I was diagnosed in October 2021 with PMR. I followed the doctors ‘normal’ reduction plan at first. I was able to get down to 5 mg with reasonable ease although I was never 100% free from some pain and stiffness but didn’t affect my qol . I then found this site and started to follow advice and slowed down reduction. At the same time I started to get problems with my legs from knee down. I have seen gps a few times about this and been referred to physios. Have seen 4 different ones who all have different suggestions but no one suggesting it could be PMR flare. I have followed their exercise suggestions and I swim a couple of times a week. Added problem is that I have needed to do more walking than I would have chosen taking husband to many hospital appts and walking long distances from car parks.
I had an appt to meet with the practise pharmacist for a review last week. He has been very useful in the past referring me for Dexa scan which showed I didn’t need the Alendronic acid I hated taking. I explained I had tried to continue tapering and was down to 1.5 Pred but was not prepared to reduce further whilst I still have problems with my legs that I don’t feel has been properly diagnosed. He then said that anyone on Pred for over 2 years should be referred to a rheumatologist ( first I’d heard of that and that bloods should be checked annually). So he is able to make referral. I asked if I could have some 5 mg tabs to see if I treated as flare it made a difference. He gave me one off prescription of 5mg for one week. I’ve just taken third one and am still waiting to see if it helps. I have this feeling they won’t and I’m hoping they don’t send my adrenals back to sleep.
My question is this, Will rheumatologist just send me away saying it’s not PMR or will they investigate other causes?
What should I expect. Goodness knows how long it will be before I get appt though.
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MrsPractical
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Who knows - depends who you see and you may even get the "fibromyalgia" chestnut and assured you never had PMR despite them never having seen you before.
I suppose it depends on the GP - if they are confident of the diagnosis and it behaves as expected they are probably encouraged NOT to refer but it does say in most guidelines that anything out of the norm should be referred - age, atypical symptoms, not the speedy response to 20mg pred, any sign of GCA always referred. Blood tests every year are a token monitoring of pred - in PMR they should be checked at least 6 monthly and preferably 3 monthly and if they are being really good, after every taper before continuing with the next to be sure the new dose hasn't changed anything.
Pains on knee caps and unusual sensation below knees. Difficulty walking. Sometimes shooting pains down legs. I think it could all stem from my back which I have had difficulty with from time to time but had been able to keep under control with exercise and stretches. Think it could be nerve related. One physio thought it’s referred pain from hip arthritis. I do get odd pains in hips. Shoulder girdle which was very stiff and painful at start of PMR journey has benn totally trouble free for some time and I have regained all the strength I had lost. That’s why I think PMR could be in remission but something else is cause. I just want to know so that I know the best way I can manage it.
I was going to wonder if it was shin splints because a few people have had that with PMR. And patellofemoral pain syndrome has the same causes to account for the knee pain. I know you won't be running but I'm pretty sure that PMR and the associated back problems so many of us have cause us to walk "wrong" and put strain on the knees and shins.
Quite why it is beyond them to do an x-ray rather than postulate "hip arthritis" as a catch-all for hip pain beats me! I know my hip and knee pain isn't osteoarthritis because they LOOK here! But tight muscles can cause excruciating pain ...
Thanks PMR pro. Yes, patella femoral pain was suggested by two physios. I was tending to stand with my right leg slightly bent and when lying down my foot was turning in. I’ve stopped that through the exercises. Physio that said it’s from my hips said they don’t X-ray these days for hips but just go on symptoms. He did try to turn my hips in all directions and there was one way that wouldn’t go. I manage to cope by icing my knees when they are really painful which eases things a bit. Maybe I should walk with sticks because they do make it easier. I do walk with walking poles but they aren’t practical when visiting hospitals and walking around shopping centres etc. I do have some food deliveries though. I think walking with sticks can tend to make you lean forward rather than keep your back upright.
Well I’ll keep you informed about Rheumatica appt but could be a long time!
My physio kept on at me to use them but I never did. I find elbow crutches far more comfortable than walking stick which can really mess up your walking but the other better alternative is a rollator which encourages decent walking position but they are a bit bulky - advantage is you always have a seat and they are great for the shopping!
It's these sort of things that make me reluctant to come back to the UK - there isn't a lot I need that the UK does better than here.
I know exactly what you are saying. I have rollator in the loft from my mum but pride prevents me from getting it out. That would be admitting defeat and as you say these things aren’t very practical in lots of situations. I’m sure the most help would be knowing what the cause is. If not PMR I can continue to reduce Pred. I think my adrenals are just about up to scratch now having had a bit of a rocky time with them
I was in such a state last autumn that I bought one - I couldn't comfortably carry even a litre of milk from the village!! Then my wonder rheumy went where the Pain Clinic wouldn't and did a steroid injection into the SI joint and it is still improving after a few months - the difference is amazing.
I think it is a case of horses for courses and using whichever helps. My physio disapproves of crutches - but if I want to use the bus or there may be stairs they make such a difference and I can do things I'd probably simply avoid otherwise. I really ought to try the rollator to walk to the big supermarket and shop! It would be a pain on our buses but ideal on the trains, especially since most of the stations are a stiff walk from the village centres,
That sounds good. Your health treatment access sounds far better than ours although I have to say that the nhs has been brilliant treating my husband for acute myeloid leukaemia, squamous cell carcinoma on his head and enlarged prostate, with catheter. In fact they have an outreach service from haematology who come home to take blood and to give him his chemo injections each month. Getting to radiotherapy every week day for 4 weeks for his head has been a bit of a trial. But all going well on that front. I would probably chase more about my own condition if I wasn’t so occupied as his carer. Good luck and fingers crossed steroid injection has done the trick for you. Ever grateful for your imput.
When OH had 8 weeks of daily r/t some years ago, we took our campervan and the car down to a campsite not far from the clinic and commuted from there! It was an hour each way from here and would have taken half the day for him, albeit free with patient transport, As it was, he had his treatment and we were back at the campsite long before lunch and spent the rest of the day "on holiday". Came home some weekends to do washing and stuff.
Covid interfered more with my medical care than his final illness - but the year when almost everything stopped did really mess things up just as I had got things manageable. And of course it made him far worse because the rehab he needed after a spinal fracture was delayed and he deteriorated in that time.
You sound as though you should have my pen name as well as your own. Fortunately we did not have far to travel but all different times of day and two different settings at the hospital.
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Rheumatologists 
Firstly why do my legs feel like jelly, (now on 11mg) and secondly what is the threshold for referral to a rheumatologist?
Appointment with Rheumatologist
Rheumatologist
Rheumatologist
