Leflunomide: I started taking this exactly 7 days ago... - NRAS

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Leflunomide

19 Replies

I started taking this exactly 7 days ago. Today I feel sick and just plain weird. A bit dream like I suppose. I know the sickness is one of the side effects, but the weird feeling, has anyone else had this, and how long did it last?

Thanks for any help xxx

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19 Replies

Hello

I was on this medication for about one month and it was withdrawn and now on METAJET

All DMARDS can have rotten contra indications, give it a bit more time, then if not right have words with RA nurse

Good luck

BOB

in reply to

Thanks Bob. I really didn`t want to take this as the side effects are frightening. I have a new consultant who I am seeing on the 15th, but she may just ask me to stick it out. The odd thing is, my joints are actually in the least pain they have been for ages today, and I have caught a cough. Normally I would be in the middle of a really bad flare.

lab-lover profile image
lab-lover in reply to

I was on lef. For. Quite a while, no bad effects with it. All the drugs have nasty effects, but it does not mean everyone will get them. The lef. Must be doing you some good and working if your joints feel a bit better, I would leave stick with them, as usually as you get used to a new drug, you dont feel the effects as much, well, that is what I have noticed :)

in reply to lab-lover

Thanks lab. This is the first time I've had any side effects at all, so I am sure everything will soon calm down.

I'm impressed if it has worked so fast on my joints. The only other thing that has are steroids.

allanah profile image
allanah

I would actually phone the Rheumy helpline tomorrow and ask. Yes you can get side effects , some of them affecting things like blood pressure , so best to check if you should see them or just continue I think . Great news on the joint pain though !!! Axx

in reply to allanah

Thanks Allanah. If I still feel odd tomorrow I will try to get through xx

lyndyloo58 profile image
lyndyloo58

i was on Lefludomide for two weeks, had to come off them because of the nausea. couldn't keep anything down. hope the nausea goes for you though as its supposed to be a brilliant drug if tolerated.

in reply to lyndyloo58

Thanks Lyndy.

I am sure I will be able to. I was able to eat late last night, and keep it down. This morning I feel fine. I will see how I am after I take the next dose.

Joints are even less painful. Just a bit of tightness in my hands and feet.

It looks like i have a drug that works after steadily getting worse and worse since my diagnosis.

I've had great success with Leflunomide [i.e no side effects] so I would check out the side effects with the rheumy team but if it wears off I would persist with taking it. It's slightly different from the other DMARDs as it's specifically an immunosuppressant - this means that you do have to be careful about avoiding contact with folk who are unwell. Have you read the drug information leaflet? If you don't have one then you can find it online.

Cece x

in reply to

Thanks Cece.

I have read the leaflet, which has made me wonder why I am taking mtx and hydo at the same time when it says it shouldn't be. I suppose they know best, but I will ask about it at my appointment.

I have to admit keeping away from sick people could be hard with five school age grand children.

Happy New year everyone. Let us all be in the best shape possible asap!

JuneRose profile image
JuneRose in reply to

I was just like you but after just over a week things settled down only problem is I cNt get to 20mg a day or I'm too tired to move so take 10 and 20mg alternate days now as it's not 100% I'm supposed to start Mtx on 9th Jan as well as and now scared stiff HAPPY NEW YEAR

in reply to JuneRose

Hi June and thank you.

I am always sleeping so this should be interesting. I average around 12 hours plus a day. I am already taking the other pills, as I was already on them. Have you got a team you can contact before the 9th? I am going to see if I have any luck on Friday.

Happy new year back, and good health xxx

JuneRose profile image
JuneRose in reply to

Was just told to try for 2 weeks and see it's only 5mg I have this fear of being sick I'm wondering if I could take 2.5mg and see how that goes we haven't got nurse at our hospital to contact with any problems x

in reply to JuneRose

How has the leflunomide helped you so far, and how long have you been taking it? When do you see your consultant again?

If it`s any help at all, I never felt ill on MTX, and you are starting on a very small dose. Good luck June x

JuneRose profile image
JuneRose in reply to

Leflunomide has helped but I'm not well controlled because I can't get to 20mg every day never had any real bad side effects but have recently noticed my eye lashes have nearly all fallen out but this could be due to my Thyroid playing up. Hope you had so fab New Year's Eve xxx

in reply to JuneRose

I think you should try the mtx as well then June. Don`t keep struggling. I was told I would be considered for biologics if this didn`t work, so I am sure you will be too, but they will expect you to try to the new regime out first. I have an under active thyroid. If I have steroids, I become diabetic. I think these things all go together. It isn`t at all fair :(

I stayed in with my two teenagers. That`s hectic enough for me. I hope you had a good time too xxx

JuneRose profile image
JuneRose in reply to

We went across the way to one of my 2 best friends she did a lovely meal she is a fab cook like I was until the oven became a problem. It's tipping down with rain here in Surrey tomorrow it should be sunny at least I hope so. I will give the MXT a go but if I have any hair loss I will be reconsidering also if I feel sick will be the same. I had dreadful side effects from Steroids gained 3stone in 10 weeks it taken me over 2 years to lose it I'm going back to slimming world next week I want to lose another 3 stone by September or as much as I can by June 6th my birthday . I don't know how to send a private message so I can give you my number and we can have a chat that would be really nice I get unlimited mins on my mobile and never use them all perhaps you could send me a private message and we can sort this out. Xx

I've been taking Leflunomide for about 5 years now. 10mg. My rheumy gave it me to top up methotrexate 25mls injections. I've never had any bad effects from it. But as Bob says, all DMARDS can have rotten effects. I'm not using methotrexate at the moment, just Leflunomide, but feel that I will soon need something else to help with the pain.

Kath

in reply to

Thanks Poem.

I have been started on 20mg leflunomide, and I take 20mg of mtx and 2 hydro already per day. I was diagnosed nearly 3 years ago, and it has never been under control. I fact, this year it has got worse and worse. That was the main reason I was so frightened of taking these pills. All the health risks for no reason Suddenly it is feeling worth it :)

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