Hi!
I'm new to this site and from what I have read so far it is really informative.
I have recently been diagnosed with PMR & I'm fairly young to have this diagnosis (51). Currently on 15mg, still aches in in my shoulders & my left hip, also uncomfortable to drive & really struggling with fatigue!!!!
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Jump to repliesHi and welcome. There are a few of us who were in our early 50s when symptoms started or diagnosed with PMR and some in their 40s with GCA and PMR. So sadly though the average age is higher, younger people seem to be being dx and the NICE guidelines have now been reset at 40 onwards.
It could be that you need a bit longer for the 15mg to fully work and you are looking for 70% upwards of global improvement. Some people do need a higher dose though and that's why 15 to 25mg is usually the range of dosage that can be used in PMR. If you get to 4 to 6weeks with no big improvement then you need to talk to the Dr. Certainly you don't need to be reducing yet no matter what the Dr tries to convince you. There is an intro to PMR and GCA that will be circulated, usually by dorsetlady that is helpful if you haven't seen it. If you want to know anything else please ask. 🌻
Link on fatigue -
healthunlocked.com/pmrgcauk......
But a bit more info on what you’ve done since diagnosis - start dose? tapered? Amended lifestyle? Might help us to see what’s not going right at the moment
This might help with general info -healthunlocked.com/pmrgcauk...
Hi DorsetLady
Well my whole lifestyle has changed since diagnosis. From running, gym 3/4 times a week to now managing a light 2miles walk. I’m still on 15mg & this hasn’t been reduced. Fortunately, I’ve been able to make an appointment at the hospital & seeing the consultant next week. I’m on a phased return to work (working from home) & working 4hrs which is enough at the moment.
Okay,
So if you’ve been on 15mg since diagnosis (Feb?) - that shouts it’s not enough - or it’s not PMR.
Was there any query over diagnosis or was it clear cut?
Are you walking 2 miles every day? Might be too much - I know from your previously activities it might not seem much - but your muscles are not as resilient as before and need longer to recover. Maybe try 1mile a day, or 2miles every other day for a while and see if that helps.
As I say in my intro to new patients, your underlying illness is still very much alive - so even if the aches and pains are controlled (which at the moment yours aren’t) - you still have to pace yourself.
Your most important thing at the moment is to get the inflammation under control - and the only way to do that is probably more steroids.
Please let us know how you get on with appointment.
PMR was definitely the diagnosis & very clear cut. I was walking 2 miles every other day but I’ve stopped that now. Thanks for your advice & I’ll let you know how I get on with my hospital appointment.
It's very difficult to get a clear dx. Usually it's just based on symptoms and raised inflammatory markers. But lots of things can cause very similar symptoms and raised markers so they try 15mg of pred and if it works it's really a sort of all things considered it's PMR diagnosis. As I said some people require more pred initially and are often seen as "atypical" if they don't get regllief at 15mg (mainly as drs don't know guidelines) or too young (ditto re guidelines)and referred to a Rheumatologist. The Rheumatologist will usually do blood tests and x-rays to eliminate rheumatoid arthritis, lupus and about 6 other vials full of blood (for me anyway). Not many people get a definitive dx of PMR as really it is just a collection of symptoms etc.
I was also 51 (just) when it started but it took 5 years to get a diagnosis!
How long have you been on 15mg? How much of an improvement did it bring?
But judging by your other replies - I suspect you need to try 20mg - the latest guidelines say the lowest effective dose in the range 12-5 - 25mg as some people do need more. Recommendation 3 here:
Hi and welcome to the most informative/knowledgeable page I know! Like yourself I was a runner, fit and healthy although older than you. My starting dose was 20mg for PMR which worked within 2/3 days .... was a miracle! I’d agree that this seems to be the best dose for most to get that inflammation on it’s way. My shoulder was the last thing to ease for me, I had to have a microwave heat pad on most nights. Fatigue is the worst .... but is all part and parcel of the disease. It will all get better as you’ll find out, but lifestyle change is important for now and you really have to be kind to yourself. For me my head said go, my body said no! Keep in touch as so much info from the many on here who have walked the walk x
Hi, am so sorry you have been diagnosed with PMR, but you are in the right place for help and support. I also found driving uncomfortable , quite painful, until my husband adjusted the steering wheel, it made a huge difference, I think you can do this with most cars. Didn’t stop me damaging paintwork while parking, pred can also affect spacial awareness!
AMDRunning, I live in the US (Arizona) and I think we treat PMR a bit differently, or at least my Rheumatologist does. Oddly, my former college roommate was Dx exactly a year before I was. Same Dr started him at 50 mg of Prednisone and me at 40. Both of us were much improved in 24 hours. Neither of us had any inflammatory markers. Both of us reduced quickly until we hit a wall, which was 3 mg for me and half a mg for him. Eventually he weaned off after about three years total. I’m still at 3 and doing well. My point is that if you really do have PMR, one of the best diagnostic markers is that the right dosage of Prednisone or Prednisolone knocks out your symptoms “like a miracle” as many people report. Obviously my doctor hits you with a bigger dose and reduces to “the wall”. Yours probably starts fairly low and goes higher if necessary. Neither method is wrong, but the point is that you want as low a dose as possible that controls your symptoms. I have not experienced fatigue so am still very active. Everyone is different so you have to find your own levels.
I had no raised markers - or at least, it turned out they were raised for me but still within "normal range".
I took 15mg of prednisolone at 10.15am when I picked it up from the pharmacy. Just before 4pm I stood up from the computer, walked downstairs normally, made tea and walked back upstairs with the full mug of tea in my hand. The day before I had stomped down the stairs like a toddler, one step at a time, and crawled back up on hands and knees, putting the mug as high as I could and crawling up to it to repeat the action.
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