Tapering

[Cinnamon716]

I was diagnosed with PMR in 2019. I then moved house twice. My new doctors practice is very impersonal and promotes either phone consultation or discussing medical problems with their highly trained receptionist! When I called for an appointment re PMR, the receptionist laughed and said "PMR - whatever that is"! So, I feel I'm on my own.

I've been tapering for 6 to 8 week intervals at 1/2mg whenever PMR was stable. Flare-up in October 2022 at 6mg. and new doctor said to get off Pred a.s.a.p because of side affects.

Because of covid, house move and changing doctors, my first rheumatologist visit was a month ago. A disappointing visit filled with her making notes from her observations, instructing the trainee but little dialogue with me. Only advice was 'taper off a.s.a.p. If you have another flare-up do contact me". Bearing in mind this visit took 6 months to get, I'm not that re-assured.

May 2023, struggling through more flare-ups, I finallygot down to 2mg but in constant sever pain. Buttocks and thighs were too painful to sit. Legs and shoulders too painful to sleep. Walking became a painful shuffle. Anxiety and depression started to take over. Being a senior, I thought this was the sudden onset of old age! Then I remembered this forum. After reading some of the posts, I decided to increase Pred to 5mg. I'm now taking 2.5mg at 8am and 2.5mg at 6.00pm. It's now two days and I'm feeling so much better!

I'm monitoring this for a week and then maybe tell the GP and R. What do you think?😊

[DorsetLady PMRGCAuk volunteer]

Definitely sounds like a flare -and no great surprise really…

Usual advice is to add 5mg to current for 7-10 days, get things under control and then you should be able to drop back down to just above the dose where issues started..

Not quite sure sure what is your best actions-but after a week or so you should hopefully be able to drop back down to 3mg -but you won’t know until you try.

I can perhaps understand why your GP doesn’t know that PMR can last a lot longer than the 2years often quoted, but your Rheumy should know!

If the increase and drop back down works then I’d be inclined to inform GP & R retrospectively…

[Cinnamon716 in reply to DorsetLady]

Thanks for your import. Yes, it's as I thought. I'll give it 10 days and see how I feel.

[piglette]

It is very obvious that you were on too low a dose of steroids. I must admit I am a bit gobsmacked by your doctor who obviously has not met many people with PMR or she has a lot of oatients in agony.

[Cinnamon716]

Thanks for the comments, but yes, there appears to be no awareness.

[PMRpro Ambassador]

DL and piglette have said it all. I would sort the flare out and then attempt to contact the GP - who may or may not know what PMR is but you could take a copy of this for their perusal with a spare for the rheumy should you have the misfortune to ever meet HER again!

pubmed.ncbi.nlm.nih.gov/368...

The lead author is one of the best rheumys anyone with PMR could want to meet - and he knows what he is talking about.

[Cinnamon716]

Thank you, I'll do that because I almost feel I'm an imposter.

[PMR2011 in reply to Cinnamon716]

you are not the imposter your doctors are! That’s a horrible way to practice medicine! It should be a partnership. You’ve been given great advice here. Any way you can change docs? Wish you well.

[Cinnamon716 in reply to PMR2011]

Thank you.

[Mayadill]

Big hug. Horrid that you should feel like that.

[paulus65]

I'd be inclined to get on with it by yourself -with the help of this forum. Doesn't look as though your GP or Rh are going to be much help.

[Cinnamon716 in reply to paulus65]

Yes I agree Paul, I was just trying to introduce myself to the new GP practice.

[Daffodilia]

Can you change your GP? We did and new one is great

[Cinnamon716 in reply to Daffodilia]

I can't cope with another change at the moment, I'm only now beginning to feel settled. I keep GP visits to the bare minimum but its possible I'll change when I have more local knowledge. Thanks.

[Daffodilia in reply to Cinnamon716]

Good Luck - it is a long journey for some

[Cinnamon716 in reply to Daffodilia]

Thank you. 😊

[Missus835]

Sounds like the Nursing Line for my Rheumy. Nurse Ratchett answers. Their standard answer is "if it's emergent go to ER", otherwise go to a walk-in clinic. They won't talk to me now because they say "I'm disrespectful" (which I'm actually not, because they have not yet seen my disrespectful). It does sound like your Pred dose is a little low. In general, GP's and Rheumy's don't know much about PMR/GCA or Prednisone and they want you down asap, which is not a good thing. Try to convince them of that...not. I think they all read the same Grade Primary readers. "Dick 'n Jane".

[tempusfugi]

So sorry to hear what you've been going through, Cinnamon716, but glad you've found the forum again and that you're beginning to feel much better. Ludicrous thoughts from your surgery and from the rheumy.😒

[Cinnamon716 in reply to tempusfugi]

Thank you.