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Stelara Level 1.9

t-bone

t-bone

I've been on the 56 day cycle of Stelara for a bit over two years.

Been having significant (and increasing) lower right quandrant pain
Recent CTE shows ongoing inflammation in the terminal ilieum



... I have found a wide variety in what's considered a normal level ...


Does the actual timing of the test have any bearing on the results?
The blood draw for this test was done on day 53 of the 56 day cycle

Will going to a six week cycle give a reasonable increase?
g.i. staff has been wanting me on the 28 day cycle for over a year
... the difference is about $100k a year in medication

Looks like I need to make a decision by the end of the week
Going to get asked today, but i think i can push it back until Friday

Thanks for reading!
 
Scipio

Scipio

Well-known member
Location
San Diego
You are right that the published recommended numbers show variability. The Stelara numbers required for maintenance of remission (as opposed to induction) tend to be low compared to say Remicade or Humira - in the range of 1.0 to 2.0. So you are in that range now. But there is also a subset of patients that need more drug It's fairly common to see Stelara patients get moved to a 6 or 4 week cycle instead of 8.

Since your trough blood was drawn on day 53 instead of 56 it is probably higher than the the real trough, but only slightly. A 1.9 is unlikely to drop below 1.0 in the last three days of a 56-day cycle.

If we were considering only effectiveness and not cost, I would say moving to a 6 or 4 week cycle is good idea given your increasing symptoms. But with Stelara the cost question always looms large. Are you paying for all this out of pocket? If so I can't see taking on another $100K of drug expense. unless you are fairly rich, I'd say think about switching to a cheaper drug rather than pay an extra $100K. Not many can afford a financial blow like that. But if your insurance will cover it, I'd say go for the shorter Stelara dosing schedule.
 
t-bone

t-bone

I sincerely appreciate your (always) thoughtfull replies!

Working with insurance today on coverage for 2023

will update later today

Thanks again for your thoughts!
 
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