Trochanteric bursitis & Polymyalgia help

Bursitis does often accompany PMR and sometimes appears as a result of a flare-up in symptoms. Reducing from 20mg to 15mg is a very big jump - the quidelines state that no more than 10% of the whole dose should be reduced at any one time. However, most of us at that dose can tolerate a reduction of 2.5, so perhaps going back to the 20mg for a few days - it might help the bursitis - and then beginning a gentle reduction to 17.5mg by alternating 20/17.5 for a couple of weeks?

It's a pity that the steroid injection didn't work, when it does it helps tremendously. Does she have any other kind of pain relief? A TENS machine might work and other things to consider would be acupuncture or some gentle massage.

I do hope she gets some relief. I do know just how painful bursitis is.

Thank you for this. Her Dr only gave her 5mg tablets, no 1s & it is a surgery where they prefer telephone consultations rather than actually seeing a patient ! He did however see her for this bursitis week last monday hence ordering the xray and will telephone consult on Friday !! She is trying to stick to 15mg as it was the Drs suggestion she go from 20 to 15 & he saw no connection to the PMR. He didn't even want another blood test.

From reading the forums and advice I think it might be worth her going back to 20mgs or even 25mgs and then on Friday ask the Dr for some 1s so that when the flare up diminishes she can try to reduce but more slowly. He has suggested she take paracetomol.

I live in Dorset she in Worthing but went there last weekend and I do give her gentle massages and will do so when we go back next weekend as this helps. She does have some muscle lotions as I work for a herbal company. Thank you for the advice. I will try and contact the local branch to see if she might chat to them. She doesn't have internet.

Hi, sorry to hear about your mum's problems.

I had trochanteric bursitis symptoms along with mild PMR symptoms for several years and it did eventually disappear after several months of pred when I was eventually diagnosed with PMR when the symptoms went mad overnight. It returned last year along with severe low back pain again, across the sacroiliac joint level, and got steadily worse until I was given cortisone jabs on both sides which helped a lot although it took a second pair of injections a few months later to really improve. Recently I had another attack, just like last year, and have had a whole series of injections in my back muscles and am finally rid of the bursitis as well as the back pain (I hope that isn't preempting things!).

An orthopaedic specialist I met at a scientific congress last year described something called myofascial pain syndrome which fits my experiences very well. It is foci of inflammation at specific spots, mainly in the lower back and shoulders, which can lead to referred pain which often radiates into the thighs, both at the front and back as well as down the sides and being very difficult to tell from trochanteric bursitis. He is of the opinion that it can often be associated with PMR and will be improved during higher doses of pred but may return as the dose goes down.

I've had the low back problems a few times in the past and was able to keep it at bay with osteopathy and massage but they aren't available here at an affordable price. The pain specialist here in Italy has given me injections into the same points the orthopod described and the result has been nothing short of a miracle! Unfortunately - I doubt they are available in the UK!

However - along with Nefret, I feel the 5mg drop was simply far too much even though she may have managed previously. It isn't uncommon for people to find it difficult at this level and we have had a few ladies who were in a similar situation, told by the doctor to do 5mg drops. When they just went a smaller drop at a time it was ok. I doubt paracetamol will help - it has little antiinflammatory effect.

You say only 5mg tablets - are they ordinary white pred tablets? Or is she on the coloured enteric coated version? If she is on ordinary white tablets they can be cut in half and you can buy a cheap pill cutter from any decent chemist. Then she could try alternating doses of 20 one day and 17.5 the next for a couple of weeks which will make the step down much smaller. If you are unhappy about her cutting them it's fine to do 20/15/20/15 and see if a 2.5mg step is possible. If she is in pain with the lower pred dose after 2 weeks and it is getting worse it is the PMR flaring up - if the pain starts to improve it is much more likely to be the body protesting at the lower dose and taking a bit of time to get used to it.

Good luck to you all - she needs to rest whilst reducing and I bet that isn't on is it! You can come and give me a massage too ;-)

Eileen

Thank you for your reply and the suggestions. Rest : my mother !

But seriously I think this is a flare up and she needs to go onto 20mgs again and then get some 2.5s and 1s from her Dr. I'll chat to her tonight. I know the Dr is ringing Friday so she can chat to him then.

I believe she had Fibromyalgia previously as she had lots of tender points on her shoulder with pain and massage helped here.

I am interested in whether people with long term inflammation and probably stress have adrenal / corticosteroid problems to start with. Perhaps when on steroids, which take over this part of the body's response to pain and inflammation, it can be difficult to get back to the body starting to produce it again.

I will hopefully be back with some good news. I know she dislikes taking all the pills. She went from taking one pill for blood pressure to now taking lots and she is a very active Mum. Wish I had her energy.

take care all Jane

Well yes - I sort of assumed that! On the other hand - she does have to let her body have a chance if she wants to carry on!

What I didn't say before (it was getting far too long) was that the top experts are in agreement that the main cause of flares is trying to reduce too far or too fast - if you crawl you do actually get there quicker and with less agony! If you try to go to fast and allow a flare it really does seem the next attempt is harder.

I'm interested in your comment about the fibro - when I was researching what I might have it was actually difficult to tell if it was fibro or PMR that fitted best as many of the pain points are similar. The difference is that PMR responds dramatically to a dose of 15-20mg pred, fibro doesn't. Some of those fibro points also coincide with the myofascial pain syndrome spots.

I think you are right about the possibility of adrenal problems in long term inflammatory disorders and there are some experts who think the same, that in some patients the need for very long term steroids is because there is a need for replacement therapy in some way. Again, the concept of crawling down the dose at lower levels working better would match that, allowing a staged return to work if you like, and there are quite a few doctors who encourage a long rest at 10mg and then again at 5mg. But above that it shouldn't make as much difference as the body produces the equivalent of about 7-10mg pred in the form of cortisol. That concept also fits with the increasing percentage who develop PMR as age increases - about half of all over 80s develop it.

And although I'm a lot younger than your mum I can empathise with the hating taking a shed load of pills. This time last year I took 10mg pred for PMR and nothing else, after an interesting month in hospital I went home with a list of about 8. I've ditched 2 of them but every night I sit down to fill the day pack in the hope of not forgetting something! I can't fill a pack with a week's worth, I haven't found one that they'd fit into :-( I'm definitely not amused and it makes me feel ancient and decrepit. I used to sit and cry as I sorted them out. I have got beyond that as I start to feel better - I chucked the crutches away about Christmas after 9 months :-) but there is still some room for improvement!

Eileen

Thank you Eileen, it gives me an ideah of the ups and downs of this condition.

I have suggested mum chats to dr tomorrow and perhaps gets some lower dose tablets and go back to 20 until things improve and try to drop more slowly.

I am sure if very much younger people were affected, then much more resesrch would be happening.

So many physical changes occur as one ages such as hormones, immune system, inflammatory pain

etc and perhaps these types of conditions take advantage. Hopefully research will lead to a better treatment option.

Take care. Jane

"I am sure if very much younger people were affected, then much more resesrch would be happening."

We say this again and again! And we aren't helped by the so-called experts who insist - as did someone claiming to be a rheumatologist on this forum just last week - that only over 65s develop PMR! I am amongst a not insignificant number of women (in particular) who developed this blasted disease in our early 50s.

If more younger people were diagnosed with it it WOULD be taken more seriously because it would affect the work force more - darn it, if it were men who were more likely to get it it would be taken more seriously! Under the current plans to increase the retirement age there will be a lot more people in the work force who are forced to retire early as a result. Or who will be forced onto invalidity (if they can persuade the committee they can't do a day's work successfully). But if you are already retired - who cares?

One of the support groups is run by a lady living in Worthing (didn't she mention it earlier in the thread?) and I'm sure if your mum met others fighting with this she would possibly learn the importance of the acceptance part - that isn't giving in, it is the learning to work around it to allow a decent quality of life which is a very different thing. So we have to take pred? So we have to adapt? There's more than one way to skin a cat and Nefret could preach a sermon on that I'm sure.

And maybe you can benefit too - because it is a new game for you too. You have had a fit and bouncy mum until now - and she's got a puncture. That isn't the end of the world though. There are repair kits available!

look after yourselves - both of you

Eileen

Thank you, Eileen, very much.

With foot pump at the ready, we'll accept the challenge!

Good night Jane