mtx & leflunomide verses mtx and hydroxy: Hi one of my... - NRAS

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mtx & leflunomide verses mtx and hydroxy

lindyloo2018 profile image
12 Replies

Hi

one of my nurses has said I could try leflunomide instead of hydroxychloroquine.

I wondered if many people are using leflunomide and if it was any good, better or worse than hydroxychloroquine ?

people seem to be put on hydroxy and mtx by default, not sure if this a cost reason or a drug reaction reason.

if anyone has any experience with swapping hydroxy for leflunomide and could share that would be great..

many thanks

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lindyloo2018 profile image
lindyloo2018
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12 Replies
KittyJ profile image
KittyJ

if you put leflunomide into the search box and filter for NRAS then past posts about it will come up. Of course what one person experiences will be different to another’s so don’t let those stories put you off 😊

Madmusiclover profile image
Madmusiclover in reply toKittyJ

Agree. Neither suited me but they suit others. We are all different.

allanah profile image
allanah

I was changed from hydro to arava , found it great especially for reducing swelling

lindyloo2018 profile image
lindyloo2018 in reply toallanah

ok thanks, did you get any side effects? did it affect your liver ? and are you taking it on it's own or with other dmards ? many thanks

allanah profile image
allanah in reply tolindyloo2018

Nope no side effects ! Liver function fine . I'm on steroids and Tocozilumab infusions.It really reduced swelling so I'm pleased x

WomanOfFaith profile image
WomanOfFaith

hello lindyloo2018, I’m exactly in the same situation. My dr. Want me to change hidroxy for Leflu and take 100mg per week.

I’m also a little bit nervous because of secondary symptoms especially liver and list of hair 😓

I just wondering in sulfazaline could be a better option 🤔

lindyloo2018 profile image
lindyloo2018 in reply toWomanOfFaith

seems there is only 1 way of finding out and that's to take one of them. I don't think I can take sulfazine because of being allergic to trimethoprim and they are in the same family,

however when I compared leflu to sulfazine on cross interactions on the bnf website, sulfazine seemed a better option than leflu, have a look at the bnf drugs website.

why are you considering coming of hydroxy ?

WomanOfFaith profile image
WomanOfFaith in reply tolindyloo2018

Thanks for your comments I’m going to ask my reumy the possibility to try sulfazine

I have been taking hidroxy for 4 years with no problem but since 6 months now it seems to stop working 😞as I have flares constantly

And you?

Anniebl24 profile image
Anniebl24

I take leflunomide with no problem.

Wannabeabago profile image
Wannabeabago

I’ve been on 10 mg of leflunomide since 2018 and had no issues with it. I’ve had to pull off it twice for various medical reasons and being so grateful when I could start it again.

Good luck

twinner1 profile image
twinner1

I was put on Leflunomide and after about 2 weeks use, my big toe begin to feel as if someone was stabbing it with a knife. Well 7 months later I am dealing with nueropathy. My RA pain went away; however now both of my feet burning, numb, and no doctor could do anything. I am left with taking Gabepentin and numbness and feel like sandpaper is between my toes. I am not happy and wish I had never taken it. It does did help with RA pain but left me with numb, burning feet. . My whole life has changed. Cannot walk my 4 miles like i used to. When i walk just a few minutes my feet swell. Now I wish I had my RA pain instead this uncurable nueropathy.

Kleinrot profile image
Kleinrot

Dear LindyLoo, my husband was actually the one who was on Hydroxychloroquine which was then changed to Leflunomide. Both Medications were initiated by his Rheumatologist. Unfortunately, the Hydroxycholroquine did not make a difference in his arthritis pain so he was put on the Leflunomide. Within two months of being on Leflunomide, he began experiencing these side effects: increased blood pressure, constant scary arrythmias (rapid SVT--he had to go to the ER), decreased immunity: hospitalized for pneumonia (first time in his life) with new suspicious upper lung cells (cancer?), he did get cancer on his nose (had to have a mohs procedure), cancer on his right ear (more surgery), and pre-cancerous cells on his head, his WBC decreased, and his liver enzymes increased. I was absolutely horrified and didn't want my husband to die so we made an appointment with his Rheumatologist and told him that my husband no longer wanted to take the Leflunomide. He agreed mostly because of his lack of ability to fight infection. His Rheumatologist retired one month after the last time we saw him. THIS IS A VERY DANGEROUS DRUG! I read that Public Citizen (a Washington Consumer Watchdog) asked that Leflunomide be removed from the market back in 2002, after 56 hospital admissions and 12 deaths. This so disturbing that Providers would continue to prescribe this drug knowing there are other treatments that are more effective and don't endanger patients. My husband is now only receiving back injections, and has changed his diet to an Anti-inflammatory diet as is doing better than when he was taking all the medications...the side effects stopped and he is returning to normal.

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