PMR old timer

[Creas]

Been a while. Took a year or so to get a diagnosis. And I had to order pred online and tell my GP I'd done so before I got a referral to the consultant of my choice (my first referral after a v long wait was to an idiot albeit called 'professor' at an Oxford Uni hospital).

Joel David was my second consultation and he was brilliant - actually knew what he was talking about.

But I've been left now with nothing. Any questions I have need to go through my GP. I'm living life as almost normal and playing tennis but still have extreme pain at night, evening and in morning and I don't know if that's usual with PMR. I can't afford to pay to see the good chap and know the GP is not familiar with PMR - so what do I do?

In particular my pain moved downwards and now is mostly glutes and lower back - (and my neck is still v painful) - is that PMR or something else, and how should I find out?

[SheffieldJane]

Hi Creas, it could be your muscles protesting at the exercise. They don’t exactly spring back immediately after these diseases and Pred. A good wise physio will help with appropriate exercise, swimming and Pilates are also good. In my area there is a 6 week wait for someone. It sounds like you are doing well but the night pain sounds odd. Was your Rheumatologist private only? Mine is excellent, NHS and Leeds based.

[Creas in reply to SheffieldJane]

Thank you for your reply. My muscles may well have been protesting - they now don't protest so much despite my increasing my tennis. And not doing any swimming, pilates, physio etc - I know I should but I hate all that stuff unless I'm swimming outdoors in a hot country! My good rheumy was Harley Street but also has a practice in Summertown (North Oxford) and also does NHS work. I was very lucky to get him on the NHS - my GP only arranged it because I told him I'd been ordering Pred from the internet. As well as prescribing pred (and with the very slow taper), he said I had a frozen shoulder and gave me an injection there and then which immediately took all of my pain away.

Felt like a miracle. I'd been in pain for a year and the useless NHS physio people I'd been sent to hadn't even noticed I had a frozen shoulder. One arm which suddenly couldn't move without extreme pain for no apparent reason - what the hell else could it be? Tim Henman's father was a family friend and the minute he saw me, he said I had a frozen shoulder but I didn't think any more of it because I stupidly thought NHS physios would know better.

I wonder if my untreated frozen shoulder was the beginning of my PMR. It was my left shoulder (I'm right handed so carried on playing tennis although couldn't throw the ball up to serve overarm). That was where it all started for me. It then moved to my right shoulder and since then moved down my body (major muscles only, never joints, just the ends of the muscles near the major joints).

[PMRpro Ambassador in reply to Creas]

Shoulder problems are often diagnosed as frozen shoulder but are actually the forerunner of PMR - as it was for you. A steroid injection commonly relieves other pains as well as the shoulder and that results in a diagnosis of PMR.

[SnazzyD]

So the good chap didn’t communicate recommendations to your GP??

Watch that tennis. PMR bodies are not up to normal exercise particularly explosive or repetitive strain. Might be worth stopping for a couple of weeks and see how it affects your pain.

[Creas in reply to SnazzyD]

Yes he did and I just keep getting repeat prescriptions now based on the good chap's recommendations. I'm on a long, slow taper which I control myself. Down to 7mg per day. Sometimes I forget to take them. I went out this morning and played tennis for 2 hours without having taken a pill. Back to playing matches at weekends too which are 3-4 hours and pretty vigorous. Accidentally went a day and a half without pred last week and felt pretty achey so took 5mg in the morning and it calmed back down. Haven't seen a doctor since seeing Joel in April last year...

I don't worry too much about forgetting pills - feel it's a good sign. And I hope it is helping my adrenals kick in, if I give the drug time to fade a bit...?

I should mention that when i first started playing tennis again, I had DOMS two days after playing (this is a couple of months ago) but I don't get that any more so that could well have been just my muscles getting used to exercise again.

[SnazzyD in reply to Creas]

Ok. That wouldn’t suit many as a PMR management plan and isn’t an accepted approach but essentially it is your choice as long as there is a doctor to keep prescribing. If you are able to miss 2 days of Pred and play 2 hours of tennis, your adrenals are doing pretty well. I would still advise taking spare with you in case you have an unexpected crash in cortisol. I have been caught out 2 years after stopping Pred and seeming to cope with everyday life.

[PMRpro Ambassador in reply to SnazzyD]

"If you are able to miss 2 days of Pred and play 2 hours of tennis, your adrenals are doing pretty well."

So is the PMR!!!!!!

[PMRpro Ambassador]

When exactly at night IS the pain, where exactly and what relieves it?

Personally - my answer to the question "what do you want for christmas/birthday?" would be to open a Joel David fund.

And I totally agree with the other two comments about the tennis. And what else are you doing in that "normal life"? Even with pred, you have to do your part.

[Creas in reply to PMRpro]

I might fork out to see Joel again. He does do work on the NHS too but I don't rate my chances of getting a second visit to him on the NHS!

I'm afraid I'm not doing anything apart from tennis and occasional horse riding, walking. If you mean yoga, physio etc. I know I should but all the classes round here seem to require you to pay for a course up front which I'd rather not do. If I have any free money, I might have a massage for my neck which is the worst pain now.

My night pain has gone now. Any morning creakiness tends to vanish once I'm up and moving about.

[PMRpro Ambassador in reply to Creas]

"I'm afraid I'm not doing anything apart from tennis and occasional horse riding, walking"

Er - well that seems quite a lot to me!! And no, I didn't mean you should be doing physio or yoga - you doing your part is actually the pacing and resting to compensate for the stresses some types of exercise put on your body! Exercise is doing something you enjoy - but within the restrictions the illness exerts. It may mean less, it may mean differently - but the PMR tends to be in charge.

[GHDirect]

Hi Creas. Just in case you missed some common advice I got from this forum when taking my steroids. I now take them at 4:00 in the mornings with tea and toast so when I get up around 9:00 its given a few hours to releive muscle pains and I can walk around 90% pain free.

[Creas in reply to GHDirect]

I heard inflammation is worst about then. My night pains have largely gone now though thanks for the tip. I'm taking most of my dose in the morning now after waking (5mg, and another 2mg at bedtime) because I think it keeps me awake if I take it later in the day though that might have something to do with doing reading and crossword puzzles for hours in the middle of the night by torchlight.

[DorsetLady PMRGCAuk volunteer in reply to Creas]

Try an audio book - more relaxing than reading by torchlight, and less stimulating than tackling a crossword. If you find one that’s not too exciting it will definitely send you to sleep… 😏

[AyJayBass]

I have been seeing Joel David privately and agree that he is brilliant. He believes in a VERY slow tapering method, taking 4 months to reduce by 1mg. (I have posted the details of this a couple of times) This has been working for me until I reached 5mg. When I was half way through the next 1mg taper I experienced a minor flare so I have returned to 5mg and I'm staying with that dose until the spring.

[Creas]

I imagine the tapering should be tuned to the duration of the disease...if the disease is going to last 2 years, there's no point trying to taper ambitiously after one year, for example, though how on earth does one know how long it will last in any one person. A conundrum? Perhaps that's part of the point of the long slow taper - and being free to manage it yourself according to your body's reaction.

Now I'm around the 7mg point, I'm conscious that I might be getting pred-withdrawal symptoms rather than the original PMR

I've found it odd the way the pain has changed over time - it moved down my body, latterly being mostly dull ache in glutes - totally different to the more acute pain primarily in my shoulders at the start of it all. I wonder if that's something others experience.

[DorsetLady PMRGCAuk volunteer in reply to Creas]

Now I'm around the 7mg point, I'm conscious that I might be getting pred-withdrawal symptoms rather than the original PMR

At that level, could also be adrenal related … healthunlocked.com/pmrgcauk...

[Creas in reply to DorsetLady]

yes, I thought that too. Found it comforting that I was able to go a couple of days without pred without a too severe reaction: just getting rather achey towards the end of the second day. Not sure how long a reaction would take to kick in if my adrenals were not kicking in...? I feel they've had quite a rest and should be on good form by now 😀 and ready to go!

[DorsetLady PMRGCAuk volunteer in reply to Creas]

I feel they've had quite a rest and should be on good form by now 😀 and ready to go!

Yes they have had a nice rest, but sometimes that means they are sluggish to get bad to work… it’s not like flicking a switch- and wham! They need nudging along gently…

[Bedwell in reply to Creas]

Yes I find the pain is now lower than the initial shoulder agony before taking pred.. 15 mgs 3 years ago. It’s the glutes… ache and then ouch! Twinges. !! So interesting that Joel David suggests 4 months to reduce by 1 . Always encouraging. As I’ve said before.. patience is not my middle name!!!!!

Onwards!!!!!

[Creas in reply to Bedwell]

Such a poorly acknowledged illness, PMR - it's lovely to have people to compare notes with. Really interesting that you too have the glute thing (though sorry!); mine is better now than it was a few months back. It really does seem to be burning itself out gradually 🤞