Rheumatologists letter to GP
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This was a bit of a surprise as i don't remember what he said being discussed at my appointment! My son came with me and feels the same so maybe not just my 'brain fog'. I was diagnosed by GP in Feb 14 with GCA/PMR with 40 mg pred.Reduced to 9mg by Dec on instructions from GP and Rheumi. He agreed it was PMR in Dec but by then I was suffering from much pain in hips, shoulders etc with raised CRP. The letter states he advised 20 mg for 1 week then back to 10 mg. Appointment with specialist nurse in February by which time I have to decide, apparently, between taking Methotrexate or Luflonomide! I am afraid I ignored his advice (due to heart issue worries) and increased to 10 and then 12 mg. Have split the dose with 10 mg am and 2 mg evening and awaiting new blood test results, hopefully by tomorrow. if I can get CRP down then can I refuse the other drugs that I don't wish to take? Pain has definitely lessened.
2 likes, 16 replies
pat38625 Whisper2003
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Pat
Whisper2003 pat38625
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pat38625
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Pat
Whisper2003 pat38625
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pat38625 Whisper2003
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They don't realise how tired we get and we are bombarded with information and they drain whatever energy we may have, out of us. I hope you get sorted, I really feel for you. I haven't had my first Rheumy appointment yet was sent to Endocrinology last Thursday about PMR, they are referring me to Rheumy. Started on 20mg of pred 12th December and Consultant in Endo said to reduce it to 15mg but work with my gp and tweak it when necessary. So after putting a question on here, I got advise, support and I made up my mind to reduce down to 17.5 on Saturday. Had a few wee pangs of pain in my thighs while driving but nothing to fuss about. So here's hoping. You take care and rest easy.
Pat
Whisper2003 pat38625
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pat38625
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Don't let them bully you. It's not the first time I have made a complaint about a consultant. We shouldn't be in pain like this, there is no need for it. Yes we need to taper gradually and that seems to be the answer.
EileenH Whisper2003
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20mg and immediately reduce to 10mg doesn't fit any guidelines. Have you tried taking the paper from the Bristol rheumies to your GP? Now you have a PMR diagnosis he might be happy to work on the basis of that:
It is the last but one link here:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
The final link is also excellent.
Take your son with you to the GP and tell him you want to discuss this sensibly using those two papers. Methotrexate is no longer advised as a steroid sparer in PMR, there is no reliable evidence it works and has finally been discounted. Leflunomide should be kept for a last resort, not least because although a pilot study looked good the results with other patients aren't as good because they develop side effects or it doesn't make any difference - sensible and slow reduction of pred will work for most people once the inflammation has been brought under control, but 20mg for a week and then down to 10mg won't achieve anything in the long term. Try to get the GP to help you work through the recommendations from the Bristol group - it at least has achieved a flare rate of 1 in 5 as opposed to 3 in 5 using the sort of scheme your rheumy is touting.
The blood tests are secondary - the primary criterion is your symptoms. If they are improving at 12mg then I feel that should be continued for at least a month and then reviewed, continued for longer if necessary. But then reduce very slowly, not more than 1mg at a time and spread over a few weeks if necessary.
Whisper2003 EileenH
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EileenH Whisper2003
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Talk to your GP, and take your son with you. That's a good start.
Whisper2003 EileenH
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EileenH Whisper2003
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tina-uk_cwall Whisper2003
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Also, I am not medically trained but to up your preds to 20 mgs for 1 week only then to reduce them back down to 10 mgs will not resolve your problem. You need to be on a higher dose for at least 1 month if not longer, or until all the pain is under control then a little longer for good luck then taper down in smaller amounts and in turn staying on those amounts for longer.
i am not sure if your heart problems, but I assume you upped the dose to 12 mgs because 10 mgs wasn't having any impact, which doesn't surprise me. But I think you need to be taking the dose all in one and not split the dose 10 mgs and 2 mgs. I think you need to be on this dose for 6 weeks at the very least and then only taper when all your pain has gone.
now to the issue of the 2 drugs you do not wish to take. Personally I would not want to take these drugs either and I will fight tooth and nail should my consultant attempt to change my medication. Unless there is an underlying clinical reason as to why the medication needs to be changed, all research papers do not recommend methotrexate (never heard of luflonomide) as a drug to use for PMR. According to the PMR Bristol plan a patient suffering from PMR would still be on 10 mgs of preds in their 15th month yet in less than a year you are already on 9 mgs with your consultant pushing for a change of medication.
I would research both PMR and GCA and their treatment plans then at your next appointment ask why they wish to change your meds contrary to the established best practice. Take your son along to and allow him to bat for you. There is currently no evidence that mtx helps with the control of this condition so don't be bullied into taking it. Your pain etc in my opinion is down to poor clinical practice and if I couldn't trust my consultant with that I sure as hell wouldn't trust them putting me on mtx. Be firm and stand up for yourself. Do keep us informed his you fair. Regards, christina
tina-uk_cwall
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Whisper2003 tina-uk_cwall
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tina-uk_cwall Whisper2003
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