Leflunomide

[Marko666]

Hi just an update on my journey, its been about 3 yrs of not being able to reduce pred mainly being at 15mg , rheumatologist wanted me to try Leflunomide I resisted for too long wish I hadn't after 2 weeks felt a great improvement it's my third week now and Wow feeling much better doing more jobs hips ache slightly going for a walk but a vast improvement I'm on 10 mg Leflunomide and down to 12.5 pred never been this low on pred before, had a bit of a sore throat 2 weeks ago don't know if it wS getting used to it but gone now otherwise no side effects so far why didn't I try it earlier tried methotrexate 2 yrs ago did nothing, will keep you informed 😀

[DorsetLady PMRGCAuk volunteer]

Good to hear…

[PMRpro Ambassador]

Good - as I keep saying, they aren't always a help but you DO have to try them to find out if you are one of the ones they do help, especially when like you you aren't able to taper at all. Lorna Neill in Scotland whose story I posted said she felt it "kick in" and she suddenly felt better. Hope it lasts without any problems.

[Marko666 in reply to PMRpro]

Thank-you pmrpro , it really has helped and no side effects so far I feel like a new person !

[123-go in reply to Marko666]

Excellent news! Don’t run any marathons or have a go at bungee jumping just yet 😉 😂.

[Marko666 in reply to 123-go]

Thank-you 123 I'm trying to hold myself back 😀

[SheffieldJane]

So glad to hear this. Good luck on-going!

[Marko666 in reply to SheffieldJane]

Thank-you Jane

[Koalajane]

So glad you have found something that works

[Marko666 in reply to Koalajane]

Thank-you, well its working so far ?

[Koalajane]

fingers crossed

[DogAgilityObsessed]

I’m really encouraged by your post as I’m about to start LEF. How quickly are you reducing the pred?

[Marko666 in reply to DogAgilityObsessed]

Hi DogAgility, I've only been on Leflunomide just under a month , the rheumatologist says 2 months to notice a difference and to not reduce until I see her in 2 weeks but I have already reduced from 13.5 to 12.5 because I feel so much more confident I shall stay at 12.5 until I see her as they tend to make you taper faster than I'd like, I'm going to suggest 0.5 at a time but as I type this I feel so much better infact I'm packing the motorhome to go to the coast for a couple of days, don't be put off trying you don't know till you try 😀