Hi everyone on this forum, need some advice I'm very confused, I was diagnosed with PMR September 2013, by my GP and I've found this group very helpful, as like many I've never heard of it before.
I've been on a slow taper after a flare last summer, and now down to 2mg and in a lot of pain in neck, shoulders, upper arms and wrists, I'm having a short synatchen test soon and have to take the hydrocortisone tablets for a week before the test
My GP is now saying that I've not got Polymyalgia now, and I must just use naproxen or zapain as my inflamitory levels are low! It's the same GP who diagnosed me and I have the same symptoms, I've also lost a lot of weight unintentionally and I'm having various tests for that, but that's probably not connected
When she first diagnosed me she said I would be taking steroids for 2 years and maybe for the rest of my life
I would welcome your thoughts on this
Thank you in advance
Written by
kate1978
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In the meantime, before you have to take that Hydrocortisone, up your pred to 5mg for a couple of days and see if you get some relief.........mind if it was me, which it not, I would try 10mg for a couple of day.
On what grounds does she now say it ISN'T PMR? It requires a median duration of management with pred of 5.9 years - that is the time for half of patients to get off pred. You still have PMR but the inflammatory levels are lagging behind the flare.
Not when I'm on right dose of pred. Was on 5.5mg but had to go up to 7 as hit me in back after the gym. Now on 6.5 and hope to be back on 5.5 soonish. I'm really sensitive alas. Gym closed anyway so now doing a short walk daily as no-one around in village and fabulous spring weather. Keep safe in lockdown everyone.
Very similar to me. I will write later wake up so so so achy. My rheumatologist said you’ve not got polymyalgia now after eight years. Referred me to an endocrinologist waiting for an appointment. I did have the test. And they said it’s very low. I don’t know whether to take pred? How much? I’ve just taken 7 mg or get the hydrocortisone. I’m just so tired. Wishing you well. Thank you so much for everyone to take the time to leave a message it is such a help words can’t explain reading someone with a similar symptoms are such a comfort even though on site. Happy Mother’s Day to everyone. Sorry if message is a bit garbled I use the dictating thing to save my arm on my shoulder. God bless you all.
there is a link to the original paper at the bottom of the article. They found that 40% of patients were still on a low dose of pred after 10 years. Which I think indicates that there are several versions of PMR - it isn't a one size fits all.
I have had it for 15+ years - 10 of them on pred and I struggle to get below 10mg. My rheumy is a world name in the field - and he doesn't argue about dose.
He looks about 13!! Likes practising his (very good) English which makes for a comfortable life - not that I can't cope in German (which is the local language).
I've just read the link you sent me, thank you, I have got the cataracts also I took AA for 5 years and stopped, although she wanted me to stay on them, got some K2 vitamins instead
Your story is very similar to mine, I was diagnosed with pmr 7 years ago and like many of us had never heard of it, my first visit to a rheumatologist was useless he just said I must stop taking steroids or it would kill me, I would either have a heart attack or a stroke, now I'm on hydrocortisone tablets and should be having an appointment soon for an endoscopy and ultrasound, I've lost a lot of weight, despite eating well
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