Adilmumab taking it own sweet time

[Tomeeornottomee]

Hi, hope someone can help. DH has had IBD for 18 years and for the last 3 it’s been one flare up after another. He has been on adilmumab once a fortnight since November and is still on mercaptopurine and Octasa. At the 12 week mark there was very little improvement and blood test showed very little meds in his system at the 12 day mark so his consultant increased adilmumab to weekly. That was almost 2 months ago and there’s still very little improvement, certainly no quality of life as he can’t get through a meal, make any sudden movements or get through the night without needing to go to the loo. Does anyone know how long it should take to see an improvement after increasing the dosage? I’m at my wits end as he is becoming more and more withdrawn and depressed. He has a phone consultation at the beginning of next month and I’m wondering do we wait to speak to them or call and let them know it’s still not working?

sorry for the length of my post. Thanks for reading x

*previously posted this on someone else’s thread- apologies

Hi OP,
Really sorry to hear about your husband's condition. His predicament is exactly the same as mine - Adalimumab moved to weekly but still not working. I've found you have to be really persistent (even if it feels uncomfortable to keep pestering) and just keep letting them know, else he'll not be prioritized. Definitely let them know as soon as possible that it's not working so they can get him set up on the next treatment as it can take a while to get the paperwork and approvals. Does he have an IBD nurse he can call? Else call his consultants secretary and leave a message. It sounds like he could do with being on steroids until he finds a medication that works. His GP might be able to help with this, else he can ask his nurse. I'm on a repeat prescription, which isn't great, but I wouldn't be able to work or function without pred. Is he on Facebook? There's a Crohns & Colitis support page which is really active so I would recommend he joins there is he isn't already. Best of luck to him, it's a miserable illness :(

I am on this weekly and while I did get some response to this in that my inflammation markers did come down, I did need surgery to get me back on track. I had a resection a few months agoand am now waiting to drop back to bi-weekly as my markers are showing remission. He needs to get his bloods checked to see the trough numbers, that shows whether the body is responding to adalimubab or not, if it is working then he needs something else alongside it, if not he needs another drug or surgery.
this time last year I was crippled with symptoms, today I ran 10K before work, there is help there but you need to be forceful to get it

His team probably have a protocol as to when to increase/ change drug.
DS responded to alalumimab but quite rapidly relapsed rather badly.
His biologic was changed and a year down the line he remains well and on greatly reduced medicines.
Several of the biological work for IBD but it is a question of giving them a decent go before moving on.
If you have an IBD nurse I would keep them informed.

Hello, I'm sorry to hear what your husband is going through. Does he have Crohn's disease or ulcerative colitis? If Crohn's and given how long he has had his illness I am wondering if he has some built up scar tissue. These treatments unfortunately do nothing for scar tissue. When was his most recent colposcopy as it sounds like they could do with getting a look at what is going on inside? He may need a stronger dose, what does is he taking?

Sorry colonoscopy

Hi, thanks for all the replies. He has pancolitis, (UC that goes all the way round) His last colonoscopy was in august last year. Not sure about scar tissue but it did show deep ulceration and inflammation from cecum to sigmoid.
he is now on 40mg imraldi weekly and has been since middle of March with very little improvement. But we’re not sure how long it can take for the increased dosage to take effect.

OK I think scarring is less likely then to be the issue. Sounds more like a flare he is struggling to get under control. Has he been on any steroids since his colonoscopy?
According to humira.com their stats are:

Remission at 4 weeks: 21% (study 1), 36% study 2
Symptom relief at 4 weeks: 58% (study 1), 52% (study 2)
Remission achieved and maintained: 40% (week 26), 36% (week 56)

He was put on pred after his scope in august (40mg tapering after a fortnight) finished them about 3 weeks before biologics started late November. Didn’t actually get it fully under control but the bleeding had stopped. Bleeding came back about a week before Xmas and it’s just deteriorated since.

Hello, fellow UC sufferer here.

Everyone reacts differently and some more quickly than others to medications so it's hard to say how long it will take but in my experience if it hasn't really worked in 12 weeks I doubt it will.

I would just say keep going on at the IBD team. I contact my consultants secretary when throngs get really bad and I'm not getting much response from the IBD nurse.

There are lots of biological to try, infliximab and vedolizumab worked best for me whilst they did. There's also tablets people with UC can take called tofacitinib, think this is a new thing.

Unfortunately I stopped responding to medication and was flaring for 2 years and recently had surgery for a stoma.

I’ve left a message with the IBD nurse to get back to us. DH has always been so stoic about his condition but these last couple of years he has really struggled to get it under control. His IBD team are generally very good, however they’ve been hit hard by covid and at the moment there’s 2 nurses dealing with IBD patients across 3 hospitals in the trust. So they’re stretched very thin and it sometimes takes a couple of days to get back to us. I’ve taken a stool sample up to the path lab so its getting processed and hopefully the results will be in the nurses computer by the time she gets back to us. They’ve never prescribed him anything with knowing what his fecalprotectin levels are so thought I’d jump the gun a bit. I’m guessing he’ll be put back on pred or cortiment. My concern is that once they’re out of his system he’ll start flaring again and we will be 2 months further down the line and have to wait god knows how long to try something else..it took nearly 3 months from it being recommended to him starting them. I know that he had to have bloods and X-rays done so I’m hoping that if they decide to change his meds it will be quicker because all that’s been done. Sorry if this is a bit rambly I’ve not had much sleep. I really appreciate the replies and advice. I’ve got a lot going on in my extended family health wise and I’m feeling a bit alone at the moment. The person who usually listens to my self pitiful waffling has her own issues atm. So, thank you

Don't apologise. If you have Facebook there's a really active and helpful, private group called Chron's and Colitis UK Forum - you'll get more responses for any questions and it's a good place if you're feeling lonely and overwhelmed too.

If they're doing X-rays sound alike they are preparing to move him to a different medicine (fingers crossed)!

I don't respond to steroids and always end up in hospital for IV steroids. I've had surgery now as ran out of medicines to try. It's a tough disease trying all these meds and hoping, it can really mess with your head.

Well done on getting ahead and getting those tests done.

i haven’t explained it very well. He had X-rays before starting the biologics, that’s why it took 3 months to get him started on them. I’m hoping they can use those results if they decide to change his meds. I will have a look at the fb group, I don’t use it much so I hope I can remember my password 😂

I'm on it for something else but it took over a year before I really was able to drop the steroidal assistance.

Hi everyone, sorry for the radio silence. It’s being a hectic weekend without much sleep. Spoke to IBD Nurse on Monday and she has put DH on 40mg pred over 8 weeks. She also said that if he relapses after the pred then it’s time to try another biologic. Pred is starting to work already and it’s only been 2 days. So hopefully it will bridge the gap and when he finishes he will maintain as he is.
thanks for all the advice and info, much appreciated.

Your poor Husband OP. Fingers crossed the pressure helps fit it back under control. I’ve got crohns but also didn’t react well to the Adulimumab (still can’t bloody spell it). Now on vedozulimab and have been for 3+ years and it’s worked really well, no real flares since.

I did have a resection in Jan but that was due to scarring from previous rather than a flare.

Hope they find a regimen that works for him soon.