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Remicade to Inflectra

Our Insurance will no longer cover Remicade...if you’ve made the switch, any issues? I suppose we don’t have a choice so just hoping and praying it will work well!
 

Tesscorm

Moderator
Staff member
You may want to ask the same question in the treatment/remicade subforum as well. When the biosimilars were first introduced, I asked about this in the treatment section and I think some members responded. I think there were a mix of positive and negative experiences.
 
You may want to ask the same question in the treatment/remicade subforum as well. When the biosimilars were first introduced, I asked about this in the treatment section and I think some members responded. I think there were a mix of positive and negative experiences.
Tess, has you child been in remission since 2013 with Remicade? 8 year run is pretty amazing.
 
My daughter was switched to Inflectra a year ago when she turned 18. I don't know if it's made a difference. Over the past 18 months, my daughter's health has slipped a little. I wouldn't say she's in a flare, but her calprotectin has been slowly rising and her iron and zinc levels have been low for the past few months. BUT this slide started before the switch to Inflectra, and there definitely wasn't a big change right after the switch. So I lean towards thinking that there hasn't been a difference--good or bad--with Inflectra.

I don't know if you use co-pay assistance, but Janssen's Inflectra program has been really easy to use. The online application questions didn't seem to quite fit our Kaiser insurance, so I called their helpline and they e-mailed me a form meant specifically for Kaiser patients that made everything really easy.
 
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Maya142

Moderator
Staff member
@Jbungie, my daughter has a friend who has been on Remicade for almost 10 years now and was in medicated remission a few months after starting Remicade. She says she doesn't even remember she has Crohn's most of the time - the only reminder is infusions every 8 weeks, no symptoms at all. It truly can happen - we have several members on this board whose kids have been on Remicade for years without issues!
 

crohnsinct

Well-known member
You can add my younger daughter T to the long term Remicade users. She was dx'd 7 years ago. Been on Remicade for about 6 and no flare, Tiny little hiccups here and there but nothing a little dose or interval adjustment won't fix.

@KTas our GI says that his patients who are forced to switch in general do fine with the switch. He was even thinking about switching my younger daughter because insurance would longer cover Remicade every 5 weeks and 8 weeks causes issues. So they thinking is if we move to a cheaper med maybe they would approve more frequent dosing. Although I hear the price difference isn't that much.
 

Tesscorm

Moderator
Staff member
@Jbungie, yes, my son has been in remission since starting remicade. He also barely notices he has crohns other than his infusions. But, he has had a number of infections that may or may not be due to remicade. None have been very serious but they have been worrying and bothersome. His GI once brought up the idea of switching to a less systemic biologic but it was just 'something to consider' if infections continued. As remicade is controlling his crohns, my son does not want to take that step yet.
 
@Jbungie, yes, my son has been in remission since starting remicade. He also barely notices he has crohns other than his infusions. But, he has had a number of infections that may or may not be due to remicade. None have been very serious but they have been worrying and bothersome. His GI once brought up the idea of switching to a less systemic biologic but it was just 'something to consider' if infections continued. As remicade is controlling his crohns, my son does not want to take that step yet.
Thank You! How often would you say he would get infections? This is very helpful, its good to hear the long term successes.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Thank You! How often would you say he would get infections? This is very helpful, its good to hear the long term successes.
I've gotten infections now and again, had strep a few times over the years, when I had my elbow surgery 2 months ago the incision looked like it was getting infected (turned red/swollen/warm) - BUT I used some antibiotic cream and that cleared up within a day....I'm actually one of the healthier ones usually at home - haven't had the Flu, didn't catch Covid. I do have some annoying skin stuff going on, but handling that is small compared to fistulizing Crohns'!
 

Tesscorm

Moderator
Staff member
He probably averages weird and often unexplained infections or pains once or twice a year??

- While he was living away at university, he had bronchitis and/or strep once or twice a year. But that may have been more a result of not taking care of himself, of being around lots of people, etc. plus remicade??

- He's had odd rashes that usually clear up before he even gets a diagnosis and without treatment. At one point, he did get a dx of molluscum contagiosum https://en.wikipedia.org/wiki/Molluscum_contagiosum_virus, which I believe cleared up on its own.

- He's had eye infections, again, have cleared up before we were even able to get a dx and without treatment.

- At one point, he may have had adenovirus... again, although he did tests, we didn't ever receive a definitive dx.

- Couple of instances of epididymitis

- Possibly costochondritis once, lots of tests over weeks/months, never any clear answer and the pain eventually went away.

There have probably been a couple more. The issues have lasted from a few days to a few weeks or more. Sometimes he's been given antibiotics, I think once an antiviral but most often no treatment as we often had no dx.

He's had two surgeries due to injuries, unrelated to crohns and has had no issues at all with recovery.

Currently, he's been having right flank pain over the past 5 mos?? He's done a number of tests, nothing is showing up... just had upper/lower scopes, they found esophagitis (prescribed PPI) but no crohns activity (we are waiting for biopsies tho) and he has a CT scheduled for tomorrow.

These issues do frustrate my son and worry me each time but none have been serious. And, having been given the choice of switching meds, the frustration of the infections was obviously of less importance to my son than the risk of triggering a flare by switching meds.
 
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Maya142

Moderator
Staff member
My kiddo was on an experimental dose of Remicade ("high dose Remicade") due to her severe arthritis. She was given 15 mg/kg and then we went up 20 mg/kg every 4 weeks (sometimes every 3.5 weeks). I was VERY worried about infections at that dose, but she was absolutely fine.
 
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