Alternative therapy update: Still doing well with... - PMRGCAuk

PMRGCAuk

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Alternative therapy update

HeronNS profile image
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Still doing well with the low level light therapy. New people who haven't been following my progress so unsure what I'm talking about can go to my profile and find earlier posts. Currently I appear to be doing well at 5 mg. For a few days I wondered if it was really going to be okay, but today I felt better than I have since the first time I was at 10 mg, last August I think. Obviously my body just needed time to adjust to the lower dose, - another credit for dead slow method!

Since finding this and the Patient forum I've been following dead slow tapering, usually with the 4 day start/stop, although with 5 I've done 5 days. Plus I've been able to continue tapering by 1 mg per month by dropping 1/2 mg at the beginning of the taper and slipping down a second 1/2 mg halfway through the taper. By lengthening the taper at the upcoming low levels I will also be slowing things down quite a bit, so hopefully all continues to go well. Going for light therapy once a week, down from twice a week, so guardedly cautious. The hope is that once a fortnight will eventually be enough.

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HeronNS
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Megams profile image
Megams

Great Heron, any little steps gradually easing closer to your goal is wonderful progress. May it long continue - well done :)

Easter blessings

So pleased that you are doing so well with reductions! Light therapy certainly seems to be the way to go for you.  Your success makes me feel more positive.

I  am staying at one day 7.5 mg 2 days 7 mg for the moment as a bit wobbly, probably due to increased physical work load (lambing!) and lack of usual treatments with acupuncture/pressure. 

Saw rheumy nurse this week who gave me prescription for Leflunomide on orders from above despite the fact I don't want it. Apparently this amount of pred is not good enough after 18 months!

HeronNS profile image
HeronNS in reply to

I'm constantly amazed at the doctors who will happily prescribe new medications with their own suite of unpleasant or dangerous side effects just because they are so terrified of prednisone.  

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HeronNS in reply to

You are wise not to continue to taper while you have the extra work load.  Hope you are able to snatch all the rest you can!

Yes, I am quite happy where I am for the moment as long as I can do what is needed. The prescription has been stuffed in the cupboard!

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