Maidstone support group

[pmrdec112014]

Hi. Following my first meeting yesterday I took on board what people were saying regarding vitamin d levels and luckily today I was due to see my G.P so he has ordered bloods to be done to check afore mentioned along with tsh and crp. He happily added my steroid tablets onto my repeat prescription and reiterated that any time I wanted a referral to a rheumy he would happily oblige. ( I told him I still trust his judgement implicitly and donot wish to compicate matters). He said the fatigue unfortunately can b a serious problem of which there are no answers other than rest. He was very interested to hear all the details of the group and also the dead slow stop method of reducing steroids. I think I was in there a good half hour!

[PMRpro Ambassador]

That sounds like a GP to hang on to!

[tina-shelley]

Hello pmrdec112014,

Well, imagine that, I use to work for a radio station called KMFM right in the heart of Maidstone, and I used to live in chilham, a little village just outside Canterbury, so I hope my old stamping ground is still looking good.

I think it would be an excellent idea to copy out the dead slow and almost stop reducing method for your dr. I have been using it since I had a flare this time last year when I attempted to reduce from 9-8mgs, just like that, and suffered a flare. I now use the dsas method but instead of reducing by 1mg only reduce by .5mg as 1 mg is still too big a drop for me, you could also mention that some patients only ever reduce by .5mgs as a 1mg drop even using the dsas method is just too much. On Monday I will attempt to reduce from 7-6.5mgs. I was planning to start my reduction on Monday just gone but great! I have the hugest cold sore so have put my reduction back a week. all the best, tina

[Mandmellons]

Blimey! You lucky thing!!!! I get 10 mins if I'm lucky, I have learned more from this forum than my docs.

[Jankie]

I swear by the dead slow method and have always reduced by 1/2 a tablet. Even more crucial at the lower doses. Down to 6mg and now trying 5 1/2mg. This has taken 16 months. I had to stay on 7mg for at least 3 months. So far so good. Fingers crossed.

And fingers crossed for you too !!