Change from mtx to leflunomide......: Any and all... - NRAS

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Change from mtx to leflunomide......

Tintoy43_ profile image
11 Replies

Any and all advice, wisdom, or comments are accepted. Because of the shortness of breath which occurred after only 6 weeks on the mtx the Dr has switched me to the Leflunomide. I can read the printed info but want the real life info from you guys. I am still new and have been at this for 8 weeks. I'm learning but a lot of you have helped so much just starting out I thought I would reach out to you again. Any info on this change is greatly appreciated!!!

Thanks

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Tintoy43_
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11 Replies
AgedCrone profile image
AgedCrone

i found Lefunomide took away my appetite completely....so do watch that. I lost a lot of weight before I realised.

Hope it works for you, many on this site have been on it very successfully for years.

Tintoy43_ profile image
Tintoy43_ in reply toAgedCrone

Thanks for responding I will pay attn to that. Bless you

AgedCrone profile image
AgedCrone in reply toTintoy43_

I do hope the Leflunomide works for you ......it's a shame you couldn't tolerate Mtx...I was lucky & took it for 7 yrs & was 90% painfree...but all good things come to an end, now on RTX & so far so good.

Tintoy43_ profile image
Tintoy43_ in reply toAgedCrone

Yes I was hoping it would work too. Oh well we start over and hope it works!! Thanks for responding!!! Glad you are good!!!'

medway-lady profile image
medway-lady

I've been taking it for three years no problems. I take a t night and it does take a long wile to work (12-14 weeks) at first side effect was only it hurt worse then that pain went and I was in remission. Great med ! x

penny106 profile image
penny106 in reply tomedway-lady

Hi, I have been taking it got 3 years. Side effects for me were weight loss, easy bruising. Did bother my stomach at first, I learned to eat a meal before taking it. Wishing you the same good luck on it

Tintoy43_ profile image
Tintoy43_ in reply tomedway-lady

Wow great news!!! So glad for you! Maybe it will do the same for me! Thank you so much.

Tintoy43_ profile image
Tintoy43_ in reply tomedway-lady

Wow what a positive! Needed that! I am thinking about the night thing...thanks for inspiring me.

Tintoy43_ profile image
Tintoy43_ in reply tomedway-lady

Thanks for sharing your experience with me. Best to you this holiday season. I will post updates.

nomoreheels profile image
nomoreheels

I stopped leflunomide 6 weeks ago after taking it just short of a year. Unfortunately I had a rare reaction which I queried with my GP who thought it worth checking out & then my Rheumy who wasn't convinced but as LEF wasn't doing an awful lot was happy for me to stop it & see. It caused neuropathy, specifically peripheral neuropathy & carpal tunnel symptoms confirmed by a Nerve Conduction Study (NCS). My hands were affected enough that my Occupational Therapist gave me a pair of splints which did ease them somewhat. As I say I stopped LEF about 6 weeks ago & the symptoms have eased, the CT symptoms virtually gone I can manage without the splints. I had repeat NCS on Tuesday plus electromyogram (EMG) done by the same Neurologist who confirmed improvement. I'm telling you this so you're aware as LEF takes a long while to leave the system once it's stopped, although there is washout procedure that can be given if you need to get it out of your system quickly. I remain on MTX & low dose steroids & see where I go from here at my next review, unless I start to go downhill.

Tintoy43_ profile image
Tintoy43_

I am praying for you. I know the rare side effect thing as I had one on the MTX. Shortness of breath wasn't pleasant. Took me off it right away. Thanks for the insight!

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