Hi!My daughter has Crohns. She is like an 8-9 on a 1-10 scale of severity. Anyway,for years she has been under the care of a gastroenterologist and an oncologist that we love and trusted to be fantastic drs. But,she moved to another city and found herself in the ER with a Crohns flare (hasn’t taken care of herself or gone to the dr for a long time). Anyway,the dr that saw her in the hospital was floored by the treatment she had received from her drs. He said her oncologist shouldn’t have had a say in her care and that they shouldn’t have had her take drug holidays(Remicade). Her oncologist would do blood work and then give us the results and if it was borderline he would ask us if she wanted to do another treatment or wait. This new dr couldn’t believe this. Now,I have to decide whether or not he is right??He wants her to have constant drug treatment. Any advise??
Crohns-drug holiday vs not
- Thread starter misdmom
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Drug holiday
Wow
That’s is not recommended at all for remicade
They know if you wait more than 8 weeks between infusions
It dramatically increases the likelihood of the drug becoming ineffective Due to antibody formation and having an allergic reaction
Definitely seek a second opinion
Remicade is not something you can stop and start or even extend the time between doses past 8 weeks
Really hope the ER doc can get in contact with a new GI for you
Oncology shouldn’t be part of the GI med decisions
GI should be steering that ship
If cancer is an issue most GI or oncology will not use remicade and use other drugs instead
Including Stelara
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Maya142
Crohnsinct
Farmwife
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Mehita
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Wow
That’s is not recommended at all for remicade
They know if you wait more than 8 weeks between infusions
It dramatically increases the likelihood of the drug becoming ineffective Due to antibody formation and having an allergic reaction
Definitely seek a second opinion
Remicade is not something you can stop and start or even extend the time between doses past 8 weeks
Really hope the ER doc can get in contact with a new GI for you
Oncology shouldn’t be part of the GI med decisions
GI should be steering that ship
If cancer is an issue most GI or oncology will not use remicade and use other drugs instead
Including Stelara
Hugs
Tagging other moms
Maya142
Crohnsinct
Farmwife
Pilgrim
Jmrogers
Mehita
Tesscom
crohnsinct
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Sorry but no surprise she ended up in the E.R. if she was off meds and also not taking good care of herself, seeing a doc etc. But we are just moms and what do we know?
Why was she under the care of an oncologist? Did she have cancer, was she in a high risk group? We had one member here a while ago who had a daughter who had cancer and was later put on biologics but there are many other meds besides Remicade that she could use.
There are many, many studies that support no drug holiday. As a matter of fact, I just read one that said a delay of just 4 days with Humira dosing puts you at an increased risk of a flare.
I would not necessarily go by what the E.R. doc said either. I would get her to a good IBD center as soon as possible.
Why was she under the care of an oncologist? Did she have cancer, was she in a high risk group? We had one member here a while ago who had a daughter who had cancer and was later put on biologics but there are many other meds besides Remicade that she could use.
There are many, many studies that support no drug holiday. As a matter of fact, I just read one that said a delay of just 4 days with Humira dosing puts you at an increased risk of a flare.
I would not necessarily go by what the E.R. doc said either. I would get her to a good IBD center as soon as possible.
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I would get her in with a GI that specializes in IBD. Where is she? How old is she?
It is absolutely wrong to do drug holidays with Remicade...it reduces the efficacy and increases the chance of allergic reaction. Once you are on Remicade, you are on it till it stops working. Infusions are normally given every 8 weeks or more frequently - every 4 weeks if necessary.
I'm confused why she is being treated by an oncologist- did she have cancer?
I would try to get her in with a GI who specializes in IBD ASAP to get her on proper treatment. Constant treatment is what is needed for IBD - you can't really do drug holidays with biologics. There are plenty of studies that show this.
I'm really shocked that they were treating her like that...have never heard of that in the US.
Your poor girl - keep us updated.
It is absolutely wrong to do drug holidays with Remicade...it reduces the efficacy and increases the chance of allergic reaction. Once you are on Remicade, you are on it till it stops working. Infusions are normally given every 8 weeks or more frequently - every 4 weeks if necessary.
I'm confused why she is being treated by an oncologist- did she have cancer?
I would try to get her in with a GI who specializes in IBD ASAP to get her on proper treatment. Constant treatment is what is needed for IBD - you can't really do drug holidays with biologics. There are plenty of studies that show this.
I'm really shocked that they were treating her like that...have never heard of that in the US.
Your poor girl - keep us updated.
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Have to agree with what others said, not good to treat as flares occur but to continue with maintenance med until/if it quits working and then moving on to something else. Only reason I can see to not be on a maintenance med would be a greater risk to stay on as opposed to being off. For example my husband has some liver damage and was pulled off azathioprine and liver number dropped to nearly normal they are only slightly elevated which is to be expected with amount of damage (a year ago they were talking liver transplant) so unless/until he flares GI would rather wait before putting him on anything else because of higher risk for liver, he is doing well on scd but has had crohn's for over 25 years and if thing feel squishy (his words) he does 6 weeks of EEN. They are closely monitoring the Crohn's though and sees his GI regularly.
