Hello all, I've had some ups and downs whilst being on Enbrel this last six months, but I would say there are are more ups than downs. To start with I don't have any stiffness at all and my pain levels are reduced. However, I had a bad flare-up a few weeks ago and discovered from the clinical nurse that anti-tnf's treatment does not stop a flare, disappointing. Anyway, I had a steroid injection, which as most of you will agree gives almost instant relief.
So, I had an appointment with the clinical nurse last Friday 1st Nov and she said she's pleased with the overall benefits I'm having and that in a few months she will start reducing my methotrexate until I'm totally off it. She said that most people prefer to come off methotrexate !! this was music to my ears because I'm definitely one of those people. The only pain I have at the moment is from the damage to my feet and ankles which occurred before I was diagnosed and put on medication. I'd love to hear from anyone about their experience on Enbrel. June xx
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June i am not allowed cimzia due to accidents and a chest infection. At the moment i am struggling as i have chronic fatigue syndrome to add to the mix.The dr has said this goes hand in hand with ra/fibro,so life is a bit hard at the moment.Hope you have a lovely weekend too.xxx
Oh sylvi, I'm sorry to hear that you are having such a rough time of it. I presume you tried cimzia and had a bad reaction to it !
Fatigue is something I find difficult to cope with and that's just from RA, but you've got the added extra of chronic fatigue syndrome and I can't imagine how distressing that must be. Please forgive my ignorance but, what is ra/fibro ? June xx
You are not ignorant June so don't even think about it. I haven't posted laterly. You weren't to know so don't you go thinking like that my friend.. Rheumatord arthiritus, then fibromyalgia,now with CFS i have my share and i wouldn't wish it on anyone.xxx
Hiya that's such good news and long may it continue - sorry I have no experience of Enbrel but I have also just started Cimzia and yes I agree with you my main aim is to get off MTX too it's really upsetting my tummy now , think my body has had enough of it ! Good luck June with ongoing improvements Claire x
Thank you Claire, and I hope you have good results with Cimzia. I have had some tummy troubles with MTX too, and then I have patches of no problems, and then it all kicks off again. So lets hope we both get off it before too long. June xx
Hi June, that really is great news, and it will continue o get even better. I have been on Simponi now for almost 5 years and my Rheumy says I am as good as I'm going to get, and that's fine with me. I still need help with the pain in my back and legs and hips, but it doesn't stop me from doing what I like, so that's progress. All the best to you! Loret
Hi Loret, it's good to hear that you are doing OK on your meds and you have a good outlook on life.
I think that the majority of us have to cope with pain and it's not easy at times, is it. My clinical nurse advises that I take paracetamol 4 hourly every day backed up with co-codamol when needed. To be honest, I was brought up not to take any tablets unless it it's absolutely necessary so I find it very difficult to take them every day. Anyway, I have this belief that you get used to pain to some degree and it only bothers me when it is particularly bad. Thank you for your lovely response, all the best to you too. June x
Hello June - I've been on enbrel since 2009. The combination of that and MTX brought my levels of immunity down too low resulting in frequent infections. I stopped taking MTX and enbrel has been working brilliantly ever since. I only experience flares if I have to come off enbrel eg for knee op. Hope you get as good an outcome. Best wishes Jude
Nice to meet you on here Jude, I've been quiet over recent months but it's good to be back.
Thank you for telling me about your own experience on Enbrel. It's very interesting to know that you've been on it for a long time, a bit of a comfort really, particularly as you've been better since stopping MTX.
I'm on 22 and a half mgs weekly as well as Enbrel and though I was warned that I might pick up bugs more easily and have more colds, I've actually been OK. Having just said that, I'm probably tempting fate !!
I think my immune system is very strong though.
I'm really looking forward to coming off MTX as I've never been very happy about taking it for all the reasons everyone talks about. Apparently, I will be weened off it gradually, so it is going to take time.
I have just been on enbrel for 6 weeks but I could feel the difference the next day. My stiffness is a lot better and much more energy. My blood results were much better too only problem is site reactions but these are getting better. I don't take mtx as I had a bad reaction to it earlier this year.
Hello Wildschonau, I'd love to know how your site name is made up, I find people names fascinating and sometimes it's easy to work out, like "judetheobscure". If nothing else it gives the brain box a bit of exercise Anyway, it's wonderful to have relief from stiffness isn't it, and I too have more energy. But, it did take a good few weeks before I felt the benefits as there was quite a big fight going on in body between Enbrel and my strong and determined immune system. Some days my immune system had the edge and on other days Enbrel was definitely in the driving seat. I spoke to my Rheumy about this and he laughed, but said that is precisely what would be going on in your body until one or the other gets overall control.
I've not had a problem at the injection site, but I'm pleased for you that the problem is getting better for you. It's good to touch base with one another June xx
Hi my site name is the name of my favorite place which is a small village in Austria which we have been visiting for 20 yrs, what about yours? Where do you live - I am from Yorkshire.
Hi, Petal is the nickname my husband has always called me and number 2 is only because I use number 1 for other things. I live in South Northamptonshire in a small village just a couple of miles from the Silverstone race track. The Yorkshire dales are high on my list of places to visit at some point, so beautiful. Yorkshire is a big place though, I realise that. I hope you are having a good weekend. xx
Hello, mi mary. Sorry to hear its rough for you at present...I've just started back on MTX after a rest due to vomiting and blisters etc...I'm keeping my fingers crossed. I send you a smile maryx
I find it helps me.But I am still in pain daily, but not as bad as previously.
As for the methotrexate, like you I was on 22.5 mg and I wanted to come off it. I got down to 12.5mg but then the pain got worse so I have stayed on 15mg. But at least it's an improvement.
I might try reducing it again at some point.
Reading the replies it's good to hear that some people have managed to come off it altogether.
It's good to hear that you have been on Enbrel for a long time and are doing OK, apart from Pain. No available drug to combat RA ever seems to help the pain, does it. I've recently had a steroid injection in my bottom and though it has had a really good effect on the flare up I was having, the pain in my feet, ankles and tendons remains the same. My clinical nurse told me that the injection would not help the already damaged areas, So at least it has confirmed the damage already done.
Thank you for your reply, at least I now know not to expect too much from coming off MTX. Yes. some people have managed to come off it and many more would like to, but it is still the most used drug to start people on when newly diagnosed, it would seem. I hope you have had a good weekend. June xx
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- sorry I have no experience of Enbrel but I have also just started Cimzia and yes I agree with you my main aim is to get off MTX too it's really upsetting my tummy now , think my body has had enough of it ! Good luck June with ongoing improvements Claire x
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