My first post ......

[Stiffknees]

I’m 61 years young but feel much older due to my current PMR situation. I was diagnosed in August 2019 having taken early retirement at the end of May. I had wonderful plans to spend time in my garden, socialising with friends and family I’d not seen due to work commitments ,time and money.

All was going well until literally one morning I woke up ( always a good sign ) & literally felt that I couldn’t lift my legs off the bed.

After visits to the local surgery, where I was asked what I thought it was !! Followed by blood tests nothing much was forth coming so I went to visit an osteopath who after several treatments suggested PMR.

Having read various articles about PMR I fitted the profile totally and the surgery ( different doctor ) agreed & I was prescribed 15mg of Prednisolone - what a difference to my everyday life !

Now a year later I am really struggling between 7/8 mg to the point I hope the doctor may suggest I revert back up to 10mg as the tiredness, pains in my neck and shoulders but especially my left knee are impacting my daily routine

I no longer plan much, as unsure if I will be on an ok day or horrid day & don’t necessarily want to socialise

I have severe knee pain and wonder if it’s possibly Osteoporosis or Arthritis-Has anyone had similar concerns and what was the outcome ?

Also they say that there is no cause for PMR but I wonder if it could be, for me a change in circumstances and environment and is it just physical or mental?

Thank you for reading this & being there!

[SheffieldJane]

Hello and welcome to the site. The good news is that PMR does usually burn itself out. The bad news is it usually lasts over 2 years averaging out at 5 years +. With good care and pacing your activities it is perfectly possible to live a relatively normal, fulfilling life, keeping active and eating a healthy low carb diet. There are a lot of keen Gardeners on here, you just need to know when to rest. It seems to me that your Prednisalone dose is too low for your requirements and I agree that you should press for 10 mgs. It is pointless under dosing. Many doctors are rightly cautious about steroids but it is early days for you.

Have you been prescribed calcium and vit D supplements? Remind your GP if you haven’t. You should also request a Dexa Scan ( bone density) before agreeing to Alendronic Acid or similar ( it may be unnecessary and has significant side effects).

We are here for you every day and night. However trivial or unusual you think your questions are, someone will have been there and will be happy to advise. We are all ordinary unpaid people who have built up a wealth of knowledge and experience and are more than happy to share it.

PS. It might be worth having your doctors investigate Osteoarthritis in your knees. That’s what my pain and swelling turned out to be, made worse by being more sedentary with PMR. My PMR went into remission after 4 years. I wish I had maintained better fitness.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

I know you’re not new new but this might help - healthunlocked.com/pmrgcauk...

Would agree with your approach to doc, you’ve gone below level you need - so back to ten might be a good idea. Get back on track then reduced 0.5mg a time - monthly if all okay.

Knees could be arthritis- so ask for X-ray to check.

You will get to do what you’d planned - but maybe not as soon as you thought. On the correct dose you need and with a bit of planning you can have a good life even with PMR and Pred.

Many never know what triggered their illness, but all the things you state are factors along with stress!

[Stiffknees in reply to DorsetLady]

Really appreciate your supportive reply & links 👍

[PMRpro Ambassador]

Half of patients take 18 months to get to 5mg - you would be on track for that so you haven't done badly - but that also mean half of patients take longer!

I get PMR-related knee pain but I can't honestly say it is severe - one rheumy 13+ years ago claimed it was OA, an x-ray less than 2 years ago showed no sign of OA! I think you should ask for x-rays just to be sure.

The cause of PMR is an underlying autoimmune disorder where your immune system has become unable to recognise your body as self and so attacks various tissues in error, causing inflammation and pain. There is no single trigger - just the immune system is stressed by many factors throughout life and eventually one straw breaks the camel's back and it goes haywire.

[Stiffknees]

Thank you for your reply & I will request x-ray but not sure under current circumstances how easy it will be to get hospital appointment- will keep in touch & let you know the outcome

[DorsetLady PMRGCAuk volunteer in reply to Stiffknees]

Actually I think it’s easier than you might suppose...so many people are staying away at the moment for obvious reasons, and more online consultations are happening.

[Hidden]

Good morning I am no expert but from what you say I suspect you need to increase the predisilone the pain seems to indicate that the inflammation is increasing arrange a blood test to see what the serum C is? Good luck

[Stiffknees in reply to Hidden]

Thanks for reply - will do 👍

[paulst955]

Hello I have been on pred for over 8 years this illness can last a long while. Up your tablets till the pain goes away, then stay there for a while yoyoing up and down with pred is no fun I know the hard way. Only reduce very very slowly.

[Stiffknees in reply to paulst955]

Appreciate your reply Paul & I feel this is the best course of action - as you say getting the balance right is no fun

[Mayadill]

I was rocking from 20 mg down to12.5, confident I was getting better. At 10 I hit the wall, pain, extreme difficulty moving for most of the day until pred kicked in. I bore with it for 6 wks after talk with my GP. One dark morning I was frightened and crying and I thought no more! Put myself back up to 17.5. told GP who's fine with it. I'm fine with it too. Have hospital appt booked to discuss way ahead.

[PMRpro Ambassador in reply to Mayadill]

Just remember you aren't heading relentlessly to zero - you are looking for the lowest dose that works as well as the starting dose did. You aren't "getting better", the pred has not cured anything, it is managing the inflammation and the symptoms until the underlying autoimmune disorder burns out. 10mg wasn't enough - but 11mg might well have been. I'd suggest just going 1mg at a time from 15mg - and not too fast!

[Cjcc]

Hi I was diagnosed with PMR July 2019 and managed to get down to a low dose of prednisolone after 6 month s. Then none for 3 months, with again a low dose after return of symptoms. (2.5g).

The main change I made to my life ( apart from adjusting to ups and downs of energy levels etc) was to greatly reduce sugar and generally improve my diet. I also walk every day, and garden, with lying down rests in between when needed.

I think it is worth fine tuning your dose of meds to what works for you.

Stay positive, and good luck.

[Stiffknees]

Thank you

[marionofnorwich]

Ha, have just posted almost the same so I am with you although I am down a bit further, currently on 6.5 having reached 4 before getting Covid which seemed to ruffle everything up again. Now have severe knee pain (just to the left of my kneecap) which my doctor says is the joint (waiting for Xrays) but I have a feeling that it is postural or inflammation, or both but as I haven't had knee problems before, I am not sure. Also wondering whether to increase pred dose back up to 10mg but don't really want to embark on tapering again. Tricky and hence asking advice on here