Starting Stelara

[Grant]

I've been on Inflectra for nearly 3 yrs, I went from 8 weekly to 6 weekly to 4 weekly. Unfortunately after a Sigmoidoscopy. Ultrasound & MRI my specialist has decided to stop the Inflectra & start Stelara on Thursday. Then a top up injection in about 6 weeks then 12 weekly injections.

Apparently they saw the results of the MRI & didn't like what they saw, a fistula in my rectum & quite significant thickening in my gut lining @ the anastomosis. I certainly have had a lot of problems down below, sometimes difficulty going to the toilet & have to strain-a lot!

So along the Crohns path I go-will it ever end. 35 yrs now.

Best Wishes

Grant
__________________
1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
2012 Laproscopic Laperotomy & Resection
2013 diagnosed with a Fistula
Been on Azathioprine Pred & Methotrexate
Currently on:
Stelara
Questran
Loperamide
Calcichew
Pentasa 4gm daily
Daily Multi Vitamins
3mthly B12 Jabs

 

[my little penguin]

Please check
Standard Crohns dosing for Stelara is VERY DIFFERENT FROM psoriasis dosing
Crohns dosing is 90 mg EVERY 8 weeks
Up to 90 mg every 4 weeks

Vs psoriasis dosing which is 45 mg every 12 weeks

Please make sure they are following standard for Crohns
Which includes a large infusion as loading dose then injections

STELARA ® is the only treatment for Crohn's disease that starts with a weight-based, one-time intravenous (IV) infusion induction dose (260 mg [55 kg or less], 390 mg [more than 55 kg to 85 kg], or 520 mg [more than 85 kg]) to help reduce symptoms, followed by 90 mg subcutaneous maintenance injections every 8 weeks

From
https://www.jnj.com/media-center/pr...-moderately-to-severely-active-crohns-disease

 

[my little penguin]

FWIW Ds has been on Stelara since aug 2017
90 mg every 8 weeks
Switched in March to 90 mg every 4 weeks

Takes every bit of 6-8 months to work

 

[Grant]

Hi my little penguin, yes its the Crohns dose. I suspect I wont make it to 12 weekly. My Crohns is in the words of my Specialist Nurse, complicated & aggressive. I worry about the 12 week gap, but then I was down to 4 weekly infusions of Inflectra & that seemingly hasn't stopped the current situation. So no choice as things stand, got to go with it & hope its as good as it sounds.
Rgds
Grant

 

[eleanor_rigby]

My goodness Grant reading your signature you have certainly been operated on a few times over the last 30 years! I always find it really interesting to hear from people who have had the disease that length of time as sometimes I get worried about dying young. My partner is a social worker and supports a lady in her 90s with Crohn’s. Can I ask - totally off topic but we’re any of your surgery’s open? Or all laparoscopy? I’ve had one surgery which was open and I wonder if I’ll always have to have open surgery in the future now if I ever need any more.

Good luck with the Stelara... I’ve never been on any biological but if I were to go on one that’s the one I would want from reading the published literature.

 

[Grant]

Hi eleanor_rigby (great name & song-love the beatles), tks for your response. My 1st two surgeries were open. Obviously for the laproscopic ones I still had to be cut about somewhat to get the bad bit of intestine out. The last 2 in 2010 & 2012 were laproscopic. I think as I've got older I've found it harder to recover after surgery. Nearly 60 now & the old body doesn't like too much trauma.
My goodness a 90 year old lady with Crohns, that's really something. Tbh I've often thought I'd be lucky to get to 75ish, my thinking being that if the Crohns doesn't get me then a infection will. But maybe not if that lady is anything to go by. Here's hoping & tks for taking an interest & the time to reply.

Many tks
Grant

 

[eleanor_rigby]

Hey Grant!
Thanks I know, love that song . Thanks for the info and really interesting. So pleased you have been able to have laparoscopic surgeries. Open really isn’t great. I was in hospital for a week and really struggled during that week with pain, I was worried a cough or small movement could rip the whole wound open. That probably slowed my recovery as I refused to wal for like 4 days LOL. I was only 22 and not immunosuppressive at the time. I worry about future surgeries now I’m on azathioprine and potential infections as well. I have been under some stress at the moment and it’s triggered some health anxiety I think! I definitely think surgery in older age is a lot harder to recover from, especially if you are immunesuppressed it takes longer to heal. For me small cuts take longer to heal.
Yeah he said the lady in her 90s crohns was well managed I just cannot see myself getting there without some miracle medication. I really don’t want these type of drugs for more than 10 years wish we could just take the 5-asa drugs. My dad has UC and just taken Asacol continuously for 30 years and that’s it! He didn’t even know UC was classed as IBD until I got crohns.
Sorry for rambling!!

 

[Grant]

No, never thought you were rambling eleanour_rigby. Its great to talk to people with the same problems. I know what you mean about the feeling when you've had your belly cut open, going over a bump in the car, sneezing, coughing. Feels like your guts could spill out(sorry that sounds awful but its the sum of it). I remember once my wife collected me from hospital & brought a hospital wheelchair up to the ward for me to take me to the car park. Unfortunately outside the hospital there was a rough bit of paving & I got out the wheelchair & walked!!
In 2012 I was immunosuppressive but came through it ok. Its always a worry though, someone on here way back once said we must be mad to suppress our immune systems. But then again Crohns is such a nasty vicious disease that we'll do anything to try & stop it.

Rgds
Grant

 

[eleanor_rigby]

Haha yes that’s exactly it! Such a horrible feeling. Really don’t want to ever need surgery again and definitely don’t want another perforation. Yes I’ve done the wheelchair journey from the ward to the car park haha!! Must be so horrible for our families.
Yes it does feel mad to poison our bodies with these medications but I had 5 years prediagnosis on no medications and the cramps (most likely obstructions) were so horrendous culminating in a perforation. I can’t go through that again. I’ll do anything not to have those cramps really.
So strange my bowel habits are totally normal, I must not have had diahorrea in years, it’s just pain that I get, cramps and in the last year or so fatigue. Funny how it affects people differently. I actually don’t mind an episode of diahorrea as it makes me feel like my system must be cleaned out so I’m at less risk of the cramps!! Some people do get decades of remission though and I always try and think of them and think about the positive possibilities. I see your story as positive too Grant even though it’s clear you have been through a lot, the fact that you are still going after thirty years is really comforting for me. I worry about dying young to the point I think it would be foolish to have children (I’m 30 in March). I guess though people are stronger than they think.

 

[Grant]

Here's the thing eleanour_rigby, some ladies actually find being pregnant mysteriously clears out all symptoms of Crohns. My daughter has Crohns but since the very start of her 1st pregnancy 4 yrs ago she's been symptom free. I've heard this before as well, chap who lives around the corner from, his niece had exactly the same experience.
Thankfully I've never suffered a perforation, but I've had obstructions & oh god the pain. I honestly thought I was going to die the 1st time. Very scary & not a experience I ever want to repeat.
Yes I agree, I never want surgery again unless its a last resort tbh. I think that a lot of Dr's in the past were very quick to send people to the surgeons but new techniques & meds are hopefully reducing that. Plus of course as we're all so aware these days of NHS costs, even these expensive meds are more cost effective that surgery & a week in hospital.
Rgds
Grant

 

[my little penguin]

Grant
The Crohns dose is 90 mg every 8 weeks
Not every 12 weeks
So even if your getting 90 mg
Every 12 weeks IS NOT the standard Crohns dose
Don’t understand why they aren’t following the standard protocol

Are they giving you high dose iv infusion for loading dose at least ?
I think Ds got 360 mg in one iv ?

 

[Grant]

my little penguin I'll let you know what the dose is later. I've got my loading dose in 6 hrs time.
Rgds
Grant

 

[Grant]

Grant
The Crohns dose is 90 mg every 8 weeks
Not every 12 weeks
So even if your getting 90 mg
Every 12 weeks IS NOT the standard Crohns dose
Don’t understand why they aren’t following the standard protocol

Are they giving you high dose iv infusion for loading dose at least ?
I think Ds got 360 mg in one iv ?

Hi again my little penguin. I have the info sheet I was given here from Crohns Colitis UK.

1st dose is 6mg per kg I weigh, all following doses are 90mg regardless of weight. Then 1st injection of 90mg after 8 weeks, injections after that between 8-12 weekly depending on how the I'm doing.
Rgds
Grant

 

[my little penguin]

Are they placing you in a “bridge “ therapy until Stelara kicks in
Ds needed steriods for 5-6 months
6 months is typically amount of time to see effectiveness
Some need up to 8-12 months
Stelara is very slow acting

 

[Grant]

No bridge treatment planned as yet my little pony.
Rgds
Grant