Well as you all knew my Crohn's had been in a flare since March time this year and I had been in to have a colonoscopy and MRI scan in May. My results had shown that my combination of 6-mercaptopurine and allopurinol were no longer working for me. My consultant had to make the decision on what my next course of drugs would be as my Crohn's disease is medication dependent. Hearing this off my consultant of 2years was a shock as it is the first time someone has told me this in the entire 5years of being diagnosed. I can see why he had said this as every time my Crohn's flares up I cannot manage it by myself with my diet I always need to get intervention from my medical team and put on steroids or I am stuck in hospital on umpteen different drips and IV steroids. This time I had gone to my GP and explained everything and that was when she said it was my Crohn's as it was not my normal flare up symptoms I was getting it was different and now we know why as it had moved into my small intestine and was no longer active in my large intestine. So my last consultation with my consultant in June he said we were going to try Infliximab (Remicade) and if it does not work then I will be on my last available option which would be Ustekinumab (Stelera) before it would most likely be asking the guys in charge of trial drugs to get me on the list. I am only 26 years old and I have nearly ran out of options to control my Crohn's disease as I am medication dependent. I do not want to be kept on steroids for ever as I have been on Budesonide now for 5months and it has started to affect my joints as I cannot take calcium supplements due to me having a gene called familial hypocalciuric hypercalcemia (FHH) as my calcium in my body is higher than normal and I rarely have to take calcium now because of the gene. It is constantly monitored though to make sure it is under control as when it gets really high I suffer from more frequent headaches and I drink a lot and I mean a lot this is usually around 5litres a day. So on the 24th July I had started my infliximab journey and a week later I am struggling with the fatigue but I have started to see small improvements with my Crohn's but it is still early days and I have 2 more rounds before the frequency of my infusions is put to 6 or 8 weeks and then go from there.
This was my infliximab infusion last Tuesday and I told the nurses who were looking after me that it was my new friend (I hope it is anyway as I hope that it works for me then I can live a better live and hopefully not need to panic where all the bathrooms are when I go out).
No comments:
Post a Comment