|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
I have been taken off Mtx and will go on to Leflunomide instead in the new year. Has anyone had experience, good or bad, of this drug? Have you got any advice? I came off the Mtx because the side effects have been just dreadful for me.
Best wishes from Naomi X
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Hi Naomi
I went on leflunomide as my first dmard as they didn t want to put me on mtx as I have a bit of a problem with my lungs. It didn t really do a lot of good, hence eventually going on to anti-tnf treatment . I didn t have any side effects on it, and I do know many do very well on it, you could go back on the old drug posts, that may help.
Love Julia x
|
|
|
|
Rank: Member
Groups: Registered
Joined: 12/7/2009
Posts: 27
|
Hi Naomi
I was eventually put on lefluomide years after I started complaining about the side effects of the mtx. It has no more or less effect than the mtx but ...... none of the awful side effects I suffered.
Sally
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
|
Hi Naomi - I was on Lef for 6 months when MTX didn't do enough and honestly felt the best I ever have since being diagnosed. I had no pain and had energy! It didn't make me feel unwell, but unfortunately gave me very high blood pressure and sadly had to come off it again.
Hope it works wonders for you too - you need a break and I really hope starting Leflunomide will help you turn a corner. Thinking of you xx Ailsa
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 357
|
Hi Naomi I was on the clinical trial for Leflunomide and remained on it when it became fully available I did well on it with no side effects until it lost it's effectiveness on me after a few years. Hope it helps :) Jo. x 2012 Fundraising for the National Rheumatoid Arthritis Society (NRAS) http://uk.virginmoneygiving.com/RoboJo
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
|
Leflunomide was about the third DMARD I was put on, after failing on the first two. The only side effects I can really remember were hot flushes, but I had to come off it after about 2 months because it played havoc with my liver. That doesn`t mean it will do the same to you, Naomi - everyone`s different. I hope it works for you. Kathleen x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
|
Hi Naomi
as the self styled side effect queen leflunomide gave me NO side effects whatsoever.
no benefit sadly though.
All the best to you on it!
Jenni xxhow to be a velvet bulldoser
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
Thanks everyone. It's nice to know that this drug can work for some people and that it is definitely worth giving it a go. If it doesn't work or the side effects are too bad then I'm sure there will be an alternative to try. Even if it works for only a while then that is something worth having and it's at least another step on the journey to finding my own solution. I feel like I have renewed hope and a new goal to aim for and that in itself has helped me to feel less helpless and more in control X
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
Hi Naomi I have had Leflunomide on two occasions in the last 23 years (poor do when you have to start doing the drug rounds for a second time!). No side effects, whoopeee, but no ruddy good either!!! Lots of people actually do well on it though so good luck! Lyn x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/13/2010 Posts: 118 Location: Shrivenham, Oxfordshire
|
Hello
I have been on Leflunomide for about 6 months. I switched because I was having bad side effects from MXT and no control. I have got on really well with it. I have had the best control of the RA I have had and very few side effects (occasionally I have a "runny tummy" as my Grandma puts it!- but only the feeling of I ought to go to the loo sooner rather than later nothing worse than that).
I hope it works well for you too.
Becky
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
Thanks Becky
My appointment is tomorrow so that was good timing.
Naomi x
|
|
|
|
|
|
|
