Went to see my wonderful RA Consultant last week. I take Enbrel and it has made such a difference to my life. I have been taking in for about 7 years and have had few side effects. My recent bloods showed ESR only 8 and CRP 1, my DAS28 score is 1.71 which relects the excellent ongoing response to the anti-TNF therapy.
When the RA was at it's worst, I never would have believed it would be kept under control like this. If you are suffering, bellieve me, there is light at the end of the tunnel, and if you are contemplating anti-TNF drugs, grab the opportunity with both hands, life is for living, enjoy it whilst you can.
Muffin.
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muffin
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I went through Hell and back for one year before I had the Enbrel and since then it has just improved year by year. I have spent the last four years having operations to repair the damage the RA caused to my joints. The last one I had was about 8 weeks ago when I had a third torn rotator cuff repaired and had a new shoulder put it. I feel a new person.#
That's great, glad you have had such a positive result. It's good to hear of people who do well (tho' shame that NICE don't seem to feel the same way about handing it out!). Polly
I also think it is disgusting that Enbrel etc. is only available to some and not others. I was seriously thinking of moving to the Cotswolds a few years ago but the one and only reason I didn't go was my Enbrel. This should not rule your life, but it rules mine, but I am now free of RA pain.
Muffin.
Well done Muffin - we all need a boost and good news is always just that. If it works so well for many then I just can't see why it's not offered to more people. Surely the expense of the anti-tnf drugs is offset by the saving on unnecessary operations and the expense of drugs not working - let alone the cost in benefits because of RA sufferers who a forced to quit employment etc? Do they have research people who work these costs out and compare I wonder? I bet not. Anyway long may it last Muffin I'm delighted for you - and yes it's important to seize the day I agree! TTx
I agree the treatment should be available to all. I had a year or Hell before I gor Enbrel, I had to give up work four years ago due to pain, and although the RA is settled, I have had many operations putting right the damage done to my joints.
I must say I feel the same about Humira, the change it has made since I started is unbelievable. Most of my problems, are caused by damage before I got anti tnf. Which I was lucky to have got.
I think the anti-TNF treatment is wonderful and should be availble as soon as RA is diagnosed, I am sure it would save money in the long run. I have had four years of operations putting right the damage caused by RA. but I had the last one 8 weeks ago - a new shoulder joint, and hope this is the last for a while.
Muffin.
Thank you so much Muffin, I just started on Cimzia about 6 weeks ago and am already becoming impatient having found limited results with MTX and near nothing with hydroxychloroquine. Really pleased for you and gives us all hope!
I could not stand MTX, I made me really ill, I tried it by mouth and then by injection and just couldn't stand it at all. I told my RA Consultant and she stopped it and because I had tried various ways of treatment, Enbrel was the next things available. They don't give you Enbrel until you have tried at least two drugs and it these don't help they go a better drug.
At my worst my ESR was 45 and this was when I was given Enbrel. It is only prescribed by an RA Consultant and comes direct from a hospital prescriptions, (which you don't have anything to do with) and it is delivered to your home, as it has to go into a fridge It is an injection which you are shown how to do it
You need to speak to your RA consultant and see if it is available in your area, it is one of those postcode lottery things whether you get it at all.
According to the NICE guidelines the anti-TNF treatments, including enbrel, are only recommended as options for the treatment of adults who have BOTH of the following characteristics.
• Active rheumatoid arthritis as measured by disease activity score (DAS28) greater than 5.1 confirmed on at least two occasions, 1 month apart.
• Have undergone trials of two disease-modifying anti-rheumatic drugs (DMARDs), including methotrexate (unless contraindicated). A trial of a DMARD is defined as being normally of 6 months, with 2 months at standard dose.
Docs interpret the guidelines a bit differently, so no harm in asking, but it's expensive so they don't hand it out easily. Polly
I too had to give p work. Give it time, Enbrel worked for me, I really do hope it works for you. The relief is tremendous. I have spent the last four years since I gave up work putting myself back together again, by having several operations on my joints. These have also been successful and I feel a new person.
Don't give up hope that your active life it over. I too went through Hell for a year or so, but the various treatments available didn't suit me, then I was put on Enbrel and have't looked back since.
Another thingto bare in mind is that there are many biologic therapies for RA, with new ones coming on all the time, so if one say enbrel doesn't work another one will. I know it's time consuming but at least hopeful.
I imagine that all these injectables & infusions will be in tablet form in times to come, maybe won't help us, but at least our decendants will be helped. Lol.
Xx
Hi Muffin, don't know how I missed your post until now....
anyhow, love it all the same, when I was newly diagnosed just over a year ago, I was desperate to hear news like this, thankfully like you I started Enbrel last August and DAS was 1.35 by December, we are lucky aren't we
Yers, long may it continue. I have had RA for 8 years, for one year I had a life of Hell, and during the remaining 7 years things improved slowly to where I am now. Thank goodness for Enbrel!!
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