For the last 6 years my life has been a exhaustion rollercoaster.
From trying Humira for 3 months (was like water and did nothing for the fistula).
To trying infliximab again at 18 (worked amazing when i was 14-16, then had to quit because of remission) which did not have the same effects anymore.
At 20 I got started on Entyvio, and while that worked for 2 years (according to my lab results) I did not feel better at all, still exhausted all day every day.
Back then I was ignored, turned away and lied to by my then doctor. (lied about lab results, made illogical choices, could not explain his treatment plan and avoided me when I wanted answers form him
).
At this moment my health has taken another turn.
In december 2021 I went to my new doctor in a academic hospital ( in the Netherlands).
After a colonoscopy, tests, imaging and lab work, I got started on Stelara.
That worked for 6 months and then it did nothing, even a restart did not help (incl injections every 6 weeks instead of 8)
After another colonoscopy (and endoscopy) it was confirmed that the Stelara did not work anymore.
And because I have ulcers and infections spread around in my small intestines, large intestine and oesophagus, surgery has been rulled out (for now).
I now have to choose between Humira and methotrexate injections ( every week)
Or joining a trial for Golimumab + Guselkumab (with a lot of appointments, questionairs and more colonoscopy’s).
At this moment both medications from the trial are not approved yet in the Netherlands, so i can’t just choose one.
Does anyone have experience with humira+ MTX and or Golimumab / Guselkumab?
Mostly asking for how fast it worked for you and if it helped with exhaustion.
My main struggle with crohn’s has been the exhaustion.
It started when I quit Remicade, sinds then it has become a downward spiral.
I work parttime and the rest of the time I am resting, just to make it to the end of the week.
Feels like my life is passing me by and i am just watching others go places, have fun and enjoy life…
sorry if I spelled things wrong, I am from the Netherlands.
From trying Humira for 3 months (was like water and did nothing for the fistula).
To trying infliximab again at 18 (worked amazing when i was 14-16, then had to quit because of remission) which did not have the same effects anymore.
At 20 I got started on Entyvio, and while that worked for 2 years (according to my lab results) I did not feel better at all, still exhausted all day every day.
Back then I was ignored, turned away and lied to by my then doctor. (lied about lab results, made illogical choices, could not explain his treatment plan and avoided me when I wanted answers form him
). At this moment my health has taken another turn.
In december 2021 I went to my new doctor in a academic hospital ( in the Netherlands).
After a colonoscopy, tests, imaging and lab work, I got started on Stelara.
That worked for 6 months and then it did nothing, even a restart did not help (incl injections every 6 weeks instead of 8)
After another colonoscopy (and endoscopy) it was confirmed that the Stelara did not work anymore.
And because I have ulcers and infections spread around in my small intestines, large intestine and oesophagus, surgery has been rulled out (for now).
I now have to choose between Humira and methotrexate injections ( every week)
Or joining a trial for Golimumab + Guselkumab (with a lot of appointments, questionairs and more colonoscopy’s).
At this moment both medications from the trial are not approved yet in the Netherlands, so i can’t just choose one.
Does anyone have experience with humira+ MTX and or Golimumab / Guselkumab?
Mostly asking for how fast it worked for you and if it helped with exhaustion.
My main struggle with crohn’s has been the exhaustion.
It started when I quit Remicade, sinds then it has become a downward spiral.
I work parttime and the rest of the time I am resting, just to make it to the end of the week.
Feels like my life is passing me by and i am just watching others go places, have fun and enjoy life…
sorry if I spelled things wrong, I am from the Netherlands.