Hello all I am on Cimzia injections one injection every 2 weeks. Had a phone call today from consultant at hospital, I am due for my 12 month check up and he said they are reviewing patients who have been on Cimzia for longer than a year and are doing well on the drug. He wants to see me about reducing injection to every three weeks. Wants me to have a scan of my hands first. Just wondered if anyone on Cimzia has had their does reduced.
Regards
I've got ankylosing spondylitis not RA but am also treated with cimzia. When I signed all my documents prior to starting the meds, one of them stated that the medication may be stopped in the future if I responded well and I took this up with the national ankylosing spondylitis society.
It turned out this was just a blanket document that anyone on biologics was given to sign. NASS told me there is evidence that RA patients can be taken off biologics and will retain the benefits gained by taking the medication - obviously the NHS will do this where appropriate. AS patients however who have been taken off their biologic medication will regress back to where they were prior to starting the meds. Despite this I've still seen mention of patients within my health authority (mid Essex) with AS being asked to come to review with a view to stopping medication due to "remission". I asked my rheumy about this at my last appointment (I've not had one of these letters) and she was very evasive.
So my understanding is that the reduction in your meds is probably guideline with a view to seeing if you can do without your (very expensive) cimzia.
Thank you so much for your reply they are sending me a letter from the hospital for appointment on 20th May to discuss it with me. They are going to scan my hands and take it from there. I am in a much better place than I used to be so don’t want to go back. Hope it continues to help you. I think it will be the cost of injections.
Regards
I'm sure cost is a factor. Hopefully reducing the dose will not have any impact on you and if it does, it will hopefully be put back up to fortnightly.
Hi there I'm under the same trust . I have now no diagnosis or biologic . I was diagnosed with AS and placed on Humeria I then received a letter to advice that I was being placed on Imraldi as a bio similar . I then received a letter to say that the trust is reviewing all it's AS patients in a audit . I'm now not eligible for any biologic I don't have anything that they can see wrong . My life was amazing on the Humeria pretty crap now . However I know they're were people in before and after me who are probably going to be told the same thing and that my original consultant must be total rubbish which is a surprise as he is the lead teaching consultant at Adenbrooks go figure . I've just received their letter advising my gp 😡
I've seen a lot on facebook that people have had their AS diagnosis taken away - how, I don't know as I thought the diagnostic criteria was pretty tight! My bloods were and are always completely normal, but a chance remark to a GP in 2016 resulted in a test for the hla b27 gene which I was positive for. I was referred to Broomfield rheumatology dept (GP - a different one - wasn't keen to refer, saying the gene didn't really mean much until my husband lost his patience and pointed out that the test had only been done because I was exhibiting the symptoms already) and the diagnosis took about 12 months from there. The MRI was apparently "very impressive" (took me a while to realise that was not good) and rheumy wanted me on biologics immediately, saying without them I would be fused in 5, maybe 10 years time. I wanted a chance to look all this up first and be able to make an informed decision so I deferred it until my next appointment in 3 months time, at which I said yes, I'd take the biologics. I then tested positive for latent TB so my start date was delayed and I have since had about a 2 month lay off while I battled repeated dental infections (the tooth was removed in the end), so I've not been taking them for even a year yet.
How did they come to give you a diagnosis and can now say they can't see anything wrong?! You have to fulfill certain criteria to get the biologics anyway? Took me 25 years to get a diagnosis after being written off as hypochondriac, depressed, anxious, making it all up, so fully understand how demoralising it is to have your diagnosis and meds taken away 
I've been told the same as you it took nearly 16 years to get diagnosis I've had sacro illitis confirmed on X-ray which was enough for him plus a family history of psoriasis and RA I tested negative for bloods but enthesitis cleared up on taking steroids and then the Humeria by 3 injection it was as though the past 15 years had not happened . I have asked how I could have been Mia diagnosed and placed on such a toxic drug no answer except the consultant was doing his best for me . Well I now wish I had never made a complaint to PALS I know that they are going to eventually discharge me and my future is great lol I have taken a medication that improved my life but now I'm sitting a home , it hurting to walk the bursa in both hips are burning and so sore , I'm back to sleeping less than 2 hours a night and my back is so tight but as I've now been told it's in my head I can't fight it . To finish it off I was to see the specialist podiatrist I've been waiting just over 10 months twice the appointment has been changed I can't get a pair of shoes on because of the pain and swelling 3 hours before the appointment it's been cancelled . . Sorry rant over I'm sure you will be fine I'm just feeling sorry for myself . I wish you well keep in touch xx
Hi, I’m having the same problem as u, same hospital and I think I was with the same consultant as u when I was diagnosed. I was taken off Cimzia prior to an appointment without telling me, at appointment told me I’ve not got AS but wear and tear arthritis! I told them how bad I was before I went on Cimzia and how much it had helped me but locum consultant not interested in any of my symptoms , just offered medication I can’t take due to side effects! I’m starting to flare up and so worried about going back to how bad I was before I went on cimzia ! I’m just about to send my complaint to pals but not sure it’s going to make any difference. Have u had any luck with pals? 😬😥
Hi lovely PALS were absolutely bloody useless they have never been back in touch with me since the initial complaint . I've got a letter from the consultant that has so many errors in it I've just circled them I'm due to see her end of June unless they cancel as normal . I'm really like you struggling now and I have my ESA review Monday this should be amazing lol I can't believe it seems to be happening so much pm me and we can see if you have same consultant initially x
Hi went to hospital for my appointments today, had ultrasound on my hands and then saw the consultant. Well 3 docs in the room and felt a bit overwhelmed st first. He had the results of the scan and said they couldn’t reduce the injections as it was showing signs of inflammation in both hands. He said I will have another ultrasound in 6 months to check how things were then. He if the inflammation was not there would I try reducing the injections. I told him I would rather not as I did not want to have any flares. He said it would be my decision and would not be forced to reduce the drugs. Will have to see what happens in 6 months time.
Regards
That's reassuring to know they won't reduce the dose if you are unwilling to do so, one less think to get stressed about!
I am on CIMZIA since 2013 and never had my dose reduced.
Thanks for your reply I think it must be the cost. The hospital are sending me an appointment and they want a scan of my hands and then looking to put me on injections every 3 weeks instead of 2 but of course you run the risk of a flare. I will have to see what they say but thanks for your info.
Regards
I think it depends on how well your condition is controlled. I was on Sulphasalazine which was gradually reduced to zero and my MTX dose has come down from 25mg to 10. So generally reducing drugs is not uncommon. I hope you are well and stay well. All the best.
Nope same dose. That’s great news though
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