another flare

[Suffererc]

had tapered to 2/1,5 . A week ago I had yet another flare.

Went back to 5 for a few days and then dropped to 3. Been taking 3 for 5 days but pain isn’t subsiding.

Just noticed my GP has reduced the amount of Pred to 56 tablets. Surely she should have warned me she was going to do this. She doesn’t think I have PMR anymore???? What is the pain, the agony turning over in bed and not being able to get out of a chair easily plus more.

The last time we spoke I think I was on 2mg which would be both boxes and none spare.

I have to contact surgery to ask for more otherwise I will run short on 3rd week.

Just wish there was more support from the surgery that we get on here, which most don’t like us using the net.

[Koalajane]

Oh dear, not good. I take it you haven’t managed to build up a standby stock.

My surgery is very good and my repeat prescription is still enough for me to have 9mg and I am on 7mg. I have been down to 4mg so have a stock for the ‘in case’

[Suffererc in reply to Koalajane]

Yes I have built a little stock, but won’t last long. I also need to keep some spare because we go to visit our son in Switzerland quite often and you can never be sure what mite happen today . Thank you for replying.😊

[DorsetLady PMRGCAuk volunteer]

Certainly sounds very PMRish to me…sorry but you do need to discuss with GP and say you are having a flare, and difficulty in getting it under control, so you need more Pred rather than less…

[Suffererc in reply to DorsetLady]

Thank you. Will go AskMyGP tomorrow….urgh

[PMRpro Ambassador]

I think you need a stiff discussion with your GP - and say you will make a complaint if nothing else works.

You aren't reducing relentlessly to zero - you are looking for the lowest effective dose and it sounds as if you have reached it - and overshot it. You are flaring and you obviously need more to prevent it getting worse - in which case you might have to go much higher.

[Suffererc in reply to PMRpro]

Agree. I was fine on 2.5 then 2 was ok but 1.5 I have tried twice and each time a flare. My GP is not there this week so will have to see another. They all have beards and talk as tho their seats are on fire. I lip read so it going to be fun. Thank you for replying. Good job we have this forum for support

[PMRpro Ambassador in reply to Suffererc]

Tell them to take account of that - if a GP can't cope with hearing problems, who can?

[Suffererc in reply to PMRpro]

They take account to start with although the beard doesn’t help at all but then they just drift back to 100mph.

[PMRpro Ambassador in reply to Suffererc]

Interupt them and say slow down. You would be entitled to an interpreter if you didn't speak English well enough - works both ways and THAT slows them down!!

[SheffieldJane]

Crikey! You’ll need to challenge this reduction in your prescription. Your symptoms sound very volatile to me. Sounds like she’s pushing you far too fast. This is a game of exquisite, patience and she is not playing it and you are suffering ( needlessly).

[Suffererc in reply to SheffieldJane]

I was good on 2.5. Ok on 2 but 1.5 was a no no for the 2nd time.It’s not only my GP that pushes ‘you have been on Pred a long time’ it is the nurses too. I tried to tell them about the 5.9 years and the eye brows went up.

I am sure they will give me more but the attitude is all wrong and shows no thought or compassion.😊

[PMRpro Ambassador in reply to Suffererc]

PLEASE treat the patient in front of you - NOT the blasted textbook one. Who doesn't actually exist except in the textbook!

[Suffererc in reply to PMRpro]

I wish I dare😂🤣😂. Doctors gang up together when folks make complaints. We were asked to find a new GP when a court case loomed over my daughter’s treatment

[PMRpro Ambassador in reply to Suffererc]

Yes - I was told to remove myself from the practice by the senior partner. I gatecrashed the local mental health hospital the same day and the consultant there agreed with my assessment of the situation and told me which GP practice to go to in another village. Who saw us as soon as the paperwork was done. Despite me telling them why I was there and that my husband was with the other practice. I do wonder how many other patients they had collected! It was a whole new world!

[Suffererc in reply to PMRpro]

Or how many patients nationwide have had and still get the same treatment of compassion 😂🤣😂🤣