Treatment still not working

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

C

Crappy Dad

Joined
Nov 20, 2020
Messages
46
We are now on our third medication. Rejected Remicade and Humira and we are now trying Stelera. Just got trough levels back and it was around 2.5. He just had his colonoscopy and MRE done and the damage to his Ileum went from 5 cm last year to 15 to 20 cm now. He is having no symptoms and we thought he was getting better until these tests. Dr. wants to change Stelera to every 4 weeks(currently every 8 weeks) and add Methotrexate once a week. Son is very discouraged and does not want to take the Methotrexate. Instead wants to try treat with diet and maybe more holistic approach. Has anyone been through similar situation? Thanks
 
It sounds like he has severe disease
Has he had a second opinion ?
Diet alone typically isn’t enough for severe disease
Een (exclusive enteral nutrition formula only )
Is the only proven diet
But that means no solid food
Even that is hot or miss
Stelara takes a long time to work
Some kids need a full court press
Meaning
Stelara plus methotrexate plus steriods and een
Then once under control slowly reduce things
Steriods typically first
Then off een
Then try to lower methotrexate
But inflammation has to be controlled first

My kiddo has been on Stelara every 4 weeks plus methotrexate for 5 years now
 
If the biologics aren't working, your only real non-drug options are EEN and surgery. EEN is great for getting inflammation down fast, and I think it's a good first step for anyone trying to reduce inflammation while they figure things out. Surgery is sometimes a better option than trying medicine after medicine, especially if the inflammation is in one very stubborn spot, but it's always a tough decision.
 
Thanks for the info! I know this is a question for the doctor, but I trust people that have been through this so I’m thinking out loud: If you do the surgery, how do you control the inflammation and damage from coming back if we can’t find a med to work? Any idea on how long they have to stay on EEN?
 
Een is typically 6-8 weeks to reduce inflammation. It does not reduce scar tissue though .
Once you reintroduce food inflammation comes back if the maintenance med isn’t able to handle it

so sometimes you need een for much longer (many months )plus meds
Surgery removes the damaged area
So the disease burden is less
This makes the amount of work the maintenance meds need to do less -which means once the disease burden is reduced (either by een /steriods or surgery ) then the chances of meds working increase

tagging @crohnsinct
 
Do you know an adult who is/ were in EEN? I Would do it if that really help me. Doctors never told me about it, but to be honest I think I need an extra to help the drug do its work.
 
It can be done with polymer formula
In adults that is boost ,ensure etc -needs to be complete nutrition formula
Gi or nutritionist can tell you how many bottle to drink
Some use semi elemental (peptamen)
Or elemental (vionex )
But the
Best tasting is polymeric formula since it’s whole protein chains

more than a few adults have used it
https://bmjopengastro.bmj.com/content/8/1/e000745
 
Well, Crappy Dad, I have a story for you.

Very condensed version:

Son had perianal abscess and inflammation/thickening at the terminal ileum. Tried Remicade and EEN, inflammation got better. While still on Remicade, ate more food. Inflammation exploded. Back to EEN. Inflammation goes back down due to EEN, including, most notably, inflammation at locations other than the terminal ileum. Over the next year, try dose increases on Remicade while remaining on EEN due to extreme sensitivity to foods that had developed at that time. Eventually get off Remicade, try EEN alone for a little while, then try Entyvio with EEN. Nothing gets rid of all of the inflammation, so he has a surgery. After surgery, inflammation is way down but not quite zero. Test food again. Food results in more inflammation. So we started Stelara, and since then inflammation has been totally gone, there's no thickened area, and he can eat normally.

Could Stelara have worked before the surgery? I don't really know, but I suspect that the surgery may have been a necessary step here. EEN was also necessary during all that time that we hadn't yet gotten things fully under control.

Semi-elemental formula worked better for us than polymeric, and I wish we'd known that earlier. Taste is only a little worse.
 
Last edited:
By the way, I would suggest at least 8 weeks of EEN (maybe more) after surgery to help the intestines heal, and I don't know why they don't suggest that to patients. Good post-surgery healing is critical.
 
Thank you for all the info!! Hopefully we can get to talk to the doctor tomorrow. Just received a letter from insurance company denying his Stelera increase to every 4 weeks!😩
 
Denial for four week Stelara is automatic computer thing
Gi will need to appeal
That takes a week or so
Then if that fails
Second appeal which is peer to peer (Gi gets to “talk” to insurance doc )
 
Still waiting to talk to Doc about results, but picked up methotrexate today. He is supposed to take 25 mg once a week. Is this a normal dose? Also, should they take folic acid with this?
 
25 mg is the max dose the give
But pretty standard
Is it by injection or oral pills ?
My kiddo has been on as low as 7.5 mg but up to as high as 25mg .
He doesn’t tolerate injections of mtx -side effects are too bad for him and last for 6 days
He only can tolerate 20 mg of oral pills of methotrexate once a week .
He still gets nausea /fatigue etc .. with it

folic acid can be taken daily
Ds takes 2 mg of folate (version of folic acid ) -1 mg x2 a day )
Most kids /adults take 1 mg of folic acid once a day .

good luck 🍀
 
Thanks for the info! It’s pills, 2.5mg each. So he is supposed to take 10 once a week. Starting college next week and doesn’t want to take them.( he is really frustrated, since no meds have worked). We are going to ask about the folic acid when we get in touch with doc. Hope your son continues to do well!!! Thanks again for all the info!
 
Typically 24 hours after the dose is when you feel crappy
Side effects normally don’t happen on the first dose taken but either dose 2 or 3
So if he has classes early on Monday then Sunday dose day may not be best
 
This is good to know!! He has a full load on Mondays and Wednesdays. The other days is just a few classes. How long do the symptoms last with the oral meds?
 
Varies by person for length of side effects
Most do better on shots than pills

Ds feels crappy about 24 hours after taking it and for about a day
When he was on shots which most tolerate better than pills - he felt horrific for 6 days
So …
Dh also takes mtx his last two days
 
Got second denial from insurance company on Stelera (every 4 weeks) today. Really don’t understand how they can say it’s not medically necessary!!😡
 
Btdt many many times
Peer to peer review is next
Sometimes just more data
More data starts the process over as a new request
It took eight months to get Stelara approved at 4 weeks the first time it was denied
Then three years later another 6 months to be re approved
Very frustrating
 
Wow! What do they expect you to do for treatment all that time if every 8 weeks isn’t working? The damage could keep getting worse
 
First time we added a lot of things
Methotrexate changed dose
Ivig infusions
Steriods
Etc…
Then after 8 months it was approved from 8 weeks to 4 weeks

second time Gi had to prove Ds got sick at every 6 weeks
 
How's your son doing now? How is he tolerating the Methotrexate? I just wanted to say that most doctors give MTX as an injection when the dose is 25 mg (that's the max dose used for Crohn's and autoimmune arthritis typically). It is absorbed better and most kids have fewer side effects with the injection (though some do prefer the pills - it's very individual).

Both my daughters are on MTX with biologics - one is on 20 mg and the other is on 15 mg. In college, both took it on a Friday or Saturday so they had a day or two to recover. Folic acid every day helps prevent side effects and if your son does get nauseous, then taking Zofran can help a lot.
They both inject it - it's a tiny needle and the shot is pretty painless. Both do it before bed so that they can sleep through the side effects. One of my daughters takes Zofran 30 minutes before the shot to prevent nausea and the other doesn't need that. They both can take Zofran the next day if they are nauseous but typically don't need it.

My younger daughter was on Humira every two weeks without much benefit and then we moved to weekly Humira and that helped, but not enough. Then we added MTX and it took 8 weeks or so to kick, but that plus weekly Humira turned out to be her magic combination!! She went from being completely miserable due to symptoms to being a normal teen!! It really can help with biologics. I know your son is discouraged which is why I wanted to tell him her story.

My younger daughter has severe arthritis in addition to Crohn's and while she hasn't been on Stelara, she has been on 9 or 10 biologics and has needed many of them at very high doses. We have often had to appeal multiple times, then her doctors do a peer to peer review and if that doesn't work, we have once or twice had an independent review board look at her case. It has sometimes taken months to appeal to get the higher dose or frequency, but it usually does work - your doctor just has to be persistent.
 
Thank you so much for sharing!! He took his first dose of MTX Saturday and did well. It was 15mg, then next week it goes to 20mg and then the next week it will be 25mg. Still fighting with insurance company for the 4 week Stelera, but we got approved thru Johnson & Johnson for one year. New issue now is they won’t pay for his Stelera blood work, saying it’s not necessary, and are saying we owe $2500 for the bloodwork. It never ends with the insurance company!!! So glad your daughters are doing well! I will definitely share this him. Thanks again!!
 
That makes no sense whatsoever - just because his insurance company is not paying for the Stelara, that doesn't mean he's not on it! Insurance companies are completely ridiculous - drives me absolutely nuts.

One other thing, since he's starting college. MTX is hard on the liver so drinking is typically discouraged/not allowed/or is allowed rarely (depending on the doctor) while on MTX. My older daughter found this very frustrating during her first year or two of college. She even tried to stop MTX a couple times and promptly flared. Her rheumatologist then said that a few drinks a week were not a big deal and monitored her liver enzymes very closely. They were fine. Now that she's older, she's much more careful and rarely drinks and doesn't at all if she's on a relatively high dose of MTX (such 20 mg vs. 10 mg).

It helps to have the doctor explain the risks and benefits because teenagers don't love listening to their moms!
 
Oops, you're right, dads too 😂. Really my teenagers didn't like listening to anyone LOL. Thankfully, they are now in their mid 20s and have grown out of that. No one tells you how hard young adults are!! 18-22 year olds can be so stubborn and there's not a thing you can do because they're legally adults :rolleyes:.
Hope he continues to do well on MTX. It does take a few weeks to see side effects typically, but hopefully he'll be lucky and will be just fine. Just make sure he's having folic acid daily and it's good to have Zofran on hand for nausea.
 
Yeah, that want to be adults only when it works in their favor!😂😂
He just took his second dose yesterday and feels like he has had some hot flashes. Can this be a side effect of the MTX?
 
How many days after they take it do the symptoms usually last? He took it Saturday afternoon and just came home from class because he felt nauseous and said his heart rate jumped up/fells drained???
 
Depends
When Ds took shots of mtx he was sick for 6 days then it was shot day again
When he takes mtx pills at 25 mg again he is sick for 4-5 days
At 20 mg pills he splits the dose 12 hours apart
Takes 2 mg of folic acid (folate )
Then is nauseous starting 24 hours afterwards
Not sure how long that lasts since he just deals with it now and pushes through
I can ask later
 
Folic acid is needed daily
Typical dose is 1mg per day
Including shot day
We get it from vitamin shoppe (since solgar brand ) works better for ds for side effects
Lots of years of trial and error on many brands for him
But most pharmacy will fill a script from Gi for it
 
Definitely take Folic Acid! I'm really surprised your GI didn't prescribe it because it's really necessary with MTX, especially at a high dose. My daughter started off with 1 mg daily and when she started struggling with nausea and mouth sores, her doc upped it to 2 mg daily (she had LOTS of side effects when she was younger but no longer has them). Her doc also switched her from the pills to the injection when she started having side effects. That helped, but not enough. Back then, her side effects lasted 2-3 days after the injection despite using Zofran. We tried MTX at several different lower doses but she just couldn't tolerate it and we stopped it.

She re-tried it as a young adult and now has no symptoms (no clue why). But she does take Zofran ODT before having the injection and does the injection at night and takes 2 mg of folic acid daily.
 
As of now, the doc wants him to try not to take the folic because the MTX seems to work better with low folic acid levels. They did say if he continues to have side effects they will add it if needed. Starting tomorrow they want him to take a Benadryl before he takes the MTX and we are going to do the MTX over a 2 day period. 10mg on Friday and another 10 on Saturday. As always, thank you for all the info!!
 
Sorry but please get a second opinion asap
No doc ever recommends taking methotrexate without folic acid
The amount and data may vary on folic acid
But not taking folic acid is not an option
Just wow
Call around please

is he having allergic reaction to methotrexate?
In which case you need an allergist
Benadryl does not stop allergic reactions to methotrexate.
All around please seek a second opinion
 
You absolutely need folic acid with MTX. Benadryl is sometimes used for nausea with MTX (my daughter tried it but it didn’t work for her, just made her tired) so that might be why the doc is recommending it.
But you really need folic acid with MTX so I would get a second opinion.
 
Thanks guys for all the info!! He did better this week when we split the dose up. We have to contact the doctor to see about dosage increase for this week and are going to talk to them about the folic acid again! Thanks again!!
 

Similar threads

C
Methotrexate
Replies
7
Views
1K
braveheart
braveheart
P
How long on EEN before your child had solid motions again
Replies
5
Views
654
padrach3
P
C
Your thoughts, please. 10 yr old.
Replies
12
Views
839
wenkren21
W
CrohnsKidMom
Remicade with low dose Methotrexate. Should we stop the Methotrexate?
Replies
9
Views
1K
asadmom
A
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin

Latest posts

Back
Top