Stelara question

Hi folks. I'm posting here, as the Crohn's board is comatose to be honest.
I started Stelara last July. The first dose was an infusion given in hospital and was double the maintanence dose. And for reasons too long and tedious to go into, that's still the only dose I have had. However, it did nothing for my symptoms - I mean, literally nothing. There wasn't even a slight improvement that I could make out.

Last December I saw a GI - not my usual one, but she was very good. We agreed that I would give Stelara another try, but I still haven't gotten around to phoning up the delivery company. I dunno why I've been dragging my feet over this for months. I suppose I was so disappointed with the initial infusion that I just completely lost motivation to carry on with it.

My only other option is surgery and a permanent ileostomy. To be honest, a very very very large part of me is wishing I had never got the first stoma reversed. All those who say chronic pouchitis isn't nearly as bad as UC must not have what I have got because this is certainly as bad as it was pre-surgery. The only difference is I don't get the fevers of death anymore, but otherwise my life revolves around toilets still.

So, does anyone know if Stelara can still work if the initial loading dose didn't do anything?

PS: I've just remembered. A possible complicating factor is that the delivery company screwed up the delivery of the Stelara. I mean, really screwed it up. I suspect it was unrefrigerated for a few hours before they even got it to me - and I only just managed to get the infusion completed before the 8-hour window was up. I did wonder at the time if the Stelara had degraded due to the crappy handling of it. But I couldn't see anyone admitting to this, so I bit my tongue and hoped it would be all right. Not the best idea in retrospect.

Post Edited (NiceCupOfTea) : 1/5/2020 2:26:58 PM (GMT-7)

I don't think I could get the loading dose again.

My point was I had no improvement - a partial improvement would have encouraged me to keep on going. I'm so utterly sick and tired of gash diseases and medications which don't work.

Would you take your dose at home? Maybe you could save your first dose in your fridge and wait for the 2nd one to arrive 7-8 weeks later. Do your own loading dose at home (two shots at once).

I wouldn’t be surprised if the Stelara lost its original strength if the temp got above 50 degrees Fahrenheit. UPS missed one of my deliveries and it arrived 24 hours late. I spoke to the pharmacy and the Stelara hotline, they said it would be okay if it didn’t get too hot. Mine was still cold when I got it.

Stelara didn’t work well for me until I got the correct dosing. I originally started with the psoriasis dosing and it worked for like 48 hours, then my symptoms would return. I needed hip surgery so I had to temporarily stop Stelara. 6 months later I restarted it with the crohns loading dose and 90 mg shots at 8 weeks, it’s been working great for me ever since.

ASellers - I'm not on Facebook anymore. I still have an account, but I have no desire to log in or use the site again. If I'm desperate I will remember that option though.

ks - Wow, I never even thought of doing my own loading dose at home. Good idea!

It was summertime, so if the Stelara was left out for any length of time its temperature would definitely have gone above 50F. I do know it wasn't refrigerated and that the courier had to go back to put it in a fridge. I was meant to get the Stelara at 11am and didn't get it until 5pm in the end.

Glad to hear it's working for you now. Unfortunately I don't think I will get the 90mg shots - it's a funding thing. Would be easier, perhaps, if I lived somewhere else (the NHS can be a postcode lottery when it comes to funding and I had trouble getting the Stelara at all due to where I live).

@Sara - Thanks. The Stelara infusion definitely is different, but I'm not sure about the injectable form. I should try to find that out. In the meantime, I'm going to phone up the delivery company now and try ks's idea of doing my own loading shot. And it's 8C (47F) at the moment, so it doesn't matter if the idiots mess it up again!

Edit: Yes, I thought that might happen. It's been so long the delivery company want to check with my hospital it's still okay to send me Stelara. I need to get in touch with my hospital to arrange an iron infusion anyway, so I may as well mention this to them as well.

Post Edited (NiceCupOfTea) : 1/6/2020 9:24:24 AM (GMT-7)

@iPoop - See my edit >_>

Remicade is always the same dose though - it's just that the loading doses are given closer together. The Stelara loading dose is double the usual dose, however, so I expected to notice something if it was going to work at all. Not remission, but an improvement. Also, I've read that Stelara is one of the faster-acting biologics compared to, say, Entyvio.

Posting this thread has made me realise that I'm not satisfied that first infusion was up to scratch: the contents may very well have degraded. I'm more motivated to give Stelara another try now, but I would like to start with a loading dose again. I'll see if my hospital will agree to it, but I suspect the answer will be no and I'll have to use ks's method.

Edit: What is up with HW? There seems to be a new bug which removes line breaks from posts and jams the paragraphs together. Annoying!

Edit 2: I think it only happens after an edit. Well, let's see what happens after a 2nd edit...

Post Edited (NiceCupOfTea) : 1/6/2020 9:23:36 AM (GMT-7)

>What is up with HW? There seems to be a new bug which removes line breaks from posts and jams the paragraphs together. Annoying!

Yeah, noticed that one too. I know the site owner is making changes to things lately. Maybe collateral damage?

Hey Sara. To answer your question, in case the website didn't answer it, Stelara is both. The first dose is given as an infusion in hospital, but after that it's an injection which you do at home once every 8 weeks.

Thank you... Yeah, it does suck, I'm not noble enough to pretend otherwise I had a stoma for two years and while it wouldn't solve every issue I have now, it would definitely solve some of them. That first surgery was brutal in so many ways though - coming off the pain relief to which I had inadvertently become physically addicted to (oxycodone) and prednisone was absolutely brutal in itself. I am not looking forward to a 3rd surgery, to put it mildly. But if I allow a year for full recovery (physical and mental), hopefully afterwards the improved quality of life would make it worth it.

NiceCupOfTea said...
Hey Sara. To answer your question, in case the website didn't answer it, Stelara is both. The first dose is given as an infusion in hospital, but after that it's an injection which you do at home once every 8 weeks.
Thank you... Yeah, it does suck, I'm not noble enough to pretend otherwise I had a stoma for two years and while it wouldn't solve every issue I have now, it would definitely solve some of them. That first surgery was brutal in so many ways though - coming off the pain relief to which I had inadvertently become physically addicted to (oxycodone) and prednisone was absolutely brutal in itself. I am not looking forward to a 3rd surgery, to put it mildly. But if I allow a year for full recovery (physical and mental), hopefully afterwards the improved quality of life would make it worth it.

I did see that on the website but thank you! I'm sorry you have been through so much. I hope things improve soon. This disease is a lot to handle.

Wow, that sucks about the eye issues. I think I would be pretty devastated if I had surgery and continued to have bad UC-related issues. Thank you. I hope the Stelara works for you!

NiceCupOfTea said...
@ks - Crikey. I hope I get the Crohn's dosing and not the psoriasis one. It should be the Crohn's one, but I'm not sure what dose I've been approved for. At any rate I've sent an email to my IBD team now.

Ours (IBD) is a higher dose (90 mgs vs 45 mgs) and more frequent (56 days vs 90 days). Plus the loading dose IV. This dosing wasn’t available when I started so I had to settle for the psoriasis dosing (which I do not have).

I had the antibodies test done and did not have any antibodies after restarting Stelara. My levels were good too.

Stelara is approved for both UC and Crohn's now.

NiceCupOfTea said...
Hi folks. Not much of an update, but here it is anyway.
I got a reply to my message. I had asked if I could have the loading dose again; she didn't answer, but simply asked me when my last injection was. So I told her. She also agreed that I was anaemic and said she'd contact the day centre to arrange for me to have an iron infusion, but I haven't heard from them either.
I'll give it until Monday/Tuesday, then chase it up again.

NCOT,

Be proactive if you do not get a response. You have to be an advocate for yourself. I'd imagine if you got approved for Stelara the first time then you can get approved for it again. Maybe get your stelara levels checked, that might prove that you need another loading dose if there has been a lapse in your Stelara dosing.

Congrats, glad you got some resolution. Keep us posted how it goes! Hoping you have some well-deserved success from Stelara.