I'm writing on behalf of my mother-in-law how's been suffering from PMR for around 5 years. 'Suffering' is an understatement, she's barely mobile and feeling a great deal of pain daily. She's on prednisolone but she seems to be getting worse steadily. She's only ever been seen by a number of GPs in her local surgery, in a rural town in Leicestershire. None of those GPs seems to see the need to refer her to a specialist. And as per her personality, she doesn't want to press the matter or cause a conflict and just does as the GPs tell her to do. It's hard for us to see her in such amount of pain. We'd like her to see a rheumatologist with experience treating in PMR, NHS or private. The worse thing that could happen now would be having a bad experience with a specialist, so we've been very careful searching for one. I've read here that Dr. Sarah Mackie is well recommended and if we can't find one locally to her that will be one option. However if anyone could recommend us a consultant in Leicester area we'll be very grateful.
Hi, I agree,my your mother in law needs better care and a definite confirmation of diagnosis. On Prednisalone, she shouldn't be suffering pain and immobility so acutely. It is either another condition like rheumatoid arthritis or her Prednisalone dose is too low,which is the worst of all possible worlds because you experience the side effects but not the benefits. I have had a consultation with Dr Mackie,she is kind and encouraging and really listens to you and has a particular interest in PMR. It is well worth a journey if you can get a referral. You don't see Rheumatologists that frequently but your mil needs to be set on the right track. Encourage her to read some of the posts on here. It is really important to take charge of your condition ( particularly when there is a lot of ignorance surrounding it as is the case with PMR and GCA currently).
I am appalled at the GPs attitude - they aren't doing their job, she deserves someone who knows what they are doing and they don't. If they aren't managing the PMR then she needs to be assessed by a specialist - because it may not be PMR or she simply isn't on a high enough dose - what dose is she on?
Unfortunately Prof Mackie doesn't do private practice as far as I know. But seeing ANY rheumatologist would be better than she has at present.
Hi SheffieldJane and PMRpro, thank you both for your prompt reply. I'm not sure what the exact dose of Pred she's on at the moment but I guess it's 10mg. I can't blame the GPs entirely because she's absolutely terrified of the side effects and often tries to reduce the dose on her own (she owns the Kate Gilbert's book and tries to follow the advice there). The result as you can expect is the flare ups. Recently she's had episodes of cardiac arrhythmia and is very close to developing Diabetes 2, so that on top of other side effects makes her reluctant to go to the doctors in case they increase her dose drastically. So it's very hard for us to persuade her to stay on the right dose ...at the same time we can understand her point when she starts getting heart and blood issues... She's now convinced that her hips pain is down to rheumatic arthritis and that more steroids won't help anyway. That's why I'm insisting on a specialist who maybe will come up with more exams and a complete plan for her case. Thanks again.
Has she been investigated for the arrythmia? I have atrial fibrillation which was almost certainly caused by the underlying autoimmune disorder that causes the PMR symptoms. Not the pred - though I doubt she'd believe me would she?
Can you please try and convince your mother in law to do low carb eating and it will help keep the diabeties at bay x check online it's so easy to do x but it had to be a lifestyle change not a short term thing x I have both GCA and pmr so I watch everything I eat as my sugar goes up and down x and I have ben on low carb for years now x good luck and sending love x
To my knowledge she hasn't really had any specific exam/scan apart from blood tests and bone density exam. I'll make a note of all this and make sure to mention to the specialist. She's going to ask for a referral in her next GP consultation in few days time (hallelujah!), even if we don't find any recommendation by then. I really hope she'll be referred to a good consultant...
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