Just seen the consultant

[InTheMoors]

I’ve just seen a consultant about my PRM and the difficulty of reducing my steroid dosage. My doctors insisted that I should be on a lower dose despite me saying that I felt unwell when I did this.

I had a blood test just before seeing the consultant and he said my ‘markers’ didn’t look too bad.

The consultant said that my condition indicated that something else was going on. Steroids are a great painkiller and the relatively high dosage might be masking something else. He examined me and said that I has signs of osteoarthritis, but didn’t rule out other things as well. He is contacting my doctors and asking for a full range of bloods and x-rays on my hands, knees and hips.

He also advised on a way of reducing my steroids with the help a painkillers.

If anyone else has this sort of problem it might be worth asking the doctors a few questions along the above lines.

[PMRpro Ambassador]

" Steroids are a great painkiller "

Why do they keep saying this? Yes they are - but ONLY for inflammatory pain. And if they hand out pred for a diagnosis of PMR, they can't tell the patient they should be on less when they need a particular dose for pain relief.

If what you have is PMR you will NOT be able to reduce the dose of pred by adding painkillers, PMR doesn't respond. IF painkillers relieve your pain it almost certainly ISN'T PMR or not JUST PMR.

However - it took me over 4 years to get below 10mg for PMR. Not all PMR is the same, not all patients are the same and we need differing doses. You can't taper to order or a rigid timetable.

I do hope his further investigations answer the questions - but it may not be something different.

[Golden20]

Hi,I can only speak from my own experience. It has taken me 6 years and a few flare ups to reduce my steroid dosage. My rheumatologist would have had me taper much more quickly than my body was comfortable with. I listened to her of course, she is after all the expert. However every one of us is different and no one size fits all. I too have been diagnosed with osteoarthritis, which at 76, it didn’t really surprise me. I can only speak for myself but now that I have been on this journey for a while now. I tend to taper off gradually listening to how my body responds and take it from there. Good luck with your journey, I wish you well.

[InTheMoors in reply to Golden20]

Thanks for the replies. I never saw the doctor, it was all done over the phone! This is the first time anyone has laid hands on me and checked my joints/muscles.

He thinks that there could by two or three things going on at once and has the attitude of 'lets find out what's going on', asking my doctors to arrange a whole load of tests and x-rays.

[PMRpro Ambassador in reply to InTheMoors]

"This is the first time anyone has laid hands on me and checked my joints/muscles."

That is ridiculous and should be stopped - there is no need for it now Covid lockdowns are past,

[Bcol]

Hi once again, think PMRpro has said it all, but just to add it took me four and a bit years to get off Pred so there is no rush. Also, I've been managing OA for around forty odd years and my go to, Co-Codamol, had no impact or effect on the PMR pains/problems at all.

[InTheMoors]

"my go to, Co-Codamol, had no impact or effect on the PMR pains/problems at all."

I have prescription strength Co-codamol and find it very effective. I haven't been using it very much but will use it a bit more in the future.

Got to give the consultant's advice a try, otherwise it was pointless seeing him.

[PMRpro Ambassador in reply to InTheMoors]

That is a major clue that it may well NOT be PMR, If it works, use it but be careful that you don't get constipated which is a big risk with its use. And prevention is better than cure.

[InTheMoors]

"If it works, use it but be careful that you don't get constipated which is a big risk with its use."

That's why I haven't been using it very much!

Looking back i think the doctors could have taken more care. As I mentioned i never saw one. I had routine blood test and got a phone call saying that I had PMR and that they were sending me some Prednisolone. The consultant did seem a bit puzzled/confused by what had happened and where I had ended up.

He's now going to get the doctors to test my blood for everything that could be related to rheumatics and get x-rays for my hands, knees and hips. Very much a 'lets see what's going on attitude' which, with hindsight, should have been done early last year.

I'm really impressed with the consultant and feel that I'm getting somewhere at last.

Edit

I've just looked back at my diaries and in August 2023 I was prescribed Co-codamol for joint pain.

[PMRpro Ambassador in reply to InTheMoors]

He is doing it the way it should be - it is appalling any GP thinks it is acceptable to diagnose a rheumatological condition remotely, a physical exam is essential. One top rheumy says she remembers about half of patients diagnosed by GPs as having PMR, didn't!!! Might as well toss a coin! They also miss a lot of PMR that is ...

[Miserere in reply to PMRpro]

I was diagnosed over the 'phone in 2021 - never been examined. The pred works, though, so I suppose that was confirmation. Now trying to reduce from 7mg to 6.5mg - slowly. Hoping to get down a bit further but have had difficulty at this dosage in the past.

[PMRpro Ambassador in reply to Miserere]

Pred will work for several things, not just PMR. Just as raised ESR and CRP can be raised in other conditions. One is left to feel that it isn't surprising that GPs get a lot of diagnoses wrong in PMR.

[PMRnewbie2017]

So glad you seem to be getting the treatment you deserve. Keep us posted!

[Pixix]

steroids masked my osteoarthritis as it worsened, but the OA was going to worsen as I aged, so the steroids helped…a little! I could still feel it was worsening, & I had steroid injection for the worst of the OA, my hands. Now I’m on a lower dose,& the OA has spread & is causing a lot of trouble especially in the winter. I don’t see the two as connected…in my mind they are separate…& I just happen to have both! Many do, I think!

[CZAE]

Have you had a DEXA scan? This will show you if you have osteoarthritis. I presume you are taking Calcium and possibly the extra weekly calcium tablet like risedronate?

[InTheMoors in reply to CZAE]

"Have you had a DEXA scan? This will show you if you have osteoarthritis. I presume you are taking Calcium and possibly the extra weekly calcium tablet like risedronate?"

I had a bone density scan in July 24 and was told things looked OK when I spoke to the doctor on the telephone in September 24. I'm taking Adcal-D3, Omeprazole and Alendronic Acid.

I'm not too sure what the scan was supposed to show.

The consultant also mentioned a few other things that might be going on such as rheumatoid arthritis.

He seems to be saying start at the beginning and keep an open mind.

Strangely I feel better today than I have done for a while. It might be that there was a bit of stress as I seemed to be getting nowhere with the doctors. I now feel that progress is being made.

[PMRpro Ambassador in reply to CZAE]

A dexascan doesn't show osteoarthritis - it shows osteoporosis by measuring bone density.

[Diver249]

My G P surgery has a notice on its website saying that it won’t order tests and bloods that hospital consultants want doing, because it’s their responsibility to do that and it’s part of their industrial action to pressure the government into funding primary care better. I imagine if GP s order tests the costs come out of their budget. Meanwhile patients are between a rock and a hard place.

[InTheMoors in reply to Diver249]

" Meanwhile patients are between a rock and a hard place. "

True. I've not seen any such notice at my GP's surgery, but wouldn't be surprised as they seem to be cutting back all of the time.

When I was in practice I had a client who spent a lot of time at his French home. The French couldn't believe what we put up with. They would be out on the streets burning something if their health service was anything like ours.