Drs wont give me biologics

[pieface]

Enough to start biologics? My Dr's are still debating after 5 years of pain and suffering:

• Capsule endoscopy found aphthous ulcer and inflammation in terminal ileum only
• Calprotectin 280 at highest
• CRP fine
• Pain every day
• Loose stools

I had a colonoscopy recently after course of prednisolone (UK) which found nothing. This was a year after the capsule endoscopy. My symptoms have worsened though as I tapered down (currently 5mg).

I'm so desperate I'm basically almost inclined to try the biologics, despite my fear of them.

 

[Scipio]

Have you tried getting a second opinion? Your case is much like mine was except in my case calprotectin was not measured and I suffered a bout of severe anemia. But I was undiagnosed until the capsule camera endoscopy showed a few aphthous lesions in the terminal ileum. That was the key finding that led to my doc diagnosing Crohn's and eventually starting me on Stelara.

Apparently aphthous ulcers in the ileum, coupled with those other IBD-suggestive findings, are not enough for your doc. Maybe a different doc will have a different opinion.

 

[pieface]

Yeah perhaps I should ask. I'm in the UK so I'm not sure how that process works.

They can't tell me what else would've caused the inflammation and ulcers in the ileum, and while 280 calpro might be kind of low, anything over 50 is considered indicative.

Is there much thought around simply TRYING a biologic in cases like mine to see if there's any improvement?

 

[Scipio]

IMO, a calpro of 280 is not all that low. It's a definite positive result and it is more or less aligned with an inflamed area consisting of some aphthous ulcers confined to the terminal ileum (as opposed to big, flaming widespread ulcers).

I don't know the UK National Health rules very well, but my impression is that NH docs' hands may be tied by strict use criteria, especially for expensive drugs like biologics. Is a private practice GI a financial possibility for you?

 

[my little penguin]

Are you willing to try cheaper lower level meds first ?
5AsA’s /immunosupressants (methotrexate or imuran )
From what I understand of the nhs
Lower levels drugs typically are tried first and only if those fail are biologics considered.
In the US here but insurance companies typically have a similar approach here

 

[pieface]

Are you willing to try cheaper lower level meds first ?
5AsA’s /immunosupressants (methotrexate or imuran )
From what I understand of the nhs
Lower levels drugs typically are tried first and only if those fail are biologics considered.
In the US here but insurance companies typically have a similar approach here

Had someone in family get pancreatitis after Imuran (Azathioprine) so keen to avoid... Unsure about the others, but I think, given the current literature, I'd be keen to go straight to biologics after pred.

What are your thoughts on biologics as a diagnostic tool? I think there's enough evidence here to begin... Definitely not a shot in the dark. Trying it then stopping if no luck... I am scared of the risks though

 

[Scipio]

What are your thoughts on biologics as a diagnostic tool? I think there's enough evidence here to begin... Definitely not a shot in the dark. Trying it then stopping if no luck... I am scared of the risks though

I'm doubtful of using response/nonresponse to biologics as a means of diagnosing Crohn's disease - for the simple reason that response to any given biologic can be quite variable for patients that have been successfully diagnosed by other means. You can see this occurring among Crohn's patients right here on this forum. For some anti-TNFs work great but for others some or all of them are a bust. Same for Stelara and the other anti-IL23 drugs. And Entyvio is is off in a class my itself. So if you try a given biologic and it doesn't work does that mean you don't have Crohn's or that you are a non-responder to that particular drug? It's common for diagnosed patients to undergo a period of trial-and-error in both drug selection and dosing until the most effective biologic is determined. That degree of uncertainty is what makes this approach unsuitable for making a diagnosis.

I would be less worried about the risk of serious side effects from the biologics. Those side effects are real but rare. I would be more worried about unwittingly applying an ineffective therapy and thus coming to an erroneous conclusion about the diagnosis.

 

[my little penguin]

I know it seems mean or backward not to just “treat” for what you think /docs are leaning towards but not sure .
For my child all his other specialists were convince he had Eosinophilic disease due to history /some tests and symptoms
Thankfully Gi pushed for a second scope including colonoscopy which confirmed Crohn’s at age 7.
My point we could have used the wrong treatment for the actual disease.

later he had what we thought were bad hives .
Very allergic individual so not outside the realm of possible .
Allergist placed him on double dose of Zyrtec.
That did nothing .
Only a biopsy by a dermatologist proved it was Sweets syndrome .
Later the right med for the disease he actually had fixed the problem .

It’s frustrating to think they are just not treating you .
Exclusive enteral nutrition (EEN - formula only no solid foods )- can be used by a Gi to reduce inflammation in the gut .
That said just like prednisone any scopes done within 6-8 weeks of stopping EEN or prednisone are mostly useless since both heal Gi inflammation regardless of the reason why .