Hi all, a further update from me and some "good" news

Hi to everyone who responded to me on my previous posts with regard to my quandary about how to finally get a flare under control and the further discussion on a rheumatology referral.

So here is where I am now. Having taken DL's advice I went onto the recommended 12mg for a week followed by 10mg for a further week and have now dropped down to 8.5mg. I'm on my 8th day at 8.5mg and feeling fine - almost as if I could go leaping around the garden like the proverbial gazelle to paraphrase an earlier comment I read on here by someone - full credit to that person for the quote although I can't remember who it was who said it.

So it's all looking good for me at the moment and if I remain stable I will consider starting my new slow taper at the beginning of January - 0.5mg at a time following one of the slow taper plans.

The good news is that having had a nice chat with my lovely GP the other day she is now fully on board with letting me manage my own medication and is happy for me to take the lead on it which means the pressure to drop fast or come off pred asap to satisfy some idiotic guidelines is now completely gone and I can taper as slowly as I like.

In further good news, Sunderland/South Tyneside health authority rejected my GP's referral and refused to give me a Rheumatology appointment, the reason for which they blamed (I thought rather conveniently) on Covid. So, during the same chat with the GP I mentioned that I had heard good things about Rheumatology at QE in Gateshead and could she re-refer me to there instead. Both the refusal by Sunderland and my request to go to QE instead took her slightly by surprise but she happily agreed to try the alternative referral which has now gone through and I am just waiting for them to get back to me, hopefully with an appointment for sometime in the near future.

So all that remains is to thank all of those who helped and advised me on my previous posts : DL, PMRpro, Jinasc specifically, although there were others.

Best wishes to all for the festive season.

[DorsetLady PMRGCAuk volunteer]

"I'm on my 8th day at 8.5mg and feeling fine - almost as if I could go leaping around the garden like the proverbial gazelle to paraphrase an earlier comment I read on here by someone - full credit to that person for the quote although I can't remember who it was who said it."

...please don't 🤦‍♀️otherwise you might undo all your hard work, and we (you know who will have to have a nag ..😏).

and good luck with new referral...

[Hidden in reply to DorsetLady]

Thanks DL. I'm being very careful - definitely no leaping and bounding around!😂

[PMRpro Ambassador]

I do like it when a plan comes together!

Do I understand correctly - QE has accepted you as a patient?

[Hidden in reply to PMRpro]

I'm not sure if they've accepted me yet. I received a message saying my referral is being reviewed and they will contact me if they think I need to be seen. So maybe not yet, but at least they haven't told me to get lost like the other lot did - not so far anyway..

[PMRpro Ambassador in reply to Hidden]

Send the details to jinasc by PM ...

[jinasc]

When you say 'they will contact me etc' - who contacted you?

Let us know the answer please by a PM. . More ways to skin a cat etc.

[Hidden in reply to jinasc]

I'll send you a pm..