Massive success with Enbrel!!!

Donna Mc
Donna Mc Member Posts: 30
edited 11. Apr 2011, 13:44 in Living with Arthritis archive
Hi everyone,
I am pleased to be back on here to tell of my success with Enbrel. It wasn't that long ago since i was on asking for advise on this drug. I was terrified of starting it and worried about side effects and even the needle itself ( i'm a bit of a coward he he). I have to say i am so glad i started this drug two months ago as it has made a huge difference to my life. Before this drug i struggled with terrible pain to cope with my 3 little girls and now i am so much better. The knees are fluid free and can now move. I still have some pain due to the damage done in previous years but it is now manageable. I now walk everyday and can be more active with my wee girls. I am managing really well with the injections and i have no side effects at all unlike when i was on Methotrexate, it was awful. I would like to tell anyone who is due to start this drug and maybe a little worried about it to give it a go. It is definitely worth it for a better quality of life.
Donna.
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Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am glad to hear that it has worked so well for you and I hope that continues to be the case for a good long while yet. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Wow Donna that's really good and nice to read as well. Hope it will go on working for a very long time. Cris x
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
    So pleased for you. I am hoping that it will do the same for me - I started recently. x
  • frogmorton
    frogmorton Member Posts: 29,848
    edited 30. Nov -1, 00:00
    Hi Donna

    This is the most WONDERFUL news!!

    Thank you so much for posting it. It will treally give others some hope.

    Long may it continue and you enjoy those kids :grin:

    Love

    Toni xx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Donna

    I am soooo pleased for you! It is lovely to have some positive news on the forum - very often we don't get to hear the success stories.

    Really hope the drug continues to help you.

    Love Tilly xxx
  • Poppyg1rl
    Poppyg1rl Member Posts: 1,245
    edited 30. Nov -1, 00:00
    Hi Donna,
    So pleased for you! Always good to hear encouraging news this, I recently started Humira and got everything crossed that it will be successful too.
    Thanks again fir sharing your wonderful news, long may it last
    All the best x
    'grá agus solas'
    'Love and Light' translated from Irish. X
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Hi Donna

    well that is brilliant news, I am so glad that the embrel is making your life a lot easier. Hope it continues to work for many years.

    Juliepf x
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Oh great news Donna, thanks for posting it as there are a good few who are starting new meds and it will give them a boost to see this.

    Hi Stluicia, nice to see you too. Fingers crossed you will get some benefits from Enbrel soon.
    Lv, Ix
  • lindalegs
    lindalegs Member Posts: 5,396
    edited 30. Nov -1, 00:00
    Donna that is so good to hear.

    It makes us appreciate feeling well doesn't it!

    m1235.gif You enjoy. :grin:
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    That's amazing! It's always lovely to read posts like this, very inspiring for other people. I'm really delighted for you that you've had such a great success. Long may it continue. :grin:
  • km89
    km89 Member Posts: 32
    edited 30. Nov -1, 00:00
    Hi Donna,
    That's great news!
    I'm so glad that you've said that because I think I'm going to be starting it soon! Currently on triple therapy and they said if that combination isn't working well enough I'll have to start the TNF inhibitors.
    I'm always getting fluid in my knees so to have that gone would be amazing if it has the same effect.

    Definately given me some hope :) Hope it carries on working for you.

    Katie
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    That is great news......great to hear some positive news

    Love
    Hileena
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
    That's great news. I am due to start humira soon, so it's very encouraging to hear that enbrel has mad such a difference to you.

    Marion
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    It is always worth trying any medication to see if it helps. I had similar great results with Humira including fluid free knees and a loosening of my stuck,painful elbows.When I had to stop recently most of the bad symptoms returned (and are proving harder to shift this time).
    I am really pleased for you.
    St Lucia i wondered where you had gone. I am glad to see you have been moved onto another anti-tnf and really hope this one works.

    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • Donna Mc
    Donna Mc Member Posts: 30
    edited 30. Nov -1, 00:00
    Thanx so much everyone for your replies and good wishes. I just hope that i can give some reasurrance to anyone out there who was in the same situation that i was in before starting Enbrel.After previously failing on every other med out there i was giving up hope.Then i got the news that i was accepted to try the Enbrel and as with all new drugs you feel a little bit anxious about starting them and worrying about side effects,etc. I have to say i have never felt as good in years, my joints aren't swollen or stiff anymore and on top of that i have absolutely no side effects at all. Unlike when i was on Methotrexate and Plaquenil.With these drugs i suffered one infection after the other, a lot of hairloss and i just felt awful. To be honest i felt like i was being poisoned.
    So i wish anyone due to start Enbrel every success as i have so far had and i just hope i have eased someones mind about starting this drug. I would love to hear from anyone else on Enbrel and your own experience.
    Thanks again,
    Donna xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I took it for a while, it did sweet FA for the arthritis but the injections were a diversion and provided entertainment of sorts, then after a while it tried to explode my liver. We are all different in what works or doesn't and I hope it carries on working for you for as long as possible. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Donna Mc
    Donna Mc Member Posts: 30
    edited 30. Nov -1, 00:00
    So sorry to hear it didn't work for you and of course we are all different but if i was about to start a new drug and was apprehensive about it i would be glad of any positive feedback from it so was trying to give others out there a little bit of hope in this whole arthritis carry on... how are you now and have you found a med that works for you?
    Donna.
  • Poppyg1rl
    Poppyg1rl Member Posts: 1,245
    edited 30. Nov -1, 00:00
    Hi Donna,
    I know I've already posted earlier on your thread but, just read your latest comments and I totally agree with you! It is reassuring and uplifting to hear positive reviews of a drug that works! Long may your good health continue :grin: hugs x
    'grá agus solas'
    'Love and Light' translated from Irish. X
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am always pleased to hear that something has worked for someone. It hurts at the time, sometimes a tear is shed but I have been there, tried that, have a superb collection of Tshirts and can now rest easy in the full knowledge that my journey with all this is done. I am on my third anti TNF (humira)and this is the final one as funding won't be available for any more. In my neck of the woods it's three strikes and you're out. I suspect that my 'out' is rapidly approaching as I have been recently drained and steroided (why? it shouldn't be happening) and my knees are filling again.

    It is good to hear positive news once in a while, it gives us all a chance to say well done, that's good, hope it lasts. I think a snag with LWA is that those who do have success go away and get on with things, as indeed they should. That is the whole point of taking the meds but it can lead to the forum being a little top-heavy in the bad news department because for those of us left behind it's generally because things haven't worked that well, are stopping working or have never worked. Have I found something to help me? Yup, oral steroids. They are so good I am giving them up.

    You asked about people's experiences with enbrel and for me it was not positive. I was told about the benefits when I began it in September 2006 but luckily didn't listen too hard, so I wasn't that disappointed when they failed to materialise. I never once felt ill despite the complications it caused (thank god I was sensible about the blood tests etc, that picked up the liver trouble) but it lead to three months with no meds which gave the PA a chance to really move in, which it took with utter glee. I hope that they have caught yours early enough for the anti TNF drugs to really make a difference, I firmly believe that if they are given in time they can. Too much time is lost for some people with waiting for meth and sulph to do their thing. I was just unlucky, my treatment has been far too little, far too late. It matters not. My hospital has now changed what it does, once diagnosed you have six months on meth or whatever, and if that doesn't do the trick then it's the anti TNF and their 'success' figures are on the rise, which is so good for those who are affected.

    Yours is a different story to mine, and I hope enbrel works for you for a very long time. I know someone else on here has just started it for AS, well-established AS at that. I sincerely hope he gets the same outcome as you. Go and enjoy life as much as you can, that is what it is for. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kmr
    kmr Member Posts: 108
    edited 30. Nov -1, 00:00
    hi hope you are all well as most off you know my daughter is 24 she was started on hydrox(not sure of spelling) and mtx the hydrochlorine the hydro didnt agrree with her so was swapped for sulphazadine(why do they have such names) so she has been on mtx tablet and the sulpha one untl recently she has been put on MTinjections , she has still has svere swelling so at her hospital visit today they have now said they they are going to try embrel, but she has to have councilling and chest xrays and all sorts of tests is this the norm ? i see ther has been some good reports on this medication can anyone please give us any advise or suggestions she is now worried due to have to having all these tests and counciling many thanks
    HOPE YOU ARE ALL WELL IN THIS LOVELY WEATHER :wink:
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Hi KMR they test before allowing you on these strong meds because your immune system will be lowered and any nasties could get worse. On Humira you have a chest x-ray and a check for possible TB to look for infection. It is just a safety precaution.I imagine it is the same for enbrel.
    I hope it can help your daughter.

    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • Donna Mc
    Donna Mc Member Posts: 30
    edited 30. Nov -1, 00:00
    Hi there i totally understand you and your daughters concerns as i was here not that long ago. I have had rheumatoid arthritis since i was 20 and i am now 34 years old. I too was on Methotrexate and found it awful with loads of side effects and it was doing me no good at all. I have been on Enbrel now for about two months and so far find it great. My knees have never been this boney (no fluid) and i can now move with little stiffness, i feel better too with more energy to help me cope with my young family. I know everyone is different but if we don't give these drugs a go then what other option do we have. The arthritis has already done enough destruction to my joints and i wasn't about to sit around and just wait for it to cripple me totally. My aunt developed the same arthritis that i have and at the same age as me. I had to watch it slowly cripple her in agony until it eventually curled her ribcage around her crushing her lungs and slowly and very painfully killing her at the age of 50 years old. I am not about to sit around and let it do the same to me and i know for a fact that had these new meds been available to my aunt then, she would have gladly tried them. I am not sure why they have offered your daughter councilling (i wasn't), maybe she should discuss this with her rheumatologist (they are all different). I too had all the routine chest x-rays and bloods done. These are just to keep an eye on any slight change that may occur after atarting these meds. They do the chest x-ray as some people (very rare) can have some bother with their lung function. They do the bloods to keep an eye on your liver function and your blood count, etc. All very routine as with any med, and at least you know that any wee change will be picked up and dealt with asap.I wish your daughter well with Enbrel and hope she gets the relief that i so far have felt. Please keep us posted on her progress.
    Best wishes,
    Donna xx
  • kmr
    kmr Member Posts: 108
    edited 30. Nov -1, 00:00
    thank you so much i hope so to we will see how she goes, we go on holiday in a few weeks so it will hopefully start after that , my daughter is a competitive horsewoman but was unable to compete lasy year due to the RA, but fingers crossed for this year she has started riding and is enjoying every minute, she has had a lot of swelling in her wrists, but she keeps going no matter how ill she feels she gets up and goes to the horses she wont let RA beat her she is very strong willed, i hope your treament continues to work great for you
    kmr x
  • cythna
    cythna Member Posts: 42
    edited 30. Nov -1, 00:00
    I was on and off Embrel for two years. The drug worked like a dream, but I got cellulitis in my legs, and it took weeks to clear, and during that time I was off it. Then I reduced the dose to half, ie one 25mg injection a week instead of two, and that stopped the cellulitis, but still controlled my RA. That was a good year.

    However, then I got sick, and was finally diagnosed with Crohn's disease. Embrel has caused colitis in people with Juvinal Arthritis, so my doctor thinks the Embrel may have caused it. Personally I think the Crohns predates the Embrel, but there's no way of really knowing. I'm on Humira now, which is a recognised treatment for both RA and Crohns! However, I've had two severe infections since I've been on it, and because it comes as a one size dose it's more difficult to change the dosage.

    These drugs are amazing, they have risks, but what is the alternative? Who wants to live in chronic pain? The story of Donna's aunt is so sad. I cannot imagine my life without these drugs. I would probably have killed myself, the pain has been so terrible at times. We are so lucky to live now, and not 100 years ago. (of course if we lived in 100 years time they'd probably have a cure...)

    Susan
  • Donna Mc
    Donna Mc Member Posts: 30
    edited 30. Nov -1, 00:00
    Hi Susan, sorry to hear about your health problems. I know its very early days for me yet and who knows what i may develope as a long term side effect but honestly jointwise and pain everyone has noticed such a difference in me, so far Enbrel has done wonders.. How did you know you had Chrons..what side effects did you have? and do you mind me asking what Cellulitis is? These meds are scary business but as you said what choice do we have..its like choosing between two evils really. RA has already done so much damage to my joints and i was told that without the meds i would be in a wheelchair within the next 5 to 10 years. With three wee girls to think about, i couldn't bear that thought.
    All the best with Humira and keep in touch,
    Donna x