Anti TNF worked then stopped what was your experience

bluefish
bluefish Member Posts: 16
edited 21. Mar 2014, 17:48 in Living with Arthritis archive
Hi all

Wanted to hear from people who have had anti Tnf treatment that worked then stopped, what was it like for you?
I have moderate to severe jeuvenille onset sero positive RA, am 36 and been through most of the DMARDS and am on methotrexate max does for my size and sulfasalazine just been upped to max dose 2 weeks ago
Im on my third (first infliximab had allergic reaction to, then etaneracept worked for a couple of years very well, now adalimumab) anti tnf and I'm wondering if my adalimumab has stopped working, I was feeling amazing my rheumatologist even used the words clinical remission!!!! for the last 6 months then suddenly within a week I felt awful :(

Just wanted to hear from others as to did it happen this quickly for you when an anti tnf stopped working so well? I did also have a very bad cough and some full on scaling for gum disease which needed a gen aneathetic a few days before this flare up so wondering if im having a flare because of that? I have been told I have the beginnings of gum disease and am aware that there are big links being drawn between this and RA.....

Sorry to go on just wanted to give full picture and am doing a bit of detective work cos wanting to do all possible to feel better again, am looking after my 2 year old full time with partner at work which is not easy feeling like this!
Thanks all xx

Comments

  • toady
    toady Member Posts: 981
    edited 30. Nov -1, 00:00
    Hi bluefish, sorry I can't help with your particular experience of anti-TNF's that suddenly stop helping as I am on my first and it is still working as far as it goes. I have heard of people where when theirs did stop it was relatively sudden, however as yours was working so well until right before you had the general anaesthetic, if it was me, I would be considering a link there to your flare. Maybe coincidence but I would certainly want to give the adalimumab every chance, so if you are in a position to wait & see if you settle for as long as possible before considering switching again, that would give you a very good idea. That may not be possible depending on your particular circumstances, have you spoken to your rheumatologist & if so what's their opinion? Hope you will settle of your own accord.

    There are others here who have tried more than one anti-TNF so hopefully someone else should be able to comment on whether theirs failed suddenly or gradually.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I thought I had a similar experience with my first anti-TNF, infliximab. The first infusion was miraculous, the second and third nowhere near as good so I concluded it wasn't working any more. Further experience has taught me that it was. :roll: Hey-ho, we live and learn, neither the subsequent Enbrel or humira (adalimumab)has delivered anything like that first infusion of inflixi but I am past caring. None of the meds I take are doing what I would like but they are ensuring I can lead a reasonable life if I take care and pace myself.

    I suspect that in your case the infection etc could be the culprit, I still have the occasional rough times despite the triple therapy so hang on in there, things might improve again and I hope they do. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Lubs
    Lubs Member Posts: 155
    edited 30. Nov -1, 00:00
    Hi,

    I'm currently experiencing the same. I'm on infliximab, I have pre-meds to prevent a reaction to infliximab. I've also had other anti-TNF treatments.

    Currently I'm suffering from a huge flare up. I suffer from PsA, spondylitis and fibromyalgia, I've been signed off work for over 3 months. The consultant I saw this week, recommended that there was no other treatment available, and that I stop working. I am so tired that I cannot stay awake even when I've slept all night. While at the hospital, I fell asleep waiting to see her, luckily I went there with my mother as I am no longer driving. I do not remember things clearly either due to the pain and fatigue. So she saw the diary that I kept and realised I'm not making it up!

    I have infliximab every 6 weeks, when the norm is 8 weeks, but it is not fully controlling my arthritis. They are concerned that if the stop they have no other treatment to offer me. She told me that when a new treatment is available I will be kept in mind for it. All I can do is hope that this flare up will pass.

    Lubs
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    I have had Enbrel, Humira, Ritiximab and Infliximab.

    I think the main reason why these drugs stop working is down to the fact that our bodies create antibodies to the medication. This is why now they give Meth and other drugs in combination to help reduce the chance of this happening.

    I was told theres a 1/5 chance of a patient developing antibodies towards tnf drugs within the first 6 months.
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    As5567 wrote:
    I have had Enbrel, Humira, Ritiximab and Infliximab.

    I think the main reason why these drugs stop working is down to the fact that our bodies create antibodies to the medication. This is why now they give Meth and other drugs in combination to help reduce the chance of this happening.

    I was told theres a 1/5 chance of a patient developing antibodies towards tnf drugs within the first 6 months.

    I came here to say exactly the above. Also, after a year on anti TNFs, people seem to have less successful results.

    My rheum nurse went to a conference in France who push for patients to be on the maximum tolerable dose of MTX to prevent antibodies developing. She said they regularly prescribe up to 30mg.
  • DaveOB
    DaveOB Member Posts: 39
    edited 30. Nov -1, 00:00
    When I started on humira it was like a wonder drug, however like others the affects seemed to stop abruptly after a few months. I was not taking anything with it, so started taking mtx which helped, but it was never the same. I am now on enbrel and leflunomide, and it gives me a quality of life if I pace myself. Nothing has ever compared to those first few months on humira though, I found it very hard when it stopped working. May sound crazy but in some ways I wish I never experienced those few months of almost being normal!
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    DaveOB wrote:
    Nothing has ever compared to those first few months on humira though, I found it very hard when it stopped working. May sound crazy but in some ways I wish I never experienced those few months of almost being normal!

    I feel the same way, Dave. I started on cimzia last August and had fantastic results. I've been taken off it due to side effects and it feels so unfair to have had a glimpse of 'normal life' only to have it taken away.
  • DaveOB
    DaveOB Member Posts: 39
    edited 30. Nov -1, 00:00
    Starburst wrote:
    DaveOB wrote:
    Nothing has ever compared to those first few months on humira though, I found it very hard when it stopped working. May sound crazy but in some ways I wish I never experienced those few months of almost being normal!

    I feel the same way, Dave. I started on cimzia last August and had fantastic results. I've been taken off it due to side effects and it feels so unfair to have had a glimpse of 'normal life' only to have it taken away.

    I think sometimes it is hard for people to understand unless they are going through it to, but the emotional side of this disease is tough sometimes. Takes a while to get over something like that I think. Hope you find something else that helps.
  • Lubs
    Lubs Member Posts: 155
    edited 30. Nov -1, 00:00
    My rheum nurse went to a conference in France who push for patients to be on the maximum tolerable dose of MTX to prevent antibodies developing. She said they regularly prescribe up to 30mg.

    Hi,

    While at the consultants I asked if she could increase the dose of MtX, from 10mg? She told me that as it is only taken to prevent the antibodies forming I only need a small dose! Looks like I should be asking the nurse the questions, they seem to know more than the doctors!!

    Lubs
  • bluefish
    bluefish Member Posts: 16
    edited 30. Nov -1, 00:00
    Hi
    Thanks guys, I had a similar experience with the infliximab Lubs I had one dose and had a big reaction to it cue lots of nurses rushing in and treatment stopped, and last time I went it was suggested that maybe I might revisit the infliximab with something given at same time to stop a reaction. What was it you have?

    I will ask about the 30mg methotrexate starburst, maybe I can't go higher, am on 22.5mg and am 8 stone so am quite dinky!

    It seems for me I get a few years then it stops but I agree Toady about the coincidence or maybe it caused it and it might settle down, am def up for giving it a go cos the week before I have felt the best I have for years! I know what you mean about its hard when its so great then not! I was loving it! My doc says that I should wait and see cos he thinks Im not building anti bodies (although there does seem to be lots of conflicting info out there about this, wish there was a test you could have to see if you did have them!) Gonna hope that I don't have to switch yet as I know there are others out there but want to last as long as poss on each so I can feel as well as poss for as long as poss!
    Thanks for the well wishes, always so great to hear from others real experiences as well as what the docs say!
    xx