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UPDATE as of 4/9/24 Spoke to the pharmacy team at my hospital today and have agreed that I will stay on Stelara at least until March 2025. Due to previous bad experiences with biosimilar and also the upcoming review of the intervals between Stelara injections, it was felt that best to stay on...

Hello Like you I have been stable on Stelara since 2017. Prior to that I was on Humira (relatively stable) and was switched then to a biosimilar which then caused me to develop antibodies and I had to stop. For a year (until Stelara was approved) I was on budesonide to try and keep me stable...

I have just been told by my hospital that with immediate effect my Stelara is being replaced with a biosimilar called Pyzchiva. This is obviously being done for financial reasons. Does anyone have any experience of using Pyzchiva?

Hi MLP When I saw my consultant last week and we talked about my flare, he seemed to be saying that if I take steroids for this flare there is no point in continuing with the Stelara. It’s a new drug here in the UK and they haven’t worked out the various dosing options yet. As I do not seem to...

You have been through the mill... but you are coping and that is very positive. I asked my consultant last week if stress causes flares. His view is that it doesn’t cause flares but can aggravate the symptoms if you are flaring. Do you have any techniques for relaxing or calming yourself down...

My journey so far with Stelara... Had proper flu & pleurisy just before Xmas. 3 weeks before getting flu had large loading dose of Ustekinumab. At about 6 weeks after infusion daily bowel movements had gone down although lots of nausea and bloating. Had first 8 week injection of Ustekinumab...

Had proper flu & pleurisy just before Xmas. 3 weeks before getting flu had loading dose of Ustekinumab. Had first 8 week injection of Ustekinumab. Two weeks after first jab starting to flare and FCP test went from 93 at 8 weeks to 300 at 12 weeks. Consultant decided to give an additional...

Hello mlp My IBD team are fully aware of what’s been going on and have said that they will make a decision as to what they recommend once I feel ready to have the injection. I am mostly recovered just a little cough every now and then but I had the initial infusion after a heavy cold 7 weeks...

Hi Willpwuk Just read your story and I am sorry to hear what you have been going through - hopefully you are on the right track now. Couple of things - your relationship with your IBD nurse is probably the most important one for you going forward. It sounds like this is already developing...

Hi everyone - some advice please I am due my first injection this week (8 weeks after my infusion). Just wondering if it is OK to postpone it for a week or two as I am getting over the flu and still don’t feel 100%. I know going forward once you are on a maintenance dose that you should not...

Hello mlp Thanks for your reply. The Budesonide I was on was my third course of reducing treatment in a year (prior to starting Stelara) that was tapering off anyway. I was waiting for a new med as everything else I have tried was either ineffective or caused a bad reaction. No IV pre meds...

Hello Had my infusion about 2 and a half weeks ago and it was 520mg (as I am a big girl!). I also had been tapering off Budesonide just before the infusion and this was my third course of steroids in a year! Felt OK first week. Second week to now loads of joint/muscle pain all over my body...

Hiya Ozboz Not much to say that hasn't already been said above other than hang in there. It is hard living with this disease but as Valleyangel said every day is an achievement. I have struggled with this disease for the last 4 years and it took a lot of soul searching and support from my...

Hello I was taken off Humira 6 weeks ago (having been on it for 2 years) as my new consultant thought it wasn't doing anything. He put me on a reducing dose of Budesonide for 3 months before I start a clinical trial. My question is to anyone that has stopped Humira - did you have any...

Hello to all Wishing you all happy holidays and a healthy 2017!

Hi I have just come off Humira (after 2 years on it) and now am on a 3 month reducing dose of Budesonide before I start a clinical trial. My question is I think I need some medical help with the anxiety and my GP is talking about prescribing an SSRI. Are any of you (or in the past) on...

Hi Andy Sorry to hear you have to do the prep again but as Cat says hopefully by doing a full scope, they can find out what is causing all your symptoms. I've had a few scopes in the UK and I think the level of sedation is down to individual consultants. Like everything else with the NHS, you...

Hi Ron Have you noticed any effects of being off the Humira? My new consultant has taken me off it permanently as of last Friday as he thinks it is doing nothing nowadays for my Crohns and may be causing Lupus. I hope that being back on Humira is good for you.

Hello Do I need to de-stress? I am getting back into Lego and have started to build the Disney Castle (an early Xmas present). I agree with both of you. It is so important to take time out each day and to look after our mental health. Now the stress of moving home is starting to diminish, I...

Hi Rollin Thanks for the info. The Prof. did mention that the antibiotics are targeting individual white cells in your bowels that they believe have been infiltrated by ecoli which has got into the mucosal lining of the white cells. (WOW - I must have been listening!) Anyway I am back to see...