Good advice from all you lovely PMR sufferers

[Harrywogan]

Having gotten my pred down to 3 and had quite a bit of pain and tried to forget about it so stupid I now realise as iam now having a flare,my gp says inflammation in blood had risen but I did realise, he told me to go back to 4,he doesn't realise when your in a flare you need to go higher,so took a extra 5mg for5 days and then I'll stay a five for 6weeks, hoping that nips it in the bud,never told gp lovely handsome young man tho x

[SheffieldJane]

Then he will never learn, though. It’s hard to continually fight for what you know works. Many doctors are just dazzled by the dangers of Pred therefore they don’t use it effectively. You end up using less by nipping flares in the bud quickly and doing slow, careful tapers. As you are totally aware.

[Harrywogan in reply to SheffieldJane]

Yes SheffieldJane I only cut pred 1/2mg every 8 weeks slow but seems to work I just got to 3 and made up my mind wasn't going back up, that's a laugh .take care x

[SheffieldJane in reply to Harrywogan]

Good luck!

[DorsetLady PMRGCAuk volunteer]

Good luck -and please educate your GP!

[Harrywogan in reply to DorsetLady]

Will try DorsetLady when I can eventually see him. TAKE CARE X

[Orangecakes]

Good morning Harrywogan, Sorry you are having a flare but good that you caught it. I would like to empathise with you, as I recently reduced to 4mg, following a slow taper. I thought I was doing well, I was on the dance floor a couple of weeks ago. I was doing fine until aches and pains and feeling like a rusted piece of equipment that needed oiling, LOL. Realised that I am having a flare. I tried going up 1/2 mg to 4 1/2 mg for a couple of days, no result so, now I am going to follow the flare advice given on this site. "The only thing that does help is an increase in dose. Sometimes a return to previous dose is enough, but if it’s got too bad then it’s recommended to add 5mg to the dose you last felt alright - stay there for 5-10 days and then drop back down to just above the dose you flared. Stay there for 2-4 weeks to make sure all okay before you try and taper again." As annoying as this illness is, it is what it is. Stay positive and keep smiling. All the best to you.

[Harrywogan in reply to Orangecakes]

Thanks Orangecakes good to here how others are progressing with this horrible condition and we're not alone.Have to say oranges cakes are my favourite 😀. Take care

[jinasc]

Reading your post, you have come across a lovely young man and it is now up to you to try and educate him, in the hope that others who come along after you will benefit and so might he.

To this end to encourage you to try, I have reproduced part of a letter from another young guy - who learned. I am not disclosing something that was not shared by others. I just feel it would be unfair to publish it all.

Extracts from a letter written ten years later from the day he met some patients.

“Ten years ago “I was a naive, enthusiastic, know-it-all young rheumatologist then.

I then realised that most of what we learn in medicine came from patients more than text books, so we would always value the important work you have done in teaching myself, my colleagues, students and your fellow patients.

I thank you for all I have learnt from working with (omitted) . I have made many friends here as well as earning my reputation in the medical profession because of the unique opportunity you gave me as medical advisor and patron over the last 10 years.”

That young man is now an expert in PMR & GCA and is involved in research.

It is always worth trying to pass on information to young, open minded GP’s. You can try with older ones and sometimes you get a knock back and sometimes it works. If you want to when

NB: healthunlocked.com/pmrgcauk...

Follow this link and read up on it. When you get to jinasc's response it contains information on tapering plans from an expert in the field of PMR & GCA research. YOu can also download tapering plans etc and share them with him.

Read it and then you can start to educate your GP, who you said is a lovely young guy.

There is a wealth of hard information on this site.

PMRpro's 'dripping tap' is an excellent explanation for dealing with a flare and a slow reduction. You also, in the long run, shorten your intake of pred.