Cimzia arrived today!

Was very excited - but when I opened the first box I started to feel sick with nerves! I have had to come off of Enbrel as it has stopped working for me (was wonderful for 2.5 years), Enbrel is easy as the injector pen does it all for you. Seeing actual injections is freaking me out, still waiting for the nurse to 'phone and make an appointment for my first actual injection. Like many people, I have a needle phobia but when faced with acute onset sero-negative inflammatory arthritis nearly 3 years ago I had to 'get over it', feinting every time a needle came near me was not on! Especially when the consultant approached me with the steroid injections for my knees - and then said I was on bed rest for 24 hours :)

It is so disappointing when a successful drug stops working, I had 'forgotten' how ill my body is and now it has hit me again. It would be interesting to hear how other members have handled self-injection. I feel that I will disappear into a floaty, imaginary world whilst injecting - it helps having practised meditation for several years (to cope with suicidal depression). So bring on fairy land - just don't tell the men in white coats!

12 Replies

oldestnewest
  • You are giving me the heebie jeebies with this as I am on Enbrel have been since last December, as it's working I thought we've clinched it! But you are saying it's stopped working and now have to use an actual needle, helpppppppppppppp! I would be exactly like you if this happened to me. Apart from the symptoms coming back again how else did you realise it was not working for you? Good luck with the new set and keep us posted.

  • Hi Georje. I realised that Enbrel was not longer working for me when I had to start using my walking stick again and that I was slowing down - literally! I couldn't walk so far and stairs became mountains. This happened over a few weeks and I contacted my Nurse Specialist for an appointment to change meds. I was warned that the 'average' working life of Enbrel is 4 years - although for some people it can last longer, so you may have a good few years of Enbrel yet :)

    Apart from the 'needle' thing I am not too scared as there are so many biologic drugs available and being developed now to cover us for a couple of decades at least. And we are fortunate living in the UK where we do not have to worry about insurance companies refusing to pay for treatment (although the Nurse did say that he had to get approval to prescribe the new drug as budgets are being tightened). One excellent thing about Cimzia - as far as Hospital Trusts are concerned - is that the producer is so sure of its efficacy that they supply the first three months for free.

    Will let you know when the nurse has been and the first injection is over - was going to try it alone but my sensible head kicked in :)

  • I am still using my walking stick or crutch when out as I don't feel safe enough yet, either that or I have become too dependant on it. I know that's not the case really as when out I do end up holding on to the person I am with besides the aid to carry me though. I use Tesco's as my guide to see if I can get round the shop. I have gone from walking one or two aisles to the whole shop but am still sitting when we reach the tills. Need to combat that yet, this is at a small one, the bigger one I only go half way and before having to give in, hubby and I then communicate by phones! Still, I am vastly improved on this time last year, and only walk with a limp when completely shattered and feel as though all my bones are about to cave in.

    Yes I do agree we are lucky in that we have the NHS, even though our consultants have to apply for funding to enable us to have these drugs, I feel incredibly humble at times, more so when I hear of people here who are not on these drugs as yet. Friends of ours who live in Spain asked if I had to pay for this drug when I mentioned the cost, they were pleased when I said no. Good to hear that your sensible head kicked in before your training, would not want anything to go wrong for you. Take care.

  • Hello!

    I have been using Cimzia for nearly a year now, and I have a needle phobia!

    I inject methotraxate and Cimzia and I am fine. I wont say it doesn't hurt a bit, as my skin is sensitive, but I have learnt to do it and am not in floods of tears after.

    My trick, make sure the vial is warmish, do hold it at 45 degrees to your body - and take your time. I know this sounds crazy, as I just want it over and done with, but believe me, it hurts less when done slowly - so I do deep breathing, in a sort of chanty way, and tell my self how brave I am and that it will make me better. I do cry after when Im having a flare, but I allow myself that moment - after all I have this hideous disease and I hate needles!! :)

    I hope this helps, and that I dont sound patronising, cos Im not, I promise, I just find this works for me (my practise was done on a plastic foam filled cushion and an empty needle - I did the first dosage (2 vials) and cried for ages after)

    Please message me if you want to, I would love to know how you get on!

    Good luck and try not to clench up, relaxing is best - I promise!

    Take care,

    Pen x

  • Thanks Pen, slow and sure sounds good. I meditate daily so doing deep breathing should relax oneself whilst performing the deed!

  • As a type 1 diabetic I have been injecting myself 4 times a day for over 20 years, but still I am needle phobic, when someone else is holding the needle! To help stop it hurting/stinging, hold an ice cube over the area for 45 seconds before injecting and rub after you have injected as it helps disperse the liquid.

    Hope that helps, it does get easier honestly xxx

  • Ice cube - cool! :) Will definitely give this a go.

  • I changed from Enbrel to Cimzia about 14 months ago because Enbrel wasn't working. One reason it wasn't working is I had a painful reaction to the suspension in the prefilled syringes and had to go back to making up my ow. That meant two injections a week and I couldn't always make myself suffer the pai. - silly I know! Cimzia is fortnightly and as pj68 says, go slowly. It's a thick gel anyway, but going slowly is usually completely painless in my experience. (I do bite my tongue as a distraction! )

    Hope it goes well for you.

    Susan

  • Hi Susan, no - don't think I will start biting my tongue, though have been known to clench my face and grind my teeth whilst injecting Enbrel :)

  • Hi Lady Jules

    As a nurse you would think I am fine about injections. I can stick needles into anybody - thin needles, thick needles - you name it I have done it. I have been injecting myself with MTX for over 2 years and even now I still dither about before I put the needle into myself. I usually have to count 1-2-3 in my head and then force myself to do the dastardly deed on the 3. Once it is in, it is fine so why can't I inject myself without dithering?

    You will be fine, take a deep breath and count to 3.

    Wendy xx

  • Hi Wendy, it cannot be easy being a medical professional and then having to take one's own advice!

    Slow breathing and counting sound good - along with the ice cube trick. I do find that once one starts dithering it just builds and builds until I get into a whole 'why am I doing this to myself' thing and get totally distracted. Excellent procrastination skills, before I retired from teaching I would find such tasks as cleaning the windows far more attractive than a pile of marking :)

  • Thank you everyone for your kind and considered replies. I am still waiting for the nurse to get in touch so the Cimzia sits in the fridge - glaring at me every time I reach for the smoothie! My partner has even taken to showing guests how large the injections are as a party trick :(

    I am not feeling good today, not sleeping well as no meds in system and aching all over. I had forgotten about how painful this disease can be - and how invasive. Cramps in my feet and legs and yesterday whilst out my right knee tweaked and then threatened to collapse on me! When I first became ill I fell onto the living room floor whilst attempting to turn the tv on, called my son down from upstairs to help me up and he burst into fits of laughter :)

You may also like...