Reducing dose of pred

[porkysausage]

please can i have some feedback on reducing predisone from 2.5mg to 0 , i am on 2,5 mg reducing slowly but am experiencing a degree of back pain and some thigh/knee pain on standing. is this usual ?

[Yellowbluebell]

Hi welcome to the forum. Could you give us some more information on yourself like country of residence, age and how long you have had pmr. This helps people give you better responses. Thanks. YBB

[PMRpro Ambassador]

It would be helpful to know how long you have been on pred and how quickly you have reduced to this dose - Starting dose, size of the steps down and how often would be useful to know. Thank you!

[porkysausage in reply to PMRpro]

i have been on prednisone from 18 months, but had a few relapses and had to increase ..however from 17th april 2019 i have been reducing every 5 weeks 1 mg until i got to 3mg and suffered a severe relapse so stayed on 3mg for 12 weeks , then down to 2,5mg 29/10/19 but have symptoms again of joint pain due to stiffness

[PMRpro Ambassador in reply to porkysausage]

I suspect you have found what you were looking for: the lowest dose that manages the symptoms as well as the starting dose did and I'd suggest you would be best to stay at 3mg for a few months before trying again. Then 1/2mg at a time would be a better drop. It doesn't mean you won't get lower - just not yet.

You have done really well to get to this low a dose in 18 months - don't spoil it by trying to reduce if symptoms are coming back. It is low enough to be doing no harm - but a lot of good.

[porkysausage in reply to PMRpro]

thanks very much for the advise, hopefully i am going in the right direction then

[SusanJF]

Hi all, really useful and interesting to read, I found myself in the same situation about 6/7 weeks ago and am staying on 3mg for a few months now after a failed attempt at 2.5/2. I too had PMR diagnosed May 18 after suffering for at least 5 months.

In my experience I’d forgotten how awful the symptoms were that returned, not as bad but a warning to behave with respect to my Pred.

I’m seeing my new Rhumy on Friday who on the first app asked me to reduce by 1mg every 6 weeks. To be fair this advice has brought me to the lowest manageable dose for me but if he’d simply advised his strategy then I would have known & not thinking I was on a path to 0.

I’ll be taking the PMRGCA leaflet along with me & a screenshot of a part of this thread, a list of questions gathered from here also.

I’m so grateful for your advice it’s empowering at appointments and I know I’m lucky to have achieved managing at 3mg, the brain fog has mostly gone and I feel so much better most of the time.