Leflunomide no more

[Alebeau]

So my rheumatologist told me to stop taking leflunomide as it was causing me increasing numbness and mild pain in my feet and hands. I started this (20 mg/day) on September 25, 2021 and it did succeed in getting me to 5.5 mg so far.

She prescribed a 10 day dose of Olystr which she claims will help flush the leflunomide out of my system a little quicker.

Just wanted to share in case you run into the same issue.

[PMRpro Ambassador]

Hope you recover from the neuropathy once it is out of your system. That is the first time I have come across the use of the antidote. I have to confess, that was the adverse affect that scared me most.

I do hope you don't have too bad a flare without it.

[Alebeau in reply to PMRpro]

Thanks 🤞

[Alebeau in reply to PMRpro]

UpdateWoke this morning feeling worn out and achey. This after just 3 days off leflunomide.

Took 5 mg Prednisone at 7:30 am and was feeling semi-normal by 10:30 am.

I know this could be the start of a flame.

I know you cautioned me on this outcome.

What do you think is the best course of action.

I really hate losing any progress as I am now at 5.5 mg and was feeling like I was finally gaining ground. I take the other .5 mg at night.

Thanks

[PMRpro Ambassador in reply to Alebeau]

Best course of action is to take the amount of pred you need now you haven't got the effect of the steroid-sparer. That may take a day or two to establish - Obviously 5mg was enough for the morning dose - it'll be the later dose you will have to increase I assume to take the effect up to the 24 hours.

Shame - but there it is. And shows some opeople get even worse effects with their precious steroid-sparers ...

[Alebeau in reply to PMRpro]

Thanks

That is good advice and I will definitely consider an extra mg or two at bedtime then slowly reduce again.

I will also notify the rheumatologist about this if it is indeed a flare - will decide tomorrow morning if this pattern continues.

[Alebeau in reply to PMRpro]

Another update

I stopped the Olestyr and am now feeling my old self again at the 5.5 mg Prednisone.

I think the Olestyr was sucking the prednisone out of my system.

My oldest daughter who also takes Olestyr suggested this to me and it makes perfect sense.

I was taking 3 pouches a day - way too much. I will let the rheumatologist know what happened when I talk to her in January.

She prescribed 3 a day to flush the Leflunomide out of my system but it probably also flushed out the prednisone.

Lesson learned.

[PMRpro Ambassador in reply to Alebeau]

Suggests it from an interactions checker.