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antibodies to Stelara?

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Posted 3/25/2018 11:39 AM (GMT -5)
Can you get antibodies from Stelara while on imuran (150mg)

After 10 months on Stelara and a very good bowel (at times great!) I'm flaring. B, m, severe L side pain, urgency...the works. My last infusion was Feb 25 and immediately following I was crippled with severe knee pain. At this point bowel was normal. Knee pain has decreased but now its my hips.

10 days after Stelara I had IVIG.

But since last Sunday, after eating a salad (my 1st in years) my bowel deteriorated. Now flaring.

I seem to be going 3 times day, twice if I take codeine for LQ pain. But still, lots of b which I also haven't had in yearssad

Of course depression and anxiety have returned.....just as I thought it was safe enough to return to school/work...
Posted 3/25/2018 12:34 PM (GMT -5)
UB,

I haven't seen you on here for awhile... I thought that it was because the Stelera was working. (And it sounds like it has) Congratulations!

I am unsure on the antibodies concerning Stelera and Imuran. I don't even know if the have a test for that...but I am sure someone will be here with more input...

I do know that my GI tries to use methotrexate in stead of the Imuran.. He said he has had better success with the methotrexate prohibiting the development of antibodies. If someone does develop antibodies while using the Imuran he switches them to methotrexate to see if that helps to lower the antibodies.

Also on the reintroduction of salads into your diet....the first time I tried it I had a mini flare for about 7 to 10 days....then I sloooowly went back to my previous norm. It took awhile before I could eat salads...and that was before the colostomy. Now with the colostomy, well I can usually eat what I want ......but occasionally I go into a painful mini flare...darn jalapenos or salsa!! Lol.....

The knee pain, I have a friend that went thru that with Remicade, Humira and now Stelera. She is going to a rheumatologist. (I have that issue with Remicade also) We use the same doctors and they are trying turmeric on us vs. more medications. For me...(I take 1000 mg per day) it works as long as I take it. (I still have pain but am able to hobble around) I was taking 2000 mg. at one time but I started having dizzy spells so we went back to 1000.mg. She is taking 2000 mg. per day and she said it helps but doesn't take away all her pain. So....I dunno... Lab had issues with her knees and Remicade...hopefully she will come on and let us know what helped her...

I think of you often. I hope you come out of this flare quickly and that things keep improving for you!

Clo
Posted 3/25/2018 12:41 PM (GMT -5)
I was able to stop Stelara for 6 months when I had surgery to replace my hip and was able to restart it without any issues. I’m not sure about antibodies with Stelara, if that is an issue or not.
Posted 3/25/2018 4:12 PM (GMT -5)
It's possible to get antibodies to stelara as is the case with all biologics.

Prometheus labs has a test for stelara NEW PROMETHEUS® Anser® UST Simultaneously measures ustekinumab (UST) and antibodies to ustekinumab (UST) levels in serum.

/www.anserifx.com/

From mayo clinic:

Antibodies to Ustekinumab
-In the phase II clinical trial, the incidence of antibodies to UST was 0.7% at week 36.2 In the pooled results of the phase III clinical trial, the incidence of antibodies to UST was 2.3% through one year.1
-Some patients on biologic therapy may develop antibodies that resolve over time. 7,8,9
Source /www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/75277

Not talking high odds(0.7% to 2.3%) but certainly possible.
Posted 3/25/2018 6:03 PM (GMT -5)
Here's another:
www.janssenlabels.com/package-insert/product-monograph/prescribing-information/STELARA-pi.pdf

Somebody said...
6.2 Immunogenicity
As with all therapeutic proteins, there is potential for immunogenicity. The detection of antibody formation is highly dependent on the sensitivity and specificity of the assay. Additionally, the observed incidence of antibody (including neutralizing antibody) positivity in an assay may be influenced by several factors, including assay methodology, sample handling, timing of sample collection, concomitant medications and underlying disease. For these reasons, comparison of the incidence of antibodies to ustekinumab in the studies described below with the incidence of antibodies to other products may be misleading.

Approximately 6-12.4% of subjects treated with STELARA® in psoriasis and psoriatic arthritis clinical studies developed antibodies to ustekinumab, which were generally low titer. In Crohn’s disease clinical studies, less than 3% of patients treated with STELARA® developed antibodies to ustekinumab. In psoriasis clinical studies, antibodies to ustekinumab were associated with reduced or undetectable serum ustekinumab concentrations and reduced efficacy. No apparent association between the development of antibodies to ustekinumab and the development of injection site reactions was seen. In psoriasis studies, the majority of patients who were positive for antibodies to ustekinumab had neutralizing antibodies.

Weird that the antibodies #s are different for psoriasis vs crohn's. I wonder if that's because it's been around for longer for psorisis or what? It seems pretty uncommon regardless.
Posted 3/25/2018 6:32 PM (GMT -5)
Speaking of difference in antibodies, it could be the dosing. My GI has told me in the past that for some patients they were able to “power through” some of the antibody reactions by doubling or tripling the dosing. He was referring to anti-tnfs at the time of our discussion but I’m wondering now if it is the same with Stelara, the larger dose and the smaller antibody statistics.
Posted 3/26/2018 7:23 AM (GMT -5)
All the biologics are similar in the way antibodies work. Increasing dosing can often bring a patient back into response. To the immune system, all biologics look like viruses (tiny, foreign proteins introduced into the bloodstream) and on first exposure the immune system attempts to block it by developing antibodies to counter it.

If antibodies are successfully created by our immune system then they dilute the biologic concentration within your blood and therefore make the biologic less effective (effective dose is below ideal therapeutic levels due to antibody culling). If you double or triple the concentration of the biologic then you can maintain a high enough concentration to maintain ideal therapeutic response in a lot of cases, despite the presence of antibodies. It mostly depends on how many antibodies your immune system is creating, past a certain point your biologic dosing can't counter it in any sane way.
Posted 3/26/2018 4:41 PM (GMT -5)
Hi Everyone,

Thanks for the response. My GI just informed me that I will be tested for antibodies on Apr 25th the date before my next infusion. It seems that I've been having a different reaction after most if not all Stelara infusions. From UTI's, yeast, nausea, itchiness, headache etc etc. The knee pain was by far the worst. I was absolutely crippled for 10 days....didn't sleep, gravity hurt, sheets hurt, it was agony. Like I was burning from the inside. I finally caved and took a perocet which allowed me a bit of respite. Of course during this time I was bed ridden which meant no ballet, hikes etc. I was so tearful and upset thinking I'd have to choose between bowel health and joint health.....

Here's what changed: 10 days after Stelara, I had IVIG. I got through half a bottle and noticed that my knee pain was gone. GONE! My dose is 55 g so I'd say I had about 15 g when I noticed this. I knew it would help but certainly not that quickly or dramatically. Over the next few days the pain would come and go....sometimes excurciating and other times much less so. My bm's increased from 2 to 3 times with a bit of m. This surprised me as IVIG always makes my bowel better.

I'm wondering if IVIG targeted Stelara hence the improvement in the joint pain but the decrease in bowel function?

ipoop--- do kids today read "Choose your own adventure books?" Thanks for the trip down memory lane and reminding me 80's were a really, really long time agosmile

CLO- Hi Chickee!! Thanks for responding and for the tip regarding turmeric. I'm seeing a rheumatolgist
on Wed.
As far as life, things were pretty darn good. I even went on a little 5 day excursion in Feb and loved every second. I woke one morning to 5 deers standing a few feet away from my room! understand, that I'm a city gal and have never seen wild deer before;) What a magical trip that was. All I did was hike, catch snowflakes on my tongue and sit infront of the fire. I had 3 bathrooms at my disposal but only needed 1!! Would you believe I didn't even need a tylenol? Within 1 hour of getting home the stupid fistula acted up and I thought I'd need to go to ER. It ended up bursting on its own. For the most part it's quiet but some days the butt pressure pain is a challenge.

Speaking of fistulas....my amazing GI connected me with a surgeon about 2 hours away doing a study injecting stem cells into fistula tracts to heal them. I see this new Dr in mid April. I will post on the crohns side so others can learn about it. I'm wondering if maybe he won't limit it to fistula tracts and would be willing to treat my entire bowel?? My GI said they are also doing this study at the Mayo clinic in Florida. Wondering if this would be an option for you?

Other news....well a bit of tragedy. Lots of stress not knowing which way to turn in life. To work or not to work? I've been feeling really inadequate these days and pretty hopeless of ever moving forward. There's also been lots of family issues that have crushed me recently. So although I've been incredibly grateful for how far I've come over the last few months, I still feel lonely and without much of sense of self worth. Every time I think I'm in the clear it seems another health issue comes up preventing me from returning to school/work.
Posted 3/26/2018 10:07 PM (GMT -5)
UB,

Your response made my heart do a happy dance! I was so pleased to read that you actually took a little time off! Sometimes you need that.

Congratulations on the fistula trial! I have read about that and I even inquired but for now my CRS does not think it is an option for me. My fistula has decided to grow and we are in a bit of a quandary. CRS and May Clinic docs had a meeting and surgery is not something they want to do at this time. I go back in June or July and they will have another look. I really really hate fistulas....but my last surgery sent me into acute renal failure...and my blood tests have not been stable since. I am forever hopeful though.

Try to keep your chin up. That hopeless feeling and being lonely....it impacts my entire support group down here. We all struggle with those feelings. The best way for me is to take it moment by moment and to just try powering through. Although there are days where I just have mini meltdowns...and others where I am filled with profound gratitude for just seeing the sunrise another day. Crohns changes you, the way you think and plan, your dreams and aspirations. Try to change with the moment. Sometimes the scenic route is the way we have to go....Perhaps the school can work with you?

Please let us know how it goes.

I was so glad to see you posting....

Clo
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