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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 31
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i i had been on this drug dince june as my RA was very bad and i felt so much better.since November i started falling over and had problems with my bladder and had a nasty fall and ended up in hospital were i had further falls i am only 43 i stayed in 6 days and was sent home with a walking frame.things started to improve slghtly but i struggled through Christmas and i had a fall on Dec 30 and was admitted again and the same thing happenrd but the fitted me with a cathter i was in for 8 days and sent home still with the catherter and they showed me what to do and gave me a bag of spares .I have still been like this since then i went to my GP who said you are a difficult case what do you want me to do about it.In hospital one of the DR said i have MS so that got me worried/.Yesterday i went to see my Etenercept nurse who was brilliant and straight away said come of etenercept straight away as it is rare but it can cause MS symptoms.She is also going to send me to a Neurologist just incase she is wrong but she is positive its the drug and all ant tnf will do this to me so i am so scared because without this i was housebound and in so much pain 
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Cazza I have been following your recent difficulties on other threads and my heart goes out to you at this time. I'm so sorry to learn of the problems you have been facing and I'm sure it must feel as though it will never come to an end. Be assured it will and already you are on a new path with the possibility of light at the end of the tunnel. Anti TNF drugs are not for everyone and it seems that you might just be one of those people. How fortunate that the Enbrel nurse was able to spot the signs of unsuitability and offer you advice to come off the drug immediately, and follow through with a referral to a neurologist to be sure. There are alternatives to anti TNF so please don't feel that it is a backward step. Many people go through a number of different drugs until they find the one most suited to their condition. For those who have not been successful on anti TNF Rituximab seems to be a popular alternative. This works in a completely different way by depleting the B-cells, this link will tell you about how these cells work. I'm on Enbrel which has been successful for me but others on the forum are on alternative therapies and am sure they will offer their thoughts. I hope you get some relief from the problems soon and things start to pick up for you. Do let us know how you go on. Take care, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Cazza,
I'm so sorry you have to stop this drug but relieved that your nurse recognised the problem.
I hope the neuro symptoms wear off soon , and don't worry, there are other drugs you can have, as Lyn says.
Are your rheumy team seeing you soon to discuss the next step for treatment for you?
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Hi Cazza,
Sorry to hear that you are having such an awful time but glad to hear that you are now on a path to get to the bottom of what's wrong.
I was distraught when I found Anti TNF's were not working, but was given hope by the fact there are other drugs out there that may help, I do hope they find something else that suits you better.
My best wishes to you and thoughts that things will improve for you in the near future.
Sheila
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 74 Location: North Lincolnshire
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Hi Cazza,
Sorry to hear that things aren't too good at the moment! :( it is most frustrating when a drug works but the side affects mean you have to stop. I hope things get sorted out quickly for you.
Hannah x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Cazza I'm not sure whether you have picked up on this, but Mary Lewis has had similar problems. If you would like to e-mail me on jeamboyd@yahoo.co.uk I will let you have Mary's contact number so you can chat this through with her. Lots of love Jeanxxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 216
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Hope you checked with Mary first, she might be out dancing. Lx Always be aware that what you do might hurt others........and if it could, do nothing without careful consideration of the consequences
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 31
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having a large dose or steroid by injection in the morning because i have been in so much pain i phoned my consultant who faxed a letter to my surgery .I only phoned on wednesday so quick service i hope it works i am bed bound at the momet t its awful i hate this disease and wish it would go away
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hope the steroid helps you Cazza.
Have you got some strong painkillers?
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Dear Cazza
I hope the steroids make you feel much better, be sure to rest for 48 hours, even if you feel much better.
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Cazza,
How are you today and has the steroid started to work?
love,
Barbara
XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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We're thinking about you Cazza. Hope it's working.
Julie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 31
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steroid injection took two days to work but feeling much better .Even went to Asda today as i was feeling better i thought i could manage on my crutches but i passed out and hurt both my arms as they were still stuck in my crutches so Asda called the ambulance to check me out and they thought i had broken the top of my right arm and my left elbow so i spent most of the day on gas and air and morphine luckily no bones broken just badly bruised and i cant bend either arm it never rains but it pours .I hope i will be feeling better in the morning bye for now cazza x x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Oh no, Cazza, what an awful thing to happen! You will be feeling very shaky, so please take extra care tomorrow. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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oh cazza. Not sure how I missed this- you are mad going round ASDA you know!
the fainting can be to do with the steroid. it is the sudden jolt of it and then (more importantly) the sudden stop, plus you have had such a rough old time on the Enbrel lately.
I have a lot of empathy with you here, because I ended up with serious complications on the Enbrel in the end (renal failure)
but I am still here!
Love to you
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Cazza- sorry to hear about all this.
Hope that you will get plenty of rest and be feeling much better soon
love
maria x
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