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Leflunomide

Hi I am new to RA started last November. I have been struggling with methotrexate due to making me feel very low and feeling very sick on it. Starting meflunomide this Saturday is anybody taking this and how has it helped thanks

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Hi Janet,

I had to stop methotrexate because it made me feel so ill and I switched to leflunomide. Leflunomide was so much better! It worked great for me, my arthritis was well controlled and the only side effects were tingling fingers and slight stomach upset - nothing compared to MTX.

The only downside is that I had to stop it this summer (after about 4 years) because of a low white blood cell count - so make sure you keep up with all the blood monitoring while taking it. Good luck, I hope it helps you too x

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Hi thank you for your reply. Was leflunomide enough on its own for you as I've been on 20mg of methotrexate and 4 sulphasalasine tablet two in morning and two at night. What medication are you taking at the moment regards Janet

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Leflunomide on its own was enough for me, but it took a few months until it really kicked in.

I haven't been taking any DMARDs since I stopped it - I was fine for about 3 months (leflunomide takes a long time to leave the body), but now I've started flaring again and I'm waiting to see the rheumatologist nurse and hopefully start on the next one. I'm just taking painkillers at the moment.

Unfortunately it seems that what works for one person won't necessarily work for another, and that people often have to try a few different ones to find the best one for them. Best wishes x

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Hope you don't have to take methotrexate again good luck best wishes Janet

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Hi Katy I'm a week in now in leflunomide so far so good. My right wrist is still swollen and hurting but bearable and both knees bit sore but I was the same on methotraxate. I hope it works in a few weeks but I feel lot better on this so far. Hope you are well and doing ok. If my wrist keeps hurting and swelling doesn't go I am afraid of permanent damage as a woman on this site has damage now even after taking the medication which sucks. Take care regards Janet

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That's great, thanks for letting me know :)

I phoned the nurses helpline ahead of my appointment because I was really struggling, and I've been started on hydroxychloroquine. I'm hoping it will work for me.

I've had RA for 10 years now (I'm nearly 40), the worst was the initial flare when I lived with it for 10 months before I got treatment. I've been told from X rays that there's some damage in my knees, but when I'm well I can walk a few miles, cycle and do pilates, so it's ok. My mum needed both knees replacing in her early 50s even without having RA, so I guess you just can't tell what will happen.

I really hope leflunomide works for you and your joints feel better soon xx

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Aw bless you were so young to ha RA for 10 years. I am 52 and have had this a year now so still trying to get my head around it. You are doing really well. Hope the new medication works for you. I agree when you first start out with this it's horrible so painful the flares and stiffness. It got to a stage for me that I could hardly walk so I guess we've just got to make the most of it and keep going. Take care and thanks for coming back to me

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Good morning Katy hope all is going well with you. When I first started with RA it was really bad in my right wrist. I woke up this morning and the same wrist is really painful it has been hurting for the last week and is getting worse. Will that ease off once the leflunomide gets into my system properly. It will be two weeks tomorrow that I have started them. Guess its too early at the min to predict. I still feel loads better on this though than the methotrexate.

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Hi Janet, if the leflunomide works for you I would imagine it will sort out the pain in your wrist, but I'd allow at least 3 months for it to work. I remember when I started on it I was having a lot of pain in my feet but it slowly got better. Glad to hear it's better than methotrexate at least. I've had a heavy cold this week, so struggling a bit. Hopefully getting better now though. Best wishes x

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Thanks Katy I will give it at least 3 months as it took a long time for methotrexate to work to be honest. I am sorry to hear that you have a cold take it easy keep warm and look after yourself.

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Well, everyone is different, but I've been on Leflunomide for 10 years with no problems, as well as MTX.

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Thank you what is the dose u r on

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20 mg daily.

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U said methotrexate as well what is the dose u have of that please. Did it take a long time for leflunomide to kick in and have u had had any problems with it.

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I'm afraid I can't remember how long Leflunomide took to kick in. I started on 10mg at the beginning. As far as Methotrexate is concerned, I used to have 25mg inections. After a few years, my Liver function results became elevated, so rheumy reduced dose to 7.5mg and I take tablets now.

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I take my MTX via autopen at night just before bed, also take a sleeping tablet. This seems to help me through the rough period.

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I am rough for days with it and seem to be getting worse so that's why I'm trying leflunomide

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Yes for me it really does work well. But it did make the pain worse so be prepared with a hot pad and ice. That was 3 years ago nearly and since then with a couple of minor blips life is normal. I take it at night with a glass of water and best of all its left my hair alone and I feel great.

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Thank you for your reply wonder why it made the pain worse and then better. Do you take it on its own or do you have to take something else as well.

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Are you serious it makes it worse before it makes it better? That might explain all the pain I'm having right now. Cuz I just started this drug about 2 weeks ago and it's like this roving pain that may start in my right foot and then next it'll be in my left knee.

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Yes really bad I rang the NRAS helpine the RA helpline at local hospital. Both said same just try to stick with it. I did and pain just went, one morning woke up painfree, mobile and no fug !

Yea pain moved too one minute left hand then right shoulder then knee etc !

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Not looking forward to being in pain again but will try and work through it best I can. Thanks Janet

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Has it affected your BP? Leflunomide can cause your blood pressure to rise.

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Hi I am having my bloods and pressure checked this Friday so cross fingers

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Blood pressure was fine this morning so far so good.

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I started leflunomide two weeks ago. Was relatively pain free up until yesterday when I went into a massive flare and every joint hurts. I’m hoping it’s the “gets worse before it gets better” thing you mention here!

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It might not be a flare its caleed tenusynovitus or something like that I had that it does go just ask the RA nurse if oncerned otherwise its a couple of duvet days, lots of heat pads, tea and patience really. Try to give it a chance, it does go and is so worth it. This stuff is great for me.

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Thank you so much appreciate it

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I hope u feel better soon. I have been on leflunomide now two weeks today so far so good. I've been told it takes time to be pain free. I feel better on this than the methotraxate. Best wishes to you

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Hi I've been on leflunomide for three and half weeks. My right hand and wrist horrendously painful and getting worse . How are you now

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Hi Janet. Sorry to hear you are hurting. :( I have been on LEF (I hate typing the whole word) for a month. I started 10mg on November 18 and went to 20mg on December 2. I've been on 20mg since then, so over 2 weeks now on the full dose. I don't think I have any side effects from it. I am also on Methotrexate.

I have been in terrible pain for about 10 days. At any given time I have at least 4-5 joints in pain. I am living off of Aleve (naproxen) and it's the only thing that helps. My rheumatologist and insurance company have given me the green light on Enbrel. I haven't gone forward with it though because I'd rather wait and see if the LEF will work for me. I'd sooner take 2 pills every day than inject myself with anything

It might come down to me requiring a biologic though. I will probably give the LEF another month or two and then I will move forward with the Enbrel.

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Aw that's awful ur in so much pain hope u get better soon good luck tho RA is awful x

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How are you doing on the Lef at the min I'm having a really bad flare having steroid injection monday x

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I take with Omprazole to protect the stomach thats all. I think it floods the inflamed areas which causes tendonitus then the body gets used to it and the pain goes. It was agony for several days so be aware but I promise you it did go , and never hurt like that since. The brain fog went as well and it gives me lots of energy too. For me it changed my life from one of ache, pain fatigue and coldness to normality.

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That sounds good hope it does the same for me. Thank you cross fingers

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Hi Janet

You might find the booklet Medicines in Rheumatoid Arthritis helpful at this stage to see what other options may be available and to know what to expect from leflunomide etc.

Regarding the methotrexate are you currently on tablets? Switching to injectable may help to reduce the nausea - take a look at the animation on the topic at nras.org.uk/methotrexate

Call us on 01628 823524 to order your free booklet or email enquiries@nras.org.uk or order on line at nras.org.uk/publications.

Good luck

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Good morning Claire I am on injections of methotrexate 20mg I was ok initially but recently feel so sick for days even the anti nausea tablets don't help and I have gone off my food and still putting weight on which is very strange. Regards Janet

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I have that booklet Clare. It's fantastic'

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It may be possible to reduce your dosage slightly best to talk it through with your specialist nurse. I am guessing you are also on folic acid, some people are intolerant of methotrexate and you may be also. Your nurse or consultant will be able to suggest alternatives I hope.

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I just started this drug myself. I don't think it's done anything for me yet. I don't know if it takes a while or not. I cannot take Methotrexate because when I do my liver enzymes go up. I also get horrible sores on my tongue when I take it even if I use folic acid it still made me miserable when I tried it. My doctor wants to put me on Humira but here in the US with my insurance it would cost me somewhere in the neighborhood of $800 to $1,500 per month. And I certainly could not afford that. So I guess you and I are in the experimental stage. I wish you luck on this drug.

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Good luck with the new drug hope it works for you.

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Hiya Janet. Sorry you've been diagnosed but hope being here helps. I've just had to stop leflunomide because of a rare side effect but if I'm honest I'm not sure it did anything for me but I guess another few months will determine that. I still inject methotrexate & was on a slow taper of prednisolone but remained on very low dose in the hope it will help as I can't increase my MTX dose because my liver objects otherwise.

Many do get on well with LEF so hopefully you'll be one.

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Sorry you had to stop the medication. Hope they get you sorted and thanks for the information.

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Hi I am having blood test and blood pressure checked this Friday so cross fingers all will be ok

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Fingers 🤞🤞 , toes 👣 , & eyes 👀 crossed, janetpritchard. ☺️ 🙏

Don't know if this supplemental DMARD (Leflunomide) info would be of interest: DMARD Infographic: Methotrexate (MTX), Leflunomide (LEF), Sulphasalazine (SSP), Hydroxychloroquine (HCQ): healthunlocked.com/cure-art... 🙏 🍀 🌺 🌞

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Hope all's well today Janet. If your BP is normally ok but it's raised today don't worry & think that's it with LEF, it might not be. Mine didn't settle for about 6 weeks, or the third drug monitoring bloods but after that it returned to normal. It is a common early weeks side effect, this is why it's taken.

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Hi had my blood test done this morning my blood pressure was normal so that is good. Hope all is going well for you.

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Good news. Let's hope it remains that way. I'm not so bad thanks for asking. Received the results of repeat NCT this morning & all's well. Even though I still think the neuropathy was a side effect my Rheumy's still sitting on the fence though has decided that's it for LEF for me & I stay on MTX monotherapy with steroids.

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Hope all goes well with you take care

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Thank you, you too.

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