Anti Tnfs.

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Maria510
Maria510 Member Posts: 7
edited 26. Jan 2011, 09:40 in Living with Arthritis archive
hi all, i'm new on here, i've had ra for 5yrs now and am in the process of being assessed for the anti tnf injections. Just wondering what experience people have had on these, successful unsuccessful? what problems might have been encountered, i'm concerned about picking up infections more, virus etc, i have 2 young children and seem to pick up everything easily already. I met with my rheumatology nurse and she's a nice person but very confusing and i come out knowing less. Any responses greatfully recieved. thanks xxx :P

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  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Mari,

    I seem to be stalking you today but welcome to posting.

    I am not on the Anti's..... I was told I wouldn't get funding so for me its mtx or nothing basically. Not sure what the criteria is....only got pa in the arms and neck so maybe that's not enough but my Rumo (Doc h at T) told me I would never get funding so am impressed you will :grin:

    There are a few here who have different Anti's and they will post to you I know. It does seem to help some a lot and not do a lot for others but will leave them to tell you.

    What ever i really hope it will work for you and again nice to meet you. Cris x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 20. Jan 2011, 07:49
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    I am on my third variation of these 'wonder' drugs. My inflammatory markers have been in single digits since the first dose (July 09) so I guess that constitutes a 'success'. I still flare, I have added more affected joints to my total, the pain has never left, I have not been able (as was promised) to ditch the sticks or the pain dullers or the oral steroids but I have ditched the anti-inflammatory tablet. Woo-hoo. I wish you well. DD

    PS I forgot the infection bit - sorry. I have basically kept well since I began it, despite working as a private tutor for children - each pupil is routinely squirted with hand gel at the beginning of each session, as are all house guests, and I wash my hands very frequently throughout the day. You should also consider having the flu jab, if you are accepted for the treatment.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • debsmartin
    debsmartin Member Posts: 209
    edited 30. Nov -1, 00:00
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    Hi Maria

    I also use enbrel and I have been very pleased with the results, as on the previous post I still get the odd flare up, but health wise I have felt really well. I am very pleased that I got the chance to have a go, I go for my 6 months assessment today where they will decide if I can carry on - so keeping myfingers crossed. On the infections side I haven't felt any more vunerable I still take methotrexate so I need to be careful with that as well but washing hands and using anti-bacs spray have worked for me.

    Good luck

    debs
  • Donna Mc
    Donna Mc Member Posts: 30
    edited 30. Nov -1, 00:00
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    Hi there, just lettin u know that i am in the same boat at the minute. I have past my assessments and am due to be started on Enbrel any day now. I too am very concerned about these drugs due to the fact that they aren't really out long enough for all the long term side effects to be known. But i have been assured that any slight change is picked up quickly with ur regular bloods. I have three young children and of course u think about down the line what way u r goin to b but i suppose we shud count ourselves lucky for bein given the chance to try these very expensive meds.I was on methotrexate for a couple of years and took every infection going as i was on the highest dose so i hope it will be different this time around.
    I wish u all the best with ur venture and will keep u posted on how i get on,
    Donna xx
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
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    Hi Maria nice to meet you :grin:

    I can understand your reluctance to start on anti tnf therapy... that's how I felt too!

    I've been on three anti tnfs over the past 7yrs or so; the first, Enbrel was effective but unfortunately I reacted to it so it was withdrawn;
    I was then on Humira which was effective at slowing down arther's progress for almost five years! initially I was more susceptible to infection but that too reduced the longer I was on it. Unfortunately after four half years my body produced antibodies which stopped it working so I had to come off it.
    The third and most recent was Infliximab, which just didn't work for me :roll: .

    Through the years of being on anti tnfs I was always closely monitored and supported by the rheummy team and my GP. Any variations in blood tests was looked at and any wee queries I had were always answered.

    I wouldn't hesitate if the rheummy offered me another anti tnf... I've personally experienced their effectiveness.. and although not 'miracle drugs' they can and do very often slow down our common enemy..arther's.. progress. In my book anything that can do that is worth trying!

    Good luck and let us know what happens next!

    Iris xx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi Maria
    Sorry I cant help with the meds, but I just want to say welcome to the forum, and to wish you well with your treatment.
    Love
    Barbara x
    Love
    Barbara
  • cathhankin
    cathhankin Member Posts: 28
    edited 30. Nov -1, 00:00
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    Hi Maria,

    I've been on a range of anti tnfs since i was 17 so thats 7 years.
    firstly enbrel, at first thought i had been cured,went ice skating and everthing! however after 3 years, the effects wore off and it was as if my body became immune to it. i was then tried on humira- which i couldnt bare. the stinging when injecteing was unbearable. then there was Rhetuximab- i however became allergic to this. so after 2 years on other anti tnfs, they tried enbrel again. I am comfortable. I do get the odd flare up, and the fatigue is the biggest pain. im also still on Leflunomide, pred,diclofenac, tramadol.

    the ant tnfs are said to work better alongside MTX and Leflunomide. my ESR and CRP have been below 10 for 6 months now, so all is good.

    I know everyone is different, but enbrel was the best for me. just hate having to inject once a week, but anything to get rid of the pain :)

    good luck with everything x x
  • Maria510
    Maria510 Member Posts: 7
    edited 30. Nov -1, 00:00
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    hi, just wanted to say thankyou to u all for replying, its helped alot reading your replys. Been away all wk end so just got logged on this morn. Thank you for all the welcomes to the forum too. Hope u are all well and i look forward to getting to know people more. thanks again. maria x :grin:
  • scorpio
    scorpio Member Posts: 159
    edited 30. Nov -1, 00:00
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    hello........i am on humira and have found it a miracle

    my psoriasis is nearly all gone and my arthritis is nearly all gone too

    heaven

    good luck
  • Dibbler
    Dibbler Member Posts: 9
    edited 30. Nov -1, 00:00
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    Hi,

    I have been on Humira for the past 2 years and it has brought my inflammatory markers down ALOT. There is still the old joint damange which causes a lot of pain and some new, which i didn't expect after the way the drug was hyped up to me, but on the whole i am glad I made the decision to take it.
    I do get some redness and irritation sometimes after taking the injection, but other than i've had no problems. Due to my disease activity i have to combine it with methotrexate, which I hate but I was told the 2 often work well together.

    Hope this has helped.

    Dibbler x
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
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    Hi maria
    I can't advise on meds but just want to wish you luck and hope they work for you
    juliepf x