Update following flare

[pmrdec112014]

So following on from my previous posts about my latest flare and current despair Dr Hughes eventually replied saying that I should stay on my current 8mgs dose for a month before considering reducing slowly again.In the meantime I emailed consulted GP to inform them of current situation as for at least the past 2 and a half years I have had no input or follow ups from GP regarding PMR or for that matter steroid use as I really do my own thing( under the guidance and support of this group)

I did say in the e consult that I was happy to manage myself and with the email support of Dr Hughes but thought they should know. ( Also I wanted it on my records as I am in receipt of ill health pensions).

This was on NYE morning. With in 20 mins the GP called!!!!!

She is not my usual GP but has been very thorough in the past and said that whilst some patient autonomy is good it is " our call that you are monitored " She went through everything and also asked me what I try in order to reduce so signposted her to PMRGCAUK and the DSNS method!

We agreed I would e consult every 6 months from now just to check in and up date.

And would you believe it but had a call at lunch time from same GP making sure I was still OK on 8mgs!!!!!!!

ITS ALL or NOTHING!!!!

[piglette]

What an amazing GP!

[pmrdec112014 in reply to piglette]

Yes she is one of the good ones tbf.

[Fatsiajaponica]

Sometimes you have to give them a nudge to remind them that you are there with a chronic condition. Good luck with your plans, hope they work out well.

[pmrdec112014 in reply to Fatsiajaponica]

Thank you and best wishes to you too.

[PMRpro Ambassador]

Now THAT is how it SHOULD be, Has someone been kicking rears? And finally noticed they had been not making the call?

[pmrdec112014 in reply to PMRpro]

Yes that's what I thought! I think because I mentioned I was happy to manage myself but hadn't been reviewed for years I think they panicked!!!!!

They on it now for sure!!!!!

[PMRpro Ambassador in reply to pmrdec112014]

Hope they don't get TOO keen!!!

[pmrdec112014 in reply to PMRpro]

Yes that's the problem, them becoming too involved and then being restrictive with the prednisolone!!!!

[Motida in reply to pmrdec112014]

So glad you are being monitored at last.

Funnily enough I have been called for "review of long term illness" or some such wording. I thought it might be the pharmacist, but it is a care assistant they have in the surgery, so some relief.

Like you I began to worry in case they tried to reduce my Pred. I have a graph of what I have taken since Oct 2022 and am back to 7 mg after a flare, following being thrown down in a bus in October. Still not 100% free of upper pains, but was warned it would take several months. Ever hopeful the PMR might burn out this, my third year!

Good Luck.

[pmrdec112014 in reply to Motida]

I will hope for you too that your PMR journey is a short one!

[Bramble2000]

in my experience it’s nothing

[pmrdec112014 in reply to Bramble2000]

"in my experience it’s nothing"Sorry, unsure what you mean?

[PMRpro Ambassador in reply to pmrdec112014]

The "all or nothing" comment you made - Bramble has only experience the nothing version ...

[pmrdec112014 in reply to PMRpro]

Oh yes I see it now. Dur!!!

[PMRpro Ambassador in reply to pmrdec112014]

It's OK - first time round I glanced at it and wondered what she meant!!

[pmrdec112014 in reply to PMRpro]

Glad it wasn't just me then!

[PMRpro Ambassador in reply to pmrdec112014]

Sometimes difficult to link a reply to the original comment when they are so far apart - DL and I have a lot of practice!!!!

[pmrdec112014 in reply to PMRpro]

Yes that is very true, and I am sure you have with us lot on here!!!!!!