Prescription for Pred has been cancelled

[Billswife]

I am currently on Week 5 of a 7-week taper from 1mg to 0.75mg. This morning I logged on to my surgery’s website and realised that my repeat prescription for Pred had been cancelled, presumably by the GP in the practice who advised “no further suppression required” after I received the result of my basal cortisol test, which was 396nmol/litre. I was very annoyed as I had hoped to continue with 0.25mg tapers, on a 7-weekly slow taper, with perhaps two weeks on the lower dose before commencing the next taper. I have followed Dorset Lady’s slow taper plans since having a few issues when reducing from 10 to 9mg years ago, and have never tried to rush a taper. I have never had a PMR flare and consider myself very fortunate to have got this far with the invaluable assistance of this forum.

At present I have Prednisolone at home which consists of 27.5mg of 1-mg tabs (expiry date Nov 2024), 2 unopened packs of 5-mg tabs (expiry date Sep 2025), 2 unopened packs of 5-mg tabs (expiry date Nov 2025) as well as 4 unopened packs of 5-mg tabs (which expired in May of this year). My question is should I dispose of the 4 packs which expired in May of this year or are they still likely to be of use for a while longer as I would really prefer to continue with the slow taper I was on, splitting and using part tablets to enable me to do this. This would be done without the knowledge of the practice and your thoughts on the matter would be very much appreciated. I should add that I have had no contact with the practice regarding PMR since early 2020 other than ordering repeat Pred prescriptions online which have been signed without question and forwarded to my local pharmacy for me to uplift.

[DorsetLady PMRGCAuk volunteer]

GP was out of order, and no matter what your cortisol test result was, Pred [nor any other medication for that matter] should be stopped without discussing with the patient beforehand.

Sounds as if you have enough Pred to carry on, albeit with a lot of cutting, mixing and matching.

Provided they have been kept in suitable conditions, i.e. dry and cool the May expiry tablets will probably be okay, so maybe use them up first. You’ll soon realise if they aren’t. The question has arisen before, and general consensus of opinion is use common sense - a few months is okay, a few years is not!

They don’t seem to be on the list where it’s dangerous to use out of date meds. But of course it’s your decision.

I’d be contacting practice manager if your surgery has one and stating you are concerned that medication has been stopped with consultation, and you’d like a full explanation.

[Billswife in reply to DorsetLady]

Thank you so much Dorset Lady for your prompt reply and confirming that the Pred which expired in May should be OK to use. I keep the Pred in a separate box in my bedroom which is dry and cool and, of course, I will use these tablets first. I have a very good pill splitter and my husband is becoming an expert at splitting half tablets with his architectural scalpel, long retired from its original use! It will be a lot of mixing and matching but having got this far I feel I would like to attempt to get to zero, fingers crossed, without rushing. I am sure you understand. I agree that that particular GP’s behaviour leaves a lot to be desired but I will be avoiding him in the future. Thank you again.

[Rugger]

I agree with DL that you should contact the Practice and complain about stopping your medication without consulting you. They are not to know that you have more than 1000mg in your stash! 🤣 If they can do this to you, they might do it to someone else who is left high and dry.

I had my 1mg tablets removed from my repeat template, leaving me with 5 and 2.5mg tablets when tapering from 4.5 / 4 / 3.5mg and so on. I complained and they were reinstated. Some "Jobsworth" person made the decision to 'tidy up' my records......!

Well done to you and your husband with the splitting!

[Billswife in reply to Rugger]

Thank you for your comments and well done for a successful intervention resulting in reinstatement of your Pred. I am about to compose a letter to the Practice Manager to try to avoid this situation arising for any other patient, which I agree is a very real concern. Any response I receive will be posted on this site at a later date!

[Gimme]

My career background would usually make me loathe to recommend using medicines after their expiry date. However, common sense needs to prevail in your situation. Medicines aren't OK one day and then not just the next (with the exception of injectables ), there will be a gradual decline. If a medicine has an expiry of 3 years, all that usually means is that was how long the stability study lasted and they likely didn't generate any more data after that time. Though, in some cases shelf life can be restricted when tablets start to fail. If it were me, I would be inclined to use up the expired tablets first, especially if it is only going to be another couple of months. Any longer than that, and I would go back to the doctor and negotiate another couple of packs and explain why. He must surely realise that you are at a vulnerable stage for relapse, even though the PMR seems to have gone. Last time I saw my GP, we discussed this specific point and he was very clear about taking it easy at the last stages before stopping.

[Billswife in reply to Gimme]

Thank you very much for such an interesting post. I will certainly be using up the out of date Pred first. The remainder of the 5mg Pred which is in date until Sept and Nov 2025 was the result of being sent 2 pkts of 5mg along with my request for 2 pkts of 1mg on two occasions, despite pointing out the error to the practice on the first occasion it happened. There is not a lot of communication between the pharmacy I use and the GP surgery and eventually I wrote to the GP, who had signed the prescriptions, regarding the situation. I had no response but noticed that the 5mg Pred on the repeat template disappeared - result! Your GP sounds excellent. Back in 2016, when I was newly diagnosed, I also had a really good GP who had a great interest in PMR and GCA. She actually recommended this forum to me along with the advice to taper very slowly. Unfortunately she retired in 2020 and due to the pandemic and subsequent practice changes I have never actually met any of the current GPs. I do intend to alert the Practice Manager to my current situation and will post any response on the forum.

[Billswife in reply to Billswife]

Sorry, I was diagnosed in 2019 and not 2016 - slip of the finger!

[Gimme in reply to Billswife]

Agree, that particular GP at the practice is exceptionally good. It's a bit of a lottery who you get normally, but I seem to have mastered the art of requesting follow up appointments for my PMR with him now. He is the senior partner, so he gets pretty booked up, but I insist that he understands my history (always a good one lol). I first saw him not long after being diagnosed by one of the juniors and I asked him if he thought I had PMR as there seemed to be some doubt and he was adamant After that, I got passed around a bit and I lost confidence as I was getting contradictory advice with everyone I saw. I like him because he listens and he treats the patient, not just the disease, and I get the impression that he has a lot of experience with PMR.

[Billswife in reply to Gimme]

Very pleased that you have found such a good GP, who is obviously interested and knowledgable about PMR. I was very apprehensive when the really helpful GP in the practice retired but this forum has been a lifeline and I have managed the PMR journey with its continued help and support. I have found that the admin staff in our practice are excellent and, before writing to the Practice Manager, decided to ring their general enquiry line. I explained the situation to a member of their admin staff, who understood the position perfectly. She told me that the GP in question who has cancelled the Pred prescription is on holiday this week and she will put the situation to one of the other GPs later today and asked me to ring again tomorrow afternoon for the outcome, which she hoped would be a further prescription for 1mg Pred. It may be that a GP will want to speak to me first and I agreed that would be fine - to be continued lol.

[S4ndy]

I think you need to speak to your GP and explain what you are doing. I recently asked for my 5mg tabs to be 1mg instead as I was tapering below 5mg. That started a whole chain reaction at my surgery. Luckily my Rheumatologist had written to my GP (no one had read his letter) so I had help. In the end it was the pharmacy who sorted it all out and now getting the 1mg tablets as 4 boxes of 28 a month. GP had only prescribed 1 box of 1mg a month ie. Substituting my 1 box of 5mg for 1 box of 1mg! All sorted now but took several phone calls to accomplish! Your best bet would be to speak to your GP and follow up with your pharmacist.

[Billswife in reply to S4ndy]

Thank you for your response, sounds like another very tangled situation so well done for perseverance and getting things sorted via your pharmacy. I was referred to a Rheumatologist in late 2021 following an out of the blue telephone call from yet another GP in the practice who advised “they have other drugs they can prescribe which will help you get off steroids more quickly”. At that point I was tapering slowly from 4 to 3.5mg and I had a good idea that on that dosage the Rheumatologist would simply advise me to continue as I was doing, which is exactly what happened. He was very scathing re her referral and said he would be writing to her. I did apologise to him for wasting an appointment but could sense his frustration with the GP. I heard no more from the practice regarding that situation. As I have mentioned in previous responses, I am now composing a letter to the Practice Manager and will post the outcome, if any, on the forum.

[Missus835]

Well that sucks Billswife and sounds like what will probably happen to me because I've not been following the fast taper the rheumy wants me on. I too am using DLs 5 week plan. I've only 2 refills on my Rx which they will only fill in 1 mg tabs as they are counting. As far as shelf life for Pred I'd have to check with pharmacist.

[Billswife in reply to Missus835]

It’s a very frustrating situation indeed and I’m sorry to hear that you are also in this position. As you will see, I have resolved the position with the assistance of a member of my practice’s admin staff and have been prescribed a further two packets of 1mg Pred, but I am determined not to back down on my right to continue with this very slow taper which has worked so well over the past five years. This forum has been invaluable.