leflunomide side effects advice please

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tracey22
tracey22 Member Posts: 41
edited 1. Jun 2009, 04:11 in Living with Arthritis archive
Hi everyone, I have been taking leflunomide since march 9th and in the last week or so been suffering with abdominal cramps and generally not feeling very well, also it seems to make me more anxious about stuff or maybe its just the fact that i started a new job in march and theres alot to learn which can be quite daunting. Just wondered if anyone else has had any side effects from leflunomide. I am considering withdrawing them and speaking to my rheumy about it.
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  • debsmartin
    debsmartin Member Posts: 209
    edited 30. Nov -1, 00:00
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    Hi Tracey

    I've been taking leflunomide since just after easter, had no problems to start with, but the last couple of weeks have had the runs quite badly in a morning (soz can't think how to phrase it), it settles down as the morning wears on, I'm back at the doctors next week so will have to speak to them about it, I don't get cramps like you so it must be a bit worrying for you.

    Hope things settle down for you.

    debs
  • roczko
    roczko Member Posts: 92
    edited 30. Nov -1, 00:00
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    Hi

    I've been taking leflunomide for a couple of years now with no side effects.

    I did have a bad cough a few months back which I thought could have been due to leflunomide but it turned out to be caused by blood pressure medication.

    Patrick
  • debsmartin
    debsmartin Member Posts: 209
    edited 30. Nov -1, 00:00
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    Hi Patrick

    Glad you said about your cough, I've had a bad cough for the last couple of weeks so I went to doctors thinking it was my new meds but it turned out it was just that, the doctor did have a laugh with me saying that just because you've got RA it doesn't mean you won't get ill. I supose thats part of the problem you expect everything to go wrong all the time and always think its your meds. He did say it was better to be safe than sorry though so not to worry about making appointments.

    debs
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    I have also stared arva or leflunomide and had no effects at first but all this week wake up with stomach cramps and diarea first thing in morn at no other time looked it up on packet it says you can get this with this med but i will mention it to my nurse tomorrow at my appointment. I have been very happy with this med other than this. thats my experiance anyway of this drug if you not happy best to get it checked
    . I feel reasured when i have mentioned my worrys to my nurse just glad im going tomorrow all the best with your prob will let you know what my nurse says tomorrow from joanne
    Joanne
  • roczko
    roczko Member Posts: 92
    edited 30. Nov -1, 00:00
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    Hi Debs

    You're right of course, both we and our doctors have to be careful not to put down any health problems solely to RA (or the medication). I know my doc has been guilty of that in the past.

    Patrick
  • debsmartin
    debsmartin Member Posts: 209
    edited 30. Nov -1, 00:00
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    joanneprice wrote:
    I have also stared arva or leflunomide and had no effects at first but all this week wake up with stomach cramps and diarea first thing in morn at no other time looked it up on packet it says you can get this with this med but i will mention it to my nurse tomorrow at my appointment. I have been very happy with this med other than this. thats my experiance anyway of this drug if you not happy best to get it checked
    . I feel reasured when i have mentioned my worrys to my nurse just glad im going tomorrow all the best with your prob will let you know what my nurse says tomorrow from joanne

    Hi Joanne

    Would be grateful if you could let me know what your nurse says, that is what I'm like in a morning but without the stomach cramps, I don't see my nurse till next week, but will definatley be mentioning it to them then.
    cheers
    debs
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    debsmartin wrote:
    joanneprice wrote:
    I have also stared arva or leflunomide and had no effects at first but all this week wake up with stomach cramps and diarea first thing in morn at no other time looked it up on packet it says you can get this with this med but i will mention it to my nurse tomorrow at my appointment. I have been very happy with this med other than this. thats my experiance anyway of this drug if you not happy best to get it checked
    . I feel reasured when i have mentioned my worrys to my nurse just glad im going tomorrow all the best with your prob will let you know what my nurse says tomorrow from joanne

    Hi Joanne

    Would be grateful if you could let me know what your nurse says, that is what I'm like in a morning but without the stomach cramps, I don't see my nurse till next week, but will definatley be mentioning it to them then.
    cheers
    debs

    I will do debs my appointment is at twelve i will go on foum in evening to let you know what she says best wishes joanne :)
    Joanne
  • tracey22
    tracey22 Member Posts: 41
    edited 30. Nov -1, 00:00
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    joanneprice wrote:
    debsmartin wrote:
    joanneprice wrote:
    I have also stared arva or leflunomide and had no effects at first but all this week wake up with stomach cramps and diarea first thing in morn at no other time looked it up on packet it says you can get this with this med but i will mention it to my nurse tomorrow at my appointment. I have been very happy with this med other than this. thats my experiance anyway of this drug if you not happy best to get it checked
    . I feel reasured when i have mentioned my worrys to my nurse just glad im going tomorrow all the best with your prob will let you know what my nurse says tomorrow from joanne

    Hi Joanne

    Would be grateful if you could let me know what your nurse says, that is what I'm like in a morning but without the stomach cramps, I don't see my nurse till next week, but will definatley be mentioning it to them then.
    cheers
    debs

    I will do debs my appointment is at twelve i will go on foum in evening to let you know what she says best wishes joanne :)

    hi joanne can you also let me know what she says, i am not due back to see rheumy until july.

    thanks
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    tracey22 wrote:
    joanneprice wrote:
    debsmartin wrote:

    Hi Joanne

    Would be grateful if you could let me know what your nurse says, that is what I'm like in a morning but without the stomach cramps, I don't see my nurse till next week, but will definatley be mentioning it to them then.
    cheers
    debs

    I will do debs my appointment is at twelve i will go on foum in evening to let you know what she says best wishes joanne :)

    hi joanne can you also let me know what she says, i am not due back to see rheumy until july.

    thanks

    I will put reply on this thread for everyone to read tomorrow night all the best joanne :):):):):):)
    Joanne
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    The nurse said it was a very common side effect of this drug. but would be concerned if i had had any oher symtoms like weight loss or blood in stools or felt unwell in any way then they would have to change meds but as i have no other symtoms she was not to concerned. If i had any more symtoms to let her know. they were quite pleased with me other wise. I am anyoyed as it is yet another thing i have to contend. if its not one thing its another. joanne
    Joanne
  • tracey22
    tracey22 Member Posts: 41
    edited 30. Nov -1, 00:00
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    joanneprice wrote:
    The nurse said it was a very common side effect of this drug. but would be concerned if i had had any oher symtoms like weight loss or blood in stools or felt unwell in any way then they would have to change meds but as i have no other symtoms she was not to concerned. If i had any more symtoms to let her know. they were quite pleased with me other wise. I am anyoyed as it is yet another thing i have to contend. if its not one thing its another. joanne

    Thanks for that does this mean you are staying on the drug?
    If so how are you supposed to deal with this everyday...

    thanks tracey
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    yes they have left me on it. they have done that before i think they wait and see if things settledown if it got to bad for me to cope with like the cramps lasted all day or if i had more diarear or became unwell they would do something but i get the impession that yeh its common i have to deal with it. but from past experianc i have had side effects with mtrx and they wrote it down on file then only when i got more symtoms and it was obvioous my body hated this drug and i was poorly on it did they change me on that. I just wonder if its a case of wait and see again. i have got the help line number and can phone if i have more problems. I dont feel ill its just very unpleasent every morning. the chemist at the hospital said it was common and was not bothered but they aint got it have they joanne
    Joanne
  • mash65
    mash65 Bots Posts: 834
    edited 30. Nov -1, 00:00
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    hi all,i dont know if its any help.a friend of my has cyrons(sp) disease & her consulant gave her cocodomol for the diahera(sp)runs problem.
    because cocodomol causes constipation it helps combat the runs.
    helps her.i only know that she takes steriods & various other drugs.dont know the names.just a thought.dont know if you can take it with your meds. debsx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Joanne,

    Being nosey and reading your post I wonder if the tablets I have for the same problem with a diff cause could help you? They are called Lomotil and they do stop the cramps and slow other things down if not stop it. It might be worth asking if they could be compatible with your other meds? When my crohn's kicks off they are good at helping! x

    Sorry Debs, didn't see you there. Hey great minds think alike! :D Hope your ok? x
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    I have cocodamol for a painkiller but i only take painkillers if i am to bad a mild ache or pain i ignore but to take em all the time would make the painkiller ineffective as body would get used to it wouldnt it? and crohns disease has gone through my head as i hope it aint that starting. I have a friend with that and it is a very unpleasent disease. joanne
    Joanne
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Joanne,

    Its not the most pleasant thing BUT it is controllable so don't you go worrying........ I tend to do it now by not eating the stuff that kicks it off and if it does start to kick I just go on to rice crispies once a day but the Lomotil is a real must. You see if it is compatible as at the very least it stops the cramps. x
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    The crohns thing had gone through my mind as i have a friend with that. and the cocodamol i only take if really need it i put up with mild aches but if im too bad would have that but to have co codamol all time wouldnt my body get used to that and it would become in effective as a pain killer. I heard from doc that codine is a good sleep inhancer when i had sleep probs. I will try a cocodamol tonight to see if it does do anything with diarear as its worth a try. thanks joanne
    Joanne
  • mash65
    mash65 Bots Posts: 834
    edited 30. Nov -1, 00:00
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    hi cris,just the usual,get on with it.put chin in hell barrow & wheel it around :lol:
    joanne,i was told by physio to take cocodomol & all my meds to the max,everyday.
    yes the body does get use to them,but i'd really like a day without chronic pain.so far ive not had 1,even with meds to the max.
    im due at pain clinic(awaiting app)last chance saloon.
    but i'd take anything to stop the pain,i'd take anything to be able to go for a no2,everyday.but i had the runs when i was on diclofenic
    & that was so bad,couldnt go out for fear of getting caught out. :oops:
    anythings worth a try,perhaps give the cocodomol a few wks it may help beings your allowed to take it.good luck,give it a try. debsx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Debs and Joanne,

    The pain clinic told me the same, take everything to its highest limit..... Diclo has always been kind to me excluding a couple of ulcers I haven't had any of the other side effects.

    I so wish you both had something like my pregabalin...... The first time i took them I had 4-5 hours with no real pain! I had the best day for 20 years and spent it playing with 2 3tear olds! :D:lol: They have helped me so much and debs it might help you as it knocks out nerve pain especially in the back. You both take care, Cris x
  • mash65
    mash65 Bots Posts: 834
    edited 30. Nov -1, 00:00
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    hi cris ive noted that for pain clinic.
    ive read loads about pain releif & so far im not getting a great deal :oops: so im ready for pain clinic,there not gonna know whats hit them when i get there :wink:
    this sites great for information & your all great.
    i also know its hard for some as everything reads''ADDICTIVE''but were not drug addicts,we need pain releif.
    some 1 maybe able to explain that better than me.
    debsx
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    thanks for that both of you nice to hear from you both
    Joanne
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Debs,

    You make sure you run through all the problems and pains with them. I really hope they are as good as the Treliske one, she really has helped me so much........ Though I did agree to a compromise re the amount of lifting and bending I do...... I have more jabs next thursday and have just opened the sheep salon so will need them! :wink:

    I think a lot of the heavy duty pain stuff can be addictive, mine make me trip on the top dose but i am never looking for them and some days i don't take them so I think if you are on them for a reason its very different to the streets. x

    Hi Tracey,

    Sorry we sort of hi-jacked your post but you see if you can have the Lomotil as they knock out the stomach cramps really well. take care Cris

    Its nice to see you too Joanne, when you going to do us a poem? x
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    skezier wrote:
    Hi Debs,

    You make sure you run through all the problems and pains with them. I really hope they are as good as the Treliske one, she really has helped me so much........ Though I did agree to a compromise re the amount of lifting and bending I do...... I have more jabs next thursday and have just opened the sheep salon so will need them! :wink:

    I think a lot of the heavy duty pain stuff can be addictive, mine make me trip on the top dose but i am never looking for them and some days i don't take them so I think if you are on them for a reason its very different to the streets. x

    Hi Tracey,

    Sorry we sort of hi-jacked your post but you see if you can have the Lomotil as they knock out the stomach cramps really well. take care Cris

    Its nice to see you too Joanne, when you going to do us a poem? x

    yes being neglecting my poem duties enjoying the sun and visiting my friend sue in hopital today and been to the pictures this week to see colaline and at park tomorrow as they have got a funday one and were also having a meal out so i have had no time for poetry and me storys still on computor not finished for comp i dont know im slipping skezier and im going to sleep now good night
    and tracy sorry we have taken over your post joanne night all
    Joanne
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    HI i tried mash 65 advice taking cocodamol. I had two last night and woke up fresh as a daisy no cramps and ive had no runs today so and wondered if mash wanted the job of nurse or the pharmacists job at my hospital or skezier or both one could be pharmacist and one could be my nurse! hope this advice helps you tracy and debs.
    all the best joanne
    Joanne
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Um........ Joanne I'd be a lousy nurse......but would have the best intentions....... :lol::lol: As to your pharmacist well you'd end up having metacan and white oils for your joints and other animal treatments! :lol::lol::lol: Glad it worked for you though, sometimes you have to take the stuff prescribed I guess to help make other prescribed stuff work better eh? If it happens again ask about the lomotil cus its good stuff and works. Hey get that done and submitted before the end of June. :D x
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