Oh well, back to Pred.

[KCRoyals]

My Rheumy who is a smart and helpful guy gave me a Synacthen test whilst I was on 3.5mg. Test was good and he told me to come off *Pred straight away. Did this and for the first few days seemed okay. I was told to expect some aches and pains but they started to get much worse. Now after 3 weeks it has gotten a little intolerable. Heading for CPR/ESR test on Thursday and can guess the outcome. If it is a flare then I'll have words with my Rheumy. keep hoping it will go away, but wished more I'd kept on the 3.5mg.

*I know what you're going to say.

[jinasc]

* How do you know what I am going to say and intrigued to know now if I you were right?

.....................Rheumy for Synacthen Test?

How long did the test last....................

I had a great Rheumy and he and my lovely GP both said...........Endochrinologist for that test. 4 hours, warm room, fell asleep best test I ever had........result..............fully up to speed and although I was down to 2 mg, the Endo bloke said 1mg for three months, last 1mg for three months and then stop and abt problems your medics will refer you back to me..............I had no problems at all.

[SnazzyD]

As I believe it the test says whether the adrenal glands can work, not necessarily whether the whole of the adrenal function system works and efficiently too. My test was fine but I definitely don’t have a fully reliable adrenal function that I can rely on. I was certainly not not to stop immediately. I only have GCA but find withdrawal at these low levels very painful and have sometimes thought I’d finally got PMR too, but it comes good in the end with a taper of 0.5mg over 6-8 weeks.

[PMRpro Ambassador]

I won't say it then - did I before?

What a clown - him, not you!! 1mg can be enough to keep PMR at bay and one lady was on 1mg every 3 days - stopped and in a few weeks ...

[KCRoyals in reply to PMRpro]

Me clown too. With the years I've been on here and the great advice I shoudda known better.

[DorsetLady PMRGCAuk volunteer]

I wouldn’t say he was that smart or helpful if he told you to stop just like that!

No can do, as you found out!

Even at low doses your body is still reliant on the drug- and it notices every taper more that it does on high doses.

Please educate him accordingly! In the nicest possible way of course!

[KCRoyals in reply to DorsetLady]

You're spot on.

[Hidden]

What a shame, you could have just sauntered in, instead of galloping causing you to fall at the last hurdle so to speak! 🍀

[PMRpro Ambassador in reply to Hidden]

At least it wasn't a broken leg ...

[Sandradsn]

Smart and helpful....hmmmm

[marigoldb in reply to Sandradsn]

We never made that meet up did we? Maybe we should think about a local group?

[Sandradsn in reply to marigoldb]

I will email you!

[KCRoyals]

Not sure what the "broken leg's "about!

[PMRpro Ambassador in reply to KCRoyals]

Given the weekend - they shoot horses don't they?

[Mrs-CJ]

My synacthen test was ok too. I was at 2 mgs when it was done (they would not give me the test until I was at 2). The specialist told me to continue reducing and based on her experience with PMR patients she said I shouldn’t be surprised if I could get off the prednisone in about 6 months.

If she had told me to stop right away I would have ignored her advice! My GP knows I have to reduce slowly to be successful. 😊

[KCRoyals in reply to Mrs-CJ]

Thx for that, as I said before I should have known better.

[Jackoh]

Have to disagree - don’t think he is smart or very helpful to you unfortunately.

[KCRoyals]

Well, the ESR was 25 which is usually the case when I try to come off Pred. CPR was fine. Going to ask my GP for new prescription and start off at 5mg and taper down. If this doesn't work I guess I'll go back to 10mg. Never realised when this started about 4/5 years ago I would still be with the ailment. Left my Rheumy a message that unless he comes up with something radical I'm gonna start medication again on Wednesday.

Love you all!