Hi.
I’ve been on humira for about 6 years and it has been life changing.
I’ve now been told it will change to Imraldi as it’s cheaper.
I’ve read some posts on here about side effects and ineffectiveness. This worries me.
Has anyone:
Refused to change (successfully)
Swapped without issues?
Thanks in advance
Hi I've posted on this last week . I to was on Humeria for just over 2 years fantastic life changer . I was swapped over to Imraldi I had two injections and horrendous side effects . I have now been stopped and slowly the side effects have gone it's taken nearly 3 weeks to completely get rid of the headache . My skin is almost clear I have about 5 patches left on my legs but my neck and arms and face are clear . I'm seeing the consultant next week and will fall at her feet if need to to get funded to go back , but I'm not holding out much hope . I feel totally abandoned by a department and I'm trying hard to not have it as a conspiracy theory as I complained about my consultant in December . I hope you're ok and all will be well . Please scroll through or search there have been several posts on this in the last week we need to keep each in the loop with the bio similar change 🤗🌷
Hi
I have had all my pain and stiffness too after a swap from Humira to Imraldi, and have just seen the Rheumatologist today.
I was so well on Humira and felt like I had my life back She is going to ask that I go back onto Humira so it is worth asking..
Would be interested to know how you get on..
There is some advice about changing to biosimilars on the NRAS website.
NRAS has been working with NHS England, alongside other patient organisations to design resources for patients and health care professional's on the topic of the Adalimumab biosimilars being introduced into clinical practice.
We would like to capture your views on how, if you’ve been switched to a biosimilar of Humira, that process has worked and been handled.
Please help us by completing this 10-15 minute survey: bit.ly/2I1WfbX
[If you have been asked to switch from Humira but have not yet done so please come back to complete this survey after you’ve made that transition.]
I'm on enbrel, started it November 2012 and went straight into remission and still am. I was told November 2017 I was going to switch to a biosimilar drug, I asked if it didn't work could I go back on to enbrel and was told no, they would try me on another one. I was horrified, I was on a drug that was working so well and if I switched and it wasn't working I had to *try* another drug. Why change something that is working so well?
I started researching biosimilar drugs for enbrel and the more i read the more determined I became that I was going to challenge the decision. I typed up notes explains in detail my thought, fears and stated valid reasons why I didn't want to switch. I handed these notes in to my specalist nurse who gave them to my consultant. Last November I saw my consultant and he told me I could stay on enbrel.
I was in a better position than you because the biosimilars for enbrel had been available some time and I had read quite a few reports of people not doing very well and having to go back on enbrel, I put that in my notes. Plus, I got costings to the NHS of the drugs and the biosimilar ones are not saving that much, from what I've read the bio ones for humira are considerably cheaper, so they will probably try to push these drugs more for the savings. I do think that hospital are sending letters to people telling them about the switch in the hopes that they will just go along with it.
I think that we, the patient, should have some say in what toxic drugs we inject into our body. They say that we have a team of people looking after us, I think the most important person in that team is the patient. I did read NICE guidelines about switching at the time and it clearly stated that the decision to switch is made between the clinician prescribing the drug and the patient, I don't know if that still stands.
I had an appt with my Rheumy nurse in December and we had a discussion about this.I am on Humira and it has really worked well for me.I was allergic to Enbrel when I first started biologics,and there seemed to be some problems with the Enbrel to bio similar not working really well for patients that were established on Enbrel.
Basically it was my wish and rheumy department wish to keep me on Humira. I received a letter from the Hospital Pharmacy to say I was being switched to Imraldi (It was a blanket type letter). I rang rheumy department and was asked to ring Pharmacy to discuss the matter,and even though during the discussion I quoted three times that it was a shared patient decision, the pharmacy would not acknowledge this.
My rheumy nurse rang me 30 minutes after this conversation as she had received an email from Pharmacy about me. The rheumy nurse had a discussion with my consultant and it was resolved, that I was staying on Humira.
The Nice guidelines do state that it should be a shared decision with the Consultant,patient and Pharmacy and should be a clinical decision.
There is information on the NRAS site about patient shared decision. I would give your Rheumatology Department a ring about this.
I have no problem with biosimilars per se, but I absolutely do believe that if all is well then the switch should not be made. If it ain't broke don't fix it. I would like to see costings for the extra expenditure when someone has a bad reaction, or the biosimilar just doesn't work.
These costs should be factored in to the decisions.
Well done to those who have refused the change. These decisions should be joint ones, as per the NICE guidelines. Patients deserve to be treated as people not numbers.
I
I changed from Enbrel to Benepali and then back to Enbrel. It was never as good once I swapped back and has now stopped working completely after 14 great years. Next step is Rituximab.
I've read before that when people stop taking enbrel for operations and have been off it for awhile it just doesn't work when they're put back on it. I just can't understand why the switch you if your well established on a drug and it's working well.
Hope Rituximab works well for you. x
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