Date: 06.11.2011
From: Rich
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Subject: cimzea question.
I just wanted to ask if this has been anybody elses experience. I started Cimzea in August and until mid October things were going really good but the effects of the drug have dropped off and now, and my R.A seems to be affecting me alot more. I thought that this maybe because for the first six weeks you have to have dosing injections so the medication is doubled up, which is why a felt so good at the start, but i`m not sure. I have an appt with rheumy on 17th Nov but just wanted to ask if this has happened to anybody else whos took Cimzea. Any feedback appreciated. Thanks
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Date: 06.11.2011
From: bsk
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Subject: Re: cimzea question.
Hi Rich, that is exactly what happens. My nurse said everyone says the same thing. Happened to me too.
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Date: 14.11.2011
From: Ailsa
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Subject: Re: cimzea question.
Me too Rich, to the point I have had to stop and will be starting on Rituximab on 7th and 21st December.
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Date: 14.11.2011
From: davina
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Subject: Re: cimzea question.
Hi rich i so hope this doesn't happen to everyone has i have been on enbrel which failed going to start cimzia in December and if that doesn't work my rheumy wants me on infusions. take care hope its just a glitch. x
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Date: 14.11.2011
From: Rich
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Subject: Re: cimzea question.
Thanks bsk and Ailsa for the feedback. From what I have learned about Cimzea, according to trials if it isn`t working after 12 weeks, then it never will as 12 weeks is enough to see results. Secondly, i`m glad you told me what your treatment is Ailsa because I wondered what they might try me on next. Got appt with Rheumy on Thursday so I`ll see then but i`m always curious to know so I can look into side effects etc. It seems that thats the trade off with R.A..you can have aching,pain and fatigue or a bunch of side effects, or both. Great choice eh? Thanks again and i`ll put on the forum what treatment next.
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Date: 16.11.2011
From: bsk
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Subject: Re: cimzea question.
Hello again Rich, as I said further up, the effects do drop off when you go on to a single dose but I was told by my consultant that it can take up to 6 months to work fully. Once you come off it you are not allowed to go back on so if others don't work you can run out of options. I started on Cimzia in Feb this year and it was really only June/July that I felt the full effects. Unfortunately I have to come off as I got ill a lot.
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Date: 16.11.2011
From: Rich
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Subject: Re: cimzea question.
Hi Davina and Bsk. I hope its just a glitch too and i`ll be happy to continue on Cimzea if thats what they recommend. I don`t envy you having to have infusions so all the very best with them and I hope you feel better soon. With regards to what you were saying Bsk, this is only anti tnf i`ve tried so there are others but i`ll give it a good go before trying something else unless the rheumy tells me different. Whatever your next treatment I hope you feel alot better with it and I hope it works for you. All the best for now, Rich
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Date: 16.11.2011
From: bsk
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Subject: Re: cimzea question.
Thanks rich, same for you too. Good luck with your apt. let us know how you get on.
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Date: 17.11.2011
From: Rich
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Subject: Re: cimzea question.
Hi again. I went to rheumy today and she told me that I need to give Cimzea longer and the reason I am having trouble at the moment is because I stopped the steroids at the same time I started Cimzea 3 months ago so i`m going to continue as I am for the time being and hope cimzea works but in the meantime have steroid injections in my worst joints for now. She did say that the next course of action would be infusions so I`m hoping Cimzea comes good.
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Date: 17.11.2011
From: bsk
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Subject: Re: cimzea question.
Hi Rich, I hope it does work for you. I can see that stopping steroids at the same time might not help.
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Date: 23.11.2011
From: Louise
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Subject: Re: cimzea question.
Hi started Cimzea in the end of March, now my blood work is all normal, I dont have swelling any more.I have damage joints in both feet.. still in pain, nothing will help my feel, and my left hand and arm still hurts.. I dont feel totally normal, yet, but feel loads better then I did.. I am having my appeal with my DLA 1912/11.. I just worry the cimzea wont last, and not sure what to do when I am ask how am i now.. of course when i apply for it, i could not walk, i was up all night in so much pain.. I cant walk far coz of the pain..but my speed has improved..
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Date: 23.11.2011
From: davina
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Subject: Re: cimzea question.
hi rich i though the steroids come straight out our system as mine did. by day 3 i was having loads pain and problems. i hope that is just the reason for you.
t/c
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Date: 18.01.2012
From: davina
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Subject: Re: cimzea question.
hi rich has the cimzia helped at all, i'm starting mine 2morrow and really worried about it.
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Date: 18.01.2012
From: Nicola
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Subject: Re: cimzea question.
Hi davina, I started a month ago. Had my 3rd lot of injections yesterday! I was on 15mg of prednisolone a day when I started (I'd had a flare up when I stopped sulphasalazine) I've managed to get off the steroids totally and am now just on plaquenil, mtx and cimzia (and voltarol) I do feel a gradual improvement, tho I'm not expecting miracles til 12 weeks and if I can get off voltarol I'll know it's worked.
Don't be scared, it is weird injecting yourself, not particularly sore. I felt a bit woozy and lightheaded for about 24hrs. Just like slight motion sickness, nothing like when I started meth. My cimzia nurse was fab, stayed for ages and answered lots of questions, if you have any worries they should put them at ease. And this is supposed to be the dogs you-know-what's at treating RA, so hopefully by summer you (and I) will be feeling like our old selves. I said exactly the same this time last yr when v reluctantly started mtx..... This WILL work!!
Take care and good luck, it'll be fine!
Love nic
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Date: 18.01.2012
From: bsk
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Subject: Re: cimzea question.
Good luck with the Cimzia Davina. Hope it works better for you than the Enbrel (which I am waiting to start!)
xx
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Date: 19.01.2012
From: davina
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Subject: Re: cimzea question.
Thanks bsk. Hope you get enbral soon.
I have just had a a kidney infection and after that larengitis. Is been 1 thing after another this year all ready. Not happy but hope cimzia helps with that. X
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Date: 14.10.2012
From: bubbles
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Subject: Re: cimzea question.
hi louise, i receive dla, im on mtx and cimzia, when i started on cimzia i told my nurse i get dla and she said good, but dont mention it, as more than likey they will stop the dla. hope this helps?!
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Date: 19.10.2012
From: Sciqueen
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Subject: Re: cimzea question.
Hi I too noticed a drop in improvement after the first month. I would say 10%. I still had considerable improvements which have been sustained and I started cimzia late July 12. Consultant says I will continue to expereince improvement up to 6 months. For me its been a wonder drug. My energy levels are much improved, I do alot more. I don't use my stick, only when I have had an infection. I have had one infection sincer I've been on it so far. Less drugs are needed. I've had my mtx reduced, I am no longer taking hydroxy. Even with an infection I still had more energy.
I would say with cimzia I have 70% of normality and spend less time being down or tired or recovery. I still have aches, but they are now about 2-3 out of 10. In my own opinion I think I've acheived the best I am gonna achieve and its a case of pacing and learning to manage the disease within this parameters. Good luck with the drug and I hope it works for you also. Joanne x
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Date: 30.10.2012
From: paul
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Subject: Re: cimzea question.
i've been on cimzia for 3 years now, it is a wonder drug and you need to give it time, but i do know when my injection is due as my hands start to hurt the day before.
unfortunately i might be coming off it as i had 4 heart attacks 3 weeks ago in one afternoon, hurt a bit ;-) and spent a few weeks in hospital, i'm only 42.
i am worried cimzia helped cause this and am seeing my rheumy soon to discuss. as one of the first people in the country to go on this drug it will be interesting to know.
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Date: 02.11.2012
From: Kim
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Subject: Re: cimzea question.
Hi everyone, hope everyone is not suffering too mych in this cold weather? Paul how are you, my goodness how awful for you, hope you get some answers from your rheumy soon.
I have been on cimzia on and off for the past 9/10 months as when I first started I had really nasty chest infection so had to stop taking it, then after my fourth dose I got shingles! Infections settled down and I felt a small benefit so decided to try and reduce my painkillers and steroids and that was a mistake as pain cam back with twice the force! I have noticed now that about 4 days before Im due to do the injection my pain goes into overdrive and then get a slight relief after doing the injection. So although I do not think it is a miracle cure for me I tell myself it could have got a whole lot worse if I had not been on cimzia and Im going to persevere with it as dont feel I have any other option and Im going to have to carry on taking the 25mg of pred and the co codamol each day. Anything to keep me going!
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