Hi I am a 62yr old female diagnosed with pmr 4yrs ago , how this condition has altered my life is an understatement,having been taking pred for a few years my gp referred me to a rheumatologist last may as the lower dose of pred was not working and I had been up and down with the dosage for a fair time even managing to come off it which lasted all of 3weeks before had to start again , the rheumy said I had to get off pred and put me on methotrexate which has not worked at all since I began taking it last may saw the rheumy last week he told me to stop the methotrexate and to now go back on pred and can now be under the care of my gp again pleased about that as rheumy wasn’t exactly blessed with a caring manner ! I live in hopes that one day pmr will go away .
Back to pred: Hi I am a 62yr old female diagnosed... - PMRGCAuk
Back to pred
Hopefully they will find a cure soon and we can all stop living in pain. Hang in there!
The average time for PMR to last is 5.9 years. So with better management you could be doing fine with Pred alone. What dose are you going to re-start Pred at?
The key thing this time, is once your symptoms settle you should taper down very gradually using one of the slow taper programmes that are recommended on the PMRGCAUK Charity Website. Hopefully you will be successful in keeping the inflammation and pain under control until the disease burns itself out. Your Rheumatologist doesn’t sound much of a loss.
Thank you do hope so.
VERY gradually... I use the slow tapper method and 1/2 mg is sometimes too much of a taper, I have to lower it to 1/4 mg. See what works for you.
Wow, 4 years is a long time, huh? You must be well fed up. I hope you find some relief being back on Pred... Best of luck.
Melissa 64
PMR & GCA diagnosed 11/2017
Started 40mg, up to 60mg, then 80mg - and now down to 13.5
Oh visibly it's ghastly isn't it. You are not alone darling xxxx
Thank you although I wouldn’t wish PMR on anyone it’s nice to know I’m not alone
Vis, it is a pig of an illness xxxxx
Hello Visby😊
Sorry the meds aren’t working!!
I’ve had an undiagnosed condition like PMR since 11/14. My question is, can you have PMR and NOT have any swelling?? I have all symptoms except swelling. ** How are diabetes treated since prednisone raises blood sugar so much?? Thank you, and best to you!!
Swelling?? I have PMR and never heard of swelling. Can you give a bit more information please Floyd?
Like DC says swelling is not part of the PMR picture. Bilateral pain in the upper body particularly, like shoulders and arms, a positive response to Prednisalone are diagnostic indicators. Diabetes type 2, is not inevitable and can be treated effectively with diet. If you think you have it, you need to seek diagnosis and treatment. Unchecked inflammation can have consequences.
Swelling isn't normally regarded as part of PMR. It possibly accompanies PMR in the form of RS3PE syndrome
gmjournal.co.uk/rs3pe-syndrome
If you haven't got that - PMR wouldn't necessarily show any swelling.
I've had swelling especially in ankles but it seems to be going away since I've discovered I have a histamine intolerance (HIT) and cut out foods with high histamine. From my research it seems HIT often goes along with AI issues but is rarely diagnosed as few people have heard of it! I will update this forum soon, just want to see how/if my bloods show reduced inflammation levels next time they're measured at the end of Feb. Must say I feel fantastic for the first time in 7 years!
Can’t say swelling is part of pmr don’t really know about how the diabetes thing works sorry not much help my best to you
I can only be kind about the rheumy and wonder if he possibly thought you had an inflammatory arthritis. mtx alone does NOT work for "just" PMR.
But 4 years is early days, relatively speaking at least! PMR has an average duration of just under 6 years.
The rheumy said must get off pred as it’s so bad long term but both drugs are pretty toxic at least you can get relief from the pain with pred so will take my chances again .
I know from my own experience that lowering the pred can be very unpredictable,that word really sums it up !!lam sorry that having managed to come off completely you find the PMR is back.lt is hard to explain to others how PMR affects us,my GP wants me off the pred but does not seem to understand that lowering too much can cause a flare up,then you end up having to increase the dose even higher ,we can only judge for ourselves .l hope that everything will work out well for you before too long.
Snap! I am coming up to 4 years with PMR. Last year, I had 2 hip replacements and was delighted that PMR did not flare after the ops. I was at 2 mg Pred before Christmas, hoping / thinking that PMR had burnt out as few symptoms, and those could have been the age thing. I am 71. Then I had a fall, and family to stay over Christmas, and felt the aches and stiffness of PMR so increased Pred to 5mg. I stayed on this dose over a 3 week holiday in Cuba ( from UK) until a tummy bug which meant I couldn’t keep water down and lost all my meds, resulted in hospital rehydration. I felt the PMR pain and stiffness and took 10mg to control it for a few days. Went back to 5mg on return to UK and now doing DSNS to 4.So, PMR is not finished with me. I was just on the right dose to control my symptoms. Patience is the name of the game.
Yes, life is totally changed in the beginning. But I found new outlets in a choir and artwork. And now have introduced ballroom dance back into my life, and am taking up Thai Chi to strengthen my jelly muscles.
I have never seen a rheumie and my GP trusts me to take the Pred dose I need.
Like you, I look forward to a day of no steroids, but I will not rush it.
Valerie
It certainly all ups and down with PMR so pleased you have got dancing back in your life must make you feel good all the best to you .
Thanks. Rhumba class tonight. V
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