hello

I was diagnosed with PMR about four years ago. Generally I am a positive person and I don’t dwell on my symptoms but getting off prednisolone seems to be impossible. I get down to 1mg then it flares again. I’m beginning to see a correlation between the flu vaccination and a flare up. I try to think that each day is a new day and get on with life but I hate prednisolone and the various ways in which it bites you!

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

To be honest if you are okay at 1mg I wouldn’t be worrying too much… Prof Dasgupta a leading light in PMR/GCA very often keeps patients on a very dose as long as required.

But how are you trying to get below 1mg? Use Avery slow taper as we often talk about on here, and only 0.5 or even 0.25mg a time not directly to zero.

Couple here -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Plus of course it could be your adrenals stuttering - which don’t help -

healthunlocked.com/pmrgcauk...

[Fiddlemum]

Hi- yes - I find pmr journey sometimes makes my mental health worse. Get quite down and anxious- as you’ll see by my latest post. I’m thinking of trying to see my gp have a bit of a discussion as to the way forward. I’m also trying to turn my negative thoughts into positive and keeping things in the day.

Anyway- you are not alone! Sometimes even knowing that can help. 💗

[PMRpro Ambassador]

Hi and welcome.

Yes - if you are able to keep well at 1 or 2mg there is very little to worry about and outside the UK and USA, it is far more accepted by doctors that PMR goes on grumbling for a long time and if the patient is doing well on a low dose of pred there is nothing to be concerned about. A long time on such a low dose is far better than trying to force the patient to get to zero and causing flares in the inflammation which require a return to higher doses, creating a yoyo pattern which actually often results in needing MORE pred, not less.

[Gimme]

Agree, I think the mental health aspects of having a chronic illness are often overlooked. Like you, I am normally a fairly positive person, but I have had my fair share of wobbles over the last year or so, and there have been moments when I have felt totally beaten down by the whole experience. I try to do as much of the things that make me happy as I can manage and take whatever rest I need when I am feeling depleted without guilt. And, as I am certain that I got this way in the first place due to years of intolerable levels of stress at work and in my personal life, I try to be kind to myself and not pressure myself over the things that don't get done.

[Temoral in reply to Gimme]

Hi Gimme...so agree with you...stress plays a part in so many way, more especially from family members from whom you expect support. Take care...x

[sidra1968]

If it makes you feel any better, I would kill to be on 10 mg let alone 1 mg! I am finally down to 20 mg this week after 10 months of yo-yoing down from 35 mg (even took 40 mg a few days while on a cruise). Don't worry about it, and keep your positive attitude

[christine2715]

It is generally accepted now that 2mg of Pred is fine. Constant flare ups far more likely to affect your health.

[ParsnipSoup]

I have never suffered any reason why I would want to come off Preds. My Rheumatologist said to stay on the dose you are comfortable with . I am now on 5mg Who said you need to come off them altogether ?

My Mum couldn’t below 3mg and my sister 5mg. Sister refuses to stop and Mum lived a happy healthy life with no adverse effects.

I consider Preds my friend .