leflunomide side effects: I am still having trouble... - NRAS

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leflunomide side effects

Habbeshaw profile image
6 Replies

I am still having trouble with the side effects of taking leflunomide for 12 days. t was a month in the 12th of March since I took any. My stomach feels upset . One day I feel better then the next day I don't. Anyone have this trouble? It kind of scares me when it doesn't go away.

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Habbeshaw profile image
Habbeshaw
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nomoreheels profile image
nomoreheels

Leflunomide is the longest remaining med of any DMARD, it can take at least 6 weeks to lose the effect & year or even two before it's left your body. Surely you were told before starting it, or aware from reading up on it, if not it was very remiss of your team to not explain or provide you with info on it. This is the leaflet I was given to read before I decided to take it, it's downloadable arthritisresearchuk.org/sho...

You'll read there is a washout procedure you can be prescribed, it helps eliminate the LEF from your system quicker. It's called colestyramine & you take it for 11 days mixed in water or fruit juice, or even stewed apple.

If you have severe problems do ask if it's appropriate for you to take. Otherwise another fortnight should see your symptoms ease up if not gone. I was fortunate & just stopped taking it, no symptoms, but it'll be another 18 months to 2 years before it's left my system.

Eiram50 profile image
Eiram50

I’ve been taking it since December and my tummy is still upset- not every day, but most. I also seem to suffer really bad heart burn and am frequently light headed of a day.

Latest blood test showed my liver a bit out of whack but I also take 20mg methotrexate weekly too. I’ll get results of recent bloods, next week and will see what’s happening.

NMH is correct in that you should’ve been warned about the drug, side effects and the wash out procedure, if needed.

I am trying to stick with it and hoping things settle down because if this doesn’t work along side methotrexate- I’m nit sure what’s left?

I hope things feel better for you soon.

Marie

Jesnaskah profile image
Jesnaskah

I had side effects with lef within 2 days of taking it. Neuropathy in my hands and feet. And as the days progressed, so did the intensity and it started to crawl up my arms and legs. By the 8th day, the nerve to tingling in my hands was so bad I couldn't concentrate or sit still. I stopped taking the drug, especially since it had such a long half life and there are studies that show it can cause permanent nerve damage if not stopped immediately (within a month) if you get these rare side effects. It took a good 2-3 months for the weird sensations to completely dissipate. I'm just so glad that it's gone now! But I've had nights where my entire left side of my body is tinglingly. Scary.

I hope your stomach pain subsides or begins to adjust.

Jess

cpetry profile image
cpetry

I only took it for a couple of months, it wasn't good for me, no improvement. I didn't have any problem with my stomach, but I did feel as it worsened my fatigue and the numbness of my hands. What you ask about one day being ok and the following not, I feel it also with mtx.

I think you should give it some more time and let your body get used to it.

SnooW profile image
SnooW

Tummy upset is one of the known side effects unfortunately and in another group I belong to some have said it does ease once you get used to taking the drug, and some have said, like me, they just couldn't tolerate it. I tried Leflunomide for a few months but began to get intermittent sudden diarrhoea which gradually became more frequent so I asked to come off it. I suffer from IBS anyway, and this stuff made it worse. It also gave me red, inflamed gums and a sore mouth, with one large persistent ulcer. The ulcer has gone, the gums are not so inflamed, and the tum has settled a bit. I've been off it about 3 weeks now. On top of that, it didn't work for me and I have just had my highest DAS28 score (6.54) since starting with RA 2.5 years ago. I am sure your tummy will settle eventually but I sympathise as I know when your stomach doesn't feel right, the rest of you doesn't either.

medway-lady profile image
medway-lady

It works really well for me and I'd fight anyone who tried to stop it. lol x But seriously yes the side effects do go and this medication really is worth giving a good go as its not cured my RA obviously but I feel great,

absollutely normal and lead a normal life. With the odd blip usually conindiding with infection and thats not down to the RA but Cylindrical Bronchectastasis which mean lifelong antibiotics. I'm not sure if you've stopped it but it takes 12 to 14 weeks to really work.

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