Hi all...just wondering if any of you have been on this DMARD yourselves and how you have found it. I have only been on a few days but all seems to be going well at the mo......Apparently I will still have methotrexate in my system for six weeks too but I had to stop this as made me feel as though I had been steam rollered over my body the day after taking it.
I'm not taking this for granted and fearful of saying all is great but today I have been for a swim and attended slimming world. Been too knackered for months before what with regular flares/kidney infection so it's lovely to have a 'good day'. I would be interested to hear if any of you have tried this DMARD?
Hope you all have had a 'manageable day' too xxx
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mstr
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Hi mstr. Haven't been on here for a while as moved house, been crazy!
Fab news that you changed meds! Used to feel like that too on methotrexate and since coming off of it I felt much better. Glad you doing ok on liflonomide, really hope it works for you.
Hi Jo....thank you I will keep you posted. Don't want to get hopes up or too cocky as we know how it goes.....but so glad to have had some better days recently. Hope the house move went well....that's stressful in itself. I did ask for mycophenolate as so many of you had suggested but my rheumy advised that leflunomide was better for my symptoms of joint and muscle issues.
Anyway thanks for your support and I hope you are very happy in your new home xx
Thank you mstr. was stressful but very happy, was relieved lupus was kind to me, couldn't believe what I was managing to do! It's great having good days isn't it? Hope they continue really good luck with it. Great that you have had no side effects or anything so far.
Thank you Misty Yes...now I can look back and say it seemed a rough few months (Since October really) with one thing and another). I think when we are feeling a bit better we can think more clearly. As my husband said next time I will try to be less stoic and perhaps phone the rheumy nurse earlier and ask for a change of meds.....Err why I didnt do that before I never know lol. xx
Having my morning cuppa, and your post has made my day! So far so good: hooray!
Sorry, i know nothing about liflunomide, so can't say anything personal about this Rx. No doubt you've already googled it etc, but just now I googled liflunomide and read what arthritis research uk has to say about it: sounds a good bet, well worth trying!
And am so glad you're off methotrexate: between your and Joanne's posts, I'm extra wary of this Rx, and extra glad I'm having a go with mycophenolate (over a month in, upped to 1000mg/day last Friday: cautiously pleased with significant positive effects already, even though (and apparently like liflunomide) benefits are said to appear gradually over some time)
Hope you get replies from some who are on liflunomide....I'll be v interested to learn how others react on it
Aw Morning to you Barnclown I'm having my morning cuppa at 11 am as this med is even allowing me to sleep so soundly (terrible getting up at this time but after months of a few hours sleep a night I'm just grateful at the moment). Yes it does seem ok....I think it came out in 1998 1999....the only thing I saw on wikepedia was that it has been said it is a carcinogen? Who know though.....at the moment it is working and I like being in 'the present'. Of course there may be changes as it apparently takes six weeks for the methotrexate to be out of my system so I will wait and see how that affects things. Rheumy said that she can increase the dose from 10mg daily to 20mg daily though if the present dose is not effective enough. I don't know about you but I try and not increase the dosage unless I really have to .....as sometimes I think if it is working ok I don't want to over do it and risk anything. I do think your body lets you know.
I'm so happy that your mycophenolate is working well for you too.....this is lovely news. Hey....we will all be skipping into Spring at this rate.
I guess because of what we all go through we keep a little bit cynical because we don't want to get our hopes dashed. So whilst I a rejoicing about how lovely it is to have some normal days and repeating it to my husband continuously (I think he can switch off a bit thank goodness) I kind of also prepare for that day when a flare happens and you have that "Oh no....I thought it was all under control". Sorry that was a really long sentence but my brain is obviously not in gear yet ...maybe a coffee will do it.
Here's hoping we all continue to do well on our new meds... I will raise my morning coffee mug to you all and thanks to you all too xxx
I've been on leflunimide for a few months now and things are improving! I was on methotrexate for 10 months and did nothing but make me sicker. Then went on azathioprine for 5 months ... now on aza and leflulinmide. Doing better than I have in years
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