I have been told to reduced my dose of prednisolone by 1 meg every two weeks, I started on 15mg and I did feel so much better but every time I go below 10 mg my arm pain and wrist pain returns.
Currently I am on 7 mg and I am once more unable to sleep because of the pain in my arm.
Since I was diagnosed with this in September I have only had one meaningful conversation with a doctor, but every time I make a engage consult appointment I speak to another doctor and each one has a different intake on my condition, I do wish I could speak to the same doctor because they all tell me something different.
I do feel neglected I also have a problem with my foot, and I don't know if I have sprained or broken it or it is the PMR because no one seems to know.
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Cats64
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I was diagnosed with GCA a year ago after being sick for a year with arm pain, dizziness, shortness of breath... Just by chance I had an episode at my rheumatologist and when they took my BP they got a very low reading. They tried my other arm and there was a 20 point difference in my BP. He sent me to my internist and after many tests they found that my subclavian arteries were almost blocked. I had two stents put in and one occluded after a week. Saw my Rheumatologist and when he saw pictures of my before and after subclavian arteries he diagnosed me with GCA. Had a special ultrasound of my head by neurologist and it confirmed GCA. Subclavian arteries supply blood to your arms and head. Hope this helps.
not all but the first person I spoke to was a practice nurse and she knew what was wrong as soon as i told her my symptoms and sent me for a blood test then a doctor called my back and confirmed that I had PMR no explanations other than pred to be taken for a month 15mg the next prescription i requested and the writing on the pack told me to reduce every three weeks, so I have not had much information at all.
They are wrong - it isn't quite as simple as that. The symptoms of PMR can be due to a range of things and the others must be ruled out before you can simply say "PMR". No wonder rheumies are getting edgy and saying we should all see a rheumy at least once.
I'm in agreement with PMRpro regarding ruling out other conditions before PMR can be diagnosed. Once a FIRM diagnosis of PMR is made, a doctor/rheumatologist will prescribe prednisolone (usually between 15mg and 25mg). From then onwards there is normally contact to discuss your symptoms, blood test results and any reduction of steroids.
I know GP appointments are difficult to obtain right now but you shouldn't be left in pain whether it's PMR or anything else as it's impacting on your daily life and seriously interrupting your sleep. Please contact your surgery for an urgent appointment and take with you a copy of PMRpro's link so that you discuss things together. If the appointment is over the phone you can inform him/her of the link and ask him (politely, of course) to take a look. You have every right to ask questions: your body-your health.
Being fobbed off is dereliction of duty of care. Be strong.
Then 10mg is where you need to be for now. Reducing at 1mg every 2 weeks is very fast - and can I assume you have actually ended up going up and down like a yoyo? It is said that reducing faster than 1mg per month is predictive of a flare. Two weeks isn't really long enough to know the new dose is still enough - by the time you feel the flare you don't know where it went wrong.
You aren't reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did. And for the time being that is 10mg. The median time to get to 5mg is just under 18 months - that is the time for half of patients to get to 5mg. You are well ahead of the curve.
This is a good approach that works and you can brandish at a GP, it was written for their benefit!
Where in the UK are you? If your GPs are messing about it might well be helpful to get referred to a rheumy although very few will see you face to face at present and you might wait a very long time.
withernsea the east riding of Yorkshire, I do have a telephone consultation tomorrow, because i am now due to cut down to 6mg and all my pain has returned, the good or bad news about my foot is that I have damaged my Achilles heel, it is not the PMR.
At least I did have a diagnosis of PMR which was indicated in the two blood tests I have already had, but I have not yet had any appointment's with a rheumatologist yet.
I did get a consultation and he has referred me to see a rheumatologist and blood tests with a face to face consultation when I do get my blood results. So that is a result, I did complain and told him I felt I was being neglected.
I have come to the conclusion that we need to manage the PMR ourselves to a certain extent and tell our doctors what levels are OK for us. Doctors in general do want to get us off pred as soon as they can, they don’t have PMR!
I was same so I demanded to be sent to a rhumey as I felt my condition was being ignored and i was left to get on with it on pred in about 15 mins I got a call to come straight into doctors for bloods and was sent for xrays in short it jeered them up a bit lol
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