PMR symptoms trumps all other indicators

[Thiago1396]

Following a comprehensive discussion with my GP re my PMR, in which I used advice provided on this forum, I was delighted to obtain considerable understanding and support going forward on my PMR journey. With regular monitoring, especially my diabetes type 2 and BP and regular blood tests etc. I was delighted with the wording on my prednisolone prescription and it being on repeat ordering.

It makes me sad to read about other PMR sufferers having dictates on tapering too fast and the 2 year expected duration of PMR being sorted from the doctors and suffering flares or inflammation build up etc.

With this forum and the realistic support from my doctor, my PMR journey is less stressful than otherwise could have been. My Symptoms of PMR trumps all other indicators.

[DorsetLady PMRGCAuk volunteer]

Hurrah.. a sensible doctor. … that advice needs including in PMRpro’s post ‘what I wish doctors knew about PMR/GCA’

[Rose54]

Morning

Made me look at my packages

Thay just say take as directed with or directly after food.

The only thing my GP ask is l inform them if l have to increase.

He never questions when l order more Preds so l have probably got enough to last me a year .

So another GP who understand s

Rose

[Sillydogsmum]

Hi there, you are on the same trajectory as myself, how is the tapering going? I have just done my first to 17.5 after 5 weeks on 20mgs.I was warned re cataracts, but have had mine done already so will see if I might need a bit more lasering if the capsules get a bit thickened again.

[PMRpro Ambassador in reply to Sillydogsmum]

I've been on pred for 14 years. I am now over 70 - and the first sign of a cataract appeared last year. Not that I am aware of anything yet. It isn't inevitable. The risk of PCO is higher if the cataracts were steroid induced in the first place but steroids are used to prevent PCO in paediatric cataract surgery.

[Thiago1396 in reply to Sillydogsmum]

I did 17.5 1st July, 15 1st August, now for 12.5 on 1st September. Going well so far. May stay on 12.5 for longer than 1 month before tapering to 10. From 10 I plan to reduce by 0.5 per month or per 2 months, to 8, then by 0.25 per month or longer, because I’m concerned about adrenals reactions, so very very careful during this period. Symptoms and snail pace will dominate my tapering, slowing down being my default option.

[piglette]

I do not have anything on my pred box, but I do have something on my vit D with calcium saying that I should leave at least two hours between taking them and taking the pred.

[Body_bonkers]

GP asked me how long I would be taking steroids for last week so I replied rest of my life !

[PMRpro Ambassador in reply to Body_bonkers]

Not necessarily - the answer is "as long as I need"!