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Remicade and Histoplasmosis

Has anyone ever contracted histoplasmosis when using Remicade or any other TNF blocker drug? I was on Remicade for just a couple of months and got very sick. I spent 9 days in the hospital with histo in the lung and liver. 19 days straight with 100 plus fever. Extremely slow recovery time even months afterwards. Just wondering if anyone else had this experience.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Thankfully no, from my research it is common in the Ohio River Valley area - but can be found pretty much all around the US.....

Are you around birds, caves (bat droppings) or anything like that? The article I found says chicken droppings can contain the fungus...oh joy! and I was going to get chickens this summer!
 
I'm not really around birds. I duck hunt, but that's only in December and January. From what I have learned, there are different strains of it throughout the US. What I had was the Ohio River Valley Fever (histo). I live in Memphis right on the Mississippi River and from what my ID doctor told me, everyone who lives in this part of the country has the spores inside them. However, when my immune system was suppressed on Remicade, it couldn't fight the spores adequately, therefore the symptoms surfaced (fever, coughing). I'm just curious if anyone else has had the same experience.
 
I havent really got sick since starting remicade. I get the odd cold, but I get over just as fast as the rest of my family.

I am sorry you had to go through that.
 
Oof that's awful! Is it a known side effect of Remicade? If not you might want to report your experience to the FDA?

I hope you're feeling better now.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
It isn't really a side effect - just you are more susceptable to the disease.....and it is listed right on the Remicade website/warnings.....

I haven't heard of anyone getting it - and thankfully I haven't been really ill this year (watch me jinx myself!).....strep 2x last spring, nothing really since then....
 
It isn't really a side effect - just you are more susceptable to the disease.....and it is listed right on the Remicade website/warnings.....

I haven't heard of anyone getting it - and thankfully I haven't been really ill this year (watch me jinx myself!).....strep 2x last spring, nothing really since then....
Oh, well obviously the disease itself would not be a side effect of the medication, but being more susceptible to it surely would be? That's what I meant.

I knew "certain fungal infections" were associated with TNF blockers, just wasn't sure if this was one of 'em.
 
I just spent 14 days in the hospital with disseminated histoplasomosis in my abdominal region. 18 months ago I spent 32 days in the hospital with MRSA pneumonia. All related to remicade and a suppressed immune system. I have been told by many doctors to stop remicade as histoplasmosis is not that common in Texas. My ID doctor now has me taking Amphotericin B at home for seven more days then switching to Itraconazole for up to sixth months. I was never informed by my RA doctor regarding this type of fungal infection. I was only told and tested for TB. Remicade is an outstanding drug but I can't continue to pay the price with these infections.
 
My husband was on Remicade for 10 years. Then he started having undiagnosed intestinal blockages. Doctor after doctor looked at the tests said if if wasn't cancer, they couldn't fathom what it was. Only it didn't test for cancer.

It was histoplasmosis. Multiple surgeries. By the grace of God and good medical care, he returned to work and we hope a more normal life.

Its been over a decade since he was near the Ohio River Valley. Our vet did say he had one cat never out of the San Gabriel Valley who once had it.
 
Not sure if anyone is still posting on this thread, but I went through this the Fall 2013. Have had Crohn's for 30 years and been using Remicade for 15 years since it first came out. Worked very well for me and I never had until this past Summer. Deteriorated very fast and it stopped working for Crohn's. Went in for small bowel surgery and they found the histo. Almost died. Found it in my intestines and liver (at least). Being treated for it now still and off the Remicade. Not having any issues with Crohn's since surgery, but experiencing debilitating joint and muscle pain. Also extreme shortness of breath (can't walk up a flight of stairs in my home without being winded). I was running ten miles daily just 2 weeks prior to surgery so not convinced it is tied to histo. Wonder if other have had this problem when they have stopped Remicade after long term use. Also, I live in Indy (ground zero I guess for histo).
 
This is something that worries me. I live in Costa Rica and we have bats EVERYWHERE. In fact, we had to hang Christmas lights around our house to keep them from roosting in the eaves of our roof. I don't plan on spelunking into any jungle caves any time soon but just having the bats and knowing all the funky issues their guano carries freaks me the heck out. I've been on Remicade since Sept 2011 and have never had an increase in colds or infections. I hope to keep up the good track record. I'm glad that this topic was raised because it reminds me that I need to speak with my Gastro doc about this. It's hard to find a bunch of info on Histoplasmosis down here.
 
I was just told I have histoplasmosis and that is why they wont let me go on Humira. I have no idea how I got it, other than having a suppressed immune system. I'm in Missouri, my GI said it was pretty common for someone with my issues. JOY. Hope you're doing okay!
 
Has anyone ever contracted histoplasmosis when using Remicade or any other TNF blocker drug? I was on Remicade for just a couple of months and got very sick. I spent 9 days in the hospital with histo in the lung and liver. 19 days straight with 100 plus fever. Extremely slow recovery time even months afterwards. Just wondering if anyone else had this experience.
Hello I know this was forever ago, but I was just told I have histoplasmosis and am on remicade. I also was diagnosed with mono. My immune system is pretty much worthless right now. And my doc told me that I might not be able to continue remicade treatment which I don't really care at this point I'm just concerned about what the effects of histoplasmosis will be. Because I was told I have to see a infectious disease doctor. Scary.
 
Hello I know this was forever ago, but I was just told I have histoplasmosis and am on remicade. I also was diagnosed with mono. My immune system is pretty much worthless right now. And my doc told me that I might not be able to continue remicade treatment which I don't really care at this point I'm just concerned about what the effects of histoplasmosis will be. Because I was told I have to see a infectious disease doctor. Scary.
Hi Shan,
I was diagnosed similarly to you in April 2017. I’ve continued remicade and itraconozole treatment for over a year now and still have histo and crohn’s symptoms. Have you reached a solution and/or are histoplasmosis free? If so, what was it?
 
Hi Shan,
I was diagnosed similarly to you in April 2017. I’ve continued remicade and itraconozole treatment for over a year now and still have histo and crohn’s symptoms. Have you reached a solution and/or are histoplasmosis free? If so, what was it?
Hi kris! I have been histo free for months now and have no lasting ill effects from it. It had spread to my liver andmy doc was very concerned. He wanted to admit me to the hospital and administer a heavy infusion type med for the histo and then follow up with me taking an drink medicine at home for months. Long story short I freaked out because I did not want to be admitted and have to get another picc line for this heavy drug. So against my doctors wishes I went home and just took the medicine that I drank. It was called sporadox and I took it for six months. I also stopped taking remicade completely and have been off of it for over a year. It never really worked all the way for me so it wasn’t worth the side effects. Now I am histo free and doing the Specific Carbohydrate Diet and takin Low Dose Naltexone each night for my Crohn’s. I go to a naturopath as well as my regular GI. I have pretty severe Crohn’s so I still am having troubles every once in a while when I ate something I can’t tolerate but I really think everyone should looked into scd and ldn! I don’t know if what I did will work for others but it’s worth thinking about. I really hope your issues get better. It’s not fair that Crohn’s meds increase your risk of getting other diseases UGH
 
Hi kris! I have been histo free for months now and have no lasting ill effects from it. It had spread to my liver andmy doc was very concerned. He wanted to admit me to the hospital and administer a heavy infusion type med for the histo and then follow up with me taking an drink medicine at home for months. Long story short I freaked out because I did not want to be admitted and have to get another picc line for this heavy drug. So against my doctors wishes I went home and just took the medicine that I drank. It was called sporadox and I took it for six months. I also stopped taking remicade completely and have been off of it for over a year. It never really worked all the way for me so it wasn’t worth the side effects. Now I am histo free and doing the Specific Carbohydrate Diet and takin Low Dose Naltexone each night for my Crohn’s. I go to a naturopath as well as my regular GI. I have pretty severe Crohn’s so I still am having troubles every once in a while when I ate something I can’t tolerate but I really think everyone should looked into scd and ldn! I don’t know if what I did will work for others but it’s worth thinking about. I really hope your issues get better. It’s not fair that Crohn’s meds increase your risk of getting other diseases UGH
That’s interesting to hear! I was already admitted into the hospital when they diagnosed me with histo, and they gave me the IV med for 5 days through a normal port, then sent me home on sporanox. So glad I didn’t get the picc line for that, haha.
Unfortunately we didn’t know at the time that I had Crohn’s in my stomach as well as the preexisting ileocolitis. The acidic environment the sporonox needed had my doctors asking me to drink something with citric acid at every dose, and the easiest source was lemonade. Bad choice, because at my next scope, I had six stomach ulcers!
They’ve switched me to a pill called itraconozole since, which I’m told is less effective but since I had just been vomiting up the sporanox, it was our next best option. Back in May I had almost gotten both histo cleared and Crohn’s symptoms nonexistant, but then I contracted C.diff TWICE in the same month, and now I’m back to square one. (Explosive diarrhea, sleeping most of the day and night, histo levels spiked from 0 to 11 in two weeks.)

My doctor is hesitant to stop remicade because as it is I’m at the maximum reccomended dose at 10mL/kg every four weeks, and when I’m not on an immunosuppressant my body just rejects anything I put in my system and I hit rock bottom fast. 150mg of azathioprene plus remicade is what got me here in the first place, so I’d rather stay with the biologics than go back to azathioprene if I can help it.

Since it’s been a good three years since my ileocolitis first presented itself, when I see my GI for my next infusion on Tuesday I’m going to try to start discussing other possible options, if there are any.

I’m glad to hear that you’ve gotten your symptoms mostly under control, and that you cleared the histo so quickly!! Truly. I’m glad not everyone’s had as wild of a ride as I’ve had for this.
 
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