IBD INFORMATION PLEASE!!!

[Diamond12345]

Hi all,

UPDATE

Has anyone had any experience with taking VEDOLIZUMAB.

my daughter is about to start taking this new drug by infusion.

Fingers crossed it helps her.

Love to hear about anybody else’s use of this biologic style drug.

Many thanks

[Blossom65]

Hi

My daughter has been on it for over 2 years and was great until recently

[Diamond12345 in reply to Blossom65]

That is good to know.

I hope she will be okay , I guess you will need to find a new drug.

Good luck with your daughter.

[Anniemouse]

Hi I have just had my four loading doses of vendolizumab and i have just had my caplprotectin levels done and they are 45 way down from 1578 which was in 2014

so they seem to be working for me , i know its early days but positive results so far ....

plus i have tweaked my diet , to no lactose / dairy and gluten .... not one hundred percent free but where i can daily, especially in my home . maybe that's as helped too.

I help this helps a little . Appreciate everyone is different .

Good luck and keep us updated please .

[Diamond12345 in reply to Anniemouse]

Delighted to hear this and happy you replied to me.

It is so nice to hear others experiences with this drug.

Good luck and let us know how it goes .

[HJ10HMO in reply to Diamond12345]

Just had my third loading dose. First one felt great afterwards but after the second I had 4 weeks of feeling really ill and ended up with an enormous abscess on my neck so had to cancel 3rd and go on antibiotics. Had third one today. Found first 3 days you are tired and can feel a bit flu like but the constant pain is getting less so hope it is going to work for me. Good luck its worth a go if it makes her feel better.

[Diamond12345 in reply to HJ10HMO]

Sounds promising, hope you feel loads better very soon.

Scary to get an abscess on your neck. Glad you got it better.

My daughter has a pilonidal sinus , it is a abscess on her tail bone. It is calm at the moment but it does worry me that the drugs will start it up badly due to lack of white blood cells.

I guess we will have to wait and see.

Thank you for the information, keep us posted on your journey.