Questions to ask when switching up to biologics

As the title suggests what I am looking for is in your experience what sort of questions should I ask the GI when switching up from Azathioprine class of drugs to the biologics?

I am in the process of formulating an email for the IBD nurse/GI before our next appointment on the 4th June. Thus far I have:

• Is there any advantage to Remicade over Humira and vice versa aside from their mode of delivery and scheduling.
• Are they better used as a monotherapy or as a combined therapy.
• If using as a combined therapy what is the preferred immunomodulator given Matt's lymphocyte count and the added risks given his age and sex. Does the fact that he has already been on Imuran mean that the higher risks remain now regardless of future treatments.
• How will his progress be monitored both clinically and for the efficacy of the drug used.

I have also listed Anti MAP therapy and EEN as topics for discussion.

Any input would be most welcome.

Thanks,
Dusty. xxx

http://www.ncbi.nlm.nih.gov/m/pubmed/25911120/

Crohnsinct posted it the study above

Basically your best shot at extended the life of remicade( assume humira as well would be ) Mtx plus bioloigics for boys.

Good luck
Both have their pros and cons in terms of humira vs remicade but I would ask the GI which he preferred and why .
Check for all immunization titers now
Tb test
If remicade where the infusions would take place /how many they do there and are they equipped ( have an larger ER) to handle reactions .
What pre treatment would be required for remicade ?
What pre treatment for humira?( DS takes antihistamine)
Any interactions with any other meds he might be on for any reason ?
Bloodwork - what will be monitored and how often ?
I will say each switch Mtx to remicade and remicade to humira was relatively simple - just getting it approved/setup was a pain.

Also how long does the GI expect it to take to see results and what would be the bridge therapy until biologics take over ??

Hey Dusty. Sorry that the results weren't better. I think MLP covered it but here is another article I posted on the same thread. It addresses monitoring trough levels in an effort to keep antibodies at bay etc.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4416970/

Seems the GI's like the anti tnfs equally theses days and it comes down to what you are most comfortable with. We only have experience with Remicade and I think there is more experience in the field with Remicade so maybe the GI's are a little more comfortable with that?

We like the convenience of once every so many weeks and the compliance (no forgetting a dose etc). Also getting bloodwork at the same time. However, with Matt in school etc scheduling could become an issue if the infusion center is far away or open limited hours etc.

Good Luck with your decision!

I don't have much to add to the above other than scheduling issues...

- S's GI preferred remicade because there would be no question as to compliance - no questions re missed or delayed infusion/injection, no question re dosage, etc.

- While not a huge problem, scheduling has been an issue at times. Vacations, etc must be planned around infusion schedules (and, as Murphy's Law would have it - infusion is often smack dab in the middle of a planned vacation! :ymad, tricky with exam/assignment schedules, work, etc. (especially when you have to add in GI apptmts, testing, etc. into the mix). What has helped quite a bit is that S has access to multiple infusion centres (near home or school). His main centre is near home but, when necessary, I've switched his infusions to the centre near school. Schedule-wise, Humira would be easier. But, do check if Matt would have access to more than one infusion facility.

- Still related to scheduling - ask GI how he feels about 'adjustments' to the schedule. A couple of times, I have moved S's infusion up by one week to accommodate a scheduling conflict. S's GI is fine with moving up by a week but prefers not moving out more than 2-3 days. Not sure if this is an issue with insurance - when I've done it, I simply changed the apptmt directly with the infusion centre but, during a recent conversation with GI's nurse, she asked if I hadn't gotten pre-approval from insurance?!?!? (Had never crossed my mind! :lol

- Does infusion centre offer Saturday appointments?

I know it seems a lot of focus on scheduling when the prime concern should be getting inflammation under control but... once inflammation is under control, the scheduling will impact Matt's life for a long time - if possible, do have him really consider what would work best for him. S did not put much thought into this and, if given the choice now, I wouldn't be surprised if he'd choose humira now.

- When can serum trough levels be tested? Will insurance cover it? S was tested the day before his first '8 week' infusion (ie first infusion after 3 loading doses) - results showed no remicade. He was moved to six weeks and was tested again the day before his first 'six week' infusion - which showed adequate levels. He hasn't been tested since but his GI mentioned that he will likely test again soon. Insurance or cost has never been brought up - I believe this is because S is registered in a remicade study. If cost/insurance would be a problem, perhaps ask if there is a study in which Matt can register in which the test would be covered

- If Matt prefers Humira - ask about adding lidocaine. Adult or not, no one likes a painful shot!

Also.... I believe Matt had fistulizing crohns?? If yes, how does this impact the decision between humira and remicade?

:ghug:

To follow up on Tesscorms and adjusting dosage schedule,
Do they adjust based on tested levels or symptoms and dose he up dosage or shorten time frame or both.
Jack's GI has talked about the quick infusion but wants him on remicade for another year. So basically infusion lasts an hour. Jack is liking the idea so he is in and out for infusions.
Hope whichever he chooses gets him quickly back to remission and for a long time.

Oh and I think there may be a lot more flexibility with Remicade dosing than Humira...ie: m=changes to schedule and/or dose until you hit on the magical combo. I think this is more of an issue with the kids as their weight changes but would probably be an advantage for an adult as well.

Here's another article about combined therapy:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4219491/

If he wants to do MTX with a biologic, I would ask what the plan is to deal with MTX side effects - folic acid dose, Zofran etc. Most kids are just fine but unfortunately, some, like my daughter have really extreme reactions.

My kids preferred Remicade, but that said, my older daughter (who is in college) says it is very convenient to do injections. There's some leeway with Humira (increase to every 10 days, or increase to weekly shots) but there's way more with Remicade. There are studies that are happening right now about higher Humira dosages being used for Crohn's (such as 80mg every week).

If he does do Humira, I would also ask if he would do the loading dose. The first time my daughter was on Humira, we did not do the loading dose and it took forever to kick in (5 months AFTER moving to weekly shots and adding MTX). The second time we did do it and it was MUCH faster - 8 weeks or so (but we also started out with weekly shots that time because we knew she'd need them).

Good luck - really hope whatever you choose works FAST!

No idea on the biologics. Really hope whichever one he chooses works great.

Thanks so much for all the help and the fab suggestions and links.

See, why would you go anywhere else for advice? The Brains Trust (AKA The Table of Knowledge) never fails to come up with the goods! :ybiggrin:

Won’t the GI and IBD nurse be so happy when they receive my email! :lol:

Dusty. xxx

LMAO! You could just forward a link to this thread! :eek2: Make sure they're aware there's a committee to appease! :emot-nyd:

But, lots of wishes that Matt's GI is able to offer a treatment plan that satisfies Matt (and you) and helps him heal quickly! :ghug:

Damn it, I should have read your post first Tess! Would have saved me a shitload of time. :lol:

As it is…22 questions. Not too bad, ay? :ylol:

Dusty. xxx

I just realized our Surgery & Stoma appointment is the same day as your biologics appointment. I am hoping June 4 is a good day for us all.

I did the questions email for our last appointment (sorry, only 8, you blew me away! ha ha ha) and was disappointed the nurse & doc did not have the questions with them for the appointment (though read them & acknowledged them). Luckily I brought extra copies... Might want to make a few copies of your own. ;-)

SM - someone here once mentioned that they take two copies - one for themselves and one for the GI to have on hand at the apptmt. Since reading that idea, I've always done that. With even just a quick skim, gives the GI an idea of where your concerns lie.

Dusty - 22?!? No quick skim there! But, never mind, it's your son's health that's being decided upon! Any and all questions should be discussed before making any decision. And, those of us who've been here a while, know the questions do lessen over time... Now that it was routine for S and his GI to ask 'Do YOU have any questions?', last appointment, I had not a single one! :thumright:

Well not one you could ask out loud with your son in the room anyway:shifty-t:

:lol: But, ugh... you're right!! One of those adjustments when your child becomes an adult... no more private conversations with the GI.

I bring two copies
One color coded med sheet /conditions/past meds
One summary/symptoms /questions
To all specialist visits and code them by month /specialist

Not a major issue in Australia but cost. Remicade would be cheaper believe.

Saw your link to this thread Tess and thought I would update with the questions I did send just as a reference:

• Firstly, what are your thoughts on Anti MAP therapy and EEN?
  
• The most recent metabolite results show a significant decrease in his numbers. Although they remain at acceptable levels do you have any ideas as to why this would be?
  
• In relation to Matt's situation and biologics:
  
• Is there any advantage to Remicade over Humira and vice versa aside from their mode of delivery and scheduling? Do either of you have a preference and why?
  
• Does having had a history of ileal fistula’s make a difference in the choice of biologic?
  
• Are they able to do Remicade infusions at the local Hospital?
  
• How is the Remicade dose calculated, weight or other parametres?
  
• How long do the infusions take?
  
• Are you able to drive after the infusion?
  
• Do you get a choice in how the Humira is presented, pen or syringe?
  
• If syringe is an option can Lignocaine be added to decrease the painful effects of the injection?
  
• Does either biologic require a pre treatment and if so what would it normally be?
  
• Do they both require loading doses and if so what is the schedule?
  
• When would you expect to see improvement?
  
• How will his progress be monitored both clinically and for the efficacy of the drug used and how often?
  
• If there is little or no improvement in a specified time period does the government allow room for movement in changing doses or moving up schedules for either drug?
  
• How critical is it that either drug is given the day it is scheduled?
  
• What would we be looking for in regards to reactions and side effects?
  
• If he also continues with his current medication regimen are there any potential interactions?
  
• Are biologics better used as a monotherapy or as a combined therapy?
  
• If using as a combined therapy what is the preferred immunomodulator given Matt's lymphocyte count and the added risks due his age and sex?
  
• If Imuran is dropped and Methotrexate added would it be as a tablet or injection?
  
• Does the fact that he has already been on Imuran mean that the more serious side effects of this drug remain regardless of future treatments?

Dusty.

Thanks Dusty! Great reference!

Hope Matt is doing okay!

Wow great info! Thanks Dusty! Hope all is going well your way!