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Anyone having anti tnf treatment - adalimumab?

dori123dori123 Posts: 13
edited 9. Feb 2009, 19:02 in Young people's community
Hi this is my first post i've been meaning to join for ages! Hi to everyone i'm hoping someone is going to be able to offer me some advice.

I'm 23 and i've had rheumatoid arthritis for 3 years now. I've been on methotrexate for nearly two years and over the last six months i've got alot worse and i'm in more pain and discomfort than i've ever been. I've had to finish work and i'm now becoming quite depressed. I usually have the attitude that this is how it is now and i have to accept that things may never be like they were but with the constant pain i'm in, my walking being severly affected, its hard to have that attitude.

On my last visit to the speacialist in December 08 i was offered anti tnf treatment (also entanercept). I know this is good news because the specialist appealed for me to be given it early last year but i got turned down.

My concern is that its a fairly new treatment and the long term side effects aren't known and I've also been told only 25% of patients feel a significant improvement.

I just don't know if its worth it. My body is already being subjected to so many drugs.

Aaaaargh!...............decisions, decisions!

If anyone has been on this treatment or is currently on it i would love to hear what its done for you and your opinions.

Thanks for reading hope to hear from you soon x

Comments

  • lesleygrahamlesleygraham Posts: 91
    edited 30. Nov -1, 00:00
    Hi Dori
    I've been on Enbrel for 1 year and initially it was fantastic. However, it is now starting to wear off and I'm really starting to struggle now, especially in the mornings. Although the pain is getting me down, mentally I'm not coping well.
    Anyway it was great while it lasted; gave me a 'normal' life for a year, - no side effects.
    Good luck
    Lesley
  • dori123dori123 Posts: 13
    edited 30. Nov -1, 00:00
    Hi Lesley

    Thanks for your post. Feeling better for one year is better than not at all i suppose and i'm glad to hear you had no side effects. I've just ordered a book called 'Arthritis without pain - the miracle of tnf blockers' from Amazon. Its got great reviews and gives you a real insight offering pros and cons. Anyway thanks again for your reply.

    Dori x
  • poppy30poppy30 Posts: 67
    edited 30. Nov -1, 00:00
    Hi there!

    Just wanted to let you know that I had a really good response to Humira (if you read some of my previous posts you'll see how much I like to rave about this drug!!! :oops: :lol: :oops: )
    I have PA and was on Humira for 2 years (+ 15mg Mtx) with minimal side effects and amazing results within one month of my first injection. :shock:
    I have stopped the meds now as we are trying to start a family and I am really struggling without them :cry: (much pain, fatigue and all the other things arthritis throws at you!).

    Hope you find something to work for you...... feel free to PM me if you have any specific Q's. Making a decision about meds was one of the hardest things I ever had to do.

    Poppy x
  • colinonecolinone Posts: 1,406
    edited 30. Nov -1, 00:00
    Hi Dori, I’m a little older than you and have had RA and PA for nearly 30 years but only started what I call the hard drugs about 4 years ago and have been through most of them I’m on Enbrel one of the anti TNF drugs
    I have a really great Rheumy who advised my to try the enbrel first as it had been on the market for quite a few years and well tested. You get loads of bunff on it and plenty of time to read it all and take it all in.
    I understand how you feel about the side effects but most people on this drug have very little side effects. I know it’s the long term you are worried about along with us all who take these drugs. You have done well
    Accepting your illness at such a young age I still think why me from time to time. Coming to terms with the whole thing is so hard and now you find yourself in a catch 22 where you feel your damned if you don’t and damned if you do. With me the pain got so bad I thought I would give it a go. I never wanted to and like you I seemed to be on a downward slope as the illness was taking over. I was so bad I had four stays in hospital early last year to try to get it under control in the end I agreed to the drug. It takes a little while to get into your system and build up. At first I thought it was not working. Because I have a chest infection that won’t go away I have been taken off all drugs and its only now I realise how well it was working. I’m sorry this is such a long reply to your post. It is a decision only you can make and I know how scared your feeling my heart goes out to you, If its ok with you I’ll just give you a little hug wish I had the magic cure for you. Take care Dori and keep your chin up hope your feeling better soon
    Colin
  • colinonecolinone Posts: 1,406
    edited 30. Nov -1, 00:00
    Dori one last thing if you go onto the
    Living with arthritis forum
    you will find more people on anti TNF treatment
    there are simula posts from people with the same problem
    just scroll through and you will find them. By the way welcome to the site you will meet lots of nice supportive people.
    Colin
  • dori123dori123 Posts: 13
    edited 30. Nov -1, 00:00
    Thanks alot for your replies Colin and Poppy they were really helpful :)

    Sorry not to reply sooner

    I had my first assesment a few days ago and i'm still really unsure! :?
    I still have a few more weeks to decide though so i'm sure i'll come to a decision. Lots of thinking and reading to be done.

    I'll be sure to check the other forums for more information so thanks colin

    Good to know of so many others in the same boat, in a 'who know how i'm feeling sort of way' because i'd much rather the boat be empty!
    :lol: Thanks again x
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