Remicade - doctor wants to decrease dosage - is this a thing?!

[cassimw]

Remicade question - decreasing dose?: My daughter has been on Remicade for Crohn's for 5 years has been doing well. Recently her GI left the practice and we started seeing a new GI there. After my daughter's scopes last week, the GI said she wanted to talk with us at the follow up appointment (TOMORROW morning!) about reducing the Remicade dosage with the goal of eventually getting off Remicade. This terrifies me for two reasons: (1) obviously I don't want her to flare & (2) I don't want her to create antibodies and potentially preclude her from using a medication that has done so well for her.
Has anyone's doctor suggested this? Does it make sense? Should we seek another opinion? Additional details (1) my daughter had an internal fistula at dx that healed with Remicade; (2) after an ileocecectomy 3 years ago, she has done well, so maybe she just needed the surgery and she doesn't need the Remicade? (3) She's 20 and in college doesn't want to transfer to adult care, but maybe this is the time if this doctor has a different philosophy. I wonder what adult care docs think about Remicade? Any thoughts on any of this would be great!

 

[my little penguin]

yikes
Reduce dosing sure to get to the lowest effective dose say if she was on10 mg/kg every 4 weeks
Slowly (very slowly ) space out to 5 mg/kg every 8 weeks (standard dosing )
But most don’t pull a biologic unless there is an adverse reaction or it stops working
Because a lot of times that’s it you can’t use it again in most folks
There are a few exceptions but …
Wow
Changing Gi or specialists is always hard
I know when we moved two years ago
Philosophy about scopes /meds etc was very different
Not wrong but different

I would get a second opinion since
It can’t hurt
Extra set of eyes always provides a fresh prospective
Not sure what Adult gi’s do

tagging @Maya142
@crohnsinct
@Tesscorm
Since their kids are older

 

[cassimw]

yikes
Reduce dosing sure to get to the lowest effective dose say if she was on10 mg/kg every 4 weeks
Slowly (very slowly ) space out to 5 mg/kg every 8 weeks (standard dosing )
But most don’t pull a biologic unless there is an adverse reaction or it stops working
Because a lot of times that’s it you can’t use it again in most folks
There are a few exceptions but …
Wow
Changing Gi or specialists is always hard
I know when we moved two years ago
Philosophy about scopes /meds etc was very different
Not wrong but different

I would get a second opinion since
It can’t hurt
Extra set of eyes always provides a fresh prospective
Not sure what Adult gi’s do

tagging @Maya142
@crohnsinct
@Tesscorm
Since their kids are older

That’s my thinking too. She’s on 400mg every 8 weeks per the infusion center. I thing that’s 10mg? Maybe they could notch it down a bit? But I’ve just never heard of this and since they only check her levels like twice a year due to insurance, we won’t even know it that’s going to keep her levels at an acceptable number. *sigh*

 

[pdx]

400 mg every 8 weeks is actually already a pretty low dose (unless your daughter is quite small?). My daughter is on 650 mg every 6 weeks, and that is 10 mg/kg for her at 140 pounds. I agree that I would want a second opinion before dropping down any further. We switch to an adult GI this summer so I'll be curious to see if she has different treatment recommendations than our pediatric GI.

 

[crohnsinct]

No. This is most definitely not standard of care. Not in pediatric practice or adult practice. There are numerous studies that show withdrawal of a therapy that is working will result in flare. I follow many adult GI's and attend case presentations every week and not one of them are ever in favor of discontinuing a therapy that is working. The risks are much too high.

Yes, they are in favor of trying to find the lowest dose of a drug that will keep the disease in remission but as MLP said, that is very different than withdrawing a therapy.

You are already switching docs, I would see if there is another doc that is more in line with how you would like to proceed or hear the doc out, perhaps they weren't explaining their strategy 100% correctly.

I am curious if you had the meeting today and what transpired.

If you need us to bombard their inbox with studies and articles that say don't stop therapy just say the word

 

[Jo-mom]

I agree with the others. It doesn't sound right. My son was on 10 mg/kilo every 4 weeks but now is on 5 mg/kilo every 4 weeks. It was decreased because he was doing well and had very high levels of Remicade in his body. He eventually might be spaced out, but dropping the medication is never an option. Getting to a standard dose from a high dose can happen though but it sounds like your daughter is on a standard dose now.

 

[Tesscorm]

I'd be wary as well. Because my son has had a number of odd infections over the last 3-4 years, his GI did suggest he could consider a less systemic biologic (my son is on remicade) or drop it altogether since he's been in remission for 10 years. BUT, and it's a big BUT, as crohnsinct said, GI did warn that dropping treatment completely could trigger a flare. And, leaving remicade for another biologic... no guarantee next one will work and then could be without remicade due to antibodies. Said he wasn't a fan of doing this but wanted to give my son the option given the infections.

So, for my son,... seemed like a lot of risk because of a few odd infections... we haven't made any changes.

I don't know what level your daughter showed last time but for comparison's purposes... my son was tested a few years ago... seemed the rule of thumb therapeutic goal was a serum level of approx. 5-8 (not sure if this has changed). My son was at 12. As my son is on 5mg/kg every 6 weeks, I asked GI if we could stretch it out to 8 weeks. GI said no because he didn't feel 12 was excessive, has patients with levels as high as 20 and is comfortable with that.

 

[crohnsinct]

YES! That! Thanks for mentioning levels Tesscorm.
All of my daughters’ GI’s shoot for higher than published levels. They say most kids need higher levels. O always needed a level 10 or higher and with Humira her GI feels she needs a level over 16 and the published level that works is 7.

 

[Maya142]

That's not standard of care - even for adults. My daughter switched to an adult GI a couple years ago - she was 22, I think. Normally she would have stayed with her GI through college (she had to take time off for surgeries/flares, so graduated college later than normal) but her pediatric GI was moving. So we switched to an adult GI, whom she loves. Her GI has NEVER suggested taking her off a biologic that was working.

For insurance reasons, she had to stop the biologic she was on for several months and we tried treating her IBD with just Imuran but it just caused a lot of infections and did not control the disease and her GI was the one who wanted to put her back on a biologic ASAP. She is on Cimzia, and her GI has mentioned reducing the dose if she was stable and in remission for a while, since she is on the maximum dose, but she wouldn't just stop it. And my daughter has mild to moderate Crohn's - no fistulas or strictures or surgeries.

Considering your daughter has fistulizing Crohn's and has needed a surgery, I would not want to stop her Remicade. Chances are, she'll flare and if you go back on Remicade, there's no guarantee it will work and she could have an allergic reaction.

Do you know how much your daughter weighs? Remicade is dose by mg/kg, so if she's 40 kg and on 400 mg, then she's on 10 mg/kg which is a high dose. You may be able to reduce it to 7.5 mg/kg but I would definitely not stop it...

 

[cassimw]

yikes
Reduce dosing sure to get to the lowest effective dose say if she was on10 mg/kg every 4 weeks
Slowly (very slowly ) space out to 5 mg/kg every 8 weeks (standard dosing )
But most don’t pull a biologic unless there is an adverse reaction or it stops working
Because a lot of times that’s it you can’t use it again in most folks
There are a few exceptions but …
Wow
Changing Gi or specialists is always hard
I know when we moved two years ago
Philosophy about scopes /meds etc was very different
Not wrong but different

I would get a second opinion since
It can’t hurt
Extra set of eyes always provides a fresh prospective
Not sure what Adult gi’s do

tagging @Maya142
@crohnsinct
@Tesscorm
Since their kids are older

Thanks for responding and thanks for tagging the others ;-)

 

[cassimw]

No. This is most definitely not standard of care. Not in pediatric practice or adult practice. There are numerous studies that show withdrawal of a therapy that is working will result in flare. I follow many adult GI's and attend case presentations every week and not one of them are ever in favor of discontinuing a therapy that is working. The risks are much too high.

Yes, they are in favor of trying to find the lowest dose of a drug that will keep the disease in remission but as MLP said, that is very different than withdrawing a therapy.

You are already switching docs, I would see if there is another doc that is more in line with how you would like to proceed or hear the doc out, perhaps they weren't explaining their strategy 100% correctly.

I am curious if you had the meeting today and what transpired.

If you need us to bombard their inbox with studies and articles that say don't stop therapy just say the word

lol! Can I just say how much comfort that last statement gave me? I was like: Hell yeah - I've got the Crohn's forum moms on my side! I've got back up! ;-)

 

[cassimw]

Update:

So here's what happened at the appointment. The doctor reviewed results of scopes/biopsies (all good) and said that since my daughter has been in remission for at least a couple of years, she recommends lowering the dosage and possibly getting off Remicade at some point (I'm unclear if she keeps suggesting this because she thinks that's what most people would consider their ultimate goal -to be off medication- or because she thinks that is a good idea from a medical standpoint, or some other rationale). My daughter is on 8mg every 8 weeks (I was told 400 mg by the infusion nurse - I wasn't sure how that translated, so sorry for any confusion with what I said in my first post) and the doc recommended lowering to 5mg (which she said is "standard" dosage). My daughter, being 20, pushed back right away - her mentality is of the "if it ain't broke, don't fix it" camp. She, of course, fears flaring or loss of the use of a medication that has worked well for her. But I wanted to hear the doctor out, so I asked a lot of questions. Her bottom line was that it makes sense to take less medication if the lower dosage works for you. I can appreciate this line of thinking, but, I explained our concerns. I asked if we could step down gradually (she wanted to drop from 8mg to 5mg all at once) - maybe try 7 for a while, then 6 - but she said she would just drop all at once. I also asked about testing levels more often - to see if the new dosage was keeping my daughter at therapeutic levels. This practice only does levels twice a year and they feel that levels between 5-10 are good (my daughter's last levels were 8.8 in January). Her next infusion is July 9th and the doc said we'd lower her dosage then and check her levels in January. What?! When I pushed back on that, she said that testing sooner wouldn't make much sense - it takes a while for the body to get use to a new dosage - or something along those line. I was ready for a fight! I thought this doctor was going to insist on lowering the dosage. I was ready to call in the troops (that's you guys!). But my daughter put her foot down and said she wasn't interested in making any changes and the doctor totally backed down. If you guys have further thoughts on this exchange, I'd love to hear them...

As an aside - I haven't posted to this group for quite a long time. My daughter was first diagnosed when she was a HS freshman back in 2015. I posted some back then, and some around the time she needed surgery the following year, but I haven't really been back much in the interim. At the same time, I was attending meetings of a local Crohn's & Colitis Foundation Parent Support Group in Fairfax and was eventually asked to co-facilitate the group, which I've been doing since 2017. I doubt I would have gotten involved if it hadn't been for the support this group gave me in the beginning and realizing and appreciating what a difference that made. Imagine my surprise and delight to post back to this forum after so much time and see responses from the same people that supported me in the beginning! @my little penguin @crohnsinct @pdx @Tesscorm @Maya142 - I don't actually know you guys, but I feel such a connection. You all have made such an impact. Thank you for all you do and all the support you give!

 

[crohnsinct]

Awwww! Look at you! You are all grown up! So proud of you for facilitating that group! Also super glad to hear you have a 20 year old and are still going to appointments with her....now I don't feel so bad as O is 21! I am personally of the opinion that anyone regardless of age, who has a chronic health condition should bring a second set of ears and another mouth...just in case.

So on to the reducing of Remicade and why you can't go slowly. It all has to do with vials. Remicade comes prepackaged in vials. I think it might be something like 100 mg per vial. So, depending on your weight, the drops have to coincide with the vials otherwise you will be way under dosing or overdosing....to illustrate and make my math easy. Let's say you weigh 100 pounds. That is 46kg. So if the dose is 400 mg's that translates to 8.7 mg/kg. If you are going to drop the next dosage is 300 mgs total so then you are getting 6.5....so for this patient 7 or 7.5 isn't really an option. I hope this makes sense. Some docs might go ahead and drop down to the 300 mg dose but then shorten the interval. This is one of the beauties of Remicade...the flexibility.

I am in your daughter's camp...if it ain't broke don't fix it. 8mg/kg every 8 weeks is really not a lot of medicine and I would feel totally comfortable keeping it that way.

 

[cassimw]

Awwww! Look at you! You are all grown up! So proud of you for facilitating that group! Also super glad to hear you have a 20 year old and are still going to appointments with her....now I don't feel so bad as O is 21! I am personally of the opinion that anyone regardless of age, who has a chronic health condition should bring a second set of ears and another mouth...just in case.

So on to the reducing of Remicade and why you can't go slowly. It all has to do with vials. Remicade comes prepackaged in vials. I think it might be something like 100 mg per vial. So, depending on your weight, the drops have to coincide with the vials otherwise you will be way under dosing or overdosing....to illustrate and make my math easy. Let's say you weigh 100 pounds. That is 46kg. So if the dose is 400 mg's that translates to 8.7 mg/kg. If you are going to drop the next dosage is 300 mgs total so then you are getting 6.5....so for this patient 7 or 7.5 isn't really an option. I hope this makes sense. Some docs might go ahead and drop down to the 300 mg dose but then shorten the interval. This is one of the beauties of Remicade...the flexibility.

I am in your daughter's camp...if it ain't broke don't fix it. 8mg/kg every 8 weeks is really not a lot of medicine and I would feel totally comfortable keeping it that way.

Ohhh! Thanks for breaking that down for me. That makes a lot of sense. Wish the doc would have explained it that way. That's the thing about this doc - I don't doubt that she knows a lot, she just isn't good at communicating her rationale for things. Be that as it may, I'm just glad she was flexible and let my daughter do what she thought was best and was comfortable with.

My mom had chronic health issues and my dad was her advocate, so I learned from watching them. I agree, it's always good to have another person "in the room where it happens" (sorry, couldn't resist a Hamilton quote ;-) As long as my daughter wants me there, I'll be there for her.

 

[Jo-mom]

You mentioned your daughters levels were at 8.8. That is a good enough level and am surprised that the doctor wants to lower the dosage. My son's level was at 28 and thus was the reason he was reduced from 10 mg/k to 5 m/k every 4 weeks. He just had his telephone app't with the GI and he will be having another levels test next infusion to determine if it should stay or spaced out further. His GI likes to see levels at about 10. Also, my son is 22 and only started navigating his own appointments, etc recently. I no longer am part of it but until he was 21, I also was part of the appointments. I too love this forum and it has helped me immensely. If it wasn't for this forum, I wouldn't have known to fight for the increase to 10 mg/k when it was needed a couple years ago. I felt like I was giving facts to the GI that he didn't even know because of you mothers who provided me with so much feedback and info!

Thanks moms.

 

[Maya142]

But my daughter put her foot down and said she wasn't interested in making any changes and the doctor totally backed down. If you guys have further thoughts on this exchange, I'd love to hear them...

I am so proud of your daughter!! She's taken charge of her healthcare and told a doctor what she preferred. I agree with her - if it's not broken, why fix it? I do also agree with you - if you were to lower the dose, I'd like to do it slowly. But I was also unaware of the vials thing @crohnsinct spoke of. At the hospital we went to, my daughter was first put on 6 mg/kg. She actually was around 100 lbs then, so 46 kg. So then she'd be getting 276 mg. I have no idea if they rounded up or down or if they wasted medication. We then went to 7.5 mg/kg, which put her at 345 mg. Again, no idea what they did. Finally went up to 10 mg/kg and again, no clue if she was given 500 mg or if 40 mg was wasted.

Also super glad to hear you have a 20 year old and are still going to appointments with her....now I don't feel so bad as O is 21! I am personally of the opinion that anyone regardless of age, who has a chronic health condition should bring a second set of ears and another mouth...just in case.

My younger daughter is 24 now and I still go with her to most appointments. Mostly because she is so complex and has so many conditions besides arthritis and Crohn's but also because I do think it helps to have a second set of ears...and another mouth . My daughter has become pretty responsible about managing everything herself, but occasionally, she plays things down and her GI knows to ask me lol. My older daughter is 27 and I don't go to her appointments unless there's something she is nervous about or if she asks me to go (which is very, very rare now). I trust her completely. BUT I do go to my husband's appointments whenever I can manage it because I don't trust him at all - he is the queen of playing things down!

Anyway,@cassimw I'm so glad things turned out ok and that your daughter is doing well! You should post her story in the Success Stories thread - new parents love to read success stories and she truly is one (as are you!).