Vedolizumab: Hi currently sitting in... - Crohn's and Colit...

Crohn's and Colitis Support

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Vedolizumab

Easby profile image

Hi currently sitting in hospital male aged 64 Llifelong Crohn's have blood transfusions, iron infusions and B12 injections. Previously had Neutropenic sepsis mesalazine killed my white blood cells.

Anyone using vedolizumab how is it going? Any info! Once my issues calm moving onto this drug any info appreciated. Have read Nice report and drug info.

10 Replies

Hi there… I have Ulcerative colitis and diverticulitis and have been on Vedolizumab since January 2021. I was in a pretty bad state when I started it and this was my last resort after trying many other medications. It has been amazing for me and I would say just about all my symptoms have disappeared. I don’t seem to have any side effects from the infusion which I have every 8 wks and my last calprotectin test was down to 100 from 5,300!!

I really hope you have as much success with this drug as I have. Good luck x

Maduza profile image
Maduza in reply to Janeywoo

I also started this April 21

Have started to get strange back discomfort and blocked ears with headaches. Have you had anything like this at all which you may not have linked to the drug?

Janeywoo profile image
Janeywoo in reply to Maduza

Hi there…. Funnily enough I do have back ache but I put that down to my job so I go for regular massages which seems to help…

No other symptoms except fatigue, aching joints and occasional bloating but I put that down to just getting older.

Just got results from my recent calprotectin test and it’s down to 15!!!! so it’s definitely working to keep the inflammation down…

Maybe get your ears checked out and ask for an x ray on your back to rule things out… x

Maduza profile image
Maduza in reply to Janeywoo

Hmmm did you have the back ache prior. Is it upper back back near the bra line more towards the sides/underarm?

Janeywoo profile image
Janeywoo in reply to Maduza

Hi thereNo, lower back….

Tell your nurses or specialist about your concerns and I’m sure they will look into it for you.. x

Maduza profile image
Maduza in reply to Janeywoo

Yes I have thanks

I'm fairly new to this drug, my third infusion is next week.I don't seem to have had any side effects, so far.

As to whether it's working? will need to wait for the results.

Hope you manage to get on to this sooner than later

Maduza profile image
Maduza in reply to Biggie_McDick

Mine took a good 20 weeks to work fully but it's a slow working drug i was told at least 14 weeks so bate with it. Good luck

Biggie_McDick profile image
Biggie_McDick in reply to Maduza

I'm not quitting yet :DI'll give it a good try and let the experts decide if it's been worth it..

Hi I started vedolizumab Monday very worried and scared about this treatment as I also have psc

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