Taking Leflunomide: I've just received my first pack of... - NRAS

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Taking Leflunomide

cathie profile image
18 Replies

I've just received my first pack of this. Have been hoping for it and here it is. Now it says on the information sheet to take it with plenty of water and with food, so I'm thinking with the evening meal. But I thought I'd check with any of you who've had experience with this meds.

Fingers crossed!

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cathie profile image
cathie
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18 Replies
Jmrose profile image
Jmrose

I took this medication for a few months and about a month into it started experiencing extreme burning and tingling in my hands and feet. It was so painful and finally pinpointed it that it must be caused by the medication because the symptoms started one month after I started the meds. I had to stop at my rheumatologist direction even though it was helping my RA levels and now waiting to see another specialist, another rheumatologist from the University of Miami to co-treat me. Good luck and I hope it works for you.

cathie profile image
cathie in reply toJmrose

Thanks I hope you find something that works

medway-lady profile image
medway-lady in reply toJmrose

This happened to me but was advised to carry on for another 2 weeks then like magic I woke up no pain at all, a few days later the swelling decreased and loads more energy. Not on commission but its great.

medway-lady profile image
medway-lady

I've been taking this now for 18 months and have been in remission for 12 months. I take with a large glass of water at night. For me its a great medication. No side effects since the first few weeks at all.

cathie profile image
cathie in reply tomedway-lady

Thanks for this

medway-lady profile image
medway-lady in reply tocathie

Be aware that it did hurt worse for a couple of weeks then all the symptoms of RA went. So don't be put off but get some heat bags and cold bags in and a supply of paracetamol. Hopefully it'll work as well for you as it does for me. xx

cathie profile image
cathie in reply tomedway-lady

Ok I'll brace myself for an upsurge. Very helpful

Someonesmother profile image
Someonesmother

When I took it I took it in the morning with breakfast, I think it is up to you to choose what time best fits with your routine. I had to stop it due to swelling and peripheral neuropathy.

MickeyJoints profile image
MickeyJoints

I too am a recent starter on Leflunomide (about a week!). From what I've been reading here, it does seem that most people get on with it ok. I do note with interest the reports that it can cause burning and tingling and that one person persisted and got free from pain. Perversely, I'm kinda hoping I do get that pain as it could suggest recovery!

I take it at night with my other meds and have not noticed any adverse effects.

Let's compare notes as we go down this avenue!

AgedCrone profile image
AgedCrone

Unless directed otherwise I always take medication after my evening meal. I reckon if you are asleep &'the meds make you feel "off." .....if you are asleep you won't know about!

Might be naive, but it works for me......unfortunately Leflunomide didn't suit me....but it's magic for a lot of people.

hedgehog45 profile image
hedgehog45

Hi. I'm also new to leflunomide. I've taken it for 4 weeks and so far so good. No side effects although my recent blood tests show my levels are low so they're keeping a close eye. I feel more energetic which is great. I take mine at night after evening meal. Fingers crossed for no side effects!

sallyeb profile image
sallyeb

I have been taking this for about 5 years. I always take my drugs in the morning and other than struggling with taste buds for the first couple of months I have found it so much better than mtx I was on before.

Jeanabelle60 profile image
Jeanabelle60

Hello darlin. I really hope you get your much needed relief. Let us know who you get on. Take care. XX

Nitrobunny profile image
Nitrobunny

Hi! I took it last year for a few months and was making great progress until I woke one day so weak I could barely get out of bed and had a myriad of bad reactions so severe I was hospitalized. It was terrifying. I completely crashed and burned. The good thing about this particular drug is that there is a drug protocol they can give you to remove it from your system in case of emergency.

However, I know of many people who have successfully taken it for years with great success. I hope and pray you continue to tolerate it well and have continued relief.

All the best~

Karen77 profile image
Karen77

I'm on my second week and take it first thing in the morning. I'm not great at remembering to take meds in the evening. I think do what's best for you. I don't notice any nausea or brain fog with it. I also haven't discovered any magic weight loss, but a girl can always hope, right? :) Good luck!!

nomoreheels profile image
nomoreheels

I'm due to start LEF once the paperwork is received by my GP. Hope it's a good one for us both Cathie. x

cathie profile image
cathie in reply tonomoreheels

I hope so too, and that it's worth all the hassle!

ruth_p profile image
ruth_p

I used to take it with milk before bed.

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