It will be 4yrs this coming January for me with PMR.
Down to 2.5 mg Prednisolone 4 days and 5mg 3 days a week.
iI would just like to say many thanks to those that run this forum and to those who contribute such helpful information and advice. You are all wonderful. 👏xxxx
Just to say I’m at four years exactly! PMR was my Christmas present that year! I’m down ton2mg & holding! Went back to 5mg as so Sick with adrenal issues, but planning a very very slow taper in the new year! Oh, & Merry Christmas!! S x
Sounds promising. I have had 2mgs last 7 weeks. My hands can't make a fist and have become very painful. I only experienced this a few weeks ago and wondered if anyone had the same coming down to a lower dose. The tips of my fingers are tingling and numb. I really don't want to go back to a higher does, I have another 8 weeks to go on 1mg. I am hoping to have ibuprofen at February from my doc rather than being very uncomfortable with bloating on higher dose of preds. Happy festive season. Stay healthy. Ros.
I think you need to ask the GP. Is it both hands? Is it all fingers?
Both hands and wrists swollen. Left is worst with 3 fingers affected with numbness and tingling. Having review in January so I have written everything down so I can remember dates etc.
WHICH fingers? Thumb to middle finger suggests carpal tunnel syndrome which is quite common alongside PMR. The other fingers would suggest ulnar nerve cpmpression.
Thumb to 3rd finger, very painful down back of my hand when lifting a cup or plate. Starting to feel it in my right hand but not as severe. I wondered if it could be carpal tunnel but didn't know this would be connected to having pmr.
Definitely carpal tunnel is likely!!!
Thank you. I guess i can make an appointment sooner after new year. Does it involve any excersie to help it of an op maybe. I will look into it.
Just a tiny bit more pred may be all you need. Wearing a wrist splint at night also can help a lot. The problem is swelling in the carpal tunnel, often due to the PMR now the pred dose is a bit low, and that compresses the nerve causing the symptoms since there is nowhere for the swollen tissue to escape.
Got over PMR 2018 after 5years also took mxt . Diagnosed with carpal tunnel have same symptoms numbness and pain in both hands
I have been offered Methotrexate but it has so many side effects. I was put upto 3mgs of prednisone but still painful. Seeing an occupational therapists so will see how that goes. I hope u get help with ur pain in hands.
If you are managing on under 5mg pred - MTX should not be considered without really extenuating circumstances. The risks of that low a dose of pred ar far less than justify adding another immunosuppressant that isn't guaranteed to get you off pred.
Thank you. I value your reply. I was considering going to doc to ask about 5mgs of pred, I was really quite good on that amount, I am a bit too sore on 3mgs, maybe 5mgs would help the carpal tunnel. I was dancing, walking, shopping, driving. It gave me a more comfortable morning. I really don't fancy the new med. They have to take bloods every second week for 2 months then at once a month for 3 months and there after 3 months. Struggling getting to health centre as back roads are treacherous and its half an hour drive.
Oh and now the Reumy thinks it's inflammatory arthritis. Showing up on bloods and swelling.
Hello Sandyowl and all fellow sufferers! I was diagnosed with PMR Sept 2020, couldn't get out of bed, hosp. blood test, raised ESR and CRP, given pred. 15mg, and felt so much better after a week. Have tapered down 3 times now, getting off the pred. altogether the first time for 2 weeks until a big flare so back up to the 15 mgs. Began tapering again. Got to 1 mg then back up to 6mgs. Am now at 3 mgs. Had terrible back muscle spasm in Oct. but GP thought not PMR but mechanical issues so referred to physio and x-ray and Rheumy who thinks I've got a sacral insufficiency fracture as osteoporotic because of the steroids. Cortisol blood test in the NY and depending on result of that up to 4 mgs pred. indefinitely. Will start zoledronic acid infusions next month for the osteoporosis.
Rheumy thinks I'm one of the 20% who don't come off pred. But I'm still going to try but very very slowly.
Your rheumy doesn't appear to have a clue about the nature of PMR. You taper pred over a period of YEARS not months. You aren't aiming for zero but the lowest effective dose that gives the same relief as the starting dose. PMR is a chronic condition, you start on a dose that is hopefully plenty to control the daily dose of new inflammation, shed in the body in the early morning. Most people need at least 2 years - it is said about a third of patients manage off pred in 2 years. We think a common duration is 4 to 5 years - and you need to taper very slowly and carefully watching for a return of symptoms, a process called titration. When that happens you go back to the last dose that worked well, wait a bit, a few months, before trying again. But the initial dose is never a CURE, pred is a management strategy that must be used properly or it won't work.
Thank you for your very swift reply PMR Pro, I appreciate it. It was the GP who going by NICE guidelines has been tapering my doses over these three years and I went along with it as I was keen to get off meds, as you can imagine. TBH I'm not feeling too great on 3 mg and have been bent double and in a lot of pain with my lower back and possible fracture. It's a confused picture at the mo. so until I have the MRI next week I'm just hanging on and waiting for things to settle down.
I am assured by Prof Sarah Mackie that NICE don't actually issue guidelines - there are articles available from them but they are written by third parties who compile them on the basis of existing literature. Much of that literature bears little resemblance to real life!
Everyone is keen to get off meds - but since PMR is a chronic disorder of indeterminate duration, you will need meds as long as the underlying disease process is active. It isn't a case of "getting off meds" but "finding the right dose for you". In my opinion, probably the most important publication in the realm of management of PMR and GCA for years is this
ard.bmj.com/content/early/2...
which says
"The treatment target of GCA and PMR should be remission; remission is the absence of clinical symptoms and systemic inflammation. This treatment target is similar to that of other T2T recommendations in rheumatology, and frequently serves as an outcome in clinical trials and observational studies of GCA and PMR."
Remission here means remission while on medication - and only incidentally do you meet true remission which is no symptoms without medication. It so happens that in PMR and GCA that is achieved in a lot of patients but it takes much longer than many doctors appreciate.
I too am bent double in the mornings - there is no fracture - so you have my sympathy. The pain starts at 5am I realised this morning, typical of PMR, but we have been assuming that it ISN'T PMR but due to arthrosis in the lower spine. Now I'm not so sure even though it is possible to manage the pain with painkillers - the problem is. the only one the pain clinic doctor is happy for me to use is not as effective as it might be!!!! Other problems means other options aren't suitable - I can't win at present!!!
You've been really helpful. I shall put a wet towel on my head and read that BMJ article. Thank you
Happy Healthy New year.
Happy New Year everyone !!!!!!
HAPPY NEW YEAR ALL + A question
Happy New Year and suitable exercise video information.
