that I had an unopened pot of 1000, yes 1000, 5mg preds for a horse. They were disposed of when the horse died.
Hi, how frustrating for you!! It's one thing unexpected changes in rules over meds, but another when non medically qualified staff make decisions or try and explain something they don't understand, (but act as though they do!)
Well, there's the answer, fellow Polly Waddlers,: when we are having issues trying to get those nasty - but vital - Preds, go along to your friendly Vet and say you need a pot of 1,000 x 5 mg Preds for your horse ! ('Poly Waddler ?' my wife noticed I 'waddle' like a duck as I walk and came up with it. It just seems it's easier for our PMR-damaged knees to 'waddle' rather than walk properly).
Haha! You will have to show them a pet who requires pred. They were very tight with prescriptions to my cat. I would say that they were keener to taper him off than my GP is for me.Have you got a sick horse or maybe an elephant?
I have just remembered, I put in my request early for Christmas and the 1mg were prescribed but the 5mg weren’t. I put it in again for the 5mg and that was then prescribed, not sure why but with Christmas and surgeries and chemists closed it was a while before I got it so was using 1s for my 6mg dose
Interesting!!!...take note next time and if it happens again see if your receptionist tells you it's controlled ...and they're trying to get people off them! I hope they don't and it's a genuine mistake
Wow!!! Since when did receptionists have the authority to say that kind of thing!!! I understand surgeries only wanting to issue meds a month at a time (I'm lucky, I get 2 months supply on all my meds) but I think a conversation with your GP is the way to go. As for a relapse please don't worry....you will be able to get a supply even if it means turning up at A&E. Do you have a rheumatologist? There is usually a helpline number. Oh....and prednisolone is definitely not a controlled drug!!!! 😡
Hi, yes I have a rheumy...and there must be helpline number, I know there's a PMR nurse I can contact.... it's comforting to know a visit to A&E is there for backup...I think she has totally got the wrong end of the stick and thought pred is just the same as anabolic etc???
It's possible she got the steroids mixed up I suppose....or maybe she was part of a conversation and has taken her role a bit too far!!! 🤔 I just couldn't imagine our receptionists saying anything like that!! A better directive would be to advise a visit to the doctor!!! Hope you get on OK with everything x
Thank you...yes I think either scenarios could be right..and yes I'd have preferred a 'would you like an appointment to discuss' ...a case for more training I think ...especially in the drug/ilness area 🤔
Yes very scary, I was fortunate it was very short term but required a huge jump up to 50mg pred ...don't really want to be vulnerable again despite me being quite 'settled' at 6mgs
I would let them know that when you experience adrenal failure you will be filing a lawsuit. That might get their attention... Keep a record of all phone conversations, dates and names!
Well... this has opened up a can of worms but as is so often the case there are two sides to an issue. It seems to me that all this goes back to the revision of prescription regulations introduced about two years ago where a 28 days supply of medication became standard, partly to prevent over ordering, wastage and stock piling by patients and partly to simplify ordering and supply for pharmacies. Unfortunately no one solution suits everybody although I understand that a GP can prescribe two months supply if you require it.
Where this goes awry is that we have the privilege of being able to control our own dose so as to taper down and this can leave your GP unaware of what dose you are actually taking. As a result it may be that the difference between what your GP has prescribed and what you are ordering has been picked up by the pharmacist order team at your surgery and 'corrected'.
As regards the 1mg tablets not being restricted to 28 days this is probably because to taper down you will need an unknown quantity of 1mg tablets depending upon your chosen dose.
In fairness to the receptionist I think there was a misunderstanding - you asked a question and she answered it as best she could. Her reference to Pred being a 'controlled drug' probably meant that it is regulated in the sense that GPs are required to reduce it's use along with many other drugs.
You've been through an unfortunate situation and hope you are able to discuss this with your GP to resolve it to your satisfaction.
Thank you...I hope so too.🙂...With ref to 'being able to control our own dose so as to taper down and this can leave your GP unaware of what dose you are actually taking', my GP is good I'm glad to say, and my rheumatologist keeps him updated on my dosage and plan, he is fully aware I'm aiming to taper but of course at my own speed after reaching 50mgs 3 times...and I see him (again fortunately) fairly often as I'm on quite a lot of other medication which we discuss together (I always want to be on as little as possible). As you say...'the difference between what your GP has prescribed and what you are ordering has been picked up by the pharmacist order team at your surgery and 'corrected'...isn't possible as I am on all correct doses, with the knowledge of my GP.
And with ref to the receptionist as you say..'her reference to Pred being a 'controlled drug' probably meant that it is regulated in the sense that GPs are required to reduce it's use along with many other drugs'. This is precisely why I asked if anyone had been told similar as I have never understood Pred to be a 'controlled' drug as I wouldknow it. I totally agree to there being two sides to a story and in fairness I was a little confused after 4 years on pred of the changes, and the receptionist spoke to me like I didn't know what steroids were...which suffice to say yes...it ruffled my feathers. I went on to try and explain why I had such concerns (GCA) or PMR for that matter.. and she had no knowledge of it. Now THAT concerns me...if you're going to give information about a drug and ilness, do your homework...don't just answer with what you think is right. Hope this somewhat lengthy answer clears things up a bit. 👍
Every time I put an order in I get a text message from my GPS pharmacist. When do you plan to reduce again and what are you currently on etc . It’s like a thurs degree .
I’m only on 2mg and have managed to come down from 20mg over a period of time .
It does seem like they are on a drive to get me off completely 🥹
Morning all again, an interesting topic this has turned out to be. I think things may be slightly different for me in that since being diagnosed with PMR I have kept an excel diary sheet which also shows all the medication I'm on, daily doses, amount left, doctors/dentist appointments, test results, how I feel, aches and pains etc which I regularly send to my docs. They love this and are thus always totally up to date on what doses I'm taking etc. Also the pharmacy in the same building has no input into prescribing I just collect from them. All my prescriptions come through the doctor. I get two months supply for all my prescriptions with the exception of Pred where it is usually approx four months. They full understand my needs for Pred may change. Although they are on repeat I indicate how many boxes I need and they usually give me more than I ask for which also means I don't have to ask so often. Appointments, if I, or they, need one, are same day or next day. My OH's Thyroxine come in three month supplies her other medications are two monthly.
Hi again, what you do is brilliant...I only wish I could use excel like that!! Pen and paper for me I'm afraid and my rheumy loves my diary...what an understanding surgery you have! 4 months of pred! Sounds like they could teach other surgeries a few things
My last scheduled telephone appointment with rheumi was June 2021. He announced that I no longer have pmr/gca, no evidence in my blood tests; prescribed a fast taper (drop I mg every month, after a monthly blood test) and that he wanted me off Pred by the end of the year. He declared I now have OA . He hasn’t actually seen me for four years. Told me not to take any supplements and not to read this website. He said he would call again in December, I have heard nothing.
I was at that time on 6mg and so pleased with the progress I had been making. My gp practice had been wonderful but they no longer seem interested and haven’t called me for any blood tests when I ask they are reluctant and don’t do the full list the rheumi asked for. I request my monthly prescription online and have no problems so far
So, I did what he asked and ended up in A&E in the August. They put me back up to 20mg. I am too anxious to speak to anyone since then and using a gentle taper have managed to get back down to 7.5 mg.
I just feel completely abandoned.
To say I don’t know what I would do without you all is an understatement.
Hi Conundrum, reading this provoked so many feelings....😪😡😲☹....none of them happy!! I feel for you...I too have been the victim of a 'rigid monthly 1mg taper' with disastrous results...and to tell you not to read this website...words fail!!!...total lack of empathy there...we need others who are experiencing this and without this forum I'd have made so many mistakes! I hate that you feel abandoned...I'm in Lancashire or I'd nip and lend you my ears for the day
He was usually quite kind, although not terribly effective; it was so out of character. My doctor too has turned. It made me wonder if he’d been instructed to ‘weed’ his list. Reading your post, and I have seen other similar posts recently; I realised the instruction is to get patients off Pred, it seems no matter the cost.
Lovely thought to have a winge together over coffee and encouraging each other. Thank you ☺️ 🤗😘
Can you shed that rheumatologist and go back to the GP? Probably GP feels they cannot second guess your specialist. You know how to look after yourself. You know how to taper. All you need from GP is the routine blood monitoring and a prescription which matches what you need to taper successfully/maintain good control of symptoms. Not very time-consuming for them, but a better match for you?
I think he has shed me. He said if I wasn’t off Pred by the end of the year he would hand me back me to the gp. I expect he will have seen from my A&E admittance that they had increased my dose to 20 mg
The gp had been very helpful until then but I can no longer get a blood test now never mind an appointment. 🙄
So you're saying they are denying you treatment, even though you are no longer under the care of the rheumatologist? Surely that's grounds for some sort of complaint? I know doctors all over the world are overworked, but you should be given at least the basic care. I've been told I should have bloodwork done every six months but I let it slide just now as everyone is so busy, and I'm not having difficulties. But in your situation where you were pretty much forced into a major flare of your disease by ill-informed medical treatment you (and your doctor) certainly should find out where you stand.
It really worries me when the person who SHOULD know how PMR works doesn't. OF COURSE the markers are normal - all that means is you are taking enough pred to manage the inflammation being created each day by the underlying disease process. That is NOT the same as that underlying disease process no longer being active.
It also doesn't matter if you don't have PMR any more - you have been on pred for obviously at least 4 years and that means that your adrenal function is compromised. Before it is safe for you to taper off pred altogether you need to have that adrenal function to be operative. It isn't going to happen dropping the pred dose at 1mg per month - it takes time, a lot more time than that. That doctor put your life on the line - an adrenal crisis can be life-threatening. He should really be prosecuted for medical negligence - but some education would do!
dear pmr pro, thank you for commenting. I did use that line of reason with rhreumi along with another you gave me; ‘slow progress isn’t no progress’ but he just goes silent.
At least I am receiving my prescription requests which I do online and collect from gp pharmacist. I request 5, 2.5 and 1 mg and never had a problem getting them, unlike some members, so that is something.
I am just plodding on, it takes me about 2 months to reduce 0.5 mg using your slow taper. It works, along with good food and rest I have a quality of life and my stamina is improving.
But, it did shake me up and made me angry.
Needless to say, I didn’t stop reading the posts and have renewed my membership. I am incredibly grateful for all the you all do for us. Thank you
This situation has been on my mind a bit today and then something happened to make me rethink things. I'm not sure if it makes sense but thought I'd put fingers to keyboard, nevertheless.
This morning I was filling up my daily Dosette box for the next week and checking out the Pred tablets that I have in my cupboard - I have collected a small supply since PMR diagnosed in April 2022. It suddenly dawned on me that the last prescription I received, in December, for 5mg tablets (not 1mg), was from a completely different company/source than any received until now.
I may be barking up the wrong tree, of course, but it made me wonder if supply of 5 mg Pred is becoming a problem. If that is in fact the case, I guess it's possible that surgeries may have been encouraged 'to get people of steroids'. 😡
Several people on this thread have mentioned problems specifically with 5 mg, though still receiving 1 mg (cf VeeW and Koalajane comments). Could be a worldwide supply problem. It's just a thought...
Corticosteroids are amongst the 400 plus drugs where there are supply chain problems, not only in the UK. It is partly due to the fact the overwhelming majority of drugs come from manufacturers in India and China. There are also shortages of ingredients in some cases.
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. That is the way our pred should be prescribed. Btw, when I was successfully tapering with my former doctor, one time she said, come back in a year, and gave me enough prescription refills to cover that year! I have been puzzled by the tight controls over pred in the UK, but maybe it's because your medication costs are covered, whereas ours are not?
Tapering pred
Reducing Pred
5mg Pred
Trying to taper very slowly again , advice on changing pred time from night to morning. 
