Still trying to work out what's going on!

[InTheMoors]

Briefly, I was diagnosed with PMR last summer and have been on prednisolone every since, gradually reducing my dosage. I saw a rheumatologist (private) in January and he was surprised I was still on a high dosage of prednisolone and queried the original diagnosis of PMR. He suspected something else was going on, quite correctly as it turned out.

After extensive x-rays I have just received the following text from my doctor:

Dear Mr ...........

your knee x-ray shows severe osteoarthritis. You may benefit from steroid injections or an orthopedics assessment for a knee replacement.

So I either have PMR and osteoarthritis or just osteoarthritis. I'm not too impressed with my doctors and don't think I'll get a straight answer from them if I ask. So is there any way of telling what's happening. I suspect not, but I'm asking just in case.

Strangely, my knees are quite painless today and I've just had a session on the x-trainer.

[DorsetLady PMRGCAuk volunteer]

Can you just confirm what symptoms you had which led to your diagnosis - presumably more than knee issues.

As for Rheumy querying high dose some 6 or7 months months later - I think we commented on that in a previous post. If I recall you were still at 10mg , or just below, and seemed to have a lot of difficulty reducing from 15mg… but that it itself doesn’t mean you don’t have PMR… in fact probably points to the fact you do have.

What was your Rheumy’s rationale is saying you don’t have PMR?

Agree you may benefit from a local steroid injection in knee [many have] and do get yourself in the system for a replacement - but many have OA and PMR..

as for your comment 2 weeks ago -

I've been doing really well and today I reduced my daily dose of prednisolone to 8.5 mg. Went to bed last night feeling really good after a pain free day.

Today I drove ten miles to have about 15 x-rays taken, as suggested by my consultant. Now back home and feel wiped out - legs weak and shaky, muscles ache and feel very tired

That may just be adrenals struggling - but also sound very PMR-ish as well.

Why do you think you won’t get a straight answer from doctors?

[InTheMoors in reply to DorsetLady]

Hi DorsetLady

Can you just confirm what symptoms you had which led to your diagnosis - presumably more than knee issues.

General muscle pain/weakness centered around my hips and knees. My physio has mentioned transmitted pain which he sees a lot in people of my age. For example, two weeks ago he said that I wasn’t walking correctly and worked on my feet and lower legs. This relieved a lot of the discomfort on my hips. Basically, the bit that aches may not always be the problem. Strangely enough, I get the most discomfort in my right hip.

What was your Rheumy’s rationale is saying you don’t have PMR?

He was looking at the results of some blood tests that I had just had.

Why do you think you won’t get a straight answer from doctors?

I’ve not been over impressed with the treatment/care that I’ve had. I was never seen by my doctors who just telephoned me to say that I had PMR. The consultant was a little unimpressed by this. He pulled, pushed and twisted my joints about. In addition if I don’t have PRM they are not going to own up to getting it wrong.

I’ve just realized that the steroids I’m taking may mask the worst effects of the osteoarthritis. The consultant did mention this.

It's all so confusing.

[DorsetLady PMRGCAuk volunteer in reply to InTheMoors]

Have to admit. It does sound a bit tenuous- did you have raised inflammation markers at beginning? Guessing so, if PMR diagnosed… what about arm/shoulder pain, fatigue?

As for bloods Rheumy looked at, if they were within normal limits then that would be down to the Pred doing what it should, ie. controlling inflammation. But do agree there is no need now to diagnose patients over phone… Covid measures should be long gone. .. and yes the Pred may well be controlling the inflammation part of OA..

As you say, very confusing. Other than continuing tapering and seeing what happens, sorry I have no magic answer for you.

[InTheMoors in reply to DorsetLady]

Have to admit. It dies sound a bit tenuous- did you have raised inflammation markers at beginning? Guessing so, if PMR diagnosed… what about arm/shoulder pain, fatigue?

I think that the doctor did mention markers. Very little trouble in arms/shoulders. I do get fatigued but the at my age so do many others.

As you say, very confusing. Other than continuing tapering and seeing what happens, sorry I have no magic answer for you.

I just appreciate the feedback and friendliness of everyone here.

[DorsetLady PMRGCAuk volunteer in reply to InTheMoors]

Sorry we can’t give you all the answers -but we can do friendliness.. 😊

[PMRpro Ambassador]

What dose was he complaining about? It took me over 4 years to reliably get below 10mg - though within a year from that I got down to 5mg. And that is common - everyone has a different journey but many doctors don't understand that. Rheumatologists in particular often see patients rarely and don't see the ups and downs between times. To be on 8.5mg after 8 months or so is on the curve or even slightly ahead - the median time to get from 15 to 5mg is about 18 months.

To say you don't have PMR because your bloods markers are OK while on pred is rather silly - what it shows is that you are on enough pred to manage the inflammation. No more, no less.

I saw a rheumy in the very early days of PMR about hand, foot and knee pain. All actually typical of PMR when you study the literature but the lady waggled my knee and announced I has osteoarthritis in the knee, she could "feel it". About 13 years later a doctor here in Italy sent me for a knee x-ray for very similar pain - and there was no sign whatsoever of OA in that knee, there SHOULD be, I mangled it nicely skiing and doctors in Scotland told me I WOULD develop OA as a result. But they also told me I should have a dropped foot given the op that was done to glue it all back together. No-one here expected either! And here they do rely rather more on the tools available for imaging and not a subjective prod ...

I think you are not unreasonable in your assessment of your management this far - is there any way of improving the selection of medics?

[InTheMoors in reply to PMRpro]

What dose was he complaining about?

I was down to 9/10 mg a day after eight months. This was too high according to the doctor.

I think you are not unreasonable in your assessment of your management this far - is there any way of improving the selection of medics?

Difficult to do for a variety of reasons.

I've gone to the same physio for over twenty years and he's always told me that my joints feel fine (while emphasizing that he's not medically trained). I'm sure that he would have noticed any severe joint problems. My main problem are my hips, particularly the right one. He has been working on my lower back and legs and the problem with my hips is slowly improving.

After thinking about things last night I'm going to keep away from the doctors. Every 'solution' seems to bring up two or three new problems. Unless things get worse I'll just concentrate on slowly reducing my prednisolone dosage - currently down to 8.5 mg a day.

[PMRpro Ambassador in reply to InTheMoors]

Sounds a reasonable move!!

[Pippah45]

It might be worth you watching today's episode of Morning Live on BBC1 where Dr Xand has gone into knees and exercises and osteoarthritis. I have problems with my knees - one a ski accident years ago and probably wear and tear in the other one. Exercise is good for them.

[InTheMoors in reply to Pippah45]

Exercise is good for them

Quite agree. I'm in my mini gym most days.

[Hopelessatbest]

I have PMR and, prior to it, severe stage 4/end stage OA in both knees. The higher doses of pred help with overall joint pain though it doesn’t go away. My knee pain was worsened at the outset of PMR but I also had horrendous shoulder and hip pain. I was diagnose for PMR via blood tests and saw the doctor. At the time I could barely move my upper arms.