Any one tried Leflunomide or its called Arava

suncatcher
suncatcher Member Posts: 2,174
edited 4. Apr 2009, 08:32 in Living with Arthritis archive
Hi everyone ive been taken off Methotraxate completly and they are trying Leflunomide or Arava anyone any experiace of this drug and how soon will it really work. I am concerned as they are taking methotraxate off me completly when the drug leaves my body i will suffer a relapse and go back wards a bit. thankyou from joanne

Comments

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

    I take leflunomide along with sulfasalazine and my RA seems reasonably under control. Also take a low dose of prednisolone.

    I hope it works for you. I was put on this combination after being taken off methotrexate.

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

    I can't offer any help but will be reading your replies with interest because my docor has just added Leflunomide to my methotrexate, I currently take 20mg of methotrexate and am waiting for next week when I go to see the nurse to have leflunomide added to it. The doctor says the aim is to reduce the mtx unfortunately still waiting for this to happen as it has just taken 4 weeks to get an appointment to see the nurse!. Doctor said it does work quickly though he said about 4/6 weeks so here's keeping everything crossed. Keep us posted how it works

    debs
  • lyndagodbeer
    lyndagodbeer Member Posts: 10
    edited 30. Nov -1, 00:00
    Hi Joanne,
    They took me of the Methotrexate too and put me on Leflunomide. I had a steroid injection to help while waiting for the Leflunomide started to work. I had the injection becuase of a possible relapase. It took about 2 months for the leflunomide to start working. I am also on Arcoxia.
    Lynda
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
    I have taken the first dose today they gave me a steroid at christmas so i dought they would give me another so soon. they took me off mtx because of infections and my body cannot tolerate the high dose i need to control arther. they left me on 10mgs for a few months and i hoped they would add arvia to it but they said they would take me off now and reintroduce later. i just hope it works well and i have no side effects this time and my body does not relapse. will keep you posted how i get on thankyou all for replying to me. from joanne :):)
  • lyndagodbeer
    lyndagodbeer Member Posts: 10
    edited 30. Nov -1, 00:00
    Hi Joanne
    I too was put on it because methotrexate was causing me problems,It was affecting my liver. So far I have not had any side effects from the leflunomide. I have been on it since August. Check with who ever gave you your steroid injection as if I remember rightly you can have them after 3 months if you are having problems.
    Lynda
  • ifeelninety
    ifeelninety Member Posts: 57
    edited 30. Nov -1, 00:00
    I started taking Leflunomide in Feb, after trying both MTX and Sulphasalazine - both of these caused my white blood cell count to fal so was taken off them.

    I dont really feel any benefit of it yet - been feeling rotten the last few weeks - got a steroid injection when I started it as I wasnt given the loading dose so it may take longer to take effect. I also feel as the steroid injection hasnt been as much benefit as usual this time either - usually I feel great for about 3/4 months, This time felt good for a couple of weeks.

    I am hoping it starts to kick in soon as it gets you down feeling rotten all the time -I have 2 children and feel as if I spend all my soare time in my bed and am still shattered.
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
    I will ask the hospital if i could have a steroid if i do have problems i know they are careful with them. I have only had two steroids the first made me feel brilliant the second did not last so long and i had very bad mood swings i suppose it is differant each time.
    I will be hopeful of some good news i know they said if this drug dont work its back to the drawing board with me. I hope it does some good will keep you posted on it. from joanne
  • kellis
    kellis Bots Posts: 69
    edited 30. Nov -1, 00:00
    Interesting!
    I was taken off Methotrexate in Feb and put on Arava. Didn't notice much difference for the first week or so, but since then I have had pain in some part of my body or another constantly, particularly upper arms/shoulders or hands which is worse at night and gives me trouble sleeping. I've had no other medication to support the 'change over' period, although I've taken paracetemol when needed.
    I have a hospital appointment on Monday and will discuss the wisdom of this decision!
  • polly24
    polly24 Member Posts: 34
    edited 30. Nov -1, 00:00
    hi i have been on mtx and leflunomide for over 2 years with no side effects but a month i had a very small stroke the doc said it was my meds but rheme doc that it could not have been the mtx and lef but who do i lisen too am afrid to take anything incase it happens again the doc i saw at hospitial said i was not a risk factor as dont smoke or drink all my tests came back ok so who do i belive please help polly :cry:
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
    I have only just started having arva on tuesday and my last mtrx was the tuesday before but i am surprised how quick the mtrx is going out my body. My feet, ankles and hands hurt and feel hot the mtrx must have kept some control now it will be down hill and more painkillers than usual for me. I have not had any strange side effects yet. I have just agreed to do some voluntry work on top of my collage they did not say to me at the hospital that they were planning on taking me off mtx until i saw the hospital nurse and picked up the first presciption. I had just asumed i could keep mtx.
    I worry will i be able to manage the course if the symtoms worsen before this new drug kicks in.
    I am surprised to hear about your small stroke polly i know there are other problems us arthers can develop its worrying .we dont know what is in store and what the drugs will do for us and against us. The doctors say every thing is brilliant every drug they have given me, they rave on about but i often feel like ther guinea pig but wait in hope that one drug for me will be brilliant.
    THANK YOU everyone for replying will keep you posted from joanne
  • amandapayne
    amandapayne Member Posts: 4
    edited 30. Nov -1, 00:00
    I have also recently had a stroke and had the same response. My GP said it was the arthur meds and that I should stop taking them instantly 'or else'. Fortunatley my Rheumy is an absolute gem and I was able to see him and he explained that in fact as people with RA have a higher risk of stroke, its MORE important to keep it under control. Personally, I have chosen to trust the rheumy as I think he has far more experience of people with RA and associated problems than my GP.
    By the way, I also don't smoke or drink but i do have high blood pressure which is controlled by medication.
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
    Hi amanda I had heard that we are more prone to stroke i have never had my Ra under control they have tried so this does concern me a little. I do not drink or smoke and i have no history of high blood pressure. How ever all my immediate family have had and have meds for that. I was told arva raises blood pressure a little by the nurse and she does know my family history.
    I was reasured the raise in presure would be nothing to worry about. The rhoumy really wanted me on mtx but i need high doses but my body wont take them i could only tolerate 10mg before i had problems. so this is my only option at the moment so i hope that all i can do. thanks for reply from joanne

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