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Refusing Enbrel

staceyhstaceyh Posts: 20
edited 2. Oct 2010, 16:35 in Living with Arthritis archive
Hi

I am looking for some advice, I was on enbrel along with mtx (and all the other meds) last year before trying for a baby and it did help slightly with my ra however I am now trying to decide if I should go back on this.

I am obviously not keen on the side effects but its more the possible long term effects of it that scare me, I am only 27 have 3 children under 3 and feel although I am sore at least I am here for them.

I guess my question is has anyone refused to go onto anti tnfs? Does everyone think Im mad?!!

Thanks for your help tried to talk to family about it but they dont really understand

Comments

  • c4thygc4thyg Posts: 542
    edited 30. Nov -1, 00:00
    I initially turned down enbrel/humira because I wanted another child. Since then my health has got so bad that another pregnancy could be fatal (not arthur related so don't panic). I decided that I couldn't risk another pregnancy which could end with my daughter losing her mother. Once I made that decision I went onto enbrel (now prefer humira) and I agree that it has given me back my life. I'm going back to work next week after thinking that I'd never work again. Yes, I still have flares and bad days but they're a lot less and I have a better quality of life now. Talk to your nurse about your concerns. If you try it and don't like it you can stop. There are other treatments but I have to admit that humira is my treatment of choice and I don't have any side effects other than a little needle mark on my tummy! All other treatments I've had have given me side effects.

    I hope this helps. Talk to your nurse. She will have lots of patients on it and have a better general idea of what you can expect. Good luck.
  • barbara12barbara12 Posts: 20,660
    edited 30. Nov -1, 00:00
    Hi staceyh
    Sorry I cant comment on your drugs, but you do have some good advice already, I just want to say good luck with whatever you decide.
    Love
    Barbara xx
    Love
    Barbara
  • gickygawkygickygawky Posts: 478
    edited 30. Nov -1, 00:00
    Hi there,

    Enbrel was a god sent for me and now that I am off it (and Mtx) due to TTC I realise just what a significant difference it made to my wellbeing.

    I was offered Enbrel quite quickly after a firm diagnosis was made due to the rapid onset of my Arthur and at the time I didn't see that I had any other option as I couldn't stay in the same state of health willingly and felt I had to at least try it. I knew that I could always stop taking it if side effects became too much etc.

    If I had been in a different state of health and I am not sure what I would have done. Knowing it slows the diseases progress and could offer me a brighter future, I think I would have chosen to give it a go and feel that I was being as proactive as possible dealing with Arthur's bag of tricks. I would hate to look back in 50 years and wonder how well I would be if I had only taken the Enbrel way back when...

    I think it's a very personal decision - everyone has different priorities and I think it comes down to weighing up the pro's and cons and moving on from there.

    Good luck with making your own decision and I wish you well.

    Arna x
  • debsmartindebsmartin Posts: 209
    edited 30. Nov -1, 00:00
    Hi

    I know where you are coming from with the enbrel, I am relatively new on it but have had a few side effects so I am quite worried, but I also can see alot of advantages with it, I'm in a lot less pain now and actually feel quite normal (whatever normal is for ra). I guess only you can decide what's best for you - good luck.

    debs
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Stacey

    I have just, for now, turned down Rituximab (one of the other biologic drugs) following problems with Humira and an allergic reaction to Infliximab. I thought my rheumatologist would think I was mad too, but he was very understanding of my concerns and supportive of my decision.

    Have you discussed with your rheumatologist what other options are available to you instead? Unfortunately, as we are all too aware, none of these meds is without its potential side effects and I think it really is a case of trying to weigh up benefits against side effects and potential side effects.

    And, as I keep reminding myself, whatever you take doesn't have to be "forever". You can always give something a go and, if it isn't right for you, you can stop.

    Good luck!

    Love Tilly xxx
  • staceyhstaceyh Posts: 20
    edited 30. Nov -1, 00:00
    Hi

    Thanks to everyone for your replies they have all been very helpful. I think I need to bite the bullet and speak to my rheumatologist unfortunately I think if I dont take the anti tnf there isnt really anything else to try.

    I am pretty sure I have made my decision not to take it, while I totally understand it works for many people I feel I would never forgive myself if something went wrong while on these meds. I went through a lot with my second pregnancy and am probably now questioning my decisions re meds a lot more.

    Thanks again for your help
  • frogmortonfrogmorton Posts: 25,130 ✭✭
    edited 30. Nov -1, 00:00
    Good luck Stacy - you wont be written off at least and you can soon change your mind in the future if things change for you can't you?

    Take care

    Love

    Toni xx
    Love

    Toni xxx
  • marion1952marion1952 Posts: 996
    edited 30. Nov -1, 00:00
    [Hi C4thy

    I have just been talkign to my rheumy this morning about going onto Enbrel or Humira in 3 months time, if the increased methotrexate doesn't help my current flare ..

    I'm just wondering why you prefer Humira to Enbrel?

    I will be given the choice betwen these 2 and I just don't know which one to choose!!

    Marion
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Stacey

    As you say you have had everything else out there in the past? But is there a combination of meds which worked even reasonably well for you in the past which you could go back to?

    I have just gone back to methotrexate and I too have had nearly everything else going in the past but there might be a combination of other meds which, together might help you.

    Good luck with "biting the bullet". At least if you talk to your rheumatologist you will know what your options are.

    Love Tilly x
  • dreamdaisydreamdaisy Posts: 31,565 ✭✭✭
    edited 30. Nov -1, 00:00
    I have yet to 'meet 'someone who is keen on the side effects: they are not, however, guaranteed, and it may just work for you. Isn't that the important bit? Only you can decide. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • c4thygc4thyg Posts: 542
    edited 30. Nov -1, 00:00
    marion1952 wrote:
    [Hi C4thy

    I have just been talkign to my rheumy this morning about going onto Enbrel or Humira in 3 months time, if the increased methotrexate doesn't help my current flare ..

    I'm just wondering why you prefer Humira to Enbrel?

    I will be given the choice betwen these 2 and I just don't know which one to choose!!

    Marion

    Hi Marion,
    I prefer humira as it also treats my blood clotting disorder (ITP) whereas I seemed to have a permanent migraine (caused by ITP, not enbrel) with enbrel. I am a very rare case so please don't worry about my preference. Your rheumy will advise you and if you want to try the other later on (as I did) you can change.

    You probably know that humira is injected every 2 weeks and enbrel every week (or twice weekly if preferred, I've tried both). Most people think that fortnightly injecting is the way to go as there are less needles but I just want you to remember that if you get an infection you have to wait longer for the drug to wear off before your body can fight it. It's worth remembering as the infection has more opportunity to take hold before you can fight it off and you'll probably take longer to get over it. Both drugs come in syringe or pen form so that's not an issue. (I prefer syringes as I can control injection rate.) The worst side effects I've had from them is a slight reddening around the injection site.

    Speak to your rheumy about your preferences and take it from there. I don't think it really matters which you go for as you don't know how you'll get on until you try and they are both good in my experience.
  • dorcasdorcas Posts: 3,538
    edited 30. Nov -1, 00:00
    Hi Stacey :D

    difficult decisions always to start or re-start anti tnfs. :roll:

    I agree that it should/ has to be your decision...but.. that you should get as much info from your rheummy about the two anti tnfs and about your prognosis if you choose not to go back on an anti tnf.... and take it from there. :wink:

    I was on Enbrel to begin with about seven years ago and it was for me a very effective drug.... unfortunately I had to come off it due to a reaction. I moved on to Humira.. not quite as effective at slowing down arther.. and stayed on it for five yrs. I found both easy to inject although Humira does sting a bit!
    I've now just started Infliximab infusions which may/ may not be working.

    I've always been guided by what my rheummy team believe are the best options for me. It's a difficult balance as no-one can guarantee effectiveness of these treatments nor do you have a crystal ball into the future to know for sure which path is the best to follow.

    I do wish you well.. whatever you decide...

    love and (((hugs)))

    Iris xxx
  • staceyhstaceyh Posts: 20
    edited 30. Nov -1, 00:00
    Thanks again for all the replies, dreamdaisy I know nobody is keen on side effects of any medication. The important bit for me to be honest is not that the drugs work for me but what works best for my family and although I completely understand the side effects arent guaranteed they are very possible and its a case of weighing up the risks associated with the meds.

    If I was at a different point in my life Im sure my decision would be different however at the moment I have to do what I feel is right.

    Thanks for all your help
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