Remicade Toxicity

[stefs3boys]

I'm 46 years old and I was diagnosed with Crohn's Disease in May of 2018. I have struggled to find a medication that my body doesn't have an adverse reaction to. While the insurance was declining the Remicade treatments, I tried Azathioprine and Mesalamine. I developed pancreatitis from the first and intense flu-like symptoms from the second. I had a 3-week flare up and ultimately was put on Prednisone (40 mg). They started tapering me off of the Prednisone, and I was put on Methotrexate and 3 weeks later was approved for my first infusion of Remicade. 10 days after my first Remicade infusion I started noticing I was having a difficult time getting a good deep breath. I chalked it up to too many new meds in my system, but didn't ignore it. I'm pretty in tune to my body and how it's feeling at this point...as I'm sure all of you are as well. After a few more days I wasn't better, I called my doctor and they suggested I go to the walk in clinic that is part of the same group my GI doc is in. Which I did. Chest X-Ray, EKG and blood work all came back normal.

I had my 2nd Remicade infusion 2 days later and by that afternoon I was really having a hard time catching my breath. Not just a deep breath, but out of breath walking to the bathroom kind of out of breath! I went back to the walk in clinic and they ordered a CT scan. That showed that my lungs are severely compromised. I saw a pulmonologist today and labeled it "Interstitial Lung Disease" and/or "Remicade Toxicity". He thinks it was possibly due to the combination of the Methotrexate and Remicade. I am now back on Prednisone (60mg) and will start low levels of oxygen at night and when I am expending energy to keep my oxygen saturations at 90 or above until the drug metabolizes out of my body...which is apparently a mystery as to how fast that happens. Hopefully soon because this not being able to breathe stuff is terrifying!

I'm curious to know if anyone has had a similar experience and if you've made a full recovery?

They want me to come in and get a new plan for treating the Crohn's but obviously I'm incredibly nervous to try anything after all of this! I know I'll need to but I'm still very hesitant.

 

[my little penguin]

Great big hugs
Ds had two allergic reactions to remicade at age 8
Crohns can affect the lungs unfortunately as well
One parent on here had a kiddo with Crohns in the lungs
Ds successful switch to humira for over 5 years
And now is on Stelara at almost 15

He was on mtx with humira and Stelara no issues

6-mp was at the start and made his liver numbers wonky
So despite a rocky first year
Once he switch to humira things improved a lot

Remicade is murine (mouse protein) and harder on the system than most
They should be able to get antibody testing as well as remicade levels from your blood work
That can tell you how high the level of remicade is in your blood
Might be helpful for switching

Humira is humanized protein less likely to cause an allergic reaction
Delayed reactions (up to two weeks after the infusion including trouble breathing are common with remicade )
Definitely get a second opinion on your lungs and GI
Fresh eye are always welcome by docs and can give a different perspective

Wishing you the best of luck

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3886002/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4558633/

 

[Tuff]

Welcome to the forum, I'm sorry you're having such a hard time. Prednisone is not something you can stay on long term, so eventually you'll have to try something else. I too have reacted to pretty much everything I've been on, but not right away. No lung problems though. The doctors just think I'm weird, heh. Currently Stelara and Methotrexate are keeping me in remission. You just have to keep trying to find a combination that works. Hang in there. :ghug: