I would like advice please. It is a long story but I will try and keep it brief. Basically I was diagnosed with PMR about 15 years ago and started on prednisalone, eventually came off and no problems until a few years ago. Sympoms started again but ESR was normal, still given prednisalone after a lot of gp visits and an appt with rheumatologist. Fast forward to last year all started again, gp refused to give prednisalone without blood test, had to wait weeks for blood test so started on prednisalone myself which I already had, blood test normal which was expected. Saw another rheumatologist who agreed it was PMR and basically told me to have a blood test every month and reduce pred by 1mg every month. I am now at 8mg but am getting pain in my shoulders and neck. I really want to increase the dose but am worried my gp won't prescribe it. It is not on repeat and every month I have to ring and speak to them. All they seem concerned about is the blood test. I am also diabetic so I have the diabetes nurse telling me steroids are not a good thing to be on. I am so worried this is not going to be resolved and I don't know what to do. I am terrified of getting the terrible pain and disabling symptoms again. I still work, caring for a family member and need to be able to carry on doing this. I feel like I have a fight every month to get the prednisalone and so I have no extra to be able to adjust the dose myself. Sorry for the long post!
Advice please: I would like advice please. It is a... - PMRGCAuk
Advice please
Firstly, really sorry you are in pain and feel unsupported by your medical team. This is the worst. I also feels super annoyed that my GP surgery refuses to put prednisolone on repeat prescription for me. Every time I have to contact the surgery and I worry they would stop prescribing or that I will run out between prescriptions. I was abroad end of last year and managed to buy prednisolone over the counter (!), but only 5mg tablets were available and I am on 3.5 at the moment. Still it gives me peace of mind that if I run out, I have some reserve. It is insane. In terms of advice: keep pushing for solutions if you feel your symptoms are not controlled and check if they could prescribe you what is called "steroid sparing" medications. For PMR it would be DMARDs, like Methotrexate, for example. I am on it and it works well for me. It makes it easier to taper down prednisolone. It's not without its own risks, but I have been on it for a year now without side effects.
I have 5mg and 1mg on my repeat prescription, but I only get 1 box, ie 28 tablets, each time. So I have to ask the Pharmacy to re order every time. It’s a pain and quite often I order 5mg and they send me 4 packs of 1mg instead. Last month I complained to the Practice manager. I’m ordering it again now, so will wait with bated breath to see if I get the right one. Pharmacist thinks they just go down the list of repeat prescriptions and click on 1mg by mistake, but it happens quite often. I just wish they would trust me and give me two packs of 5mg at a time. It would save everyone time.
Point out to the PM that they are costing the NHS more by being so silly with a longterm pred patients: the prescription charge is the same for 1x5mg tablets and 4x5mg tablets. You can't just stop pred, you will be on it for some time even if at a lower dose in the future, so it will all be used up. And I don't think it has a street value!!!!!
It might on here considering the horror stories we have heard trying to get them legally recently…😳
True ... And yet they are quite keen on getting us onto gabapentin or pregabalin - which do have a street value!!!!
I think she would refer me to the GP. But, the problem is we have locum GPs so if one said yes, it might get changed back again another time. Last time, it got my back up and I complained, but sometimes you just don’t want all the hassle. As I said in my reply to Gala. I’m doing a slow taper from 6.5 to 6, so I’ll be needing the 5s for a while yet. I’ve ordered them from the Pharmacy this morning. Will see what happens this time.
Once something is written into your notes - i.e. how pred should be dished out, that entry can't be taken out except by the doctor who wrote it. So you can refer them back.
5s are usually easier to cut than 1s - to get 2.5 and add 1s - that will take you a long way!
Next time I speak to the GP I will ask if I can have more the one pack at a time. If they send me 1mg this time, it may be sooner rather than later.
This is frustrating. I get a month worth of 1 mg tablets to allow to my current tapering dose, but this does not give me much room for any flare protocol. And it is not on repeat despite my numerous requests. They keep saying that it has to be assessed every time by their pharmacist. But they do not really assess anything or ask any questions about how I am doing, just issue a prescription, but it delays it and I have to really be on top of calculating hw much I have left and if it lasts long enough till I get my new prescription filled.
I usually order two weeks in advance to give me time to contact the surgery if it goes pear shaped. If they send me 4 packs of 1mg the Pharmacist asks me if I want to keep them and I always say yes. That way I’ve built up a bit of a supply of 1mg. But, if I order the 5mg too early, they will refuse it saying it’s too soon from the last order. So I can’t build up any back up of that. I’m currently in the middle of a slow taper from 6.5 to 6.
Hope it works for you. I am a bit stuck at 3.5. I hope they won't start reducing my prescription frequency.
I got down to 6 last July and flared. After increasing by 5mg for a few days I went to 8 and the gradually down to 6.5 where I’ve stayed for several months as I’ve been coping with hubby’s food operation before Christmas. He’s now getting better and a lot more mobile, so I’m trying to get to 6 again. Then I think I’ll try and stay on that for a couple of months before contemplating another reduction. The trouble is if they only let you have 1 pack of 5mg at a time, you’ve not got much to spare if you do have a flare.
I think you may need to get the rheumy on side to tell the GP not to be so silly. You are obviously one of the up to 20% of patients with PMR who have normal range blood markers. For you, symptoms ALWAYS trump lab results - so not sure why the rheumy said monthly testing. And since you are a diabetic - you SHOULD be under a rheumy as a complex patient.
Gala123 has mentioned asking about DMARDs to see if that helps the response to pred - a good idea because that means they would HAVE to refer you to a rheumy as they are not allowed to initiate these drugs.
Are all the doctors in your practice as intransigent? Often seeing a different one who listens and realises each individual is different is enough. I believe in continuity of care and generally saw the same guy - but he failed to recognise PMR for 5 years because my markers were "in normal range". Another doctor I'd never seen was a totally different matter - I'd not seen her because she had been on and off and on maty leave and was part-time into the bargain.
If they are all much the same, sometimes a discussion with the Practice Manager will clear the air. Is there another practice in the area you could try? But I would stick out for seeing the rheumy as a matter of urgency.
For the record agree with PMRpro - your GP needs to be reminded your diagnosis comes from the expert in the field - and if Rheumy thinks you have PMR and need Pred, and its in your record -then that's the end of discussion.
Thanks very much for the replies. Unfortunately it is very difficult to see the same gp twice and usually end up seeing a locum. The rheumatologist put in the letter that I should reduce pred by 1mg per month but I feel this is too quick as I am starting to get the pain again. I saw the rheumatologist privately as thd nhs waiting time was more than 6 months. Tbh I wasn't that impressed with the rheumatologist he commented on my results saying ESR has only been raised once years ago, strange. I live in Northampton and wonder if anyone knows of a good rheumatologist in this area? Thanks for any help.
Comment from Rheumy re tapering 1mg per month obviously doesn't help.. you might get more feedback if you raise new post about Rheumy suggestions in your area.. cannot think of anyone offhand - and perhaps consider travelling a bit further afield [if that's possible].
Our go-to man is Prof Rod Hughes, but he's in Surrey... but he usually only wants to see you F2F once an thereafter by telephone/email.
His details if any good to you -finder.bupa.co.uk/Consultan...
Thank you for that. I will do as you suggest and thank you for rheumy details. I will definitely keep them, I am prepared to travel and will see if Surrey would be feasible.
I would travel to see him!!! One lady travelled from Kent to Leeds to get a diagnosis so it can be worth it.
Hi.My parents were born and lived in Wellingborough for most of their lives!
I am under Dr Hughes as live in the SE but knowing where you live I would definitely travel from there to see him. His approach I feel would be worth it.
As the others have said, I had 1 FTF and then I email with any concerns which mostly he replies to amazingly promptly.
When I was sent down the ill health route via work my GP requested another consultation with him and a telephone consultation was had.
Good luck.
Thank you for your reply, Wellingborough just up the A45. Could you give me some more info about Dr Hughes please?
Thank you.
Yes it is! He is very laid back and very frank and appreciates every one on this journey is different and responds differently to steroids.
He has said to me often, when I have despaired that if I had to stay on 5 mgs for life it would not be the end of the world.
I saw him at St Peter s hospital in Chertsey Surrey but I also believe people have seen him at Asford Hospital Kent.
That would be an easier journey for you from Npton, M1, M25, M20.
Hope that helps.
I am sure others can add their input about him too.
Every time I speak/see my rheumatologist I ask them to add certain things to the letter they write to the GP. ie prescribing steroids, any vaccinations I may not be eligible for in the NHS guidelines etc. It works every time. Perhaps you could ask your rheumatologist to help with your prescriptions.
I’m so sorry to hear of your experiences..horrible. But know you’re in the right place and good people here to offer you great advice and support. Sending all good wishes. 😊
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