I need advice, I am in Cambridgeshire about to move. I’ve continuously struggled with the local GP surgery to get an appointment to get my Prednisolobe renewed monthly, this week has been particularly bad with the receptionist fobbing me off to go directly to the pharmacy. Which won’t happen, then they’ve claimed they will prescribe which hasn’t happened.
I’ve tapered down to 5mg from starting at 15mg in January when diagnosed.
As mentioned I am moving so have applied to join the new GP.
How do I deal with resistance from the receptionists to get through to the doctor - I’ve complained but the receptionists block my actual speaking to the surgery manager. Shall I just make do with strong NSAIDS which do help till I get registered to new GP.
I’ve lived most of my adulthood out of the UK and just wondering how to deal with resistance from the GP practice itself.
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ExYogi
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I don’t understand, where are you getting your pred from now? You can’t just stop the pred. and take NSAIDs instead. The pharmacy cannot prescribe pred to you, that is up to the doctor who will then send your prescription to the pharmacy so you can pick up the pred. You should not be taking NSAIDs with the pred. if you can help it. It is not a good idea.
The local GP's won't grant me an appointment with the GP to renew my pred, so I am at a loss. I know I cannot get a prescription from anyone other than a doctor but they are insisting and resisting an appointment for a renewal, when I phone at the correct time for an appointment when they hear my reason for an appointment they say they are full for the day I must try the next. I've tried contacting the practice manager but those receptionists insist they will get the nurse to phone me and will renew my prescription.
Why do you need an appointment? If they are just renewing your prescription you don’t need an appointment. Can you just ask them to renew your subscription? They should tell the chemist to get it ready for you and you go and pick up the pred.
The nurse has just phoned, there is a new process and she can renew my prescription. For 8 months I’ve had to go through the doctors, the practice is now under new management with a new process in place, because I’m tapering they insist on checking in monthly, at least it’s an accessible nurse.
Thank you @piglette. It’s really bewildering to navigate through the system nevermind the pain.
I am so glad it is sorted out. I find everything is so complicated nowadays. It is impossible to get anything done and you seem to be met with stupidity whenever you need to get something sorted out.
You sound as if you havent been put on the repeat prescribing system. Your GP has to authorise this. You might ask to speak to the pharmacist at your regular chemist, explain your dilemma and ask if there is any way they could help by contacting your GP on your behalf. They will be well aware of life threatening consequences of you stopping your Pred.
About 3 months ago the new GP student (I've never quite had a GP) said she would order the prescription but never put it through the system, it was a Friday 3 days later when I went to the pharmacy to collect and of course it wasn't there, I only had one day's worth. No-one could help me - not the pharmacist, 111, nor the nurse at the surgery - it was awful. The surgery manager helped me first thing on the Monday morning I was on about 8mg then. One would think we could have arranged a better system then, but it seems the new management have got things under control.
The pharmacist was in the wrong there - I forgot my pred a few weeks ago when away from my daughter's to attend a funeral. I went to Boots and the pharmacist sold me a week's worth of the dose I needed and actually said "far too dangerous to leave you without". Any pharmacist can provide emergency cover, even if it is only 3 days. And apparently most wouldn't charge the £8 Boots did!!!
I believe the recommendation now when changing practice is to stockpile several months to cover you until the notes get from the old to the new practice. Good luck with that!!
When we moved and had to change surgeries our old surgery gave us a three month supply of everything we take, to cover any possible delays. Our new surgery has everything on an automatic three month repeat, all we have to do is collect it.
Your GP surgeries sound very switched on and organised… as it should be really. Mine have been as well, although don’t need them much nowadays [fortunately]. Not sure why some seem to make life so difficult… although like many other things, I guess we only hear when there are issues.
They have been/are and it all seems sensibly logical, less work and time involved for all concerned. As you say, hopefully, we only hear about the few.
The monthly dispensing is a piece of nonsense - it occurs to me, now so many GPs have an inhouse pharmacy, are they deliberately creating extra dispensing fees to pay for the pharmacy? It is the same whether you prescribe 1 month or 6 months though it is due for every different dose. It is costing the NHS a fortune.
As much as our last surgery was good and gave us the three month prescription for moving, their normal procedure was monthly prescriptions and as I and OH had quite a few between us we were at the pharmacy very regularly. New surgery so much better in that regard. All presents prescriptions prescribed for the same date and automatically ordered every three months. So much easier.
My standard items, those whose dosage etc never changed, came on a normal repeat prescription my Co-Codamol came as requested and my Pred was always what I requested which was normally for what I estimated I needed for around six months.
Three of my Rx are now on monthly dispensing, including the Pred. This seems to be more prevalent now in Nova Scotia. A money-making racket! Even my best Pharmacist wouldn't renew my Pred even just to cover the time GP was away. I said "Well you know I can't go without it Rachel!" Fortunately the GP was back earlier, but I had to go in and plead my case. She said "it's not up to the doctors to clean up my mess". I was gobsmacked. Like I wanted to increase when my gall bladder decided to crash. So I cried. In the end we decided to leave the past and start me from 9 mg. Tapering 1 mg per month. She didn't like DLs 5 week plan, but to me it works and is still 1 mg per month really. Another crisis averted. Onward and downward.
I’m on MTX as well as pred, which requires regular bloods to monitor the liver. I’ve been on the same MTX level and bloods always ok so my Rheumy said I only need bloods tested at 8 week intervals, as detailed in letter to drs last year.
Every other bloody month when put in my repeat script I get an automated text message that my bloods are overdue and the MTX is not issued. So I have to go through the charade of trying to get through to the pharmacist to explain that the blood test isn’t due as it’s not required every month. I’ve asked them to make sure it’s noted on records, but seems nobody actually reads them anymore, nor letters from the hospital …..🤷🏼♀️
Leave a snotty review on their site? I had initial problems when moving to the repeat prescription system online, & they still omit medication from time to time - thankfully not the pred.
Sorry you’ve had such problems with getting your pred but my concern is how quickly you got down to 5mg in less than 8 months. Did the initial 15mg relieve all your pain and are you still getting the same relief at your present dose? Did your GP diagnose the PMR and give you advice on tapering? I’m just curious as most of us take a lot longer to get down to 5mg.
If you are lucky and hit on the right dose to manage the ongoing day to day inflammation, after you have got the initial build up under control, it can happen. I doubt that many people are that fortunate, however. I managed it in less than 3 months, though it wasn't planned that way. I was on 15mg for 3 weeks and having some disturbing psych symptoms, so I had to reduce rather quickly. I was on 10 mg for a week and then had to reduce to 7.5 mg. Then went to 5 mg after another month. I stayed on 5 mg for months until the rheumatologist wanted me to stop the pred, and then when I tried to taper, I ended up in a flare. 18 months on from starting pred, I am on 6 mg and don't see myself trying to reduce again any time in the near future. My effective dose seems to be 5-6 mg, but it is clear that the PMR is still very much active, I just happened to land on the right amount. I'm lucky that I am extremely responsive to the pred and I don't seem to need very much.
I can feel DL and pro cringeing at my early taper plan as they read this lol but it was done under the close supervision of my GP and they were calling me every couple of days to check up on me. In my case, the alternative would have been to stop pred altogether, unless they could quickly get me to a dose that I could tolerate. I wouldn't recommend doing what I did without the support of your GP.
Oh no - I don't, you can taper fast if YOUR PMR allows it. If you are going to end up at a fairly low dose then you will manage quickly but the vast majority find it takes longer for the autoimmune bit to die down. The speed of taper doesn't make any difference if you don't flare. And I suppose you COULD do it really like a chemistry first titration where you wizz down the doses. But you would have to have a decent gap between bigger steps and react as soon as you noticed symptoms comig back - that could get you to 5-7,5 in a couple of months and just have to do that narrow bit slowly. And it would be less good for anyone who really doesn't tolerate the change in dose well.
Exactly, that's why I said that I wouldn't recommend it. I'm just glad that it worked out right in the end and that I wasn't forced to stop completely. It would have been a real bummer to have had to go back to living with all that pain again, so soon after getting it under control.
Though, the scientist in me is interested to see how it pans out in the future. My sense is that my PMR is at the same level as it was when I started pred last Feb. So my puzzlement is how people manage to get off the stuff altogether so quickly in less than 18 months. I have an inkling that I will be stuck on 5-6 mg for good and not be able to reduce further. Especially, as I am like you and went undiagnosed for such a long time and I reckon that all this started over 20 years ago. If it was going to burn out, I would have thought it would have happened by now. Only time will tell, I guess.
My rheumy in Italy says really quick tapers - wasn't PMR in the first place. there are lots of potential underlying causes for PMR symptoms. I have also had symptoms for over 20 years altogether - never appears to have burned out in that time. The time it takes to get off pred must at the very least have joined up all the relapses or whatever you want to call them!
Just to respond to Mfaepink1973 I started off with 15mg which was an instant fix, it took me a month to get my first appointment (same surgery) it was over Christmas and my most miserable ever, the pain!! We did the blood tests and my inflammation markers were very high, having struggled for a month before seeing GP I did enough research to figure out I had PMR. What I didn’t research was the tapering off and my GP was pretty aggressive moving me from 15 to 10 very quickly which was OK then she wanted me to go to 5 OMG that was when it fell apart and I did my research on tapering. Started back at 10 in February then been trying to go down 1mg a month … sometimes I need to go back up 1mg - right now I’m between 6 & 5mg. I was doing really well till I started prepping for my move, stress and hard physical work is not good for me. So right now very stiff mornings, shoulder, neck, back & groin till I start moving.
I can confess I felt a shift when I started with aloe Vera juice and a shake for leaky gut.
I’ll see how it goes after move and life becomes a little normal.
It’s recommended that you go down half a mg from 10 mg on and if symptoms have returned it means you’re not taking enough to deal with the inflammation so it will build up and cause a flare. PMR pro explains it a lot better than I can
Use the online booking system. I am in Cambridgeshire too and it works well - you can have a routine monthly prescription renewed but also make special requests (not always accepted by the surgery pharmacy, it is true). Getting to see a doctor is another matter altogether…
You shouldn't need an appointment you should just be able to use the airmid app or similar to reorder. I just go on once a month and request them and they are ready for collection at the pharmacy 2 days later. Hope you get sorted
This seems to be happening elsewhere. My brother-in-law has just told me his surgery is being difficult also. I suggest you write a letter (and send an email) to your doctor telling him/her about the problem and also contact your local patient advice service (not sure if that's the correct name). Try finding a name associated with dealing with patient problems in the area and copy the letter and email to them. Good luck.
In the early days, I was having trouble getting my refills of pred and the pharmacist sorted it for me. They called the surgery. Though I had already registered with the doctor's surgery that my prescriptions would go directly to my local pharmacy and I collect them when they are ready, so I am not sure if that made a difference. I have been given an emergency pack after the pharmacist accidentally gave me tablets containing wheat starch, which caused me to run out. They told me that they would never ever leave me without any pred because of the risk of suddenly stopping, so I think that your pharmacy is in the wrong and potentially could be considered negligent.
Anyway, lesson learned, and I now I always have a small stockpile to tide me over. My other fear has been of developing GCA and not having enough pred to hand, so I always request my scrip early, so that there would be enough to hand to keep me going on the higher dose for 2 or 3 days. Obviously, I would never take the higher dose without being told by a doctor, but when I told my GP that I do that, he thought it was a good idea, as he has always been very vigilant about the possibility of GCA.
hi I had similar issues with GP surgery so I now get Pred prescription directly from Rheumo department at the hospital that deals with my GCA. Hopefully you can do this too as it’s worked out better for me. I have to request it at least two weeks in advance tho x
In the UK ? I ring my doctors prescription line and tell them what I need subject to what tapering level.i am at. The prescription is produced and send straight to the chemists ready for collection a few days later.
wow ExYogi. You’re done so well to reduce that quick since January. A lot of us have taken years to get down to a low dose (I’m currently on 2.5 mg. - from 15mg 4.5 years ago).
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