Leflunomide and plan for reducing prednisolone

[123-go]

My PMR journey began in February 2018 on15mg Pred and was smooth apart from one or two bumps in the road. I was diagnosed with asymptomatic large vessel vasculitis in September 2020. My Pred dose for PMR was successfully reduced from 5mg to 2.5mg over three months and I've remained on that dose. After seeing the scan images showing very active inflammation in the aortic arteries in September I reluctantly began 10mg Leflunomide daily five and half months ago and have had no physical symptoms and feel well. I had a telephone appointment a few days ago (after writing to my consultant after the 3-6 month appointment hadn't materialised), not with my consultant but with his research fellow who wants me to reduce Pred as follows:

2.5mg on alternate days for for one month, then 2.5 mg every three days with a face to face review in six months.

Apart from being miffed that it will be a year since diagnosis with no indication of whether the Leflunomide is doing its job and reducing the inflammation, I'm concerned about this method of tapering Pred. I'd appreciate any views on this from anyone and particularly from anyone else on the forum who is taking Leflunomide.

[PMRpro Ambassador]

Well I wouldn't reduce at that speed even at such a low dose - or maybe especially at such a low dose. Not because of the inflammation but because of adrenal function considerations. Although even from inflammation considerations, I'd rather dip my toe in the water rather more gently. I know that having days with no pred is thought by some to stimulate the adrenal function better - but less convinced after the time you have been on pred altogether, And I would want to know that the large vessel inflammation is cleared.

[123-go in reply to PMRpro]

Thanks PMRpro. You have echoed my thoughts! I have no desire to stoke up any fire that may be smouldering in the background.

[DorsetLady PMRGCAuk volunteer]

I'm concerned about this method of tapering Pred

So would I be, not sure what you've been doing up to date, but reducing 0.5mg every 4-5 weeks (using a slow taper) would be better on the body...and therefore probably more successful.

Within 6 months, provided everything goes according to plan (?)you should be down to 1mg or even 0.5mg a day -----so a cumulative dose of 7mg or perhaps 3.5mg a week.

Following suggested plan you would be on cumulative dose of 5mg every 6 days.

Know which way I'd rather try.

[123-go in reply to DorsetLady]

Thanks DL. I needed this reassurance and will do a slow taper.Should I inform my doctor that I'm doing this or wait till my next appointment in six months and then sock it to him?

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

Well you could suggest it to him that you’d rather try it the slower way....can’t see he’d object, you will be at the lower weekly cumulative dose at six months (but one never knows) unless he has specific reasons to do it his way! And can explain the reasons to you.

[123-go in reply to DorsetLady]

Thank you for your help, and PMRpro. My head was going round with it all and you have helped me to focus. A letter will be on its way to dr. There is, apparently, no dedicated nurse at my rheumatology clinic (Southend hospital) and getting the Secretary to call me back after leaving a message on her answering machine is like banging head against the wall. Stressful! I know they're busy but......What a good thing we have this group to support us.🤗

[PMRpro Ambassador in reply to 123-go]

Ah, you are at Southend too. Hmm - some very strange ideas originating there recently.

[123-go in reply to PMRpro]

Yes. I couldn't have been more satisfied until recently. I wonder if it's due to himself retiring from his NHS clinic?? It would be professional to let patients know to whom their care is being transferred.

[PMRpro Ambassador in reply to 123-go]

They probably don't know!!!

[123-go in reply to PMRpro]

And I more than probably agree with you!

[PMRrunner]

I was prescribed Leflunomide as a steroid sparer. I tapered down to 5mg ok but under 5mg had to taper very slowly using the slow taper method advised by people here. I certainly could not have reduced at the speed you are being advised to, with hindsight I should possibly have gone even more slowly.

[123-go]

Thank you so much for your reply. I'm in the process of writing to my doctor spelling out my concerns and asking him to support a slow taper. I'll be posting results when I hear back from him.