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Rank: Advanced Member  Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Hi all, I appreciate that this drug has probably already been discussed and for that I will apologise up front. I have today been visited by a Healthcare at home nurse and started with my initial double dose. I know there will be people out there that have tried this drug so any info would be appreciated.
John.
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Hi John,
Have just seen your post. I have been on Cimzia since feb. 2011.
It has been a bit of a rollercoaster for me with very varying bloodtest results. I had very high crp`s and esr`s before I started, although I was on 25 mg mtx for quite a long time. The 2 first bloodtests were excellent, going from over 80 crp to 4, but at the end of the year, it was creeping up again, so my steroids were increased from 3 to 5 mg. In april my consultant was talking about changing me to Rituximab, but as it would mean infusions and sounding so much more involved, I have resisted, and I think my next bloodtests are going to be better, as I feel quite well at the moment. I have also been warned, that if I come off Cimzia and fail on another anti TNF, I will not be able to go back on Cimzia.
I wish you luck, stay positive. There is an excellent chance, that it will succeed for you. I do not regret being on it, although it has not been a miracle cure for me, but I am still hopeful. I have had quite a lot of traumas in my life for the last 2 years, loosing both my mother and my lovely brother, so I do give all the stress I have had some of the blame.
What do you think of doing the injections? I find them rather cumbersome and hard to push into my thigh. Am glad it is only fortnightly.
Merete
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Rank: Advanced Member Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Hi Merete,
I was beginning to wonder if I was the only person on it.
I have only had the first double dose so far, my bloods are due next week. At the moment I feel a lot better, All swelling has gone down considerably. I can lie in bed without moaning and tossing and turning. A lot of my pain has gone and I can actually get down the stairs (first thing) standing up. I found the injections a tad awkward mainly due to the fact that I inject my metho in my thigh so I have to use my tummy for this and I was a bit reluctant at first. The liquid is also a lot thicker than the metho, so takes a while longer to inject, My wife was also there to see what went on as in the past when I have been really poorly, she has given me my injection. The nurses were good and are coming back for the next dose, which is another double. Previously I have been on 10mg of steroids daily, which has been long term, to try and help but as you will know that is too high a dose, So I have to have all the bone density scans etc and take a variety of calcium drugs to help. I am hoping that Cimzia will remove the need for all this.
I am remaining very positive, mainly because it took a change in my consultant before I could get a change in my drug regime. He seems to be a lot quicker on the ball, tell's it how it is (which I like) and has talked to me about my condition. The first thing was telling me to lose some weight (21 lbs so far) and start reducing my steroids. Because I have been on a high dose for a long time, it has been quite bad coming off them. I have only managed to drop 3mg in 3month's, but I am hoping as the Cimzia takes over I can reduce eventually to nothing, My consultant has told me that is what he is hoping for.
Thank you, John.
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi John Sorry bit late here but my laptop has gone to the menders  so using my sons when he is not around to catch up on things. I started Cimzia end of last July, having failed on infliximab which I took for nine months ( far too long really, but there you go ). Immediately I started Cimzia I notice practically overnight that I had much better energy levels couldn t believe it to be honest. From then on things have improved and once adding the methotrexate by injection I have now gone into clinical remission which is brilliant as you can imagine. I always suffered with very painful shoulders/wrists and since I have been doing regular daily exercises in this region the aching pain has really reduced. Going back sometime there was a post about the importance of exercise and keeping the joints moving, and how much it can help manage the pain control. I hope all continues to go well for you  Julia x
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Rank: Advanced Member Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Thank you Julia, I seem to have picked up a cold this week and cannot stop feeling cold. I hope it is not a reaction to the drug because rheumy wise I feel good ! I have been asked to participate in two arthritis studies, both quite involved, I have started both and would not like to let anybody down. So I have everything crossed that cimzia works. John. 
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Rank: Newbie
Groups: Registered
Joined: 4/13/2011
Posts: 2
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Hi, this is a first for me on here, i have had ra since 08, i have been on cimzia for 18 mths, but for some time now i have had problems with my sinnisis and ears, i have seen the ent doc who says ther is nothing wrong and it is the cimzia jabs that is causing the pain and problems, i have untill early dec to decide if i come off of cimzia and have infusion of rituximab, i also take methertraxate, please is there anyone who can help me with my problem,
thanks for reading this, marion 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 Marion Hello and welcome on here I have been on Cimzia for about 14 months now and fortunately I haven t had any side effects at all. To be honest I am surprised your doctor has put down the sinnisis and ears problems to you taking Cimzia, I have had a quick look on the Cimzia's home page and nothing is mentioned there to tie the two together, whether your ENT doctor thinks that due to the CImzia damping down your immune system this has caused this issue might be his reasoning. It would interesting to have your rheumy doctor thoughts on this too perhaps. Sorry I can t be a bit more helpful on this point. Julia x
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Rank: Newbie
Groups: Registered
Joined: 4/13/2011
Posts: 2
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Hi Julia,
Thanks for getting back to me, my rheumy doc says that it is a side effect of taking anti-tnf drugs, she has givin me a choice of changing to another that is injected once a month or having ritux infusion, i hate needles and its becoming a problem for me to self inject, the cimzia has worked great for my R/A but its the sinus and ears that are the problem, i dont know what i am going to do yet.
Marion 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 Marion
I can understand your dilemma especially as basically the CImzia is doing such a good job of controlling the RA, it seems such a shame there doesn t appear to be anything they can do to ease the sinus and ears other than coming off it.
Keep us posted on how things are going for you.
Julia xx
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