New to this

[PollyF]

I have just been diagnosed with PMR and feeling so depressed with it all at present. From running marathons to being unable to climb stairs, get out of bed in a morning etc. My doctor prescribe 3 pills in a morning but they didn't kick in until day 4 and hardly slept because it all flared up again through the night. I was on holiday unable to visit the doctors so took 2 pills morning and night and felt alot better. My doctor said that was a high dosage but reading some comments about dosage mine was very low. I am at present having more test because the doctor thinks if I have PMR they should have eased the pain faster but everyones body reacts differently.

[Rose54]

Hi PollyF

Welcome to the forum and sorry you have had reason to find us.

You don't say what dose of Prednisone you where given its normal 15 mg and often within hours people find relief from symptoms .Blood test don't confirm PMR only give indication of inflammation most go by reduction of symptoms when given Preds .

I think you are just going to have to wait for results from other tests let us know how you get on

Best Wishes

Rose

[PollyF in reply to Rose54]

Thanks for your reply, 15mg was my dosage but 10 night and day helped. Have appointment at doctors on Tuesday with results of further tests.

[PollyF in reply to Rose54]

My doctor has up the dosage of Prednisone today , 3 in the morning and 2 at night reducing to 2-2 when the pain settles.

[SheffieldJane]

I'm sorry that you are feeling depressed at present. This is a huge adjustment for a fit active person like you. There are a number of people on here who have always driven themselves, cared for others, achieved career heights and suddenly the body says enough!

At the risk of annoying you, I have noticed a quiet wisdom in all this, since my diagnosis in March. More reflection and different priorities. A simpler life really. An appreciation of the little things. A good day being like the sun coming out from behind a cloud. My depression lifted when I got a diagnosis, I had been feeling pretty bad for a long time and suddenly it didn't feel like my fault. So rest and cherish yourself, get really clued up on this website. This is your most challenging marathon yet. Best wishes PollyF. You are not alone here.

[HeronNS in reply to SheffieldJane]

Sheffieldjane, you are so right. Hadn't thought about it before, but, yes, throughout my undiagnosed year I did blame myself for not "doing" enough to make myself well again. Maybe I'm still like that. Should stop beating myself up when following my instincts to goof off for a day! Thank you. 😏

[Celtic PMRGCAuk volunteer]

Polly, welcome to the forum you probably wish you never had to join, but it's such a friendly group of people on here, always ready to help from their experience, so I know you will soon feel at home and not so alone with your diagnosis.

Unfortunately, PMR has no respect as to who it visits, and many people have gone from being super-fit, with some running marathons like you, to succumbing to PMR.

Although 15mg is the usual starting dose for a diagnosis of PMR, sometimes a slightly higher dose is needed, as you have now discovered. Also, some people can take longer to respond to the initial starting dose - as you say, our bodies are all different and will often respond differently.

It's reassuring to hear that your GP is organising further tests - probably tests to rule out other diagnoses as there is no one test that confirms PMR so it is usually a diagnosis of exclusion. Blood tests for inflammation (ESR and CRP) can be raised in the case of PMR but not always - 1 in 5 never present with raised markers. But a good response to the usual recommended starting dose is generally taken as confirmation of diagnosis.

I do hope you continue to improve, and will soon have a definitive diagnosis - meanwhile give yourself plenty of TLC to give the steroids the best chance of getting the inflammation under control and keeping it there if this is, in fact, PMR. Do keep in touch and let us know how you get on. If PMR is confirmed, we can then point you in the direction of an excellent book and a list of support groups that meet up across the country.

[PollyF in reply to Celtic]

PMR has been confirmed at the doctors today. My further bloods showed a reduction in inflammation but put on a higher dose till the pain in under control.

[PMRpro Ambassador]

Show your GP this paper:

rcpe.ac.uk/sites/default/fi...

and the most recent recommendations for management of PMR

rheumatology.org/Portals/0/...

where up to 20mg is recommended in both cases, and in the second up to 25mg as a starting dose (but not above 30mg, Recommendation 3).

Don't consider 15mg very low - the people who are on doses above 40mg have GCA not just PMR and the very high doses are to avoid the risk of loss of sight.

You also must rest appropriately - your muscle are still intolerant of exercise - just because the pred makes you feel better doesn't mean you are back to normal.

[PollyF in reply to PMRpro]

Thanks for all the information which I have printed out. Taking 2 morning and night is making it more manageable even though the doctor advised me to stop taking it altogether until the results of more bloods taken. Hopefully will know more on Tuesday.

[PMRpro Ambassador in reply to PollyF]

You might find that 15 in the morning and 5 in the evening might work better - a decent dose to combat the morning aches and pains and then a top-up for overnight. The antiinflammatory effect of pred lasts 12-36 hours, depending on the person - from what you said it sounds as if you are a less than 18 hour person and the split dose may be better. It is doctors in the US who were more likely to do it but there are quite a few patients on the forums who do it now.

[BloomingtonIndiana]

Thanks to Pmrpro for the technical links. It took 60 days to get my first appointment with a rheumatologist and I find these technical links helpful in understanding the issues.

I was also in fit condition when PMR raised its ugly head. Before the first appointment with my GP, I remember the pain. I won't go into details. I am also struggling with the exercise issue. Go to the gym, free weights, Cybex machines, run a dozen laps and watch out. This is a fraction of what I used to do. Ten months on prednisone and I'm seeing improvement. At least I can move around, but the incredible fatigue is difficult to accept.