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Infliximab (Remicade) the infusions, the effects and and drug induced lupus! Biologic's explained!

I first had Infliximab in 2005 just 2 years after being diagnosed with, what was believed at the time, to be Crohn’s disease. I had been on Azathioprine for 2 years and still had flare ups of disease, I had numerous courses of steroids, via IV and tablets and they were not effictive in maintaining my health. The infliximab was started with a hope to control and manage me my disease, steroid free!

I remember clearly the first infusion, I had done the research which petrified me, it was a new drug still and had limited history, it was described to me a derived from rat antibodies!!! The aim of the drug was to shut down my immune system to the level where it stopped my gut attacking itself!

Blood tests and chest X-rays were carried out to ensure I was healthy and showed no risk of tuberculosis.

On the day I was booked into the treatment clinic and hooked up to the infusion via a drip!

The infusion took 4 hours as it was delivered slowly to monitor any immediate reactions my body may have, there was a risk of allergic reactions and my body could potentially reject the Infliximab.

During the infusion I felt hot and lightheaded, I was administered antihistamines and it managed the effects. The infusion itself was painless. I remained in clinic for a while for monitoring and felt fine.

Within just 24 hours is started to feel great! I finally had some energy and the effects of the disease started to subside.

The next infusion was booked for 2 weeks later, then 4 weeks and after that the maintenance plan was every 8 weeks! I had no allergic reactions and the infusions were painless!

My treatment was working fantastically well and I continued on the infusions for 10 months, at this time I was well and my disease was in remission. I continued to take Azathioprine. I was wanting to try for another child and therefore agreed with my consultant to cease the infusions and allow it to clear my system then try for a baby! This was the end of 2005!

In 2014 after many relapses of disease, various investigations and several bouts of steroids and hospital admissions, I was recommended to try Infliximab again. It had put me into remission once and was hoped it may again.

Tests were carried out as before and the infusions were started, the initial response was not as it was before, I referred to it, in 2005, as my liquid gold! After this round of initial infusions I felt exhausted, ached and felt as if I had a virus or infection in me somewhere.

After the second infusion I felt stiff, achey and that lasted for a few days after the infusion, it was put down to my body adjusting. It was after the third infusion I began to suspect the infliximab wasn’t helping but causing me more pain. One last infusion was done in July 2014! This time is also covered in my blog ‘RAW’ and what followed was scary and devastating at the time, I started to ache and felt as if I could not open my jaw, then it progressed to my arms and other limbs, I remember clearly as I was camping at the time with my 2 children and friends. I was in pain, I felt locked in my own body and it was breaking down around me, the pain was intense and I was scared!

I was having a serious reaction and I was started on steroids and antihistamines, over the following days the reaction eased and the side effects reduced!

My bloods were tested and it was diagnosed as drug induced lupus bought on by my body producing ridiculously high levels of antibodies to the infliximab. The treatment was stopped however the disease was still in full flare therefore after more testing and consultation with my consultant, I was recommended to try Humeria!

Obviously this is just my experience, my initial trial was extremely successful and if I had not developed antibodies, it may of worked again but that is a risk when it is reintroduced. It is widely used still yet since there have been other biological drugs licensed in the UK for the treatment and management of IBD. This is my experience and not advice or recommendation. All options should always be discussed with qualified practitioners and considered in depth before commencement.

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