Cimzia anyone???

Hi everyone, I'm wondering if anyone might have some Cimzia experiences to share please?

After much waiting I finally started cimzia on Wednesday afternoon at 5pm this week. It was the loading dose, 2 injections ...boy they seem much bigger than metoject!! Anyway, all went well with self injecting. I was quite tired in the evening and went to bed early. Got up yesterday morning completely exhausted and a little more pain than normal. It felt a slightly different tired to my normal fatigue, sorry hard to describe. Anyway, I had a very lazy day and evening, still completely shattered so didn't want to push it.

Today I've got up initially feeling a bit brighter. Now, again, totally exhausted, more pain and starting to really get those fluey aches ..I know you all know what I mean and boy do I hate them!! Anyway, whilst I anticipated there may be possible side affects, this isn't what I expected as it seems to be a worsening of symptoms. I'm not saying I expected it to work this quickly either as I know I've got to be patient and it can take a little while to work. Anyone else had similar or can offer any advice etc please?

Thanks Rosie x

9 Replies

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  • Rosie, are your joints worsening or is it mainly the fatigue? I felt rough after the first 2 loading doses for about a day or two. I felt much better once I was settled on the normal doses. I had fantastic results on cimzia but came off it for very complex reasons. Do you have a rheum nurse that you could call on Monday if you're not feeling any better?

  • Thanks for your reply. Yes it is my joints that are hurting more in my main pain areas. In addition are the fluey aches which I've not had for a while. The fatigue is also a little worse, so in other words it feels like I'm flaring. I had been flaring from February til April when they agreed for me to start the cimzia. They then also started me on oral steroids as injections weren't really working anymore. The preds controlled the flare and I managed to get back to work. I had to increase the pred dose as it took so long for the cimzia to get sorted. The last few weeks it's not been controlling it quite so well as I've been getting some pain breaking through and waves of fatigue again, but not full flare.

    I was expecting a whole raft of different side effects to possibly come along when I started the cimzia but not this worsening of symptoms.

    Yes I can ring the rheumy nurse on Monday if it hasn't settled but it can take a few days for them to come back to me. I just wanted to know if others had experienced similar? Thanks again Rx

  • I had a worsening of fatigue and joint pain and swelling while on cimzia and was taken off it after 12 weeks. Although my joints haven't improved at all and are steadily getting worse and the fatigue is still pretty awful, I actually feel better now I'm off the cimzia.

    Mary

  • Hi Mary thanks for replying. Sorry the cimzia didn't work for you. What are you taking now, did they try different biologics for you? Rx

  • I've had sulphasalazine, mtx, Enbrel, humira, simponi, tocilizumab, abatacept and rituximab. I'm not on anything at the moment as I've failed on them all and can't take oral steroids. I'm waiting to see if I can get approval for tofacitinab which isn't licensed here yet but is in America. I've had 3 steroid infusions in the last 10 days and 3 steroid injections in my foot as I've been having a massive flare since I started the cimzia about 4 months ago.

    I hope the cimzia works for you.

    Mary

  • Hi Rose.

    Probably best to give the cimzia time to settle down.

    I've been on methotrexate and cimzia injections for about a year and like you seem to get really bad fatigue, it is hard to describe as it's much more than just being tired.

    On a brighter note I've seen some improvements since starting cimzia my flare ups have reduced and the pain has also reduced, also don't feel as poorly as I did, my mobility and walking has improved and it's enabled me to go back "front line " at work and go to the gym and I feel I have some sort of normal life again which is good.

    Hope the side effects settle down for you soon.

    Kind Regards

    Matt

  • Hi Matt, it's good to hear that's it's helping you. Yes I will give it a bit of time, depending how I feel on Monday hopefully a little better than the last few days!!

    I'm intrigued about the 'front line' working??

    Thanks for replying Rx

  • Hi Rosie , I have to say that I feel more tired and achey since starting the cimzia after initially feeling a bit better for a few days , I have reduced my pred. so maybe it's that , couldn't keep my eyes open last week. nurse said to be patient as it's only 6 weeks. it's all good fun eh ?! keep us posted how you get on x

  • Hi Julie, oh that's not so good I'd hoped you'd be feeling some benefits now. I don't know if you saw my post a few days ago, but after my first loading dose last Wednesday I almost felt like I was flaring!! The joint pain felt worse as did the fatigue and now I've been getting fluey aches. Hope it settles and stay in touch Rx

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