Is Stelara failing me?

[Kannassee]

I started Stelara last August, and to my surprise my FCP levels have been going up….
It’s not very bad yet but it’s not getting better.

I will try to attach a snapshot of my results…..

Higher than 500 before Remicade….after starting Remicade in 6 months FCP was down to low fifties, after stopping Remicade it went up to 200 and started Stelara in August, but now the FCP levels are higher than 300…..not a very good trend I think.

Maybe it needs more time? In their website it says that results are noticeable after 6 weeks.

 

[my little penguin]

dose ? And how often are you getting Stelara?
Everyone is different
My child’s FCP went up (160) when they pushed Stelara to every 6 weeks at 90 mg
And back down to below 15 when he gets it’s every 4 weeks 90 mg
Every 8 weeks did next to nothing for him

 

[Kannassee]

I am getting Stelara every 8 weeks. The dosage is 90 mg.
I have the feeling that after the injection my symptoms get better, but after maybe 5 weeks my symptoms tend to reappear.
I also noticed that it may take more time for it to work.
Can they measure the Stelara levels the same ways they measured the Infliximab levels?

 

[my little penguin]

They can measure Stelara levels
His was at a “good” level but fcp and bloodwork told a different story

 

[Pilgrim]

I posted this elsewhere but in our experience Stelara took 12-16 months to be therapeutic at 4 week dosing.

In the first 6 months her fcal wasn't improving.

 

[Scipio]

I am getting Stelara every 8 weeks. The dosage is 90 mg.
I have the feeling that after the injection my symptoms get better, but after maybe 5 weeks my symptoms tend to reappear.
I also noticed that it may take more time for it to work.
Can they measure the Stelara levels the same ways they measured the Infliximab levels?

Stelara worked pretty quickly for me - a few weeks. I am currently on the standard dose of 90 mg every 8 weeks, and like you, symptoms (mostly pain in my case) start to come back during the last two weeks of the 8 week cycle.

I had the trough blood level of Stelara measured once, and it was within the published recommended range. So since the pain is not that bad, and I didn't have any anti-drug antibodies, I've stayed on the standard dose.

 

[Lynda Lynda]

The last time my Stelara level was checked I believe it was ok, but the NP at my Gastroenterologist office is going to check it again next month. I take Stelara 90 mg every 8 weeks for almost 1.5 years. My next injection is in 3 weeks. I feel that my Gastroenterologist office should be doing tests more often, blood / stool / Stelara levels, etc. Only My Gastroenterologist and my Endocrinologist do bi-yearly and / or yearly blood testing. My Endocrinologist orders the CMP, TSH D3 and A1C. I cannot remember the timeline of my blood/ stool tests from my Gastroenterologist. My calprotecton was around 700 5 years ago, the last time it was checked it was around 500. Why isn't my Gastroenterologist concerned with my calprotecton level. I was diagnosed with Crohn's 5 years ago, but have been sick since 1997. I have stricture and inflammation in my terminal Ileum. Thank You for listening. Lynda.

 

[Kannassee]

Well the good thing is that I did not have antibodies to Stelara.!!!
The blood for the test was taken 4 weeks after the injection and the concentration was 3.9. The Dr. thought that it was in the lower side since it was more than 4 weeks to the next dose.
So he wants me to try it every 4 weeks instead of 8 weeks.
I hope that is going to make a difference. At least this winter I did not have the continuous colds and bronchitis that I had last year while on Remicade.

 

[Lynda Lynda]

Well, now on Saturday morning I get a patient portal message from the NP at my Gastroenterologist office. She says to keep taking the Budesonide for now. Good Grief, I haven't taken it for 2 days and am feeling the withdrawal side effects. Her message was so sugary sweet apologeticly kind ( ? )
During my last visit with her I clearly remember her accentuating the fact that steroids are dangerous and that I had been taking the Budesonide a long time so I need to stop taking it.
I did mention in my portal message back to her this morning about prednisone because prednisone is a tablet and can be broken up and would be easier to wean off of. I told her that during my next visit I was going to write everything down. I am to keep taking the methotrexate. I get my Stelara levels checked on the 19th. So after those results are in I am sure that I will be told what to do next.
* sighs*

 

[Jo-mom]

How are you now that you haven't taken Budesonide for a few days? I would wait to be sure before starting it again. Typically, this would normally be a bridge drug and since you've been on Stelara and MTX for awhile, normally the steroid is weaned off as Stelara and MTX should be enough to help you with Crohn's. But then again, I'm not a medical professional but since you've already stopped, I would wait to ensure the message unless you are really having difficulty.

 

[Kannassee]

Well, now on Saturday morning I get a patient portal message from the NP at my Gastroenterologist office. She says to keep taking the Budesonide for now. Good Grief, I haven't taken it for 2 days and am feeling the withdrawal side effects. Her message was so sugary sweet apologeticly kind ( ? )
During my last visit with her I clearly remember her accentuating the fact that steroids are dangerous and that I had been taking the Budesonide a long time so I need to stop taking it.
I did mention in my portal message back to her this morning about prednisone because prednisone is a tablet and can be broken up and would be easier to wean off of. I told her that during my next visit I was going to write everything down. I am to keep taking the methotrexate. I get my Stelara levels checked on the 19th. So after those results are in I am sure that I will be told what to do next.
* sighs*

Hmmm……what a shame that you need to keep taking those other meds….
Between Prednisone vs Budesonide…..for me the Prednisone is a magical drug….it only takes a pill or two to get rid of my symptoms although my GI says it doesn’t work that way, for me it does.

But it has a lot of bad side effects long term.

Budesonide on the other hand it gets absorbed much less into your body and it acts mostly in the external layers of the mucosa, so not so many side effects. But for me it does next to nothing!!!

Interestingly although I know mesalamine does not help with Crohns in my case when I have proctitis mesalamine suppositories are way better than prednisone supp to eliminate my symtomps.
I have been suspecting for a while that I may have Crohns + UC….. although I know that’s not probable for sure mesalamine suppositories help me a lot!!!…..Anyway everybody is different so maybe I react to them on a positive way.
I don’t have much hope in Stelara helping me the way Remicade did but I will keep trying it.
Interestingly I all my life when I did blood work my lymphocites levels were low in the 2000’s and the neutrophils were always out of range.
When I was in Remicade it was the other way, low neutrophils and very high lymphocites in the 4000’s or 5000’s.
Now is back to the old ways a little but not so extreme…..lymp in the low 3000 and neutrophils in the 4000’s…..but I steel get diarrea….
I wish they put me back in Remicade. I don’t care for the lymphocitosys since it was reactive.

 

[my little penguin]

Given you have been on budesonide for over a year please follow your np advice and keep taking it
While steriods are helpful and can have bad side effects
Stopping suddenly is never recommended
Secondary adrenal insufficiency is real and can cause serious consequences
See an endocrinologist
Once your Gi decides to wean you
Endocrine can do it safely
Your body needs cortisol daily to function and more so during times of stress
The adrenal glands produce this daily
However when you take Steriods especially for long periods of time the adrenal gland go to sleep (don’t signal cortisol production )
Which can be deadly of your body gets very stressed (surgery scopes etc…)
Endocrinologist can wean extremely slowly so side effects are less and your adrenal glands hopefully wake up
If they don’t the endocrinologist can test and put you on a maintenance dose of hydrocortisone to replace what your body would make naturally until the adrenal start working again

my kiddo had this from 3-4 months of steriods at 10 mg
Had to carry solucortef to inject if he had an emergency to avoid adrenal crisis

telling you this
It’s not a matter of pushing through side effects of withdrawal if you have secondary adrenal insufficiency

 

[Lynda Lynda]

This is what the NP wrote during my last visit, see attached. I tried going off the Budesonide at the end of March and pooped in my pants at a coffee shop. Tried going off the Budesonide this past week, stopped it for 2 days. Got really sick. Panicked and got very emotional. I live in some else's house and sort of share a bathroom ( share using the shower, but not the sink or toilet. ) Embarrassing for this to happen while living in someone else's house. Started taking the Budesonide again 3 days now, still not back to normal as far as my BM's. And today I sobbed on the phone while talking to my sister. I sent a portal message to the NP this weekend saying the only way I would quit taking the Budesonide is if I was prescribed prednisone because it's easier to wean off of prednisone. Her note from my last visit says something about taking me off the Methotrexate too ! Seriously !! I can't go through the physical side effects and emotional side effects of discontinuing one 3mg capsule of Budesonide, which is the equivalent of at least 10mg of Prednisone, at one time.

I think I see my Endocrinologist in June, I always do a blood draw before my visit, she only orders CMP, TSH and A1C. I have hypothyroidism and thyroid nodules and she is also monitoring my bones with DEXA scan and I take D3. My bones are bad and I had a Reclast infusion, I think it was this year. I see her every 6 months. I've been seeing my Endocrinologist for probably 20 years.

I suffer from depression and anxiety and I thought I was going to have a breakdown today, but now that I read about what my little penguin said, I understand why I am feeling crazy today. And I thought all I was dealing with was my Crohn's ( my BM's and inflammation ) now it's five hundred other things to deal with.

None of my doctors care what each other is treating me for or my prescriptions or how it's all connected. How stupid. I fell asleep for an hour this afternoon because I was worn put after sobbing.

 

[my little penguin]

Write a portal message to your endocrinologist since you have been seeing them so long
Explain what level of steriods you were on and for how long
Dosage etc
As well as side effects when you tried to wean
Most let Gi take the lead in terms of being on or off steriods but endocrinology steps in to help with weans and reduce side effects when tapering down
You can do this just ask the Endo for help

 

[Maya142]

My daughter had adrenal insufficiency. In her case, she was on Budesonide with Imuran for a year and then was switched to Prednisone for a worse IBD flare - starting at 40 mg and tapering down. She struggled getting off it and was referred to endocrinology but did and once she had been off it for several weeks, her endocrinologist tested her ACTH and cortisol levels, both of which were critically low (her ACTH was undetectable). She was nearly hospitalized but they managed to stabilize her in the ER with IV hydrocortisone and then discharged her on the physiologic dose of hydrocortisone (i.e what her body would make normally if she could produce cortisol). She was on that for months before we very slowly and carefully tapered. She had serious adrenal insufficiency - she was rushed to the ER more than once with an adrenal crisis which can be fatal. She had to carry around a syringe of solu-cortef and we had to use it more than once. She also had to wear a medic alert with adrenal insufficiency on it.

I would ask your GI to refer you to an endocrinologist ASAP. They would likely switch you to the equivalent dose of prednisone from budesonide and taper very very slowly. It is very rare to get adrenal insufficiency from budesonide by itself though. In fact, our GI said she had never seen it from just budesonide by itself. So it very well could be something else causing your symptoms, but since adrenal insufficiency is serious, it would be good to get checked out.

Her symptoms were extreme fatigue, nausea, low blood pressure, dizziness and just not feeling well.