GREAT start to the New Year.....

[PamelAnneCT]

Reducing to 20mg of pred as of tomorrow! I'm so excited I can't contain myself.....haven't been down this low since this all started back in June. We've done 3 biggish drops in 3 weeks and they've been a bit uncomfortable about 72 hours in, lasts about 24 hours, but not unbearable and I am bound and determined to keep going. Been feeling very good overall while we've been doing the drops, started physical therapy and that's helping too. Great start to 2016.....yippeeeeee.....

[cjatthesea]

PamelAnneCT, don't know your circumstances but you sound very happy. I've learned on this site to go slowly although I've only been here for about one week. Best of luck to you...or, better yet....may God be with you. Hope 2016 will be a great year for you.

[HeronNS]

PamelAnne, I hope you are not reducing too quickly. How many mg will this drop be? If it is more than 10% of your current dose you might want to rethink, as that is the recommended amount. After 10 mg it is suggested that people drop by no more than 1 mg at a time, over the course of a month, and I know that as people get lower they start to drop by .5 mg and some even stay at that new dose for longer (sometimes much longer) than a month. This is to reduce the possibility of a flare that may lead to a higher total intake of steroids in the end. I can't speak for those who've dropped from high doses, as I never took more than 15 mg, but it seems from what I read on the forums that a lot of those people really have to slow down when they get to around 20. Anyway, glad your reduction has been successful so far, and may it continue to be so. All the best for 2016! ☺

[DorsetLady PMRGCAuk volunteer]

Hi PamelAnne,

Very pleased you are doing so well, but just a word of caution - similar to Heron's really - please don't rush headlong into reducing at all costs.

You say you've done three biggish drops in 3 weeks, that's fine as long as the inflammation is under control, but are you and your doc sure it is? If your latest drop goes okay, then suggest you stay at 20mg for at least a month before you try again.

And then drop by 2.5mg a go until you reach 10mg, then by 1mg.

I don't want to be a killjoy, but having been there, I know how demoralising it can be if you have to increase your Pred because things have got out of control.

Good luck, but take care.

[PamelAnneCT]

Thank you all for your kind words and support. My dr. is doing bloods every two weeks and they look great. My ESR has been at 7 for 2 months now, can't recall my CRP but it is also in 'normal' range, I am in less pain than I've been in since this all started. I am totally in control, if I have a problem with any of the drops he recommends I can say 'no' and believe me I will! I am also consulting with my naturopatth on nudging my adrenals awake as we go thru this process. Fingers crossed things continue on in a positive way.....

[HeronNS in reply to PamelAnneCT]

Best wishes to you. It is quite a journey isn't it? I started at 15 last June. There for a month. Reduced by 1 mg per week (doctor's instructions), stopped at 9 with returning pmr pain. Back to 10 for about three weeks, then started the dead slow reduction. Now aiming for 6.5. Long story to make the point that because my reductions had been so small (1 mg) I did not have any trouble finding the sweet spot where the inflammation was back under control again. That would have been much harder with larger drops. And I too have been doing everything I can to reduce the inflammation through means other than pred so that the pred can be more successfully reduced. I am pretty well resigned to the possibility that I'll be on pred for at least another year, although hopefully at rather a low dose, even though I am doing all those things about diet, exercise including tai chi and yoga, rest, supplements, physiotherapy, low level light therapy, stress avoidance, etc. Pred really is the only thing that works, although I do believe we have in our control a lot of strategies to reduce our reliance upon it. Your doctor did let you know that prednisone does not cure your disease? I assumed I was cured with the vanishing of the pain and the only issue was to safely wean off pred. It was only after finding this and the Patient forums that I learned that only the symptoms are controlled - the underlying disease process is still there, and may be active for a very long time.

BTW my inflammatory markers were low enough that my first doctor didn't think they were significant enough to follow up when I was seeking a diagnosis. Of course I now know that she was incompetent when it came to recognising pmr, but it goes to show that the bloodwork is not necessarily an accurate indicator.

[cjatthesea in reply to PamelAnneCT]

PamelAnneCT, I'm curious about your naturopath and working on the adrenals. Can you let me in on a magic potion ?

[barbara1234]

So happy to find someone else who like me believes in enduring the "uncomfortable" feelings that sometimes occur as long as they're not unbearable. Also, some physical therapy and/or exercise helps a lot too.

Keep it up and Happy New Year!

Barbara