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Hi! Terrified of taking Enbrel...how is anyone else coping with it?

Posted , 30 users are following.

deborah67573
deborah67573

Hi, new to forum. Had RA for 16yrs, in middle of flare up. Methotrexate injections making me ill with nausea, vomiting and desperate exhaustion. Work full time with two children. Have just had Enbrel delivered. In fridge waiting for nurse to show me how to take it. I am terrified having looked at other forums and seeing side effects e.g. severe infections, A and E visits, comas right down to weight gain and runny noses! What are your experiences? Would really appreciate comments. Many thanks. D

4 likes, 58 replies

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  • frances85589
    frances85589 deborah67573

    Posted

    I tried this for 12 weeks but it didn't kick in.was scary at first but got hang of it.My hands aren't good so I pressed it into my top thigh.no needle to see.hurt first of all with great stinging but soon went.

    No weight gain for me or illnesses so was lucky in that bit.I too on steroid n they made me moon faced for a while but not much weight gain.

    You will be fine

  • carole78111
    carole78111 deborah67573

    Posted

    Embrol life saver for me too. But after pneumonia,  consultant said I can not go back on it. It is mainly due to the methotrexate that I was taking with it. That seems to have been the cause of lung problem. Methotrexate works for some people, but just made me ill. 
    • binkyboy
      binkyboy carole78111

      Posted

      Hi Carole I hope you’re well. My wife had an infection / septic arthritis 6 weeks ago and has been taken off Embrel with a possible view of going back on it and taking additional anti biotics . All up for discussion and quite a testing time for her. I wondered what you are taking in replacement of Embrel at the moment? Many Thanks
    • carole78111
      carole78111 binkyboy

      Posted

      Hi binkyboy, been off meds since 10th July, my rheumatologist and respiratory consultant have absolutely forbid me going back onto methotrexate, which I am happy about, but wish I could go back on embrol, as I have said before, it changed my life, when I went on it 8 years ago, have been able to continue working part time all this time with some flare ups, at present on steroid pills decreasing dose, but even they do not work now. At present am in so much pain, and have been like this since July. I know I should not say this, but current state of mind, wishes I could end it all.  Have worked very little this year, my husband has been my rock, I am a person who likes to do things, I am not a person who gives in easily, but I am finding it increasingly difficult to cope.  30 years I have had this awful condition. This forum helps, knowing there are others out there going through same thing.  Just hope another biological drug will help come Tuesday.  Sorry to be so down, 
    • theodore_1914
      theodore_1914 carole78111

      Posted

      After serious illines they do cause serious infections if anyone suppress the immune tbe T cells can grow be careful 
    • theodore_1914
      theodore_1914 carole78111

      Posted

      Good the etanacept biological medicines for blood disorders , we have inherited all immune disorders it will be better if have no to use nothing to function, I know the ENBREL well I have a beautiful disorder call it ankylosis spondylitis very beautiful disorder who no cure exist , stiffness and pain I love it little pain helps to remind me that I am a mortal 
    • Kisses1960
      Kisses1960 carole78111

      Posted

      hang in there. trust ur lord....i left enbrel...due to same severe chest infection sores n other...now on Nurika Synaelev Stilpyn N Arcoxia...

      its ok for me coz i am home keeper...so i can rest ...wen i like...i won't go back on other biologists...they should refine the side effects...its not only pain relief bit mentally exhaustive...

  • martin31040
    martin31040 deborah67573

    Posted

    Hi I was pretty unsure when starting biological drug Benepali I inject it once a week, anyway started on it about 5 months ago no side effects, inflammation right down and working brilliant.
  • LD-LD
    LD-LD deborah67573

    Posted

    hi deb,  I have been on enbrel 12 yrs - miracle drug for RA as you have also seen on other posts - BUT enbrel caused multiple sclerosis for me - yes, MS - --- I thought RA was brutal , MS is far worse -- you can navigate RA but MS navigates you --and the MS drugs are poison --- I would have never taken enbrel knowing that this "rare" side effect actually materializes in real life more often than not --- 

    read some 700 people have enbrel related MS -- 700 is not rare to me - was thinking 

    rare equated to under 50 cases or less --- drug enclosed literature very deceiving to

    patients ---other enbrel users should reconsider - -- or get yearly MRI's starting with a baseline before enbrel therapy begins - MS is not worth taking enbrel no matter how good the drug works -- I use marijuana now for RA and on a scale of 1-10 , I am a

    seven - eight and thats ok w/ me -- just don't smoke it (lung issues w/ RA) -- I should have started marijuana along time ago -- I hope this post helps other TNF users 

    (enbrel / humira etc ) think twice 

     

    • kathi12118
      kathi12118 LD-LD

      Posted

      **hi i e been on enbrel

      for 10 yrs nd recently feels

      as though its Not doing its job you mentioned MS and I was thinking that I was getting something else wasn’t sure if that’s possible

    • Kisses1960
      Kisses1960 LD-LD

      Posted

      you so truely right.way to go....

      i also only want pyn management

  • dianenorbury
    dianenorbury deborah67573

    Posted

    Hi 

    I’ve been on these injections for 4 months now with the only side effects being slight nausea for a couple of days each week and slight weight gain

    The positives far outweigh the negatives in my experience 

  • Kisses1960
    Kisses1960 deborah67573

    Posted

    hi am new here .was on Enbrel 50mg prefilled injection pens started 18th January 2018.Worked very well..then started weird tings .severely chest infections.

    have stopped Enbrel in September 2019.n am feeling better...I have a box of 4pens Brand new..in fridgd.n want to gesture it ...if i can help someone cut cost pls contact me.thanks.all the best.

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