Leflunomide

[Tennismad]

Does anyone have experience of Leflunomide I was taken off MTX as I had developed pre cancerous cells in my mouth and having three operations to remove high dysplesia the Rheumatology Consultant as suggest I use Leflunomide. As you can imagine I am scared to use anything else but I am in agony with the constant pain.

Thanks

[Eiram50]

I have been in leflunomide for 2/3 years and had no problem with it whatsoever.

Wishing you the very best going forward x

[springcross in reply to Eiram50]

Does it increase your BP Eiram? A couple of weeks ago I had a conversation with the Rheumy nurse about MTX side effects after increase and she mentioned that because I have problems with my BP, I wouldn't be able to have it.

[Eiram50 in reply to springcross]

Yes, it can affect your BP - I’d can make it a little erratic. Interestingly though, mine is fine until I have to come off it for surgery, then it goes a bit high. Once I’m in it again, it’s fine x

[springcross in reply to Eiram50]

Thanks. xx

[Tennismad in reply to Eiram50]

Thank you so much I’m going to give it a try . Stay well.

Thanks

[Eiram50 in reply to Tennismad]

It had been helpful to me and I think we just acknowledge that all the meds we take, carry risks and it comes down to risks and benefits, doesn’t it?

I really hope that it is a success for you. Good luck and you stay safe too x

[medway-lady]

Its great, worked well but due to kidney problems I'm now unable to take it. I loved it, it changed my life.

[Tennismad in reply to medway-lady]

Thank you. Hope you keep well.

Thanks for replying.

[Hidden]

I've been on Leflunomide for 8 years, both by itself and with MTX. It works as well as MTX but the only side effect I've had, is a rise in my blood pressure.

[Tennismad in reply to Hidden]

Thank you for replying I will give it a go. My blood pressure has always been constant so we shall see.

[charisma]

It worked very well for me, and as long as I got adequate exercise and activity, BP stayed normal.

It tended to give me very very dry skin, slight dry cough.

I would still be on it but it just stopped working for me after four months.

[Tennismad in reply to charisma]

I’m sorry to hear that but hope you have found a better solution.

Thank you for your reply

[Scocl]

I was originally methotrexate and I just could not tolerate it, constant nausea and was very negatively affecting my mental health because I felt SO awful. Moved to lefludomide and it has been a complete and utter game changer for me. I am already medicated for high blood pressure so my rheumatologist was originally nervous. My BP was taken every three weeks first of all. Absolutely fine, then taken every four weeks, then 8 weeks and it has stayed in the normal range. Like methotrexate you are regularly monitored in terms of bloods but it has been life giving to me, after methotrexate for me felt like it was 'life taking'. My consultant said there are a small Of people who just can't tolerate methotrexate...... And that is me...good luck

[Tennismad in reply to Scocl]

Thank you ever so much I will take. Fingers crossed

Thank you and stay well x

[Scocl in reply to Tennismad]

You too, and goof luck with it x

[cyprusmum in reply to Scocl]

I concur. Methotrexate for me , on the short time I tolerated it, was awful. I felt so ill on it. Having read how wonderful it is for RA , I felt a bit daft saying I don’t want to take it. However, some folk get on fine.

I’m also in the same camp of moving over to Lefludomide. Change is always hard, but listen to ‘your ‘ body and go with what helps you. Be vigilant!

Body and Soul!

[Tennismad in reply to cyprusmum]

Thank you Body and Soul let me know how it goes.

[lucymead]

Sadly not good for me. I was on it for 3 Years and had to stop due to Palpitations and severe Diarrhoea. I have since been diagnosed Collagenous Colitis. I had no idea that staying on it would produce that result.

All of our Medications come with Risk we have to make some awful decisions about our lives because of this disease. Do what is right for you now but always report any strange or painful happenings while on any Medication. Best wishes

[Tennismad in reply to lucymead]

I am sorry to hear about your experience I hope you recover well. Having had a really traumatic experience before I want to avoid any further complications but I have to balance that with getting my life back . Thank you and I will report any bad side effects.

Many thanks for your reply. Stay well

[AgedCrone]

I was put on Leflunomide after Mtx, having had both breast & skin cancer.... My rheumy had assured me it was a safe Dmard for cancer patients.

I had no obvious nasty side effects, but after a few months I had to come off it because of a rare - but known - side effect.....it completely took away my appetite....I lost about 15kg in 3/4 months.

I could have gone days without eating if I hadn’t set an alarm to remind me to eat ....but it did control my RA......so probably worth a try as my rheumy said he rarely saw this side effect & quite a few here do take it successfully.

Good Luck!

[Tennismad]

Thanks for that I hope you are feeling much better. Stay well

Thank so much for your reply.

I will give it a try.

Margaret x

[Beviejon1]

Have been on it for 3-4 years.No comp!Sony's it has helped me.Good luck!

[Tennismad in reply to Beviejon1]

Thanks for your reply il give it a go fingers crossed

[Kariss]

Hi, I was moved from mtx (which sort of works for me) to leflonomide, just to see if I could get a better result but unfortunately it gave me severe stomach pains and upset tummy from day one. After 6 weeks I went back to methotrexate as it was affecting me so badly. However I do have alsohave IBS so it may be completely different for you. Best idea is to give it a try and see. Hopefully it will be great for you! 🤞🏻

[ROBERT_CARMICHAEL]

I took leflunomide in the 1980s and have bitterly regretted it ever since as it badly damaged the sensory nerves in my lower legs. The pain isbearable but the sensatins in them I find most unpleasant. Do not be too put off by my experience as any drug can have unpleasant side effects.

[Tennismad]

I’m sorry to hear that. I’m confused as to what to do but Haven taken a year and a half of all medicines I need to take something as corrosion in my wrists now.

Thanks for letting me know and stay well

[Justanothermama]

I was put on luflonimide after mtx. I prefer it. It’s similar to mtx, according to my doc, but I don’t have the strong side effects like I had with mtx. I prefer it. Good luck! Hope it works for you!

[Tennismad in reply to Justanothermama]

Thank you 🙏

[Mymymy]

I had a severe allergic reaction after taking Leflunomide for 13 days - rash on whole body, lupus like butterfly redness on the face, extremity pain (swelling capillaries), chills, and fever feeling. Had to stop taking it immediately.

[Tennismad in reply to Mymymy]

Thanks for making me aware of side effects if anything problems I will stop immediately. Hope you are over the side effects now.

[Sali61]

Thanks for putting the question out there as I too am struggling. Asked to be taken off MTX after about 6 years use. Experienced two years of calm on Biological alone, then the joint pains came back and on Leflunomide for 4 months. Suffering from sore throat, red bumps on back of tongue and diarrhea. As my husband is so ill cannot cope with the continuing symptoms and come off Leflunomide. Will try to let the Rheumatoid department know, but waiting for GP to ring and perscribe some direct help. As if life isn't hard enough with RA. x

[Tennismad]

Thanks For letting me know. I hope you find a solution soon that will make you feel better. I have only taken 3 20mg tablets so will just have to wait and see . Many thanks for your reply hope you feel better soon xx

[Hessie5]

Hi - Hope you are well. I have been on Leflunomidd for about 3 months now. I take 10mg everyday. I take it with my biologic. It has been ok so far. Both my meds just keep things at ease.

What dosage have you been prescribed?

Hessie ☺️

[Tennismad]

I’m good. I have not taken any meds for nearly two years and now noticing my joints sore and I have corrosion in my wrists so I have been put on 1 20mg a day. So far so good. Thanks for your reply stay safe