Trying to help to newly diagnosed PMR

[Crackers1964]

I was 54 when it first hit from nowhere. I was in absolute agony and nobody got it. I struggled with the idea of PMR at my age and simply couldn’t bear the idea of it.

Steroids just seemed such a big leap and I tried everything high mg slow release ibruprofen, turmeric, heated pads, you name it.

I bought the book that was very informative ( don’t have it to hand but got this forum through it); and eventually had steroid jabs which really helped as ‘one offs’s which I felt ok with. However, one GP pointed out that really I would have a much, much better quality of life if I simply started on a daily dose.

I can truthfully say I was so scared, worried about weight gain, depression, moon face, you name it, BUT, now and of course it may change, I haven’t looked back. I started on around high 20’s mg and tapered VERY slowly with a rheumatologist and GP helping me down now to 4 mg daily. Hope to reduce to 3mg when all the covid situation stabilises.

I now take extra strength Vitamin D from the GP and I also take fish oils and magnesium. I also take aloe Vera juice in the evening.

Importantly I walk around 15,000 steps a day. Separately I have a bad knee but I’m determined to keep fit, so far so good and PMR at bay.

I hope this helps and encourages even one person as that is so important.

[SheffieldJane]

Your journey will be familiar to a lot of us and helpful to the newly diagnosed. Thank you for sharing it.

[jinasc]

You were so lucky, untreated PMR can and does lead, quite often to its big Cousin GCA and that is the last thing anyone wants.

[Suet3942]

Glad you’re doing ok Crackers. I too was very reluctant and scared to take pred but caved in after a few months. My consultant at the time gave me injections as he said they were less invasive but they only gave relief for about a week. So eventually I took pred and here I am 8 years later unable to get below 7mg even though I am on mx as well. Ah well onward and upward.

[Crackers1964 in reply to Suet3942]

Glad you are ok.

[tangocharlie in reply to Suet3942]

Some of us long-timers seem to need more Pred for longer, not the standard pattern of easy taper over a couple of years that many doctors think PMR is. Hope things improve for you, have you been on MTX for long?

[Suet3942 in reply to tangocharlie]

Yes TC. I've been on it about 4 years I did stop it 2 years ago because I thought it wasn't doing anything but had massive flare up. X

[tangocharlie in reply to Suet3942]

Interesting, so it seems MTX does help you then. Then again I am having a massive flare up now, even after 9 years, so it can just happen, or I think in my case I just hadn't had enough Pred to fully control hte inflammation and the dripping tap has now culminated in a flood ...

[Suet3942 in reply to tangocharlie]

What dose are you on now?

[PMRpro Ambassador in reply to Suet3942]

How much lower had you got?

[Suet3942]

Only to 5mg

[PMRpro Ambassador in reply to Suet3942]

Where had you been stuck?

[HeronNS]

Glad you are able to keep walking with a bad knee. Unfortunately my bad knee has put paid to my 10,000 daily steps. I do a lot of exercises, but walking any distance leaves me much worse off the next day, no matter how careful I am. PMR at bay (2 mg pred) but osteoarthritis has turned out to be a whole other beast.

[Crackers1964]

So sorry