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Rank: Advanced Member  Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Hi everyone, As you know I have recently retired and life in general is good. However, I have been taking Enbrel for over a year, and my consultant has decided to try me on Humaira. I have had to cancel the appointment twice because of underlying uti's so am due to go and start on Wednesday. Having followed Rose's attempts with Humaira I dont think that I want to go down that road, although I have only been on Leflunomide for the last three months having been told to stop the Enbrel. I am in so much pain in my feet, which are all red, hot and inflamed. I reckon that I want to go back on Enbrel rather than starting a new drug and putting up with all the side effects of it. What do you think - start Humaira or go back on Enbrel? Any advice will be welcomed!! Louise
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Louise,
Glad you enjoying retirement.
Please do not be put off by my experience of Humira, as there are plenty on it who are doing really well without the awful side effects I had.
Sorry I cannot give you advice to suggest either way but I think you should go with the Specialist advices, or of course your head.
Take care and wish you luck on Wednesday
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Louise,
just to re-assure you although i know what works for one doesn't work for all as i have learned with RA.
i started on Humira at the end of August .. and was just a tad scared to say the least !!
i have had no side affects at all and find i can use the Epi Pen easily.
i have had a good result in the first month but second month hasn't shown any change, my Nurse has re-assured me this is early days,
i take all the advice from my Consultant and Rheumy Nurse both of whom i have total faith in,
hope i have given you some re-assurance.
Suzanne x
P.S. i've also been plaged with UTI's this year.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Louise,
It really depends on the reason you were told to stop the enbrel as to whether you go back on it or not. I have been on humira for 3 years and have had no side effects apart from a small area of redness at the injection site each time which disappears after a couple of days. Hope this helps,
Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Louise I think the option of returning to Enbrel may not be a viable one after a three month break. There is a known tendency for them not to work efficiently second time round. From my own experience this rings very true; having stopped Enbrel for knee surgery and being off the drug for several weeks it certainly no longer worked as well as it had for the previous 7 years! I am now en route to Rituximab Humira and Enbrel work in a very similar way, blocking the production of tumour necrosis factor. Each has its own mechanisms and do the job in a slightly different way. Responses are equally individual so it seems to be a case of trying and seeing! The current NICE guidelines suggest that if the first anti-tnf fails the only Biologic drug available for NHS patients is Rituximab. However this drug is not generally thought suitable for anyone who is RF and anti-ccp negative. Perhaps this is why your consultant wants to try Humira? Returning to Enbrel I couldn't recommend from my own experience, it simply no longer does what it says on the box! I think I might be inclined to ask a few more questions as to why Humira would be a good choice for you. Good luck and let us know how you get on! Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Hi all
Thanks for your replies. I am still very unsure but will take everyone's advice and talk to the RA nurse when I have my appointment on Wednesday. Thanks Rose for your comments, I know you had a particularly bad reaction to Humaira, I am very sure that I do not want to go onto an infusion, so am likely to have to give Humaira a go. I am in so much pain with my feet that anything is better than nothing!
Will let you all know how I get on during my appointment on Wednesday.
Louise
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Rank: Advanced Member  Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Hi everyone Had my appointment with RA nurse today. I learned we are not living in a democracy where discussion about concerns and pro's and cons are taken into account. Saw a young nurse, never seen her before. She said the consultant said that i should try humaira. I asked to discuss concerns. She said that there are no valid concerns and the consultant knows best. So there you go. I had my first injection so I have started Humaira!! Will keep you posted as to how I get on. Louise
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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flw93 wrote:Hi everyone Had my appointment with RA nurse today. I learned we are not living in a democracy where discussion about concerns and pro's and cons are taken into account. Saw a young nurse, never seen her before. She said the consultant said that i should try humaira. I asked to discuss concerns. She said that there are no valid concerns and the consultant knows best. So there you go. I had my first injection so I have started Humaira!! Will keep you posted as to how I get on. Louise This is exactly what I am worried about. It is my day to see the consultant to tell him why I do not want to go on Rituximab. I have already had the RA nurse telling me I should go on it . Well I dont want to, I wish to try Humira first but we will see , I am dreading today. Good luck and I hope it works out for you. Love Belinda xx Treat others how you wish to be treated!!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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I didn`t get a choice on which anti-TNF drug to start, but my consultant at the time - who chose humira for me - outlined her reasons for that choice, and took into account my metabolism, so I was quite happy to go along with it. That was over 4 years ago now, and I`m still on humira. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Gosh Louise
You did not have time to think about that did you ? Never heard of the RA nurse giving it to you straight away. I had to wait ages for all the paperwork to go through and wait for Homecare to deliver to my fridge., , , Well done though - Good luck hope all goes well
Belinda I hope you get on well today.
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Hi Louise
I hope the humira goes well for you. I've never heard of the nurse giving it to you straight away either, lucky you! No time to get scared!
It didn't suit me so i'm on Enbel and doing well.
Love Shirley x
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