Help please from all those on Anti-TNF

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englishrose
englishrose Non-active member Posts: 99
edited 18. Nov 2009, 15:09 in Living with Arthritis archive
I am having a battle with my rheumatologist, who keeps changing his mind just as I get to the point where I think I will get Ant-TNF. A very long story but what I need to know before I write to him is this:
Before you were prescribed Anti-TNF did you take Leflunomide as he now says this is a requirement.
If anyone who responds can indicate if they live in Devon (my county) that would help.
Please help and thanks for your time.
Jane

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  • woodbon
    woodbon Non-active member Posts: 4,969
    edited 30. Nov -0001, 00:00
    Hello Jane, I am sorry that I can't help you as I have oa.

    I am sorry that you are involved in a battle with your consultant, it must make life very hard for you. I think it is important for you to remember that everyone on here is different and will be prescribed different drugs for things. Its very, very hard to compare one persons treatment with another, although we all do it at times! Before you write to the consultant, have you tried talking to anyone else?

    The helpline team, although like most of us, are not medical but, they are good at sorting out problems and giving information about the best place to get help. Its a free call too! The number is the one you see in the right hand corner on this screen. I'm not trying to put you off complaining or explaining to your medics, but, sometimes its best to get all the advice possible before committing yourself on paper. I hope you can get things sorted.
    Best wishes Sue
  • scattered
    scattered Non-active member Posts: 326
    edited 30. Nov -0001, 00:00
    Before I went onto an Anti-TNF I tried MTX, sulfasalazine, hydroxychloroquine and leflunomide. You have to have tried at least 2 DMARDs, one of which has to MTX before you'll be considered.
  • lyndagodbeer
    lyndagodbeer Non-active member Posts: 10
    edited 30. Nov -0001, 00:00
    Hi Jane
    I am in Devon and I am now on Humira. I was on Leflunomide which was not working well for me. Previous to that I was on Methotrexate which caused problems with my liver function. You can PM me if you want. I had to have a scoring done twice. I think the 2nd one was done a month later. They take into account your CRP and how much swelling and pain you have in your joints.
    I hope this helps.
    Lynda
  • tamnwill
    tamnwill Non-active member Posts: 93
    edited 30. Nov -0001, 00:00
    Hi Jane, In Devon also, you have to try 2 dmards first, I did sulphasalazine and methotrexate, refused Lufludomide, crp levels went up to 118 and they decided to take me seriously at last but not before I had to break down in the consultation ( I was truly frank and said I didn't think they were being pro active enough for me) and this was after I had my knee operated on, (with little success.) I have just had my second test and now qualify!!!!...... am awaiting appointment for anti tnf treatment............... keep respectfully hassling them hon, the quiet ones are left to suffer! xxx
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  • mrsdalloway
    mrsdalloway Non-active member Posts: 161
    edited 30. Nov -0001, 00:00
    Hi Jane I am on anti tnf but it has taken me 14 years and a joint to get to this point! I am on sulpha, humira, naproxen and a few others I forget them all! Anyhoo I tried leflunomide and it was useless and didn't do anything, also tried mtx and it made me sick as a dog. However, when I was put on humira they were still trying to get me to take mtx as well, are these people on commission for that?? So good luck, but like I said I think from some of the other stories and my own the battling, arguing and stamping of feet (albeit gently!) is part of the conditionx.
  • fiona24
    fiona24 Member Posts: 2
    edited 30. Nov -0001, 00:00
    Hi Jane

    Sorry to hear about the problems your having with your Rheumatologist. :(
    I was on Leflunomide before i started my Humira injections but it was quite a long time ago. Ive been on so many over the past 8 years icant remember but i know After the Leflunomide I was on sulfasalazine for a 2nd time and methotrexate before starting the Humira. My pheumatologist never mentions having to be on Leflumomide first but i know with it being quite a serious drug they like to try everything else first. Or at least they do up here in inverness.

    Fiona
  • englishrose
    englishrose Non-active member Posts: 99
    edited 30. Nov -0001, 00:00
    Firstly very grateful thanks to you all for your quick response and good advice.
    Perhaps I should have said that I have had two DAS assessments scorring 6.33 (this has taken nearly 4 months.) I used to only have trouble with my hands but after a stomach ulcer in Jan. (caused by meloxicam) they took me of all anti-inflam. drugs. Since then I suffer badly with sore wrists, ankles and feet and terrible fatigue.
    Also I am not allowed steriods.
    So, after having my two DAS tests I thought - here we go - relief at last. But no, thats when they came up with the idea of Leflunomide.
    Do you wonder that I am confused. I have written to my Consultant today. Will keep you all posted.
    Jane

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