Seeing consultant this afternoon for CT scan results

[PMRMiltonkeynes]

If it is PMR what questions should I be asking please? Seeing the consultant at 2pm and my GP at 4.10pm.

Thank you all

[PMRpro Ambassador]

I think your response to pred suggests it probably is PMR doesn't it? I doubt you'll get a lot of time for questions - I didn't, but then, he didn't think it was PMR and sent me away to find a doctor where I was moving to some months later (in fact, the rheumy here thinks it is PMR/GCA but I never see him, my GP does everything under discussion with me).

About the only thing you need to know from the consultant about PMR is whether they are going to manage you or whether having made the diagnosis they leave that to your GP. They may be a team that has very fixed ideas about reducing and so on and want to keep close tabs on you or they may just say "See you in 6 months" and your GP will provide the prescriptions and blood tests where required. They may tell you their version of PMR: "It lasts a couple of years and you'll feel fine once you are on pred" is a common version. If you are lucky and no, not necessarily!

[PMRMiltonkeynes in reply to PMRpro]

Hi there

Thanks for your quick answer! Very helpful. Everything is pointing to PMR at this moment in time.

So PMR should only last 2 years?

Sue

[PMRpro Ambassador in reply to PMRMiltonkeynes]

According to a lot of doctors, yes. According to many patients, no. One review paper suggested that about a quarter are able to get off pred in up to 2 years but then are at a higher risk of a relapse at some later point. About half take up to between 4 and 6 years and the rest need much longer, some even needing a low dose for life though that is a small minority. The standard German rheumatology textbook says 5 years is a reasonable estimate - and that really fits quite well with what we see on the forums I think. But for some reason there is this belief among many UK/USA doctors, specialists and GPs alike, that it only lasts a couple of years.

If only - and I speak as someone who has had the symptoms for well over 10 years now! Still being on 4mg of pred is not for lack of trying to reduce.

[PMRMiltonkeynes in reply to PMRpro]

Thank you very much for this very useful information Sue

[DorsetLady PMRGCAuk volunteer]

Would agree with PMRPro, again, about the 5 years theory. Had undiagnosed GCA/PMR for about 18 months, and diagnosed for 3.5 years - have just reached 3mg but I have a sneaky feeling (don't say it too loud) that it may have gone away!

However, I am going to continue my slow decrease of Pred and keep my fingers crossed. Not taking anything for granted.

Hope you get some good advice from consultant and GP.

[PMRMiltonkeynes in reply to DorsetLady]

Thank you DorsetLady Hoping your PMR HAS gone away for you!! GP looking after me thank you!

[piglette]

If it is PMR it is a good idea to take vit D and calcium supplement which doctors seem to forget quite often it seems. Also you should have a Dexascan to check your bone density. It is usually quite a long waiting list, so if you have time to mention it.

[PMRMiltonkeynes in reply to piglette]

Hi Piglette

I have osteoperosis so already have bone issues I am afraid. One of the reasons I believe to reduce steroids as soon as possible. Sue

[piglette in reply to PMRMiltonkeynes]

Hi Sue, I hope your appointments went well. Did they suggest you take something such as Alendronic Acid for the osteoporosis? Don't think about reducing the steroids as soon as possible, you are taking them to keep the PMR inflammation under control so you need to take it slowly or the PMR will turn round and bite and you may find that you are having to increase the dose which will slow you down. Also you will get unecessary pain. The trouble with PMR is it is in control and we mere mortals have to give into it!

[HeronNS]

I second Piglette's comment. I want to add - I didn't know until a couple of weeks ago that I should not be taking a calcium supplement at the same time as pred as the two actively interfere with one another. Make sure you leave at least a couple of hours either side of your pred before taking calcium I read that calcium hydroxyapatite might be better absorbed by people on prednisone than other forms, and of the other forms, calcium citrate is the best. Vitamin D3 is the form of D you want, and at least 2000 IU per day, although quite a bit more is safe. Leafy green vegetables are among the best sources of calcium, and don't rely too heavily on dairy for your calcium. Ask for your blood level of Vitamin D to be tested, and I think there may be a test for calcium as well. I didn't and I now have a diagnosis of osteoporosis.

[PMRMiltonkeynes]

Hello there Yes I had read on here about leaving 2 hours before taking calcium thank you More blood tests this week and a follow up with my GP next week. Sue