Brand change of adalimumab: Since I was changed... - Behçet's UK

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Brand change of adalimumab

juliebover profile image
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Since I was changed from Humira to Imraldi, I've had a flare of my symptoms. I spent 5 days as an inpatient with inflammation of my heart again and my bowels have flared up too. I also had a migraine today for the first time in months.

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juliebover
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Legomum profile image
Legomum

Oh no, so sorry to hear this. Hope you rest and start to recover soon.

I felt the pressure to switch from Humira to biosimilar drug but have resisted so far. NHS England have said “at least 80% of existing patients should be switched to the best value biologic (which could be the originator or a biosimilar) within 12 months” despite there being no proof of the medication being equally effective. Humira is the single medicine on which hospitals spend the most, at a cost of more than £400 million a year. So sad when it comes down to cost and not tailored care.

Is there any chance of you changing back to Humira if it was working??

magician profile image
magician

Very sorry to hear this. Can you switch back to Humira?

Thanks for the heads up. I have been on Humira since 2012. Overall it’s been good for me, despite a few ups and downs. On doctors’ advice (ophthalmologist and immunologist) I will be reducing Humira frequency (from every 2 weeks to every 3 weeks), starting this week. Am a bit anxious about it...

All the best

🙃

Dogwind profile image
Dogwind

Hi

Sorry to hear this. My situation and symptoms different to yours but the theme is the same.

I was switched from Humira to Imraldi probably about six months ago. The switch was instigated by Bristol Eye Hospital (BEH) who are treating the Uveitis aspect of my condition.

Unfortunately BEH did not communicate with the Birmingham Behcets centre. Sound familiar?

Within about four weeks I could tell that the Imnraldi was not as effective as the Humira, though initially nothing definite , I just felt that it was not working so well. Long story short a flare up occurred. BEH started me one a course of Pred and did an antibody test. Their logic being that if I was now showing antibodies to the Anti-TNF then they would have to consider some other alternative treatment.

Yesterday I attended at the Birmingham Behcets centre. They confirmed that the BEH had not contacted or consulted with them which I find an interesting tact especially as the Birmingham centre was/is funding my Humira. As BEH was not funding my Humira there was no reason to take me off a known working medication and put me onto an unproven one! The only reason to change was to save money.

The Rheumy, at Birmingham, said that in many cases patients who show the relevant antibodies still respond well to Humira and if the patient is responding to treatment they effectively ignore the test results. Science is currently at a loss to explain this.

The Rheumy at Birmingham said that had BEH consulted with them then they would have said not take me off the Humira. They said that in single condition cases the change to Imraldi is not usually an issue but in multi-condition cases, such as Behcets, in over half of cases the Imraldi does not work, with the resulting flares.

I was told that the cost difference between Humira and Imraldi is £200, The Birmingham centre thought that this was insignificant considering the benefits and wondered just how much more than £200 the switch had so far cost the heath service.

I should be being switched back to Humira but how long that will take is anybody's guess.

The bottom line is that in their strive to save money patients are being taken off an effective medication and put onto an unproven medication without any consideration of their medical condition or the potential outcomes.

I wonder if any lessons will be learnt?

juliebover profile image
juliebover

Now I think I'm having an allergic reaction to the imraldi. Have taken the injection this eve and just cannot stop itching...

Lara101 profile image
Lara101

I can sympathise... Imraldi was not as good as adalimumab for me I started to have flare ups again, joint pain again, i developed itchy skin so I’d scratch in the night without knowing and caused a blood type rash and bruises, and I was so so tired all the time too .I had been on adalimumab for about 8 years and it worked wonders, in fact changed my life, so I was frustrated that I was changed to the new cheaper imraldi .. ! It was also so painful too in comparison ! My rheumatologist finally gave in and changed me back to adalimumab again and happy to say feeling so much better again !

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