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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Things are not going well on the cimzia- rheumatoid wise, fine, but neuro problems are now very bad and i am on gabapentin by the bucket load.
the rheummy wants me to have another go at it on thurs and if I dont a flare is on the cards and my flares mean total hospital admission.
the neuro probs are now so increased that the GP has said he wouldnt take the drug.
I dont know what to do.
The Cimzia has been great on the ra but the side effects are grim.
I dont know.
there are no other drug options.
sometimes there are no easy answers.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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It's a very hard decision for you to have to make Jenni.
We are here for you whatever you decide.
Love and hugs, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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I am ever so sorry Jenni, will be thinking of you tomorrow and hope, so much, things will turn around for you.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Oh Jenni - how I wish things were different for you! You are between a very big rock and a very hard place. I don`t have any answers, but whatever you decide we will support you as best we can. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Jenni , sorry to hear its not going so well, just wondered how you are today and did you decide to have another dose of the Cimzia?
Really keeping my fingers crossed that something can be sorted out for you.
With all best wishes
Sheila
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Dear Jenni,
Have just read this and am so very sorry, that this is happening to you. For the first time you have found a drug, that is easing your RA symptoms and then the side effects are becoming unbearable. It is just not fair!
It is a very difficult decision for you to take.
I am thinking of you.
Merete
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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well, I took the cimzia. Neuro things pretty awful. They are testing me for many unmentionable things and wanted to keep me in.
I managed to negotiate things so that they are letting me come in the tues after holiday to sunny Dorset next wk.
Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, so sorry this is happening to you, it must be so very hard for you. Thinking of you, and hoping you do ok until after the holiday. We are away next week too. Lets hope the sun comes back out for us!!! BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jenni, Hope you are ok with your dose of cimzia you have been really lucky to have been so well on it. Just a thought could it not be the gabapentin in large doses causing you the neuro problems. The reason I ask is my dad was taking that and upped the dose and was really not well with the rise and had to come down again. Have a nice break and enjoy yourselves. Lorna x
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jenni
I am glad you were able to escape their clutches, the holiday will go you the world of good. Hopefully the testing of " other unmentionables " may prove to show up something, lets hope so. Interesting what Lorna mentioned about the large doses of gabapentin.
Julia xx
Sorry bit late replying, lost the thread ( shoot me now ! ) Think I ve of lost the plot lately !
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Rank: Advanced Member
Groups: Registered
Joined: 1/7/2010
Posts: 44
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Jenni i am so sorry you are having such side effects.Iam on cimzia week 8. I am getting pins & needles in my toes & more cramp in my feet,i havn,t told the rheumy as My R a like yours is so much better & Idon,t want to stop the drug. I hope they can sort your neurological probs out. as i remember your joy when you first started Cimzia, I am also on GaB, I find if I take 300 gms on alterate nights & 100 on others I am not too ga ga & I donte feel dizzy, I was on 300 3 x a day which made me ill. I know we,r all different but thought this possibly could help. thinking of you & hope thing will work out. Love Rosexx
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Rank: Advanced Member
Groups: Registered
Joined: 1/7/2010
Posts: 44
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Jenni i am so sorry you are having such side effects.Iam on cimzia week 8. I am getting pins & needles in my toes & more cramp in my feet,i havn,t told the rheumy as My R a like yours is so much better & Idon,t want to stop the drug. I hope they can sort your neurological probs out. as i remember your joy when you first started Cimzia, I am also on GaB, I find if I take 300 gms on alterate nights & 100 on others I am not too ga ga & I donte feel dizzy, I was on 300 3 x a day which made me ill. I know we,r all different but thought this possibly could help. thinking of you & hope thing will work out. Love Rosexx
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