NRAS
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New Drug

I took lefunomide 10 mg for two weeks then had stomach problems and felt like I was burnt from my throat all the way down. I had bouts of nausea and headache too. I also had a cough. RA Doc. said stop taking it. Now I have to drink lots of water and be patient. This drug can stay in my system for three months. So much for trying a new drug. What is worse the disease or the drug???

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In my own experience I think the drug is worse. I started it at 10mg in October, and after a month went up to 20mg, then from about Christmas onwards I began to get intermittent diarrhoea which became more frequent/urgent. I began to get 'heartburn' too, something I never get as I take Lansoprazole every morning, and then I noticed output was very dark coloured. Stopped leflunomide last week and am on nothing now - output is back to normal and I can only assume the leflunomide was the cause of some internal bleeding. (I do have a small sore area in my gut.) I read that leflunomide can take up to two years to leave the system. I am hoping it doesn't give me any further problems nor for you either. For me it didn't even work so not sorry to see the back of it.

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i was started on leflunomide 10mg to replace sulphasalazine i suffered with diarrhoea right from the word go. Next appointment inc on 10mg increased to 20mg despite I had diarrhoea. The diarrhoea increased. had no control so i didnt take on the days i worked. next appointment reduced to 10mg after a month changed to every other day. told to stop in october.

This my story

matilda

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Thats awful how you were kept on it for so long despite the tummy problems. I hope your next meds are a lot more suitable!

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LEF really works well for me. Love it x

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I started LEF on 2/14 and I'm having bad acid, sore throat, heart burn. I also have sore on tip of tongue. Switched from MTX because of mouth sores. Are others having acid issues with this drug? Also, pain is terrible, so confused.

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I had to get off it too many side effects

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Also this drug can stay in your body up to three months. I only took it for two weeks then came all the side effects. It made me really sick. Where is my RA doc. on vacation for three weeks.

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I too got a generally sore mouth, and an ulcer which took a while to go. My mouth is still sore with very red top gums even tho am now off Lef. Still getting some feelings of acid - I think it has aggravated a sore area I have in my gullet.

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That’s interesting. I am on this too and my consultant warned me that if I have to come off it, it needs to be washed out my system for 11 days- it is something ( I think ) that has to be drunk, but not water??

What was the advice you were given?

Marie

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Ive heard about the wash out but my rheumy hasnt mentioned it to me at all. Not sure why, or if i should ask her....

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That’s strange isn’t it? It was one of the first things that mine said to me so I assumed this was the case for everyone taking it?

I take enbrel ( biologic) weekly, methotrexate , arcoxia and leflunomide; could it be something to do with the mic? None seem to do much and still constantly flaring- nothing appears to get things under control!

Marie

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Maybe because I was only on it for 4-5 months it doesn't take so long to get out of the system as with long term use, I don't know. I won't be starting my new meds till funding is approved so am not on anything at the mo and perhaps she thinks it won't hurt for some Lef. to still be in my system. I really have no idea - I'm just guessing! Yes maybe when on a mix of DMARDs and biologics perhaps that is why you would maybe need the wash out. Sounds horrible tho?!?

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I dint know, I’m hopeful I may escape it now?!

Best of luck with the new meds.

Marie

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Thank you!

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Taken from Arthritis Research."Leflunomide can remain in the body for up to a year after you stop taking it.

In some circumstances it's recommended that leflunomide is eliminated from the body more quickly for example if:

you become pregnant

you have severe side-effects from leflunomide

you need to start another treatment that could interact with leflunomide.

A wash-out treatment will help to remove leflunomide from your body more quickly than usual. This involves taking a drug called cholestyramine for 11 days. You may have blood tests to check that the level of leflunomide in your body is falling"

arthritisresearchuk.org/art...

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Loads of folks have had positive results with it but I had a bad experience with leflunomide too. I was on it for 7 weeks, after 2 I had bad stomach and toilet issues but it was helping with the RA symptoms so I was sticking with it but by week 5 I developed skin problems. It looked like a pregnancy mask kinda tan all over my face and a not so lovely dappled effect on my neck!

I stopped the drug and it continued to creep around my neck for another few weeks and then stopped. I at last saw a dermatologist who says post inflammatory pigmentation probably a combo of drugs and condition. M x

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Crikey, that was quite extreme! :(

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This is Habbeshaw again. Yesterday visited ER couldn't stop diarrhea. I took leflunomide instead of mxt. bad side effects

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