What a difference a few weeks make..

Hi All,

Now, I don't want to count my chickens... But last week I had my second inflixiamb infusion, having spent a week in hospital (they let me home on Good Friday evening!), and previous to that dropping 8 kilos in a week and suffering the worst flare I have ever encountered! My disease had spread to at least 40cm when they did a flexi sig the day after admission, and I spent the week on IV steroids, iron, vitamins and potassium, before my first dose of infliximab the day I was discharged.

Within 48 hours I felt great - and I went to the toilet! Now, well, I feel like I felt when I was 17, before my symptoms started, I am full of energy (not pred energy either - very different!), I feel, dare I say.. Normal! I can get up in the morning without worrying, I can go to the toilet like a normal person - and if I'm not near a loo, I can wait!

It's turned my life around, everyone can see it and hear it in me - I'm happy and smiling! And I don't smell of poo (horrible side effect of backing up!)!!!! I sleep all night (with sleeping pills right now due to the Pred, but I'm already down to 20mg and moving down to 10mg tomorrow!).

I just want to say to everyone battling - keep hope. I know it's easy to give up, it feels like there is no light. I know how it feels when medicines stop working, or just don't start working in the first place, but there is always a chance that something will work. I was due to start Vedolizumab on Monday, but fate intervened and got me on infliximab instead!

Also, you are in the right place for advice and support - the members on this board have been wonderful - thank you to you all!

Congratulations!!! I agree with you, wholeheartedly!!

Since the drug works well for you, guard against antibodies. Consider a co-drug like Imuran to prevent formation of antibodies. I am sure you would hate to lose this drug.

That's amazing!!!! You are very fortunate to have such a great result. :)

I think DB's advice is very good.

I have seen so many people with these overnight successes with remicade, but none with Entyvio. I think you fate was on your side. best of luck for a very, very long remission.

Lovely to hear such a positive happy story...good for you!

yey remi! Also doing well on remicade but it took a bit longer to get there. Happy you had such a quick turnaround.

Make sure to stay on schedule with your dosage. Sometimes I get cocky and try to push mine to 5 weeks. It never works out well.

Aimz said...
Within 48 hours I felt great - and I went to the toilet! Now, well, I feel like I felt when I was 17, before my symptoms started, I am full of energy (not pred energy either - very different!), I feel, dare I say.. Normal! I can get up in the morning without worrying, I can go to the toilet like a normal person - and if I'm not near a loo, I can wait!

It's turned my life around, everyone can see it and hear it in me - I'm happy and smiling!

Thanks for sharing. Your story has really brightened up my day. I wonder if the Entyvio you were scheduled to receive would have worked as well. No matter, kudos for Remicade!

Good to hear!

aimz said...

Thanks to DBwithUC and Dikid - I sadly can't tolerate Imuran - it really upset my liver and landed me a couple of A&E trips/paramedic visits! Quincy - the Doc mentioned methotrexate, but they are wary of putting me on anything because of my reaction to imuran, is it something I should be pushing for?

That's probably a question best addressed by your doctor. I would imagine with your history, it's probably better to avoid taking more than necessary.

I have an appointment with my doc on 19th May, after my third infusion next week - so I will ask him about the methotrexate then..