The jurys still out in diagnosis of PMR

Hi all

I saw Dr Khan at WHH Ashford, private wing on 14 Feb. He was on the fence over whether I have PMR or my OA and Stenosis of lumbar spine causes my pain in back and pelvis. After taking letter from Dr Campbell, I saw privately on 30 Jan. who gave me 7 days trial on 15 mg Pred. and said if it made dramatic changes he would diagnose me with PMR. Dr Khan prescribed 15mg pred for 2 weeks, then tapering by 2.5mg til I get of 0 in 12 weeks. I had normal ESR and CRP. Unfortunately, taking the 15mg had made me hyper manic, not being able to sleep and racing thoughts, which is what I can experience with the Bipolar II, but generally, I only get it for 2 days. This went on for longer than the week I was on Pred.

I decided not to take the Pred prescribed by Dr Khan, as I was concerned about the hypermania and didn't see the point of being on the drug for 12 weeks only just to come off it, and be back to square one. Also, no definitive diagnosis of PMR.

Dr Khan said he would write to my GP and suggest I could get 2nd NHS opinion for other rheumatologist. Strangely, the appointments people for North Kent called me yesterday, so I asked for an appointment with Dr Denise De Lord, who was suggested by one of the people on this site, so I have an appointment with her for 30 April in Margate. I have got pain in my lumbar area and pelvis back, but could be OA and stenosis. Anyway, I will see what she says. But if the Pred affects my bipolar negatively, it is a difficult choice. Wondered if anyone else had bi polar II and been put on Pred. And just any other advice, please. Thanks.

[SheffieldJane]

Gosh what a dilemma! If it is PMR then the effect of Prednisalone is profound relief and yes at first it made me sleepless, hyper and a bit high - it seemed to concern my GP more than anything. I had, had low level depression for longer than I care to mention. This lifted almost immediately, so part of the high was the sheer relief from pain, stiffness and low mood. My GP prescribed Atenolol for slightly raised blood pressure and perhaps coincidentally the hyper effect settled down. I understand that with a bipolar diagnosis it maybe more extreme for you. I wonder if there is a medicine that could mitigate the hyper effect with you? In my experience it is relatively short lived and the dose for PMR is not massive.

Having said all that, your symptoms are not that typical. My worst pain was in my groin area, but I also had bilateral pain in the shoulders and was unable to lift my arms above my head. Stiffness and pain began to severely restrict my ability to walk, get in and out of bed, the bath, unaided. I also ran a temperature and felt as if I had flu. So your pain may stem from your pre- existing conditions after all.

I do hope your doctors can put their heads together to sort out your suffering. Untreated PMR would be so disabling and we only have Prednisalone . I wonder if your doctors could make a case for Actemra ( a drug that would shorten the period that you are on steroids for but is expensive and not licensed for PMR in the U.K.

I wish you well. Stick with us and let us know what happens. The Pred Test is the clearest way to find out if it is PMR. For me it was like a miracle, I want that for you too.

[Hidden in reply to SheffieldJane]

Thanks. Useful comments and info. Will wait to see dr de lord and see what she thinks.

[PMRpro Ambassador in reply to Hidden]

I think you do need to get your rheumy and your psych together - is there any hope of that at all?

[Hidden in reply to PMRpro]

Not likely, don't see psych routinely as I'm stable most of time. Its hard enough to see one consultant at a time, I told Gp she didn't suggest anything. I am happy to see dr de lord and see what she makes of me. Yes I'm sure the pred would sort out pain from oa and stenosis. Thanks for the imput. I will keep you and all lovelies updated.

[PMRpro Ambassador in reply to Hidden]

Now why am I not surprised at that!! I look forward to how you get on with her - maybe she would speak to a psych on a general basis about managing a bipolar patient on pred...

[PMRpro Ambassador in reply to SheffieldJane]

Except other things also respond to pred - it isn't a 100% accurate diagnostic tool.

[Soraya_PMR]

Good luck with DDL. I look forward to your update....roll on 30th April.

[Hidden]

Thank you. will keep u updated.