Reply from Rheumy!!

[Purplegloss]

I recently agreed with my GP that he could seek advice from a Rheumy to try to help with my Polymyalgia. This is what I have just read was the reply sent back to my GP.

" I fully agree with Dr **** (this was my previous Rheumy who was extremely rigid in following the guidelines, which didn't work for me) that in an ideal situation the aim should be to take her off prednisolone. Most of the times the symptoms patients suffer from on steroid reduction are of steroid withdrawal rather than a relapse of PMR. If she has been on steroids for 5 years (which I have) or more, she may not be able to come off prednisolone completely and may now be steroid dependent. The aim in this situation should be to find the lowest possible dose. Generally I would aim for 3mg or below. " Just wondered what peoples thoughts are on this reply? I am currently on 4.5mg.

[DorsetLady PMRGCAuk volunteer]

Bit like the curate’s egg!

1. Agree that ultimate aim is to get off Pred -always assuming your PMR plays ball

2. Don’t agree with -Most of the times the symptoms patients suffer from on steroid reduction are of steroid withdrawal rather than a relapse of PMR.

Sometimes yes, but not most of the time

3. If you are steroid dependent- and that’s open to question, he seems amenable to you stay on small dose. Hopefully won’t be necessary.

[piglette]

The letter does not really have a plan. In fact it is pretty nebulous. I suppose all you can do is just carry in as normal and slowly reduce if you can.

[SnazzyD]

Not sure if they mean steroid dependent because your PMR doesn’t go away or whether he means your adrenal function won’t be reinstated. I don’t think they can say either way without a crystal ball. I know from experience that so much can improve between 5mg and zero. If it were me I’d be reducing by 0.5mg over a 2 months plus and taking it easy if you can and seeing how you go. Given that their expectations are so low for you, there’s not much to lose is there? I’d say it’s better than a doctor telling you to be off Pred whatever the outcome.

[PMRpro Ambassador]

Doesn't say owt!!!! But it IS very valuable in one sense: your GP is being told not to force you off pred. I do wonder sometimes what GPs think the rheumy can do extra!

Good outcome I'd say - the others have already said the rest of what I'd say.

[PMR2011]

if he means “dependent” due to adrenals, not so. I was on Pred 7 years and was able to taper off (with TCZ). However took a year to go from 4mg to zero. A year of lots of fatigue, naps and being good to myself!

[Purplegloss]

Thanks everyone for your help, as I wasn't quite sure what to make of his reply- he doesn't seem to be optimistic that I can get off the pred, whereas eventually I know I will get there, just don't know when at the moment. I do find it quite hard to determine the difference between a flare and steroid withdrawal at the stage I am at, which is 4.5mg. I don't seem to have any problems with adrenals that I am aware of. My plan of action is to stay as I am on 4.5mg until I have my next blood test mid-December to see if my CRP is back down a bit from 17, which is a bit high, and then taper down by .5mg using the DSNS method. Onwards and downwards with pred.

[PMRpro Ambassador in reply to Purplegloss]

You won't be aware of problems with adrenal function at this sort of dose - it is enough to function well for most people. It might be a different matter latter. But be grateful he doesn't expect you to get off pred - it means you can continue to taper at your own pace and he won't be pushing you to go faster.