Finally started my treatment (Cimzia)

After a long battle and many setbacks i started on Cimzia yesterday.Healthcare at home sent a nurse to show me how to inject but used to inject Methatrexate before getting really bad mouth ulcers so was fine with it. My hands have been getting so swollen that a ligament became detached so had to have that operated on by my hand surgeon who said to me "we are going to be seeing quite a bit of each other" slightly worrying but he is a top bloke. Again when you have such active disease its about a trade off between a drug that can help you and possible nasty side effects no matter how good your Dr's are the buck stops with us and our main carers who take a huge amount of pressure when we are unwell, in my case my wife is not just in that role but acts as a go between for Consultants and their PA's. i have tried very hard to take control of this but am concious that i have failed on 3 more traditional drugs and the effects of that have left me hospitalised for long periods. Here's to this drug working and getting some of my life back and having time with my Grandson, good luck to those of you who have similar difficult decisions to make, will update as time moves forward.

29 Replies

  • Hi Hawkeye, when you read your post there are some really low points but you seem to have a great insight also into the real positives in your life, having a great wife and family and doctors . I congratulate you on keeping strong and I hope the Cimzia is " the one " for you, good luck xxA

  • Yes bit of a roller-coaster trying to keep my job has been very hard, but still hopeful for the future Allanah, thanks for your supportive words xx

  • Let's hope you are so much better on the Cimzia . I got retired on medical grounds. Miss it but I knew I couldn't keep going, but if you can , that's fantastic x

    I just start Abatacept last week so we can have our three month at the same time!!

  • great idea, lets see how we get on, work have recognised me under the Equality act so they cant really get rid of me, the only thing is sick pay running out, good luck with the new treatment, x

  • You too, fingers crossed . ( if we could lol)

  • Blimey Hawkeye, that certainly put's my problems into perspective!! Well done remaining so strong!

    Really hope the Cimzia helps you.

  • Thanks for good wishes

  • Hi Hawkeye52, what a story wow you must be fed up with it all but, your words show you still hold on to positivity and that's great because sometimes hope is all we have. I really hope that these meds work for you and you recover enough to get hold of your life again and spend time with loved ones. So pleased to hear that your wife is your rock my husband is mine dont know what I would do with out him. Good luck keep us posted xxxx

  • thanks for this, its a tough disease but like you say family is everything, good luck to you also, will keep updates coming xxx

  • My, you're going (& have gone) through it. Feel pretty lucky with my lot after reading your post. I'm so pleased your wife supports you so well with your struggles. I too have wonderful support. My husband helps me so much when I'm unable to do things, even though he has issues of his own we stumble through together. He comes to any medical appointment I have though that's more to do with my brain fog & remembering what's been said!! I do hope Cimzia works for you. You put a very positive slant on things which is refreshing as it could be so easy when you have all that to cope with to go the other way.

    Hope you can give your Grandson huge cuddles & play lots soon without the pain you're obviously suffering now.

  • Thanks for this, emotional words from you but so true, i think i hit rock bottom in Jan after having a knee replacement which didn't go wrong as such bad reacted badly with an already compromised immune system, my inflammation markers were nearly 400 and i did question if i really wanted to go through this, but again as you say its family and some brilliant care from my knee surgeon that got me through, i feel that they have all invested in me so cannot give up, its great that you support each other with appointments etc you need that with these types of often complicated medical conditions, thanks again for your kind words they have given me a lift

  • Just writing as I feel! You clearly have good support & an excellent medical team working to give you the best help in spite of a rubbish condition. I hope you take that positivity & channel into healing (bit deep!) & hopefully with the help of your new regime start to have a better quality of life.

  • its not deep simply because the brain is more powerful than the body anything that makes you feel better should not be underestimated

  • Hi Haweye what a journey you have had. Truly hope this is the drug for. All the best x

  • Hi so hope this drug works for you. Your journey so far must be very challenging for you wishing you all the best x

  • Hi what a journey you have had. Truly hope this is the drug for. All the best to you x

  • So sorry about the many replies. Used a smart phone!!!!!!!! dam thing not so smart as it told me unable to submit.

  • Did wonder, but made me laugh with your smart phone comment, thanks!

  • its ok made me laugh, have had the same problem before, thanks for kind wishes, am hopeful x

  • Good luck with the Cimzia. I know how tough it is when these drugs 'fail' one after another. After mentally preparing to take them, it is upsetting when they don't work, as well as physically & emotionally exhausting dealing with side effects and more severe reactions. I wonder if your rheumy has suggested taking anti-histamines as 'cover' which is what I do to stop side effects? I really hope this drug works well for you and gives you more time to do things you enjoy (and less time in hospital). All the best, Fran

  • thanks Fran, will suggest that, am on steroids still but to be reviewed in the next clinic, will def suggest that, thanks for the tip, you are right about drug reactions the heartbreaking aspect to RA drugs is they take so long to get into your system, am really hopeful about the Cimzia, are you on anti TNF treatment?

  • That's ok, I should have explained I take a 24-hr antihistamine the day before the injection, on the day, and the day after. It's just one option if you're very sensitive to medication, good idea to talk to the rheumy. Yes, I'm on another anti-TNF, Enbrel, started it on 30th Jan and I found out today it's having a positive effect which is good news. My bone erosions have stabilised and inflammation has gone down massively (just posted about this in a separate post).

  • yes will mention it to him, really positive news that the drug is working, really happy for you, great news :)

  • Thanks for your good wishes Fran, hope you are also feeling as well as you can at the moment and like me enjoying warmer weather?

    . yes it is hard when you fail, as i did on 4 standard drugs, the other issue is how long the standard drugs take to work, over 3 months or so (how diseases take that long for a drug to work?) so far so good on Cimzia, the only issue maybe how well it works and how much pain will be there anyway because no drug can repair damage already done by having no treatment for sometime?

    Again thanks for supportive comments and i also hope life is ok at the moment for you?


  • Hi hawkeye Just want to wish you the very best of luck with your cimzia journey. I started cimzia after failing alot of the other drugs last year. It worked really quickly for me, about 4-6 weeks, so hoping it does the same for you. I had no side effects but unfortunately have had to recently stop it because it lost its effect. Sounds like you have good support around you and a very positive attitude, you are on the right road.

  • Hi Hawkeye , good luck with the cimzia , I started it last week too , lets really hope it helps , let us know how you get on x

  • same to you Julie, am hopeful x

  • How's it going today? Feeling any better?

  • All good so far, certainly a noticeable difference, mainly less pain in the hands in the morning, also not as long to get going, am on the loading dose so not sure if the effects will continue to improve things, also my consultant hasn't decide what drug i will have with it, overall though the best thing is that so far i have had no side effects at all, given that i failed on 4 other more traditional drugs thats very good news.

    How about yourself? what treatment are you on?

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