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Shortness of Breath on Remicade

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Posted Today 8:19 PM (GMT 0)

I have been on remicade for many years with great results. about a year ago, I started noticing a shortness of breath that lasted for a few days. The shortness of breath continued, getting more pronounced and lasting for a period of about 10 to 14 days. I became very concerned. My rheumatologist did not have any known ties to my medication and suggested I seek othe medical advice. Long story short, I have had a lung function test, an echo-cartiogram and a CT scan, all indicating no issues. I started logging my shortness of breath and established that it generally began about 2 weeks after my infusions, last 10 to 14 days, then ease away. I am concerned that the remicade is causing my problem. Any feedback, information of suggestions would be appreciated.

Posted 12/3/2011 12:45 PM (GMT 0)
I read your posting with interest. I too have been on remicade for about nine years now. You're probably familiar with the warnings about certain fungal infections -- histoplasmosis among others which is found in soil. They tend to infect the lungs. I live in the Ohio River Valley area which is where some of these fungi are more prevalent.

I don't have shortness of breadth but but get other symptoms that are not reported in the literature or known by the rheumatologists. For me it's outbreaks of herpes simplex -- cold sores within a week of the infusion.

Thanks for sharing your story. Good luck and I hope that it's just coincidence.
Posted 12/5/2011 2:37 AM (GMT 0)
My reaction started the second time I received remicade. Exactly one week post infusion, I became short of breath. With each infusion and each dose increase, the shortness of breath was progressive as well. I ultimately had an anaphylactic reaction, even after being pre-medicated with benedryl, solumedrol and Tylenol. Although my reactions started at the beginning, an allergy can happen at anytime to anything, regardless of how long you have been on it. I switched to Orencia, which helped my joints much more, and no shortness of breath, and is now available in home injectable form. Best wishes.
Posted 12/5/2011 4:46 AM (GMT 0)
Get an appointment with your Rheumy doctor, show him your log book and
then talk about a different medicine...each time you use this medicine you risks
getting or going into anaphylactic shock which you do not want...sounds
like a reaction and you need to try a different medicine, get your doctor
to listen to you...many well wishes, if your doctor won't take these concerns to heart
then you need another doctor...keep us posted we do care....
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