Stopping cimzia ?

Feeling really panicky now, have been getting lots of twitching/ tingling/ vibrating sensations over past 6 month, which consultant knew about and waiting for neuro assessment but now having seen the RA nurse friday they have said i have to stop cimzia until further notice and have had neuro assessment / tests.They are concerned re MS. My appointments 2 weeks time but then i expect to wait for their tests etc. How long does it take for cimzia to get out of your system? Does this mean that it will be down hill all the way and revert back to the misrable state i was in before ? Has anyone else had to stop and then restart anti tnfs? x

13 Replies

  • Hi Cherry, Please don't worry yourself as I was in exactly the same position as yourself last July. I had been on Cimzia for about 11 months and at first the results were really positive. I then started getting twitching/tingling and unbearable pain in my wrists, hands and arms. So bad at one stage my husband called 999 ! I too was taken off Cimzia and underwent neuro & nerve tests and nothing bad showed up. I was so frustrated as I thought the doctors didn't believe the pain I was in. I was then put forward for Rituximab as the doctors decided the Cimzia had lost it's effectiveness with me. So far I have had one cycle and am awaiting second cycle in May. I feel much more settled although still stiff in mornings and night and with difficulty walking but better than I was before treatment. I'm sure the doctors will get to the bottom of this for you and fingers crossed you will be given a second biologic to try also.

    Good luck with it all.

    Love Sue x

  • Hi Sue, thank you so much for that, I guess the best outcome would be that its side effects of the cimzia rather than another added diagnosis- RA is enough to cope with! Its just so frustrating and feels its one step forward and two back all the time. Its only 6 months ago that i was singing the praises of cimzia, now im left worrying what its done to me! I like you used to be very active, and then also woke in feb 10 having changed over night to someone with severe RA, maybe the west country was invaded by aliens that infected us during the night? Thanks again, x

  • I have had the same as you went in the ambulance to the hospital please could you telling me where you are now and how the new treatment plans I have worked currently they are all saying they don't know what treatment plan to give me as they have no other patients listed with the numbness tingling and strange sensations were your symptoms worse in the left side

  • Hi I wondered how you are getting on as one year ago I was on CIMZIA I called 111 and was taken in th eambulance today hospital I had no feeling for ages and when I did was pins and needles and numb legs arms horrid spend one week in hospital had every test going they were amazing at Ipswich hospital I was advised that the side affect I had experienced was very more rare and I was taken off all my drugs apart from Celebrex and sulphasalazine I have an appointment to see the consultant next week with a view of what happens next the problem being I am too scared to try any other drugs in case I have another adverse affect what is the update with you

  • Wow I'm going through the same thing. My doctor added medicine and told me to keep taking the shot. I was on enbrel, but wasn't doing well with my psoriasis, so he whiche'd my medication. I'm so happy I find this site..

  • I have just had to stop taking Cimzia as I had an operation. I had no problems restarting and started to feel better within 2 days. I do know that they are finding that for some patients Cimzia does not work after stopping.

    I am now very concerned as I have to have 3 more major operations and my RA consultant wanted me to have 3 months back on Cimzia before stopping again. Yesterday I was told by my Colposcopy consultant that after viewing my scan he does not want me to wait 3 months before having a hysterectomy. That op is now set for mid April.

    I don't think my RA consultant is going to be very happy about that but when a doctor says that you have possible signs of cancer you can't very well go against advice not to wait for an operation.

    I can only pray that Cimzia will work again for me as it has been a life saver. I do hope you get your problems sorted out soon. I know how awful you must feel having had such success with medication in the past. Do let us know how you get on.


  • Thanks Jo, gosh life is never simple is it ! Good luck with the op, as if RA isnt enough to cope with!! x

  • I have been on Cimzia for two months. Had the three load-up injections and felt super for the first four days. Started having pain which increased incrementally up until I had my first monthly injection. I thought I had experienced pain before, but never like this. The pain all over my body was excruciating! Along with that, the nightmares, nausea, depression, suicidal ideation and extreme fatigue and dizziness. That lasted three days, then all was gone. Then again in two weeks, it all started again. It's like it comes in waves. After the second time, my doctor said to stop. But how do you stop, when it's in your system. I just had another bout of extreme fatigue. This usually last two to three days where I will sleep 10 hours, wake up exhausted, work for a couple of hours, sleep another 8 to 10 hours until it passes. I'm missing a lot of work. I'm just wanting this to end.

    I have tried, Humira, Embrel, and now Cimzia and have not tolerated them at all. The only worthwhile results for pain and inflammation have come from Prednisone. Aside from the 50 pound weight gain, it seems to be the only one that works for me. I'm through with all these crazy meds.

  • I have been on Cimzia x 5 years and have found relief from arthritis and Ulcerative colitis. Recently Cimzia has not been effective with the intestines. I am seeming very tired x 4 months, sleep is very infrequent and with vivid nightmares. Sweating is profuse day or night. T1 diabetes x 59 yrs on pump and cgm. My neuropathy is worse so walking 5 miles a day is difficult w/syncope. I too wake up exhausted (for no reason).Dizziness has increased. Due to T1, Prednisone is out of the question (no). This is frustrating. I thank you for sharing possible Cimzia side effects w/us.

  • Hi,

    I suffer severe RA & fibromyalgia, since the age of27.. Almost 20 years now. I started on enbrel after trying 'everything else' back in 2001, it was a wonderful drug:-). After having to stop for a surgery in 2013 and having complications I couldn't restart, this was delayed for months. After almost a year off it and getting very unwell, I restarted and I am very sad to say, it no longer worked for me. I was devastated. After more months of pain and red tape I have now started on cimzia, I am 3 weeks in, have had 2 double (loading doses) and as yet am not feeling better, in fact I'm sure my pain is worse BUT ever the optimist, I'm hoping this will improve. On hindsight I wish I'd never had the elbow surgery ( I also ended up with nerve damage from the surgery and still don't have a straight arm anyway :-/ )

    Staying positive :-)

  • I have had the same symptoms that you had for 9 weeks now spent a week in hospital went in the ambulance I was the pins and needles tingling and numbness so bad.

  • Yes me I have had all off the above!

  • I had to stop as I had tingling pins and needles ended up in hospital for a week one year on I am no better still taking gabipentin to mask the. Symptoms they haven't they won't try anything else until the symptoms are gone so currently I'm on sulphasalazine and steroid depo injections every three months I wondered how you were getting on now and have your symptoms gone

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