Does anyone take Leflunomide (Arava)

aitchratty · 20. Feb 2009, 14:57

Hi,
I was diagnosed with Lupus a year or so ago. I've been taking Methotrexate since then, but my Rheumy just decided that I'm not responding to it, and also that my Lupus is now behaving more like RA,so the plan is to get me onto Rituximab, but first I hae to have failed to respond to two DMARD's so has now put me on Leflunomide (Arava)
I just scared myself witless by looking the side effects up on Wikipedia (and yes, I know, I should have known better!), so I just wondered if there was anyone out there who is taking/has taken Arava and how they found it.
All thoughts/comments very gratefully received!
Thanks

magenta · 20. Feb 2009, 17:48

Hello,
I'm sorry I've not been on this drug. Just wanted to say Hi and I'm sure there will be someone replying soon. I think ther'es been a few posts about this drug already. You can look them up using the search thingy at top of forum pages. Hope things work out for you

Magenta x

aitchratty · 20. Feb 2009, 18:27

Thanks Magenta

I'm new to this site, so hadn't spotted the search thingy! I'll have a trawl through old posts.
- Aitch

skezier · 20. Feb 2009, 19:10

Hi Aitchratty
Not on that drug either but just wanted to say Hi and it's a good site. I hope you find your answers on your trawl. Take care

aitchratty · 21. Feb 2009, 09:22

Thanks for your friendly welcome Skezier. I've found quite a few old posts with some useful info in - thanks!
aitch

mrsdalloway · 21. Feb 2009, 10:01

Hi I have been on leflunomide since last August as I couldn't tolerate Methotrexate. I haven't had any side effects from it although it also hasn't made any difference, joints still crunching and factor still sky high. Am shortly going to appointment to beg and plead for anti-tnf treatment so fingers x'd well I would if I could, lol.

aitchratty · 21. Feb 2009, 11:44

Good luck with your appointment - (I can cross fingers on one hand for you!)
I was fine with Methotrexate - it just didn't work for me. I guess it will be a few weeks til I know whether the Leflunomide is going to work.
Just hoping I can avoid some of the nasty-sounding side effects!

aitchratty · 21. Feb 2009, 14:37

Thanks for sharing that Kath. I take hydroxycholoroquine too and am tapering down from Prednisolone (down to 5mg) - have been on steroids for 18 months so it would be good to get off them altogether.
I'd started to notice some hair loss just recently which could have been the Methotrexate but it can also be caused by Lupus. It'll be interesting to see if it stops falling out with Leflunomide!

Thanks again for your response

roczko · 22. Feb 2009, 15:23

Hi

I take leflunomide and have done for a number of years. I have had no noticeable side effects, however I have an appointment in a week's time with the nephrology department (kidney) at the local hospital as some anomaly has shown up in my urine. The Rheumy/GP wants to know if it's related to my medication.

I also take salazapyrin and lose dose (5mg) prednisolone for RA along with other drugs for hypertension and heart failure.

I'll let you know if it's related to arava

Patrick

gemmapetken · 23. Feb 2009, 06:40

Hi
I have been on leflumide but it made me really ill, still suffering now!
It gave me terrible tummy cramps and illness.

the only thing was that it seemed to really work for me!!

Im on sulpha now

Gemma

pollyb · 23. Feb 2009, 07:56

I started Luflunomide on 5th January this year, I also take methotrexate.

I have noticed an improvement in my arthuritis, (I have PA) but I am having lots of nausia and loss of appatite.

BUT

I'm not complaining as I am despirate to lose weight and have lost over a stone already this year, so maybe its worth putting up with the side effects to help the weight loss.

It's all a vicious circle and I'll take from it what I can.
good luck

Pollyb

kayleighb · 23. Feb 2009, 07:58

Hi!!

I am on methotrexate and leflunomide. I have never had any troubles with leflunomide, was slightly nervous myself because the methotrexate gives me really bad nausea and was worried what the leflunomide would bring on top of that but I can honestly say I have had no problems at all.

I hope that's the same for you

Kayleigh x

aitchratty · 23. Feb 2009, 16:01

Thanks Patrick. I hope that your anomaly turns out to be something minor

aitchratty · 23. Feb 2009, 16:04

Thanks Gemma. I'd heard that Leflunomide seemed to most commonly affect peoples stomachs. Sorry to hear this was the case for you - especially as it was working!

Hope you have better luck with the Sulpha

aitchratty · 23. Feb 2009, 16:08

Thanks Pollyb - good to hear things are improving, in some ways. Like you say, you have to put up with some things to take the benefit of others. Life aint as simple as we'd all like, is it?
Good luck to you too

Pollyb[/quote]

aitchratty · 23. Feb 2009, 16:11

Hi Kayleigh
Thanks for sharing your experience. Good to hear leflunomide doesn't give you any problems. I was fine on methotrexate - it just didn't have any effect on my joints! It's early days for me yet so I'll just have to wait and see I guess!
:roll:

roczko · 24. Feb 2009, 13:04

An update.

Saw the cardiologist yesterday and he would like me to stop taking leflunomide as my BP was high and he thinks it's the cause.

I'll wait and see what happens at the kidney clinic next week before making up my mind what to do.

I did come away from the meeting yesterday feeling it was a stark choice between controlling my blood pressure or controlling the RA :shock:

Patrick

redpoppy · 24. Feb 2009, 14:06

hi,ive been on leflunomide a few years now.been on 10mg a day but rhuemy just put it up to 20mg.ive been on the 20mg for about 5 weeks now,i have had a few stomach cramps but im not sure if its because the dose has gone up or not.my nurse did say it can give you the runs so im hopeing that dont happen.

Does anyone take Leflunomide (Arava)

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