Humira Fail What Next..

[Pam.estella]

Hi everyone,
My son (20) just had his scope yesterday and his Humira MTX combo is a fail. His doctor would like us to decide on alternative therapy within the week, and wondering if anybody has experience switching from Humira to Remicade? He has 6 months left in college and we were hoping to avoid any major shifts in his progress. It seems like Remicade would be the least likely to cause unknown side effects, but does it have a chance to work if Humira failed? He is in the age group that they wouldn't want to combine AZA so Remicade would have to work on its own. I did read one study that it is more likely to work on it's own than Humira but any other experience or advice would be appreciated. Her recommendations in order were Rinvoq, Skyrizi, Entyvio. She doesn't use Stelara as much anymore because apparently their patient assistance program is no longer very helpful.

 

[kiny]

My 2 cents. Remicade/infliximab and its biosimilars have always had slightly higher remission rates than Humira, but the difference is small. What infliximab seems particularly good at, and why it is often preferred over Humira, is fistula closure. The addition of EN has shown it can avoid loss of response to infliximab.

Imo, the data on Entyvio for crohn's disease is extremely weak.

JAK inhibitors have not lead to remission in several studies, many scoring worse than placebo, they were subsequently taken offline. The fact one ended up being approved for crohn's disease was quite shocking to many. There's no reason to use JAK inhibitors for crohn's disease.

 

[my little penguin]

Not sure why your Gi doesn’t like Stelara .
No issues with the copay card here
Only $5 copay
You need to find out if you have a maximizer program for insurance or something similar
But it would be the same as humira
Once you max out for the copay you max out
Most have a set copay for your insurance after that or a different plan which sets your copay to zero (prudent rx for cvs Caremark )

My kiddo is also 20 and has been on Stelara plus methotrexate for 6.5 years now .

Remicade is still anti tnf alpha so you could have mixed results depending on if his body stopped working with anti tnf alpha

but you would know quickly

Stelara can take months to work ….. that could be an issue for him short term

My kiddo so far has had the longest success run with Stelara just took close to 8 months to work (he was on too low a dose frequency at first for about 6 months ) once he moved to every 4 weeks he has been fine .

rinvoq jak clots and infection risk is what i have heard of

entyvio only good for the large intestine-not for the small intestine . It can take up to a year to work .

 

[Pangolin]

I would choose Skyrizi. According to the papers, it appears to be very effective, and it's more narrowly targeted than Stelara.

 

[my little penguin]

Check with insurance on skyrizi
From our experience most will not approve it before Stelara /entyvio/rinvoq since it’s is the most expensive unless you fail the others
Also with the others if you haven’t failed remicade which is less than the other ls above

 

[Pangolin]

The most common insurance requirement is that a patient must fail one anti-TNF before trying any other biologics. After one anti-TNF failure, usually all of the other options open up.

This is very bad for patients because anti-TNFs are neither the most effective nor safest option, but the industry tends to get stuck on one option for many years.

 

[my little penguin]

After one anti-TNF failure, usually all of the other options open up.

I have not seen that as the case in the number of parents I know
Unfortunately- everything I have seen is by type and cost ….
Even then with failing the other cheaper options skyrizi was denied leaving them to try other anti tnf such as simponi aria since it was all insurance would approve .
Insurance is very individualized by company even for the same brand of insurance just depends what they opt in and out of

 

[kiny]

Made a quick drawing if it helps.

Anti-inflammatory medication for crohn's disease blocks inflammatory pathways. Anti-TNF and anti IL-23 block primary inflammatory pathways occuring in intestinal tissue.

When other companies want to compete with these, they need to find different pathways, which are not as relevant, and they of course don't work nearly as well (Entyvio), or at all (JAK inhibitors).

For anti-inflammatories, medication is basically at the end of the line. Newer anti-inflammatories work less and less well since other inflammatory pathways are far less relevant. The other option to surpress inflammation is enteral nutrition.

1000×976
125,4 kB

 

[kiny]

A GI objecting to Stelara for whatever reason is incomprehensible to me. When Infliximab/Humira and Biosimilars fail, the only other 2 options that have a good track record are Stelara and EN(ileal disease).

You can look over all the other medication out there, and remission rates are depressing, TNF-alpha and IL-23 are the low hanging fruit, all other inflammatory pathways are not very relevant or take far too long to get people into remission. If medication takes 1 year to get people into remission, the intestinal damage has already been done, there's no point to that medication.

 

[Scipio]

The most common insurance requirement is that a patient must fail one anti-TNF before trying any other biologics. After one anti-TNF failure, usually all of the other options open up.

Common requirement yes, but not in all cases. My first and so far only biologic has been Stelara for over 6 years now. My GI thought it was the right drug for my Crohn's and was able to convince the insurance company to cover it from the start. I never had any anti-TNF.

 

[Pangolin]

I'd like to point out that MLP's son, my son, asadmom's son, and Scipio have all had positive results with Stelara. In my opinion, Stelara is a really good option, but Skyrizi may be just as good or possibly better.

 

[Pam.estella]

Thank you everybody for your input! It's not that I don't trust the doctor, but sometimes think they have a much more narrow view than people living through it. Your input & knowledge is incredibly valuable IMO. Thanks for taking the time to respond. I will update everybody but it looks like either Stelara or Skyrizi will be our choice depending on what insurance says.

 

[momsa]

Everyone is different, but FYI, my son failed Stelara and is doing wonderfully on Skyrizi, and by that I mean he has no symptoms whatsoever and his latest colonoscopy results were excellent, showing that his gut has healed

 

[Pam.estella]

Hi everybody, I've been wanting to update this but have been waiting to get the bill, and see if it works... but now 4 weeks after his first infusion of Skyrizi he has 2 areas of psoriasis showing up. He is due for his 2nd infusion tomorrow. Wondering if anybody has experience with new psoriasis showing up from Skyrizi? He had a small area of psoriasis for years that completely went away after doing the CDED diet and did not flare while taking Humira. Hoping this does not indicate failure. Hope all is well out there.

 

[my little penguin]

Ugh ….
Psoriasis can show with a new biologic even if the biologic is working for crohns it may not be working for the psoriasis
Or you can start a new biologic and never had psoriasis only to have it be unmasked then .
It’s 33% it will get better if the med is stopped if it was induced by the drug
33% it will remain the same and 33% it will get worse
So typically the advice is to use the biologic that fixes the crohns and get dermatologist to fix any left over psoriasis.

so if it doesn’t clear with the next dose definitely call his dermatologist so they can tackle the psoriasis.

 

[asadmom]

Hi everybody, I've been wanting to update this but have been waiting to get the bill, and see if it works... but now 4 weeks after his first infusion of Skyrizi he has 2 areas of psoriasis showing up. He is due for his 2nd infusion tomorrow. Wondering if anybody has experience with new psoriasis showing up from Skyrizi? He had a small area of psoriasis for years that completely went away after doing the CDED diet and did not flare while taking Humira. Hoping this does not indicate failure. Hope all is well out there.

Sorry to hear about the skin problem. It's very annoying when you put all hope into one medicine and it gives you something else to fix. My son got psoriasis while on Humira. His GI said that many peds have run into similar issues while on anti-tnf so her general practice is if the patient has a history of eczema (my son did when he was little) then they go straight to Stelara for the treatment choice. My son's psoriasis completely went away after he switched to Stelara and it could be that 1) he simply stopped Humira or 2) Stelara took care of the psoriasis. He's been on Stelara for one year now and no skin issue so far.

Since CDED helped clearing his skin, are you considering try it again?

 

[Pam.estella]

Sorry to hear about the skin problem. It's very annoying when you put all hope into one medicine and it gives you something else to fix. My son got psoriasis while on Humira. His GI said that many peds have run into similar issues while on anti-tnf so her general practice is if the patient has a history of eczema (my son did when he was little) then they go straight to Stelara for the treatment choice. My son's psoriasis completely went away after he switched to Stelara and it could be that 1) he simply stopped Humira or 2) Stelara took care of the psoriasis. He's been on Stelara for one year now and no skin issue so far.

Since CDED helped clearing his skin, are you considering try it again?

Thanks for the input. Unfortunately CDED drove his calpro over 2200 so it did not help his crohns. We’ll wait & hope it clears with a little more time. Maybe it just hasn’t been long enough

 

[kiny]

Data behind CDED is weak, certainly not good enough to support using this diet outside of studies. I have voiced my scecticism over CDED claims several times.

 

[Maya142]

Is he still on MTX? If not, that could help with the psoriasis. Or topical stuff - steroid creams etc. can help if it's mild.

 

[cheka]

psoriasis - gut dysbiosis/leaky gut --- it's the root cause. same cause for other autoimmunes too, like crohns. fix that and it will disappear. family member reversed his psoriasis at age 30 - using the protocols that i've been posting here in the 'research' section

he had psoriasis since childhood and all of the medical treatments were abject failures. it feels so good to finally help him put that to bed - we fought it for 20 plus years

 

[Pam.estella]

psoriasis - gut dysbiosis/leaky gut --- it's the root cause. same cause for other autoimmunes too, like crohns. fix that and it will disappear. family member reversed his psoriasis at age 30 - using the protocols that i've been posting here in the 'research' section

he had psoriasis since childhood and all of the medical treatments were abject failures. it feels so good to finally help him put that to bed - we fought it for 20 plus years

Hi Cheka,
Thanks for sharing your experience and information. I appreciate everybody's time and willingness to share. I will share this information with my son who is a young adult navigating a difficult situation. I am happy for you to have found something that works for you, but am cautious about combining that many supplements. For him I would recommend adding them singly to evaluate their effectiveness and create awareness of side effects. The CDED diet had a goal of creating more butyrate by adding resistant starch to the diet so I may recommend starting that and seeing if it makes any difference. That is the diet that helped his psoriasis but increased his Calpro. It appears there are also some studies evaluating that supplement with IBD patients with some success. I will report if it makes any difference for him. (If he's willing to try LOL) He receives his 3rd and final loading dose infusion of Skyrizi tomorrow but has some small areas of psoriasis remaining. So it doesn't seem like it is from discontinuing Humira. We will probably try to find a good derm if it gets any worse. Still have not received any bills so no comment about insurance or billing for Skyrizi yet.

 

[Pam.estella]

Is he still on MTX? If not, that could help with the psoriasis. Or topical stuff - steroid creams etc. can help if it's mild.

MTX was discontinued with Humira.

 

[cheka]

Hi Cheka,
Thanks for sharing your experience and information. I appreciate everybody's time and willingness to share. I will share this information with my son who is a young adult navigating a difficult situation. I am happy for you to have found something that works for you, but am cautious about combining that many supplements. For him I would recommend adding them singly to evaluate their effectiveness and create awareness of side effects. The CDED diet had a goal of creating more butyrate by adding resistant starch to the diet so I may recommend starting that and seeing if it makes any difference. That is the diet that helped his psoriasis but increased his Calpro. It appears there are also some studies evaluating that supplement with IBD patients with some success. I will report if it makes any difference for him. (If he's willing to try LOL) He receives his 3rd and final loading dose infusion of Skyrizi tomorrow but has some small areas of psoriasis remaining. So it doesn't seem like it is from discontinuing Humira. We will probably try to find a good derm if it gets any worse. Still have not received any bills so no comment about insurance or billing for Skyrizi yet.

if he wants to start slow -- one capsule of swanson brand bacillus coagulans per day. that's it. i have had some successes with that alone. give it a couple of months - trillions of bacteria in our guts, takes time to change the mix of bad guys vs good guys

how's his diet? that's another easy change. if he will, have him eat clean for a couple of months while taking the bc. no fried, no bread, no nsaid, no fake sugar, no junk food while we are repairing the damaged gut.

if you/he need proof - here's a search - https://www.google.com/search?client=firefox-b-1-d&q=psoriasis+dybiosis+pubmed

and one of the results

https://pubmed.ncbi.nlm.nih.gov/30920647/
Gut microbiota dysbiosis in a cohort of patients with psoriasis

Results: Gut microbiota composition of patients with psoriasis displayed a lower diversity and different relative abundance of certain bacterial taxa compared with healthy individuals.

This study shows a lower bacterial diversity and different relative abundance of certain bacterial taxa in patients with psoriasis. We gain knowledge and insight into the microbiome alterations in psoriatic disease, opening new avenues for therapeutic approaches to reshape the human microbiome towards a healthy status.

 

[my little penguin]

@Pam.estella
Please understand the poster was never diagnosed with crohns by a medical professional
And claims to have fixed their “GI issues /self diagnosed crohns“ through supplements.
They are not under the care of any doctor /gi
Proceed with utmost caution
And review any /all changes for your child with your child’s Gi