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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

58 Replies

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  • Sheila_S
    Sheila_S deborah67573

    Posted

    HiDeborah, I have been on enbrel for 8 years...it's the most amazing wonderful drug ever!   Within 2 days of taking my first injection I felt like I no longer even had RA. I have never had any problems or side effect ever!  Having been on plaquenil, prednisone, methatrexate, sulfasidine, etc I really was desperate for relief and Enbrel brought that to my completely.  I hope it's as good for you as it has been for me, don't be afraid it just might change your life for the better....it sure did for me.
    • deborah67573
      deborah67573 Sheila_S

      Posted

      Thank you Sheila. It was lovely to hear from a real person experiencing this first hand.  I am so pleased to hear you are doing well. I have discussed at length with my family and at this stage, I feel Enbrel is a step too far for me.  I find it a big step.  I'm a teacher and exposed to all sorts of childhood complaints every day and worry I won't have the immune system to cope with contact.  I see the consultant this week and will discuss my worries with him. 

      Thank you so much for taking the time to reply.

  • ann07438
    ann07438 deborah67573

    Posted

    Hi Deborah, 

    Having spent the last week wondering if I had signed my own death warrant by agreeing to go on Enbrel, I'm up very early trying to find reasons to take it rather than run away, and having read your post, you have mirrored exactly my reactions to methotrexate injections.

    I would love to know how you have got on.

    I'm due to having Enbrel delivered tomorrow, and having my first injection next week at hospital. The first thing I saw on the med sheet is 'more than 1 in 10' -severe infections, fatal.... how does anyone take Anti-TNF's after reading that?

    I just hope we both have the same outcome as Sheila, who has also also been on mtx, sulfasalazine, hydroxychloroquine, prednisilone, as I have

    • deborah67573
      deborah67573 ann07438

      Posted

      Hi Ann

      Thank you so much for replying.  I'm afraid Enbrel is a step too far for me at this time.  I am anxious about the side effects and have refused the treatment up to now.  I see the consultant this week so no doubt will discuss my concerns.  I hope you find the answers and comfort you are looking for....remission.....ahhhh.

    • ann07438
      ann07438 deborah67573

      Posted

      Hi Deborah

      Me too, even worse the drugs arrived and I sent them back only to find the following day they 'Healthcare at Home' re-delivered but to Goods in at work who didn't know any better and took them in. They put them in their fridge, but we don't know where they had been stored overnight, and whether they are still viable. Having tried to get through to the company several times and spending hours on the phone, they still haven't picked them up. I'm seeing my consultant on Thursday and will take them with me. Don't understand why the NHS uses such a rubbish company, see NHS Choices for extremely bad reviews, and why they give you 12 weeks supply when you don't even know whether you would have an adverse rection 1st  time. Seems such a waste of NHS money. 

      I am also very scared about  infections, having had such a bad time on MTX, one thing after another. Will let you know how I get on......

       

  • bill12447
    bill12447 deborah67573

    Posted

    Hi Deborah

    i have been on anti tnf treatments for about 12 years, Enbrel for probably 8, life changing is an understatement. I rarely have a flare up, if so it is so minor. I work full and the way things are would expect this to continue indefinitely. Once you have done the first injection then they are really easy. I have had no side effects( that I am aware of), just keep up with blood monitoring and all should be ok. I appreciate it will not suit everyone, but for me it is the solution.

    hope you get on well with it

    Regards

    Bill

    • deborah67573
      deborah67573 bill12447

      Posted

      Hello Bill

      It was lovely to hear that Enbrel has been so successful for you.  It does give me hope that I may eventually use it.  I am still very anxious about the side effects detailed in the pack and, even worse, on the internet.  I've refused the treatment for now but will keep reconsidering.  I am just trying to manage with the methotrexate and other pills and potions....and a bit of positive thinking.

      Thanks again for replying.....keep well.

      Deborah.

       

  • frances85589
    frances85589 deborah67573

    Posted

    Hi deborah, I've tried methotrexate,humira and enbrel but none have worked.would have loved the enbrel to have worked as it was so easy to use.was scary first injection but just held pressed into thigh then pressed top button and released.After click noise could remove.Was bit painful but you get used to it and sometimes it doesnt hurt.I had no side effects so help it works for you.Now going on to try rituximab
    • hope4cure
      hope4cure frances85589

      Posted

      Hi. I have been down the same road.. Actually Humira and helped at first then stopped working. It helped with the stiffness and pain. 

      CHEERS

      HOPE

  • nanaally
    nanaally deborah67573

    Posted

    Hi deborah67573 . regarding the enbrel injections I've had no side affects and I've been on them for 4years. Before that I was on humira injections and got a lot of chest infections . I cannot take methotrxate that to gives me very bad infections. I am seeing my rheumatologist next week and we are going to look into another drug that you can also inject .as the enbrel is not as avective as it was in the be gaining . that's the trouble with this rheumatoid it over takes the drugs eventually so you have to try new drugs to help with the flare ups .... I've had rheumatiod for 18yrs  since I was 32 and it has caused a lot more serious conditions   . hope this information helps x

  • amanda26614
    amanda26614 deborah67573

    Posted

    Hi, I've been on Enbrel for a while now and it works wonders for me.  Just a small tip, the auto injecting pen usually causes a burning sensation that made me dread my weekly shot.  After talking to my rheum she reccomended trying the Enbrel kit, in whcih you have to mix the medicine yourself (its very easy) and there is absolutley NO pain or burning at all! The only downside is that it must be done twice a week rather than just once, but totally worth it
  • CA-Lynn
    CA-Lynn deborah67573

    Posted

    My brother has been on Enbrel for years and it's a wonder drug for him. I've been on Humira for 4 years and it's a wonder drug for me.

    While awareness of possible side effects is important, it is ridiculous to let them stop you from taking the drug. Do the math, read the stats, then take the drug.

    • deborah67573
      deborah67573 CA-Lynn

      Posted

      Hi CA-Lynn

      Thank you for your response.  I have started taking Enbrel.  I had the biggest flare up of the 16 years I have had RA in June so I started the drug.  I had a shaky start....only two injections and developed site reactions and then an infection so had to miss a few. However, now back on Enbrel and the injections I have had this time have got me mobile for the first time in months.  I have a residual, localised problem with one knee which requires surgery, but otherwise I am mobile, happier and sleeping at last.  I have even been able to stop the sulphasalazine and hydroxychloriquine.  No more Meloxicam or Codeine.  

      I still think about the risks, but then I've been able to stop taking other medication and being able to do things with my children and being able to go back to work is just amazing.  

      Early days, but looking good.

      Thank you so much for replying. I cannot express how much the lovely people on this forum have helped me over recent months - just realising that you're not alone.  Thanks again and kindest regards.

      Deborah

    • hope4cure
      hope4cure CA-Lynn

      Posted

      Hi Ca Lynn, 

      did u have any side effects oh Humira give u stomach aches or did u suffer other side effects?

       

    • CA-Lynn
      CA-Lynn hope4cure

      Posted

      I had NOT ONE side effect whatsoever. I have been on it for almost 4 years.

      If anyone claims stomach aches, it's just coincidental and not at all likely the drug.

      Strongly recommend concurrent, low dose MTX with the Humira. Why? MTX helps to prevent building antibodies to the Humira. [In short, it means that the Humira will work over a longer period of time.]

    • hope4cure
      hope4cure CA-Lynn

      Posted

      I'll ask about the MTX I've taken that before but not together with other meds. Also predisone to remove all the inflammatory swelling.  Thanks for UR positive & encouraging reply.

      Thank you for UR reply. It's nice to hear good positive support. What do up take it for? I take it for PSA and psoriasis.

      So I have joined the Humira club!!!

      I had my first two shots of Humira tonight.

      The injections didnt really hurt too bad however glad I dont have do it again for 8 days. I am keeping my fingers crossed that this will be a good treatment for me. My daughter is getting married in Oct.and it would be so sweet be able to wear a gown for her wedding. biggrin

      Gratitude .....

      " If you look at what you have in life, You'll always have more.

      If you look at what you don't have in life, You'll never have enough."

       

    • CA-Lynn
      CA-Lynn hope4cure

      Posted

      Hi, Hope,

      I have RA, PsA, and AS. Humira and MTX have been a lifechanger for me. I have nothing but good things to say about the drugs. I feel so sorry for people who seem to be frightened of taking it. There's a lot of negative stuff out there about it and not enough of the positive feedback [and that's because all the people who have been helped are having too much fun in life and aren't reading these forums]!

      I think of how lucky I am. My neighbor across the street has inoperable stomach cancer and she's been taking chemo for a year. How lucky am I to have such wonderful drug options for RA!

    • hope4cure
      hope4cure CA-Lynn

      Posted

      Hi California Lynn...

      u have a great positive attitude. I agree that to many people fear the new biological drugs. There r serious side effects od course. But then again quality of life has to be considered. 

      How long have u been takin Humira? I am looking foreword to relief from PSA , OA. Duprytrends arthritis felief. It just creaps up in all my joints. 

      Hope u R well. Take care.

      HOPE

       

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