Leflunomide dosage

[Darciedoodles]

Morning all ,

I have been using the Leflunomide for 3weeks now 10mg but also on 30 mg prednisone every day first week 25 now 20. But I want to come if the steroid as I have been in them since 3/10 and have developed are very round face which people are commenting on. .plus I’m always hungry 😥

I still have puffy swollen very hot hands but the pain has definitely subsided.

has anyone had a larger dosage of Leflunomide and no steroids to keep it at bay ?

the first 2 weeks by hands felt worse but reading some other comments it would appear that’s normal for some ?

if anyone takes a higher dosage which keeps the inflammation down with no steroids I’d love to hear your story ?

I have a call with RA nurse tomorrow ,

I’ve a lot to do before Christmas and trying to make sure my hands are in working order again ( couldn’t use them most of Oct)

I have been invited on family holiday to Fuerteventura on 7/12 for one week but worried the heat might make my hands worse ? They seem to best in the cold

thanks in advance for any advice

have a great day

[medway-lady]

It takes 12/14 weeks for LEF to work so very very early days. With that dose which isn't high I don't think you'd not really get the moon face associated with steroids. I took 160 mcg a day for nearly a year and it took a good few months before they altered my appearance. So be careful you're not listening to speculative friends. The steroids need to be tapered down and really only your prescriber can direct you how but it mostly depends on how long and the dose. So it's indivual. I'm afraid really with RA patience is the key and it well may be that a short holiday will help you. It does me ! all aches go with warmth and dry heat; its the humidity which can really cause me problems so be aware that in the UK our humid climate might be the case rather than the temperature alone. So thats just a few ideas based on my own experience and hunger with steroids is common but my understanding from the Clinical Pharmacist in Renal Unit is they alter the way the body metabolises food so it's not what you eat anyway but how your body processes it. So don't let anyone tell you your scoffing too much to cause weight gain, as it's temporarily beyond your control. In any event don't worry it does come off without any diet. And most of all they don't always help and be aware of the issues that steroids can cause long term and if your worried talk to your RA nurse on the helpline but really try not to worry too much and be patient it all takes time. RA meds unfortunately are not like antibiotics and there is no one size fits all. But I hope that helps and you're getting relief soon. LEF changed my life but before it worked it actually made my RA worse. Particularly my hands. So stay positive xxx

[AgedCrone]

You need to speak to your rheumy nurse she will know exactly what you need. We are all different & react differently to the drugs we are prescribed.

Whatever you do…..don’t alter your prescribed dose without professional advice.

[bpeal1]

The problem with RA is that it is a very individual thing. What works for one patient probably won’t work for the next. So there is absolutely no point in asking what combination works for someone else. Unfortunately you have to find the combination which works for you and the only way to do that is trial an error.

Having said that 10mg is quite a small dose of Leflunomide and many people take 20mg. It’s good that you want to come off the steroids but you need to do this in conjunction with your rheumatology team. If Leflunomide isn’t enough on its own there are plenty of other alternatives to steroids which can be taken with it, both conventional DMARDs and biologics or JAK inhibitors. I suggest you contact your rheumatology team and have a discussion with them. It may well be that they won’t want to try changing anything until you’ve been taking the the leflunomide for at least 12 weeks but it’s worth an ask.

in the meantime have a read of this NRAS booklet so you have an idea what some of the options may be. nras.org.uk/product/medicin...

[wilbertjellyfish]

I'm starting on leflunonimide this week. 10mg for 4 weeks then up to 20mg if my bloods etc are ok. I'm on pred also but have been for years. You definitely want to taper down the pred but following the guidance of your rheumy team, if you cut them too quickly you could flare and have to go back up which is obviously not what you want.

Nothing in rheumatology happens quickly it's definitely a waiting game and you learn patience.

[WilfDog]

It's early days Darciedoodles. Lots of fab advice given. I'd just say be guided by your rheumatologist and take it slow. Tapering has to be done very gradually. In terms of the holiday, I'd definitely say give it a go. I have been to the Canary Islands and the dry heat out there certainly helped me. Its the high humidity in this country that escalates my pain. If you feel up to it, I'd go. I'm sure it will do you the world of good.

Good luck! Let us know how you get on xx

[AgedCrone]

I think what everyone is trying to say is….listen to your rheumy team…..here is the place members tell how THEY deal with their medication, but none of us are qualified to advise how anyone else should alter the dose or timings of their prescribed drugs .

I know getting hold of your rheumy team can be difficult…but it really is better to get answers re the drugs you take from them…than mess up big time.

[Sebastian247]

As others have said it is impossible to draw any helpful info through comparison with others reactons to the drugs we take. So just for information....

I'm on Leflunomide, 20mg a day (started on on 10mg for a month) and do not take prednisolone. I have only taken pred once in the past, for 3 months, when my RA was first diagnosed (in 2021) and not under control.

I am fortunate I am sero negative (according to my RA consultant) and since being diagnosed and receiving treatment, my RA my symptons have never been as severe as many others suffer. The Leflunomide seems to be working well and I suffer from minimal side effects at the moment.

Hope your call with the rheumy nurse answers your questions and concerns.

Best wishes - Seb

[Darciedoodles in reply to Sebastian247]

Thanks Seb

That’s good to hear and exactly what I am hoping for - I appreciate it is different for everyone but I used to only take a small dose methotrexate and felt great but when platelets dropped I had no meds gor nearhy 12 weeks and major flare up so Leflunomide is new to me but I’m worried re taking prednisone for a long period of time

I’ll update after my RA call

Thank you

[Sebastian247 in reply to Darciedoodles]

No worries. I did have an upset tummy to start on Leflunomide. But it passed. I'd be concerned too about being on Pred long term. So sooner you can get off it the better. Keep us posted.