Can anyone offer info about the anti tnf Cimzia please?

Hello all,

Thanks for all your helpful responses the last time I posted a question, it's really good to know there are so many people out there taking an interest.

Hopefully, I will be treated with the anti tnf drug Cimzia in the next few weeks as I failed miserably with the D-mards. I have been researching Cimzia as much as I can but it is a fairly new drug and the info available is quite limited. Can any of you lovely people offer more information please, such as side effects and how effective the drug is?

Any responses are much appreciated.

Jewels xx

11 Replies

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  • google.co.uk/url?sa=t&sourc...

    g=AFQjCNGmPE-GWrheNE12djLpCi57P_Gfz

    Have a look at this link. I have no personal experience with this drug but had a read thru this one and It seem to answer all the question you asked.good luck with the trial . Carole

  • Thanks so much, I'll have a good read through it all

    x

  • This is a re-post of an answer I gave someone else, I hope it helps...

    The studies show it's effective in around 70% of people, so it's worth a try. I'm still waiting for it to be effective, but it can take 3 months so the decision to continue will be taken in October (at 3.5 months). I don't have any side effects. If you put Cimzia in the search box you'll get lots of info from people it is effective for.

    Generally, the injections are ok - they don't hurt 95% of the time (one did sting, no lasting effect) & I don't get a reaction at the site of the injection. I wasn't looking forward to sticking a needle in myself (!) but it was nowhere near as bad as I imagined. Tummy is better than thigh.

    The syringes are brilliantly designed especially for people with difficulties with their hands (by the Goodgrips people).

    Although I'm an NHS patient, around here the pack is brought by a BUPA delivery driver after the hospital issues a prescription to them. They're very good at communications, I get a phone call the day before and a text with a time of delivery.

    Also it was a BUPA nurse who came to my house (by appointment) to tell me all about it and help me with the first injections and then rang me after the 2nd ones to make sure it all went well. She was brilliant and I had her number if I needed to ring her.

    The first 3 times you do the injections you have 2 at the same time. After that it's one. It's once a fortnight. You cannot inject it earlier than 14 days after the last injection, but you can have it a day late if you want to change the day you inject (think carefully about the day you start it, and if you've holidays coming up, work it back so it fits around your life)

    You get a pack of information with the first delivery, an alert card to put in your purse/wallet which you'll need to show your dentist, as well as a sharps bin to dispose of the needles safely.

    I hope you get an excellent result with it x

  • That's great, thanks for taking the time to reply, I really appreciate it.

    I do hope it works for you too, good luck.

    x

  • If you read up on all the side effects, they can sound really scary. But, the worst ones are really rare, and the more studies they do on the fairly new anti-tnfs, the more they are realising that actually they are relatively safe drugs. I guess they were just a bit more cautious in the beginning until more people went on them and they got more data.

    Be a little bit aware of some of the potential problems though, and make sure you report anything unusual to your rheumatologist.

  • Thanks for your advice, much appreciated x

  • Cimzia has changed my life. Prior to going on Cimzia I was having flares every 6-8 weeks. I have been on Cimzia for about 21/2 years now and have only had 2 flares - each on after major operations, which is to be expected.

    I had no social life at all before but that has now changed. I can actually make arrangements to meet people or go places and know that I will be able to keep that arrangement.

    Also my feet were really swollen and the only shoes I could wear were trainers. Not very good when you want to wear smart trousers or dresses. Another reason why I did not go out, I could not wear appropriate clothing. My feet have now gone down a size and I can wear nice shoes again.

    Jo

  • Hey Jo,

    Thanks for your response, it's good to hear such positive stories. I know Cimzia doesn't suit everyone but I really hope it suits me, fingers crossed the funding will have been approved in the next two weeks and I'll start treatment.

    Shoes are a big no-no for me too, I can only manage in flip flops and as a result of walking in the rain etc, I have picked up something itchy on my feet - not nice!!

    In terms of flare ups, I'm having them daily and they move around my body on what seems to be a 36 hour cycle usually affecting 2,3 or 4 major joints at a time. It's at its worst when it's in my chest as it feels as though I have a small dog standing on my lungs. It is in both feet, ankles and hands constantly and my left shoulder too. But worse than the pain is the fatigue, has the Cimzia sorted your tiredness out?

    Thanks again, really good to hear from you x

  • Just picked up on your comment that you picked up 'something itchy on my feet' - if you're starting Cimzia you might need to have started treatment for that first (if you haven't already of course). It's worth asking your GP about it. I had a similar problem and the nurse who taught me to inject myself wouldn't come until I'd started treatment.

  • Thanks for that, I'll get it checked out x

  • So sorry to hear how bad your RA is. I really hope Cimzia works for you, if it does you will notice a big difference in how you feel.

    I'm not sure about the tiredness. It must have helped as I am not having to endure flareups which sap any energy. Trouble is I have problems with my spine (osteoarthritis not RA) so I take 2 opiate painkillers for this and they make you feel tired. I am certainly not as fatigued (as opposed to tired) so, yes, it has helped.

    Jo

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