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Date: 30.12.2011
From: Maz

Subject: Does anyone take Leflunomide for RA

I may have to try taking Leflunomide as an alternative to Methotrexate. I have had high readings on the Liver function test while taking Methotrexate. Just wondered what I can expect if I have to change to Leflunomide. My knees are not too good at present. They have offered me steriod injections for both knees, does this help?
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Date: 30.12.2011
From: Teresa

Subject: Re: Does anyone take Leflunomide for RA

Hi Maz :)

I take Leflunomide for PA. It has been great. No side effects and has helped by about 40% I would say :) I also had a steroid injection in my left knee which worked wonders for about 5 weeks. I was dreading the actual injection but it really didnt hurt. Just a pressure. I hope you get on well with the Leflunomide if you take it.
Happy new year
x
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Date: 30.12.2011
From: lynnr

Subject: Re: Does anyone take Leflunomide for RA

I took lefleumide for 3 weeks for pa came out covered in bruises so had to stop http right away.
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Date: 30.12.2011
From: Maz

Subject: Re: Does anyone take Leflunomide for RA

Thanks Teresa and Lynnr for your reply, I hoped that a steroid injection may help for longer than five weeks, still anything is better than the pain.
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Date: 30.12.2011
From: Rachel

Subject: Re: Does anyone take Leflunomide for RA

Hi Maz, I've been taking Leflunomide since September alongside Methotrexate (Meth not working so Rheumy is decreasing the dose slowly). I've just had the Leflunomide increased to 20mg per day alongside 10mg of Meth once a week. My blood results are showing an improvement and generally I'm starting to feel better. Side effects from me are slight nausea occasionally, hair loss (not drastic) and that's pretty much it. We all react differently to these meds but its definately worth a try. If you are wanting a family it does have to be out of your system for 2 years or have it washed out. Good luck, I hope it works for you!
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Date: 30.12.2011
From: Maz

Subject: Re: Does anyone take Leflunomide for RA

Thanks Rachel, did you get any hair loss with Methotrexate. I am really concerned about any hair loss (vanity I suppose) I am at present on 10mg a week Methotrexate and I am still getting a high liver function test and I don't drink at all. I have read that Leflunomide can do something to your liver as well. The nurse said this week that I don't qualify for anti TNF drugs yet (whatever that means) although I am not sure about those either.
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Date: 30.12.2011
From: Colin

Subject: Re: Does anyone take Leflunomide for RA

Maz you wont get any hair loss on low does Methotrexate , for cancer treatment they take high does of it like 100mg, did you ask about taking more folic acid , it will help stop high ALT
mine was about 160 before they put up my folic acid to 6 times a week & back down to normal
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Date: 30.12.2011
From: Rachel

Subject: Re: Does anyone take Leflunomide for RA

Maz, I'm also taking folic acid 6 days per week (except meth day) this does help with the hair loss etc. I have lost a fair bit but had a lot to start with. I would say its probably just me that notices the difference and I think if you look after it with regular trims etc you'll be fine. You don't lose it in clumps like cancer patients do as the dose is lower but it may thin a bit. In the grand scheme of things I'd rather that & keep my mobility/have less pain etc. Leflunomide can also affect the liver and it takes time for the docs to find the right dosage for you. I really hope it helps you, I've started to notice a difference & keeping my fingers crossed it stays that way!
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Date: 31.12.2011
From: mads

Subject: Re: Does anyone take Leflunomide for RA

Hi Maz
I have been on 20mg of lefl. for past 3 months, i had side effects with metx so was taken off it. Other than an annoying itching, i have had no side effects with the leflunomide but i don't believe that it is working as well as the metx did. No hair loss and did have a bit whilst on metx.
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Date: 31.12.2011
From: Maz

Subject: Re: Does anyone take Leflunomide for RA

Thanks to Colin, Rachel and mads, I did ask about taking more folic acid and the nurse said she hadn't heard of taking more would help with the high Liver function test. I will ask her again.
Thanks for your comments and thank goodness for this forum.
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Date: 31.12.2011
From: Colin

Subject: Re: Does anyone take Leflunomide for RA

Hi Maz , is the nurse a rummy nurse , they should know or try to see/speak to a Rheumatology Consultant + what is our Alt reading at the moment

this is worth reading about folic acid
& Mtx
http://nras.org.uk/about_rheumatoid_arthritis/newly_diagnosed/which_drugs_are_used/methotrexate_in_rheumatoid_arthritis.aspx
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Date: 01.01.2012
From: Maz

Subject: Re: Does anyone take Leflunomide for RA

Thanks Colin my ALT reading was 107 and the nurse is a rummy nurse . I am going to ask again about folic acid and will have a look on the internet about it too thanks for your information.
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Date: 01.01.2012
From: chrissy

Subject: Re: Does anyone take Leflunomide for RA

Hi maz ive had both my knees drained 6 times and injected with steroid, its not nice but by it dos the job, as for the tnf drugs you have to fail all the standard drug before they will give you the tnf, im on my 4th tnf drug its called toxicilamab, doing ok, but quite sore know because my next infusion is on tues,so i know im ready for it, i go in hospital once a month for it.
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Date: 02.01.2012
From: Maz

Subject: Re: Does anyone take Leflunomide for RA

Thanks Chrissy, I'm not looking forward to having steroid injections to my knees but if it helps there seems no other choice.
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Date: 02.01.2012
From: Colin

Subject: Re: Does anyone take Leflunomide for RA

Hi Maz , your Alt is high , you can buy folic acid over the counter here in the UK but in low dose so have to take several to make it up to 5mg , worth trying even if the nurse dont give you any more , even if its only 3 or 4 days a week , you will see the results when you have another blood test

gl with the steriod injection , the drain is the worst part of it , it can make a huge differance to the joint
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Date: 05.01.2012
From: Maz

Subject: Re: Does anyone take Leflunomide for RA

Thanks Colin I have bought FA over the counter and will try it.
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Date: 06.01.2012
From: Rachel

Subject: Re: Does anyone take Leflunomide for RA

Hi Maz, have they stopped the methotexate? If they haven't don't take the folic acid on the day you take methotrexte. Take care & hope it helps.
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Date: 07.01.2012
From: Maz

Subject: Re: Does anyone take Leflunomide for RA

Hi Rachel, I still take 10mg of methotrexate (Mondays) and Folic Acid on Fridays waiting to see if they change me to Leflunomide. My ALT since going back on methotrexate has started to rise again. Thanks for your reply
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Date: 10.01.2012
From: Rachel

Subject: Re: Does anyone take Leflunomide for RA

Hi Maz, I'm the same, the Methotrexate has just been reduced from 15mg to 10mg but he's doubled the leflunomide to 20 mg. I'm slightly nervous was hoping to be off the methotrexate completely before he did that but other than the nausea coming back I'm doing ok and the pain is reducing/blood results are showing a normal CRP for the first time in nearly 2 years and my ESR is coming down slowly so fingers crossed it helps you too x
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Date: 17.01.2012
From: Maz

Subject: Re: Does anyone take Leflunomide for RA

Hi Rachel, Its good to know that someone else is the same as me. I have had one visit to see the nurse but waiting to see the doctor to see when I will start with Leflunomide. Does your hair thin with this? thats something I dread.
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Date: 17.01.2012
From: Rachel

Subject: Re: Does anyone take Leflunomide for RA

Hiya, yes it has thinned quite a bit but I've been on methotrexate for a year as well as the leflunomide for the past 3 months. Plus mine was quite thick so I could afford to lose a bit. Make sure you take folic acid six days per week (5mg). Just look after it as much as possible, get it trimmed regularly etc and it should be fine. It just thins out and doesn't come out in clumps. What I would say is I'm really starting to notice an improvement now the leflunomide has been doubled to 20 mg (still taking 10mg of meth with a view to coming off it). So that in itself makes up for any of the side effects. I've managed on just paracetamal the last few days and actually sleeping through the night for the first time in 2 years. I really hope it works for you. Let me know how you get on x
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