Stelara not working after 5 months.. lost 25kg

[Karinbe]

Hello,

I would like to get advice from crohn's forum. My story:

April 2020, I have got itchy skin (without rash) and diarrhea(6x/day). After 3weeks I have been hospitalized with respiration problems, severe diarrhea (8x/day). After urgency colonoscopy, they found ulcers in ileum/caecum and rectum (diagnosed with Crohn). MRI showed the same thing.

I have got methyprednisolone 32mg for 1 month. This controlled my disease, but it came back when tappering to 4mg. For this reason we continued this drug for extra 2 months (16mg). I was feeling ok, but still have diarrhea about 3x/day. Switching to entocort did not control my disease.

Begin august, my doctor suggested to start Stelara in combination with Corticosteroids. It's now week 19 (almost 5 months) of Stelara. Steroid is discontinued at WK 15 because of adverse effects on long term.

The problem is that I still struggle alot because Stelara is not working.. I use 4x Loperamide 2mg per day.

• Diarrhea 10x/day
• Blood in Stool (every day)
• Incontinence, I need to run to WC every time. Activities outside house is impossible like work..
• Itchy skin without rash
• Very low weight, still descending (currently 57kg, 8 months ago It was 82kg), Fatigue
• Bloodwork: hemoglobin around 10-11, B12, Iron etc OK.
• Calprotectine marker around 1000 already 8 months.

Because of loss of 25kg in 8 months (eating is OK). Doctors did extra investigation 1 month ago:

• Colonoscopy number 2: inflammation in ileum/colon but no deep ulcers. Spontaneous bleeding in colon.
• Gastroscopy: everything looked fine, instead biopsy showed inflammation in duodenum, but not seen by eyes.
• 72h stool test: no bile acid loss, but steatorrhea (fatty stool) possibly due to malabsorption.
• Breathtest for Lipase/Bile: normal activity

Doctors want me to wait till week 24 (that's almost 1,5 months from now) to see if Stelara kicks in. I'm so exhausted that I can't wait anymore.. I'm urging to switch to anti-TNF like remicade or humira. Is this a good idea? Am I stopping too early with stelara?

Please give me advice, I'm total lost..

 

[my little penguin]

Ds started Stelera shots at 90 mg every 8 weeks in August 2017 (after initial infusion dose ) -age 13
He was on steriods until Dec 2017.
He felt horrid and we were ready to drop Stelara.
Scope in Feb 2018 showed mild inflammation in his TI . Dose was increased to 90 mg every 4 weeks.
Within 2 months of increasing the dose (April 2018)
Ds felt great .
Bloodwork was back to normal .
He still is on Stelara at age 17
He also takes methotrexate since Stelara is used for his crohns and his juvenile arthritis.

if you had told me in Dec 2017
Stelara actually worked .... not sure I would believe it

what dose/frequency are you on ?
Stelara takes an average of 8 months to work .
Have you tried een (exclusive enteral nutrition-formula only )? It’s as effective as steriods for crohns but none of the side effects
Vionex/ensure /peptamen/boost /modulen are formulas that can be used
They use een a lot in kids since there are less side effects
Since Ds also has arthritis een alone doesn’t help when switching meds
He still need steriods as a bridge therapy

hope Stelara works soon

 

[my little penguin]

Did want to add
Stelara does not work as well on the colonic crohns
Entyvio does better there but that takes 12 months on average to kick in
Stelara works better on the small intestine

anti tnf (remicade -takes 6 weeks minimum to start to work and humira takes 3 months minimum)
Both took longer to work for ds
But he did get close to 6 years of therapy between the two drugs (Ds was dx at age 7)

 

[Karinbe]

My frequency is 8 weekly - 90mg. At start, I only had inflammation in ileum/caecum.
The doctor want dose escalation only if I respond, not before..

I have heard of EEN, but never seen this for adults (I'm 27). How does this work? I use Ensure 1x a day to get extra calories. It's for me impossible to live only on this.

 

[CatLover63]

Hello,

I would like to get advice from crohn's forum. My story:

April 2020, I have got itchy skin (without rash) and diarrhea(6x/day). After 3weeks I have been hospitalized with respiration problems, severe diarrhea (8x/day). After urgency colonoscopy, they found ulcers in ileum/caecum and rectum (diagnosed with Crohn). MRI showed the same thing.

I have got methyprednisolone 32mg for 1 month. This controlled my disease, but it came back when tappering to 4mg. For this reason we continued this drug for extra 2 months (16mg). I was feeling ok, but still have diarrhea about 3x/day. Switching to entocort did not control my disease.

Begin august, my doctor suggested to start Stelara in combination with Corticosteroids. It's now week 19 (almost 5 months) of Stelara. Steroid is discontinued at WK 15 because of adverse effects on long term.

The problem is that I still struggle alot because Stelara is not working.. I use 4x Loperamide 2mg per day.

• Diarrhea 10x/day
• Blood in Stool (every day)
• Incontinence, I need to run to WC every time. Activities outside house is impossible like work..
• Itchy skin without rash
• Very low weight, still descending (currently 57kg, 8 months ago It was 82kg), Fatigue
• Bloodwork: hemoglobin around 10-11, B12, Iron etc OK.
• Calprotectine marker around 1000 already 8 months.

Because of loss of 25kg in 8 months (eating is OK). Doctors did extra investigation 1 month ago:

• Colonoscopy number 2: inflammation in ileum/colon but no deep ulcers. Spontaneous bleeding in colon.
• Gastroscopy: everything looked fine, instead biopsy showed inflammation in duodenum, but not seen by eyes.
• 72h stool test: no bile acid loss, but steatorrhea (fatty stool) possibly due to malabsorption.
• Breathtest for Lipase/Bile: normal activity

Doctors want me to wait till week 24 (that's almost 1,5 months from now) to see if Stelara kicks in. I'm so exhausted that I can't wait anymore.. I'm urging to switch to anti-TNF like remicade or humira. Is this a good idea? Am I stopping too early with stelara?

Please give me advice, I'm total lost..

Hello, I'm not medically qualified to give you advice but some of of your symptoms I can relate to. If you have breathing problems, do you have poor air quality where you live or are you exposed to cigarette smoke ? I have had asthma, for sure since 2000 and you may need to get inhalers to stop symptoms. Itchy skin could also be due to a food allergy or a reaction to washing powder or soaps.
Do you keep a food diary ? Chemists sell high calorie powders for people convalescing from illness. Gentle on the stomach and could help you maintain your weight. Caffeine, dairy and chocolate are diarrhoea causing, best to cut them out completely. Take care.

 

[Karinbe]

Today I got 2nd opinion. She suggested therapy switch to Remicade & Imuran because of my symptoms. 5 months waiting time is a lot, she said.

 

[my little penguin]

Een is done in adults
Ds was consuming 2600 calories a day as een at one point
You need to have a Gi advise what your caloric needs are
For Ds that meant 7-9 peptamen jr a day
Later 8 servings (250 calories each ) of neocate jr chocolate-elemental formula

but you need your Gi to advise since it’s medical food

 

[Karinbe]

Update

Monday I’m admitted to hospital. Echo is done for liver and bile, looks fine. Blood is ok, only liver/bile values were high (gamma gt and alk fosfat) & hemoglb 9. Remicade and Imuran (125mg, 55kg) is started yesterday. So far so good, diarrehea is continuing, but frequency is slightly reduced in 12 hours.

@moderators, maybe move this thread to general forum. I will post updates in coming weeks

 

[my little penguin]

Hope remicade kicks in soon
Did they give you iv steroids as well as a bridge till remicade kicks in ?

 

[Karinbe]

No, they are expecting that remicade will kick-in in couple of days.

 

[my little penguin]

Remicade on average takes 6 weeks to be effective
In some cases it takes longer depending on how much inflammation is there
Only steriods take days...
1st Loading dose is week 0(you already had that dose .
2nd loading dose is two weeks after that
3rd loading dose is 4 weeks after that (6 weeks from 1st dose )
Then you go to maintenance every 4-8 weeks at 5 to 10 mg/kg
Standard dose is every 8 weeks at 5 mg /kg

 

[Karinbe]

Remicade on average takes 6 weeks to be effective
In some cases it takes longer depending on how much inflammation is there
Only steriods take days...
1st Loading dose is week 0(you already had that dose .
2nd loading dose is two weeks after that
3rd loading dose is 4 weeks after that (6 weeks from 1st dose )
Then you go to maintenance every 4-8 weeks at 5 to 10 mg/kg
Standard dose is every 8 weeks at 5 mg /kg

They started it today, but not for gap of remicade. I have had low hb - hemolyse. 60mg iv, 3 months taper. Diarrhea is instant disapeared, solid bowel movement 2x day (coming from 15x)

they will monitored me 2 days, after that I’m going home.

 

[my little penguin]

Glad the steriods are working
That will give remicade time to kick in

 

[Jo-mom]

My son felt Remicade working the same day of his infusion. Things changed for the better for him right away. This isn't typically normal,but he went to his infusion without an appetite for a very long time, and struggling with mobility, and he walked out of his infusion wanting to eat and his mobility was better. It was like a miracle in some way. It did take awhile before his inflammation was under control however,but he started feeling immediately better after his first infusion.

 

[Karinbe]

My son felt Remicade working the same day of his infusion. Things changed for the better for him right away. This isn't typically normal,but he went to his infusion without an appetite for a very long time, and struggling with mobility, and he walked out of his infusion wanting to eat and his mobility was better. It was like a miracle in some way. It did take awhile before his inflammation was under control however,but he started feeling immediately better after his first infusion.

Same, without prednisolon, first day of remicade Diarrhea was reduced, but not disappeared. After adding prednisolon, it went from 15x to 1x instantly.