Cimiza advice please 🙂

I'm soon to have the funding agreed (I hope) for Cimiza : my first biologic.

My question is: what time of day and which day of the week is it best to start my bi-weekly injections? I suppose I'm thinking if they're likely to make me tired, have headaches etc . as I work full time. I understand that I'll have a loading dose for the first few weeks. Also, would I have it on the same day as the metoject?

I understand that we're all different but any advice would be greatly appreciated.

13 Replies

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  • Cant really advise you, me and Cymzia were short lived as i only got to dose 2. But i was advised to go for thursday morning to give time for it to settle that night and get through worst it could throw at you over the weekend. But pkease remember the success rate is very high and the majority of people have little or no reaction. Best of luck.

  • Thanks - it's really useful to hear of other's experiences 🙂May I ask why you only got to dose 2?

  • Ok well you asked and so i will say but i have to emphasize i am one person with one reaction so please dont let it stop you trying, however one thing we have to have on this site along with all the support and empathy is honesty. I was on all usual in order of steroids , steroid jabs, dmards, mtx, hydrox etc, none worked and i continued to escalate at alarming rate with esr up in the 90 mark and ccps in the 600s rep not 60s but 600s thats 30 x base reading indicator and 10 + times maximum on scale.

    So they put me on Etanercept and told me the usual number of weeks to get results, i had no site reaction but felt a difference literally immediately, something seemed to turn off like the thermostat on a fridge reaching temperature, i could still observe the RA in visual terms and stiffness but i didnt feel as unwell. That wore off and slowly the exhaustion and lethargy and sweats came back, so time for dose 2, this time i felt like i had the worlds worst alcohol symptoms and i dont just mean headaches but also nausea and stomach cramps, i then began to get hotter and hotter and dialled 101, as soon as i told them what i was on they had a medic to me who gave me antihistamine and flyids due to low blood pressure and blue lighted me to A + E, more antihistamine and fluids and within an hour i was fine, kept on observation and sent home. So no more etanercept, BUT back to square one, so after 3 months they decide to try Cymzia, first dose no problems all good, 2nd dose bad reaction but this time as soon as it started i pulled my cord and got a carer her and they dialed 999, carer stayed with me and disnt have a clue but to be fair thats not expected, a medic got to me fast and leterally ripped off my pyjama top when he saw me and the carer almost fainted, apparently i had red and white stripes travrling up my body changing colour like a cameleonor as she described it like a barbers pole. I woke up in hospital 24 hours later and apparently i had anaphalaxis and adrenalin criscis, was treated again on spot with antihistamine x 2 and adrenalin, i apparrently crashed twice in ambulance and again in A and E but apart from what they had done there was no other treatment, went home 24 hours after waking up with no further treatment. But then found each time i took mtx i was reacting worse and worse, i really didnt understand what the hell was going on and it was eventually explained in simple terms that effectively in the same way that RA is incorrectly activated by immune system i was now incorrectly re acting to therapies and body was in a tug of war between immune system reacting to fight and also reacting to reject therapies which were supposed to help me. Effectively my immune system refused to be knocked out by the meds and not only took on the RA but also the theraputic drugs. I am now only able to tolerate hydroxichloroquine and tons of analgesics at maximum dose that can be administered without supervision because my RA is unfortunately rampant in every way. I was then called in by my Rheumatologist who said last ditch effort was to offer me Ritoximub as in patient but that i should research as much as possible before making decision. So i checked everythung i could especially in USA as they had it there much longer. Basically the score was that uf you have setious reaction to Ritoximub because it is intravenous it can be big problem to reverse it, even in hospital it can be terminal and the figures were bad. So i decided against and my rheumy said he felt it was right choice due to the 2 previous reactions.

    So here i am with raging destructive oermanent flaring RA, i havnt walked for 5 years, i havnt slept for nearly 2 years and for 2 years i have only been able to use my thumb and half of adjacent finger on each hand using 2nd knuckle on finger to try and form a crab type grip. I have 2 -3 hours rest twice a day induced by morphine but no real sleep, i have permanent sweats and inly 20% hearing left due to constant ear infections, i have 12 teeth left due to gum and oral infections despite best efforts by dentist. I spend all day everyday on adjustable profile electric bed to allow me to change positions to lessen pain. I havnt been able to tolerate solid food for over a year and have a liquid protein diet as the abalgesics have basicalky destroyed my digestive system, but without them the pain is so unbearable i cannot even hold my phone.

    I have to say that my rheumy says its among the worst hes seen reactively and he sent one lab result back because even he thought it was wrong. I have been nega unlucky probably one in ten thousand and it was NOT the biologics that caused it but my reaction to them.

    Sorry but you asked.

    Regards Leon

  • My goodness Leon, not sure how you cope, you have been through so much and still going through it. Have you tried any alternative therapies, but quite how you you would have the energy to try them I really don't know. Sending gentle hugs to you, you are so brave.

  • Bless you, im not brave, brave is when you have a choice and way up the consequences as best we can and decide to take what we hope will be a more gainful option despite knowing its more risky. I have no choice, i am real fortunate having eventually got my benefits sorted that i got a place in one of the new "extra care facilities" as they are called, the one i was in was opened 6 years sgo and i cane here 4 years and 2 days ago, they are now building loads more because it works and allows assisted living without being a home as duch because we have our own flats with 24 hour on call via pendant, mine is purpose built for wheelchair with a wet room and is safe, secure and warm and as long as my benefits dont stop i have an unlimited tenancy. In that respect i am very very fortunate, i have little chance of losing my home, i have no worries about rent or bills because i have none. I have no dependants to concern me and no responsibilities, that is far better than the position that so many are in who have 33% of my disease level but they are far far worse off than me and have so much stress and so much to loose and fight anxst and anxiety and fear everyday, in that respect i am very fortunate, their disease hurts them and their family which is far harder than any medical problems i face.

  • Dear Leon. So glad to hear you are not struggling alone, what a wonderful setup, have never heard of something so good and is ideal for you. You still have compassion for your fellow sufferers, dispite all you are having to deal with in connection with your health. I am watching a series at the moment regarding immune problems and why the meds often fail, it's only just started, you have to sign up to it, not very good with sending links, not sure how it going to turn out and is very long winded. My RA is fairly well controlled on my meds, but after 31 years the downside is other problems popping up to be dealt with. Am a positive person and sounds like you are dispite all you problems. Really admire you. Take care. X

  • Thank you for your kind thougjts and words.

  • hi i went on cimzia i was having it tues morning as my my methertrexate was thursday mornings good drug but didnt agree with me i had two shots of it and wasnt well but i do have high blood pressue so cant blame the drug for that on nothing at the moment as still got high blood pressure doc said it gradually coming down i wish u good luck there has been lots of good reports on cimzia we are all different xx

  • Hi moomin,

    You're not meant to do MTX and biologics on the same day. I've always injected MTX on Fridays, so it made sense to inject my biologics on Thursdays before bed. I had an excellent response to cimzia but became ill with vomiting and it was assumed to be cimzia. I was later diagnosed with another disorder but my CCG refused to fund it once it'd been stopped. 🙁 I'm now in humira and doing quite well.

    Best of luck!

  • Thanks crashdoll- that's a shame that they didn't fund it after you were unwell. I have mtx on Monday morning before work- or the evening if I've had a glass of wine or 2 over the weekend 😊I'm pleased to hear that you're doing well with Humira🙂

  • I inject my Cimzia on Thursday mornings. This is because the the nurse who came to do the training came on a Thursday!! My MTX day is Sunday. I don't recall any advice about timing of MTX and Cimzia.

    I have had no problems with Cimzia, my understanding is that most people have very few problems with Cimzia. I did find that I got a bit of a reaction at the injection site when I used the thigh. I believe that being male and a cyclist there is only a thin layer of subcutaneous fat on my thighs and the drug was going into muscle rather than under the skin.

    I now rotate my injections round my navel with the schedule on my phone on an eight week cycle.

    I was also advised to inject straight after a shower and not bother with the alcohol wipes. If you use the wipes you should wipe for 10 seconds and then allow 30 seconds for it to evaporate fully before you inject. The alcohol can cause problems if not fully evaporated.

    I hope this helps.

  • Hi I started on Cimzia in March and you can pick what day suits you. I havn't had any problems with the injections or any headaches thank goodness. I am on methotrexate tablets so cannot say about the injections. They have really hel

  • Sorry they have really helped me. Good luck.

    Regards Carol

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