my Leflunomide diary!

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suzster
suzster Non-active member Posts: 1,328
edited 31. Mar 2010, 12:35 in Living with Arthritis archive
after seeing my rheumy nurse i was started on Leflunomide on wednesday.
so because i know a few of us are looking at starting it, i thought i'd start a diary to let you know how i get on!
i'm taking it at tea time, about 7pm.
1st few days were fine, no problems but since saturday my appetite seems to have gone! i just don't feel hungry. ok, so i need to lose a bit of weight, but it's weird not feeling hungry at all.
i'm still trying to eat as normal but i become full very quickly.
my skin has suddenly become quite dry to. my hands tend to get dry because of washing up alot, but i've had to keep putting handcream on, but thats no bad thing!
not had the terrible runny tummy! but i think my morphine counteracts that side effect!
i'm feeling very cold all the time to, but i'm sure thats nothing to do with the meds!

so, pretty good so far. i'll update this as needed, if any thing else happens!
but if anyone wants to ask anything or anyone already taking leflunomide has any comments or suggestions, feel free to post away lol
sue (who isn't hungry but my dinners ready so i need to eat any way!)

Comments

  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -0001, 00:00
    I wish you all the best with this med, Sue.

    It is an brilliant idea to keep a diary. It makes it all so much easier when working as a team with your reumi and for your own personal use. It is amazing how we forget things so quickly, especially the good, bad and not so good blips we may encounter.

    It is also considerate of you to post your "personal" diary on here too for others who may be travelling down a similar road with the same med.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • lizzie7ne
    lizzie7ne Non-active member Posts: 154
    edited 30. Nov -0001, 00:00
    Hi Sue,

    Good luck with Leflunomide and what a brilliant idea about the diary, It will help others. Thanks for doing this.

    I take Leflunomide, yes I had some loss of appetite at the beginning ( but it settled down)

    lizzie
  • suzster
    suzster Non-active member Posts: 1,328
    edited 30. Nov -0001, 00:00
    i've been up since 6.30am and all i've managed is 2 cups of coffee.
    i keep thinking i must eat but then i get on with something and forget, when you feel hungry it easier to eat than ignore!
    might grab a biccy in a bit!
    seem to have a bit of earache, well i say earache, but i can't work out if it's my ear or my jaw!
    at least, so far, i don't feel sick like i did on mtx, the only side effects so far are loss of appetite and dry skin, i know it's only been 6 days though!
    sue
    p.s.
    thanks for all your comments! x
  • dillydream
    dillydream Non-active member Posts: 75
    edited 30. Nov -0001, 00:00
    Hi Sue,
    I`m on Leflunomide too and have just increased it from 10mg to 20mg daily.
    Today is day four of the increased dose and i`m keeping my fingers crossed as last time i tried to increase it , i felt sooooh poorly i had to keep going to bed.
    Like you, my appetite has disappeared and i also need to lose a few pounds so that`s ok for me too.
    I`ve had problems with very dry skin as well especially on my hands and i`m also cold a lot of the time.
    I haven`t felt any benefit as yet from taking it but as i`ve only been on half the dose since October 10th i`m not expecting to really.
    I will be watching your posts with interest and i hope you find it works for you.
    Take care,
    Dilly xxx

    :):)
  • suzster
    suzster Non-active member Posts: 1,328
    edited 30. Nov -0001, 00:00
    dillydream wrote:
    Hi Sue,
    I`m on Leflunomide too and have just increased it from 10mg to 20mg daily.
    Today is day four of the increased dose and i`m keeping my fingers crossed as last time i tried to increase it , i felt sooooh poorly i had to keep going to bed.
    Like you, my appetite has disappeared and i also need to lose a few pounds so that`s ok for me too.
    I`ve had problems with very dry skin as well especially on my hands and i`m also cold a lot of the time.
    I haven`t felt any benefit as yet from taking it but as i`ve only been on half the dose since October 10th i`m not expecting to really.
    I will be watching your posts with interest and i hope you find it works for you.
    Take care,
    Dilly xxx

    :):)

    thanks dilly, it's interesting you mention you're feeling cold, because i have been feeling the same, i was wrapped up in a blanket last night but still felt cold! i keep checking the heating / room temp and it's really warm in here yet i'm shivering, i thought i was going mad, so thank you for sharing that!
    yes my hands are painfully dry, at the moment i use aqueous cream on my hands, very cheap and no perfume or anything as my skin is sensitive! it's about £2.50 for a big tub, but i'm having to put it on my hands quite often so i might ask my dr's advice on that.

    i'm not expecting any benefits for a while, but the steroid injection i had has hardly done anything, usually i respond well within about 48hrs but had it done wednesday and so far no improvement.
    sue
  • suziev
    suziev Non-active member Posts: 252
    edited 30. Nov -0001, 00:00
    hi sue

    i have to say that on a normal day i always have dry hands and feel cold! :lol:
    also when i first started talking plaquenil i went through a stage of losing my appetite just like you but it did come back, so i hope it does for you too, i know your taking a much strong drug.
    just want to wish you good luck and all the others starting too.
    love suzie x
  • frogmorton
    frogmorton Member Posts: 30,425
    edited 30. Nov -0001, 00:00
    Hi Sue
    Well so far so good eh?
    This was a good idea.
    It will really help people thinking about going on it won't it?
    Hope your appetite comes back too. I also lost mine for a bit when I started on the hydroxy...
    Keep up the good work
    Love
    Toni xx
  • suzster
    suzster Non-active member Posts: 1,328
    edited 30. Nov -0001, 00:00
    thanks for the kind remarks everyone!
    well after a rough night i was wide awake at 4am with a nasty ear ache, a trip to the dr's confirmed an ear infection, just what i needed, not!
    other than that no problems today. i bought some complan from the chemist so even if i don't feel to hungry at least i'm getting some nutrition. and it's worked well. had one for breakfast and one for lunch now i'm going to try to eat something, even if it's only something light.
    sue
  • lizzie7ne
    lizzie7ne Non-active member Posts: 154
    edited 30. Nov -0001, 00:00
    Sue Hope you are feeling better soon.

    I am on a bit of a leflunomide journey too, like Dilly mine was increased from 10mg a day to 20mg a day four days ago. I also take Methotrexate. I think its good you are keeping this diary.

    lizzie
  • suzster
    suzster Non-active member Posts: 1,328
    edited 30. Nov -0001, 00:00
    i was started on 20mg, i wonder why when a lot of you were started on 10mg?
    well a rough night / morning. hardly slept because my ear hurt, woke up with tummy ache and, well lets just say the warnings of a bad tummy came true, sorry!
    feeling pretty rubbish now but i think it's more due to lack of sleep than the meds.
    sue
  • dillydream
    dillydream Non-active member Posts: 75
    edited 30. Nov -0001, 00:00
    suzster wrote:
    i was started on 20mg, i wonder why when a lot of you were started on 10mg?
    well a rough night / morning. hardly slept because my ear hurt, woke up with tummy ache and, well lets just say the warnings of a bad tummy came true, sorry!
    feeling pretty rubbish now but i think it's more due to lack of sleep than the meds.
    sue
    Hi Sue
    In my case i was given a low dose to begin with because i had such severe side effects when i was on Methotrexate and i spent three days in hospital. My Consultant suggested that it would be a good idea for me to give my system a rest before going onto Leflunomide and then to start on half the dose. :lol:
    I`m on day six now of the full 20mg dose and i`m cautiously
    optimistic that i won`t have horrendous problems. ( i get some wobbly moments but nothing i can`t cope with )
    Sorry about your tummy and lack of sleep.
    Keep going with it

    Dilly xx :D
  • lizzie7ne
    lizzie7ne Non-active member Posts: 154
    edited 30. Nov -0001, 00:00
    Hi, I was on 20mg at first, but my BP went too high due to the medication. I already have a blood pressure problem, its normally controlled with meds.I am supposed to keep my blood pressure on the low side of normal (which was quite hard for my GP to acheive without making me tired) as a few years ago I had surgery for brain aneurysms and my Neurosurgeon wants my BP kept low), however, Leflunomide was improving my RA, so they took it down to 10mg, to see if the BP would go down and the RA would still be ok, however, the RA got worse and my BP wasnt improved either. So now they have doubled my medication for my blood pressure and increased the Leflunomide to 20mg again and hopefully RA will be controlled better and my Blood Pressure will be ok. Leflunomide can cause a rise in Blood Pressure and you should be getting your blood pressure monitored by your surgery when you get your bloods taken.

    lizzie
  • suncatcher
    suncatcher Non-active member Posts: 2,174
    edited 30. Nov -0001, 00:00
    Hi suzie i am on this and my blood pressure is a bit high. They have lowered dose and when i had medical for esa they took it and it was slightly higher prob nerves. I have been sent a rheumy appointment even though for feb. I got one for april. I just hope they aint thinking of changing me meds. I am so happy on this one.
    I am wondering if my weight loss was helped along by this drug i had dieted i ate less. at the moment though i have gone the other way and am eating loads. I am still eleven stone still got to get to ten but at least not put the weight back on. I hope this med is successful for you and i like your diary its a good idea. I have read that keeping a journal is a good thing like all the appointments what was said, dates ,meds etc. In future we will for get so i thought i would try keeping one plus adding thoughts ect then i can look back in years to come. keep up the good work all the best from joanne :D
    Joanne
  • suzster
    suzster Non-active member Posts: 1,328
    edited 30. Nov -0001, 00:00
    hi all,
    still struggling to eat much, i have a bit of sickness but not sure if this is due to meds or something else, it easy to blame everything on meds isn't it?

    i still have terrible earache, been using antibiotic ear drops since tuesday but so far it's not improving. i'm panicing that if it doesn't go i'll have to stop my tablets but of course the gp say's wait until i've finished the course (on monday) then if it is still sore try putting warm oil in to soften any wax, because that could be causing them to hurt to. great help when i'm sitting here deaf in that ear and as you all know earache is horrible.
    oh well! blood test and blood pressure test on wednesday, fingers crossed my blood pressure is ok, it was up slightly when it was checked when i started the meds, but i was stressed and tired!
    i'll let you know how i get on on wednesday with the nurse at the dr's surgery.
    sue
  • suzster
    suzster Non-active member Posts: 1,328
    edited 30. Nov -0001, 00:00
    well, her i am just over 3 weeks from starting leflunamide and feeling rubbish.
    i've had earache for 2 weeks and after seeing the dr and completing the course of steroid drops i still had earache, went back to dr's last wednesday and i still had an ear infection so i was started on antibiotic tablets and told if it still hurt on friday to go back, well yesterday (friday it seemed better but then last night at about midnight i woke up with bad earache again. took paracetamol but had hardly any sleep, not just because of my ear, but because eveything hurts. i've got a bit of a cold so not sure if thats causing my joints to hurt more?
    i know i've got a few more weeks at least until i start feeling some benefit from the leflunamide, i'm just feeling really down now.
    i'm going to try to get a dr's appointment on tuesday or wednesday, when sarah's at preschool, that way i can concentrate and tell my dr how i'm feeling.
    i'm tearful and, well feeling like i did when i was 1st diagnosed. alone and jealous of all those pain free people, sounds daft now i'm writing it! i don't want to keep telling people i hurt, don't want to bore them or seem like some kind of hypochondriac!
    oh, well, enough moaning. i'm sure things will get better, after all things can only get better, right?
    sue
  • suzster
    suzster Non-active member Posts: 1,328
    edited 30. Nov -0001, 00:00
    well, had very little sleep last night due to earache, does anyone know if the leflunamide would be stopping the antibiotics working or something? i've only been on it for about 3 weeks, but could it be effecting my immune system already? i seem to have become a so tearful and down since starting leflunamide. emotional, i might even go so far as to say i'm feeling depressed, but it could all be coincidental?
    after all before i started the mtx i felt like this to, like everyone was having a great life except me, still on the plus side i'm not getting any major side effects so thats a very big plus!
    back to dr's tomorrow i guess!
    sue
  • lizzie7ne
    lizzie7ne Non-active member Posts: 154
    edited 30. Nov -0001, 00:00
    Hi Sue, How are you feeling?Did you go back to the doctor? I hope you are feeling better.

    lizzie
  • page35
    page35 Non-active member Posts: 1,081
    edited 30. Nov -0001, 00:00
    Hi Sue
    ive been feeling like you last few weeks like"everyone is enjoying themselfs except me" everything just seems to have got worse lately and i havent changed my meds so dont know why :x :cry:
    i hope you got to doctors and got rid of the earache that on its own is bad enough.
    hope your feeling a bit better
    best wishes
  • snowball
    snowball Non-active member Posts: 3,465
    edited 30. Nov -0001, 00:00
    I've been on leflunomide 20mg for 3 years at first i lost my appitite but it came back also have dry hands and sometimes my tummy is upset.
    julie
    ((((hugs)))) n xxxxx to ya all
  • barbara01
    barbara01 Non-active member Posts: 85
    edited 30. Nov -0001, 00:00
    Hi Sue

    Hope no one minds but I have just bumped this up from Feb....what happened next? Just starting Leflunomide and remembered reading this when you first posted and what a great idea and help to others.......Just need to know what has happened since.

    Hope you dont mind filling me in...thank youuuuuu!

    Barbara x

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