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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010 Posts: 271 Location: hampshire
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Hi all, have finally after lots of phone calls managed to track down my prescription for leflunomide which has apparently been sent out on Tuesday. I know that this drug can cause side effects and wonder does anyone who takes it have any advice on how to minimize them ie is it better to take at night etc etc??
Many thanks hope all ok with you all
love Heatherxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010 Posts: 576
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Hi Heather - I started 5 weeks ago. I have had about 4 dreadful headaches but they seem to have eased off the past 2 weeks so hope it was just a getting used to it type of thing. I tried mine in the morning but it made me very sleepy and lethargic. I started to take it in the evening with plenty water and it seems to have been ok. I have just gone up to the 20mg dose this week.
It seems to be working though. I have some of my energy back and esr is down to double figures at last. Hope you find it workd well for you too - let us know how you get on with it XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Good luck of leflunomide - I started mid june but after 4 weeks i had to stop as had awful migrane heads. I am waiting to see the specialist again
Good luck
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 59 Location: North Bucks
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Hi
I have been on Leflunomide for over 3 years, no problems and its been an effective drug for me. Remember a bit of Nausea at the beginning but thats all.
Lately l have had raised blood pressure but not too bad and Telmesartan controls it without problems.
I am on 20mg and take it in the mornings, haven't noticed it being a problem with drowsiness etc.
Good luck and let us know how it goes.
Christine xx
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Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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I took my last dose of MTX Sunday and I have a fat bottle of leflunamide in my bag.
I forgot to ask the rheumy nurse today when I should start taking the leflunamide. Does anyone have any ideas? Should I start immediately or wait until a week after the MTX?
ps I can never get through to the 30 minute helpline at my rheumy team!
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010 Posts: 576
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Hi Heather - I started mid way through the week with Leflunomide when I stopped MTX in July. However, I have had to go back on MTX now as well, so it must be ok to take them together. I take both at about 8pm, so on Monday's I take MTX and Lefl together. It seems to be no different to taking them separately, so hope you are ok with the switch over. Good luck XX Ailsa
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010 Posts: 576
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Sorry Mairead - put Heather by mistake
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi
I had no probs on the leflunomide at all. Didnt work either sadly. For some patients it seems they get upset tummy so prob best to start it one evening with a day that doesnt have much on in case that happens to you.
Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010 Posts: 271 Location: hampshire
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Hi Mairead, I take mx and leflu together with minimal problems really. I started taking mine with my evening meal as I had read that it could upset your tummy so thought that taking it nearer bedtime was a better idea. Apart from initially feeling nauseous its fine now and definitely worked for me within a matter of 3-4 weeks!
Good luck, hope all goes well.
Heather xxx
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Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Thanks all. Just moving past week 1 on the Lef and nothing's happened. No side effects other than I've flared p again. Hands are pretty bad and having to go back on painkillers 24/7. Hot flushes returning, symptoms spread back to knees and especially wrists and feet. I just hope something starts to work at some point in my life. I'm trying to stay positive but it's getting increasingly difficult when nothing ever seems to work.
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Rank: Advanced Member  Groups: Registered
Joined: 1/3/2010 Posts: 44 Location: Horsham, West Sussex
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Hi Mairead
I understand your frustration. I'm on 25mg MTX (2 years) and leflunomide now for 3 months, the time by which my rheumatologist said it should be working properly. It has made some significant difference but not as much as I'd hoped and now my BP has shot up. Don't you just get sick of having your life revolve around medications which turn out to be a disappointment? Rant over. Hope your flare-up dies down soon.
Kathryn x
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010 Posts: 271 Location: hampshire
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Hi Mairead, so sorry to hear you are feeling so poorly, I really hope this leflu kick in soon, I agree totally with Kathryn having to rely on tablets all the time is draining and annoying!
If you;re anything like me you want an instant result from the tablets, and unfortunately they dont work that way as well as having unprounancable names as well!!
Take care and hope you feel better soon.
Heather xxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010 Posts: 102
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Interested to hear about raised BP and hot flushes. Before being on Leflunomide my BP was normal. Since taking it, it has risen so much that I now have to take BP tablets. I too, have extreme temperature changes, which I believe are a side effect of leflunomide.
Anyone else suffering these side effects? Beth
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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My B/P went up on Leflunamide some years ago and it didn't come down when I stopped it! It is a listed side effect.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Beth I have been on lef. for 10 months and it hasn t controlled the RA, I am now adding infliximab to try do the job! I think that lef. has caused hot flushes, especially if I have eaten a hot meal, would you believe - so bad I ve had to use the hair dryer. It also happens if I do vacuuming etc. ( which isn t as often as I should ! )
Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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How are you getting on now Heather? Any more results? Thanks for the kind comments everyone and sorry to moan. If anyone understands I know you all do Well so far no side effects but things do seem to be settling down a bit. I've gone from 24/7 pain medication to as and when needed. My one finger is still very badly swollen but isn't as painful and angry and red as before. I brought my nurse consultation forward by 2 weeks as I was in so much pain last week but now I'm considering moving it back to the original date. Whether that's the Lef or sheer coincidence (I am pretty unpredictable with my flares) I don't know but to be honest I don't care. I'm just glad not to be in so much pain! Regarding hot flushes I had them something vicious last year before I was diagnosed. I thought it was my age (46) but apparently not. I flush terrible (dripping sweats) during a flare and so seeing as Im flaring at the moment I don't know if it's the Lef or the flare causing them. As for BP it's early days yet. I have textbook or even low BP usually so I'll watch it with interest.
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