Hi...I am waiting for the Stelara to "kick in" as the GI says. I was on prednisone for 2 1/2 mos. and am still bleeding and running to the b-room 1-4x/day. She says the Stelara hasn't kicked in yet. I took the original infusion 7 weeks ago and am doing a self injection this week. Is the Stelara supposed to take care of the bleeding? I don't want to stay on steroids anymore as I already have bad bone density.
Will Stelara take care of bleeding?
- Thread starter AgentM
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Hello, what you are going through sounds awful. Hopefully, you have a nutritionist and are on a specialised Crohn's diet excluding all foods that might cause inflammation.
I find plain white rice, plain yoghurts and camomile tea with honey helpful. No fried, spicy or oily foods.
No...right now they said to just avoid fiber. Thanks for the advice o
No, right now they are just having me avoid fiber. Thanks for the advice on the things you find helpful to eat!
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Ds started Stelara in aug 2017
Stelara takes time to work
Many months to kick in
It took 8 months and then a dose frequency increase for ds
He takes Stelara every 4 weeks now at 90 mg
He did try every 8 weeks but that was not enough
He also takes methotrexate
gi meds all take time
Remicade takes 6-8 weeks
Humira takes 3-5 months
Methotrexate takes 12 weeks
Stelara average 6-8 months
Entyvio averages 6-12 months
so time
Een exclusive enteral nutrition;formula only has been used in kids while waiting for the drugs to kick
Some use it in addition to steriods
Now Stelara works great for ds
But it did take time
Stelara takes time to work
Many months to kick in
It took 8 months and then a dose frequency increase for ds
He takes Stelara every 4 weeks now at 90 mg
He did try every 8 weeks but that was not enough
He also takes methotrexate
gi meds all take time
Remicade takes 6-8 weeks
Humira takes 3-5 months
Methotrexate takes 12 weeks
Stelara average 6-8 months
Entyvio averages 6-12 months
so time
Een exclusive enteral nutrition;formula only has been used in kids while waiting for the drugs to kick
Some use it in addition to steriods
Now Stelara works great for ds
But it did take time
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@CatLover63 do you have crohns or Ulcerative colitis ?
That can make a difference on what amount diet helps
And type of diet
That can make a difference on what amount diet helps
And type of diet
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Do they have you on a rectal steriod foam ?
Uceris rectal foam really can help treat rectal /proctitus while you wait for the stelara to kick in .
It’s topical -check with your Gi (not sure if you can use it while on oral steroids )
Ds used it for proctitus while on Stelara and it made a big difference.
taggkng @crohnsinct
Uceris rectal foam really can help treat rectal /proctitus while you wait for the stelara to kick in .
It’s topical -check with your Gi (not sure if you can use it while on oral steroids )
Ds used it for proctitus while on Stelara and it made a big difference.
taggkng @crohnsinct
Did you try protofoam once or twice /day? You can ask your Dr for twice a day.
You started at what dose of prednisone 2 months ago?
crohnsinct
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Hey there. You sound like my daughter O. She has been in an awful flare for 5 years now and she is a bleeder. When healing the rectum is the last bit to heal and wouldn't you know it is the biggest bleeder also. So unfair!
7 weeks is really too early to be tapered completely off Stelara, especially if you have majority colonic disease. It is not as good at handling colonic disease and does take a really long time for onset of action.
Curious, have you previously failed another biologic? If you are biologic naive, you have a better shot at success with Stelara.
Let's see what worked for my daughter....she was on prednisone a lot but when they absolutely had to try to get away from steroids because she was developing diabetes they tried tacrolimus as bridge therapy. Tacro didn't work for her and she moved to budesonide (Uceris) but even that didn't work great for her until we added rectal suppositories and later when suppositories weren't covered by insurance proctofoam.
Uceris (Budesonide) isn't as terrible for you as prednisone because it is has a high first pass through the liver so very little is absorbed systemically. But it does need help and I think that is where the foam cones in. My daughter did it twice a day for a few weeks straight and then when bleeding completely stopped for about three days the GI let he go down to once a day and if bleeding stayed away twice every other day, then once every other day until she got down to once a week.
Another thing they had my daughter try was an antibiotic cocktail. Different combos work for different people. The one that has made the most different for my daughter is Flagyl, doxy and amoxycillin. She took it every day for a few months and then when numbers and bleeding improved she backed down to two weeks on two weeks off. She was literally heading for a colectomy before we added the antibiotics and she got her first calpro of 100 on them! Then got a 56! She stopped antibiotics and budesonide (she has been on it for 15 months) for a week (college kid) and she flared right back up but the jury is out on whether it was that or the fact they tried to reduce her Entyvio.
She is also on SCD diet and FWIW, we find diet therapies work much better with small bowel disease (my younger daughter has small bowel disease) than colonic disease but we still use it to try to add to the synergistic effect.
Are you also making sure your vit D levels are good? My daughter's GI has her supplementing with turmeric as well for it's anti inflammatory benefits.
7 weeks is really too early to be tapered completely off Stelara, especially if you have majority colonic disease. It is not as good at handling colonic disease and does take a really long time for onset of action.
Curious, have you previously failed another biologic? If you are biologic naive, you have a better shot at success with Stelara.
Let's see what worked for my daughter....she was on prednisone a lot but when they absolutely had to try to get away from steroids because she was developing diabetes they tried tacrolimus as bridge therapy. Tacro didn't work for her and she moved to budesonide (Uceris) but even that didn't work great for her until we added rectal suppositories and later when suppositories weren't covered by insurance proctofoam.
Uceris (Budesonide) isn't as terrible for you as prednisone because it is has a high first pass through the liver so very little is absorbed systemically. But it does need help and I think that is where the foam cones in. My daughter did it twice a day for a few weeks straight and then when bleeding completely stopped for about three days the GI let he go down to once a day and if bleeding stayed away twice every other day, then once every other day until she got down to once a week.
Another thing they had my daughter try was an antibiotic cocktail. Different combos work for different people. The one that has made the most different for my daughter is Flagyl, doxy and amoxycillin. She took it every day for a few months and then when numbers and bleeding improved she backed down to two weeks on two weeks off. She was literally heading for a colectomy before we added the antibiotics and she got her first calpro of 100 on them! Then got a 56! She stopped antibiotics and budesonide (she has been on it for 15 months) for a week (college kid) and she flared right back up but the jury is out on whether it was that or the fact they tried to reduce her Entyvio.
She is also on SCD diet and FWIW, we find diet therapies work much better with small bowel disease (my younger daughter has small bowel disease) than colonic disease but we still use it to try to add to the synergistic effect.
Are you also making sure your vit D levels are good? My daughter's GI has her supplementing with turmeric as well for it's anti inflammatory benefits.
crohnsinct
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Oh I just remembered, another thing her GI says is that as you heal and the top ulcerated layer sloughs off, it looks like you are bleeding but it isn't actually active bleeding. Take that as you will. I never really bought that position and was sure my daughter was actively bleeding but I will say a few times it seemed he was right. Just something to consider although in your case it sounds more like disease activity.
This is my first biologic. Wow, sounds like your daughter has been through a ton! I'm glad things are looking better for her. My calprotectin last time was over 2000 and I went back on steroids for a week, then to budesonide and proctofoam. I am trying not to take the budesonide but am still doing 6 mg a day and I do have bleeding. Spoke with the GI today who said to go back on the 9. I'm not sure why I have to take steroids if the Stelara is going to kick in at some point. Yes, I think it is disease activity. How sick was your daughter? I've been an absolute wreck. I would get up in the morning and feel like I never slept!
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So the maintenance med (Stelara, remicade ,humira etc..) are to keep the inflammation from coming back . They are long term
The steriod is the big drug that knocks down the inflammation so the Stelara etc can maintain that low level (or no inflammation)
When you don’t take the steriod the inflammation is allowed to grow and then the maintenance has a harder time working and sometimes can’t maintain if the inflammation is too high
please talk to your Gi as to why steriods are important in your treatment
The steriod is the big drug that knocks down the inflammation so the Stelara etc can maintain that low level (or no inflammation)
When you don’t take the steriod the inflammation is allowed to grow and then the maintenance has a harder time working and sometimes can’t maintain if the inflammation is too high
please talk to your Gi as to why steriods are important in your treatment
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It’s a tough balance on steriods vs side effects
Understand buesonide is not as systemic as oral pred (so less is absorbed whole body -mostly intestines ) and it thought to have less side effects
Due to this .
Ds gets bone density scans , does weight bearing exercise (not all exercise is considered equal ) , plenty of extra vitamin D , green leafy veggies, etc...
Getting into remission faster typically means not repeating the inflammation cycle
Inflammation basically gobbles up vitamin D in the body (which is why those with arthritis,asthma etc have low vitamin D levels )
Getting inflammation down means higher vitamin D levels which is better for your bones
Ds takes vitamin D daily abd gets levels checked regularly
Understand buesonide is not as systemic as oral pred (so less is absorbed whole body -mostly intestines ) and it thought to have less side effects
Due to this .
Ds gets bone density scans , does weight bearing exercise (not all exercise is considered equal ) , plenty of extra vitamin D , green leafy veggies, etc...
Getting into remission faster typically means not repeating the inflammation cycle
Inflammation basically gobbles up vitamin D in the body (which is why those with arthritis,asthma etc have low vitamin D levels )
Getting inflammation down means higher vitamin D levels which is better for your bones
Ds takes vitamin D daily abd gets levels checked regularly
