Should doc be doing more?

[kezzybabes]

Diagnosed with PMR in August 2016 I have reduced from 15mg to 8 mg without too many problems (just get 3 days of shoulder/groin/finger pain for 3 days after each 0.5mg reduction). Taking Alendronic Acid and usual calcium / vitamin D supplements plus various store bought vitamins. However I read on this forum about folk having Dexascans and more blood tests and rheumatologist appointments and wonder why I am not being asked by my doc to come in and be monitored while I am reducing. Do I need to be more assertive or because things are going relatively smoothly (quickly touches wood!) maybe they are letting things continue without monitoring?

Am I needlessly concerned?

[Polywotsit PMRGCAuk team member]

I imagine you might be one of those lucky ones (touch wood!) whose condition follows the 'textbook' course and means that you could be off steroids in two years or even less. My mum was off in 18months but it took me 4 and a half years. You are getting some bone protection and your symptoms are managed. However, you are at your 6 month point now and so it might be a good point at which to mention to your doc that you would be 'interested' to have some blood tests done. The worst that can happen is that the doc asks 'what do you want those for'?

[kezzybabes in reply to Polywotsit]

Thanks for that. I shall make an appointment soon and ask for a blood test.

[PMRpro Ambassador]

It seems to very much depend on the GP - you should really be having your blood sugar and U&Es (urea and electrolytes) checked every few months. Since you are on AA you really need your calcium checking - I do hope it and your vit D were checked before you started taking it as if either of them is low the AA doesn't work! It does say it quite clearly in the data sheet.

Although a lot of rheumies think they should see every PMR patient at least once it isn't entirely practical since it can take months to get an appointment! GCA is a different matter - it's an emergency so should be seen in days, not even weeks. If the patient is "typical", is managed easily with 15mg and is able to reduce steadily there is no reason why the GP shouldn't continue to manage them. So far you fit that bill - hope it continues that way!

If you had had a dexascan and the result had been normal then there would have been no reason to start AA - I took 4 and then discussed it with a different GP who agreed with me it isn't the harmless sweety the manufacturers would like to have you and doctors believe. I waited for my dexascan result, it was fine and I took no more AA, just the calcium and vit D. In the first 4 years of pred my bone density did not change measurably, in the following 3 years it felt very slightly but is still well in normal range. The AA would have merely been an additional source of potential side effects.

[kezzybabes]

Thanks PMRpro - no I never had a dexascan and never had calcium or Vit D checked either (at least I don't think I did unless it was in the same blood test as ESR ). They did an ESR test and a follow up one once I was on pred after a month or so.

[piglette]

As PMRPro says you should have regular blood tests. I have ESR and CRP most often, I just book the blood tests myself, no one has complained. I also have U & E, full blood count, glucose every six months. Then once off or spasmodically B12 and folates, vit D, cholestoral, liver, thyroid, rheumatoid factor. Probably some others too, that I have forgotten. The nurse taking my blood and I normally decide which ones we fancy doing. I am becoming a blood test nerd and have spreadsheets!

I did not actually see my GP for nearly two years just chatted on the phone. I am not sure she knows much about PMR. I have discovered you have to be assertive!

Be careful of any over the counter supplements that they do not interfere with pred. They normally just give you expensive pee and the suppliers an expensive lifestyle.

I don't think I would have taken AA without a Dexascan, which would diagnose if I actually needed something like AA.

[kezzybabes]

I'm taking vitamin B12, magnesium, vit C, cod liver oil.