Flare 6 weeks after stopping Pred - Help!

[fairy100]

I stopped Pred (1mg) on Christmas Day 2023 (used a date I could remember).

I have recently been suffering with PMR symptoms in my hips, thighs and in various places down my legs. I have recently found walking difficult as I did before being diagnosed with PMR culminating with a trip to see Abba Voyage on Thursday when after getting off the underground it was a real effort to walk back to the car, it felt like I was walking through treacle. My husband had researched the least walking way!

My brother died in early January and I wonder if this has had a bearing on things.

My next Rheumy appointment is meant to be on 29 February (day after next Junior doctor strike ends so whether this takes place remains to be seen, it was moved from November 2023) and I was going to wait until then to discuss blood results and my symptoms but I have come to the conclusion I should restart Pred.

I know that many of you have experienced this and my question to you is how much did you restart on, I think 1mg but would appreciate any advice.

Thank you in advance.

[DorsetLady PMRGCAuk volunteer]

Condolences on loss of your brother- and yes it probably did have a negative affect on your PMR… 🌸

Think it might be worth try 5mg for a week to get a grip of built up inflammation and then down to 1mg. If you just try 1mg initially it might not be enough - and you’ll end up taking more in the long run…

[fairy100 in reply to DorsetLady]

Thank you, will do.

[PMRpro Ambassador]

Sorry to hear about your brother.

I agree with DL's suggestion. It is also a very common time for symptoms to appear that were held at bay with a very low dose but where zero is a step too far. I;d also have a bit of a springclean with 5mg for a few days and then try 1mg.

[Maryis80]

Same with me. Stopped .5mg Pred just before Christmas on advice of Rheumy. Since then, things have flared up again, culminating this last week with stiff shoulders, lower back, top of legs etc. Managed to contact Rheumy nurse at local hospital who them managed to get hold of the consultant (very difficult) and he eventually rang me at 5.45 on Friday evening. Said to go up to 3mg of pred for February, then alternate with 4/3 in march and maybe 3 in April before I see him end of April. Feel a bit easier since restarting the Pred so will see how it goes. He is also a great fan of Leflumonide and said to up my dose to 1 pill per day instead of alternate days. Dont seem to have any problems with Leflumonide so will do as he says!

[Maryis80]

Got in muddle 3mg for February 3/2alternate for march the if all ok 2 for April before I see him on 29th