Crohns, Remicade and Histoplasmosis

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amybeth
New Member


Date Joined Sep 2007
Total Posts : 3
   Posted 9/2/2008 3:40 AM (GMT -7)   
I have Crohns disease and am on Remicade treatment and recently been exposed to (sorry this may sound gross) the spores in bat feces that cause the disease histoplasmosis.  Just to explain I work at an old courthouse in a small county that has had bat's in it for years and recently an employee has gotten sick with this disease and another is currently being tested.   I have Remicade today and my doctor wants me tested also.   Histoplasmosis attackes people with immunosuppressed systems and anyone that is on Remicade knows how it weakens your system.  SO HELP ~ if anyone has this, can you give me some info.
 
Thanks,
Amy Beth

Keep The Faith
Amy


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/2/2008 8:47 AM (GMT -7)   
Never heard of it, sorry I couldn't be of more help. Hope they get it figured out for you soon. Good luck! Oh and welcome to Healingwell, lots of great folks here.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/2/2008 9:58 AM (GMT -7)   
Yes, you need to get tested! My gi does a yearly urine histo (which is the most sensitive). This June I tested positive. I had no idea where in the world I would have gotten it. But when I went to the infectious disease dr., he asked me if I had been to Indianapolis. And yes, I had. It was really bizarre, I guess the Ohio River valley has a higher rate of it. It can be from any bird droppings. These droppings then need to mix with soil, and you inhale the spores.

Anyway, I never did have any symptoms from it. I was able to fight it off. I did have to postpone one remicade for a coupe of weeks because of it. I have had about 4 tests this summer, and finally my last one was negative, but I still have to be tested for the next yr. every time before they will let me get my remicade. It takes a good week to get the test back. Make sure that if you have any pneumonia like symptoms that you call your dr. immediately.

My opinion is that anybody on remicade should be getting a yearly urine histoplasmosis done.

MaggieLou
Regular Member


Date Joined Apr 2008
Total Posts : 31
   Posted 9/2/2008 12:25 PM (GMT -7)   
You definitely need to be tested.  Before I had my first Remicade treatment, I had to have a TB test and a chest sxray.  My chest xray showed a lung nodule.  After the xray, I was refereed to a lung specialist.  He refered me for a CT Scan of my lung and it indicated that I had previously had histoplasmosishs, probably as a child.  I was negative for any active disease.  I had to have several more CT scans to ensure the lung nodule was not changing after I started my Remicade.   
 
I had to stop the Remicade due to reactions of high blood pressure, hives, breathing problems.  I am currenly taking Humira injections and an doing well with Crohn's Disease.  However, my joint pain nd fibromyalgia is horrible.
 
Hope everything works out for you. 
 
Susie
 

amybeth
New Member


Date Joined Sep 2007
Total Posts : 3
   Posted 9/4/2008 9:28 PM (GMT -7)   

Thanks to all that replayed, my doctor called and the test was negative smilewinkgrin however, I can't be in the building still while the clean up is taking place, which could take up to two weeks and i'm all out of sick leave so that stinks.  I guess God is trying me, but just letting me have a little vacation at the same time.

 

 


Keep The Faith
Amy


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/5/2008 8:03 AM (GMT -7)   
That's great news! But to be on the safe side, if it was me I would ask to be tested again before my next remicade....just to be sure. What test did they do?

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/5/2008 12:25 PM (GMT -7)   
see the news story i just posted, get the antifungal treatments you need now, and see if you might need to get off some of your meds....
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/5/2008 12:26 PM (GMT -7)   
oops....i saw that you already got a negative test result, just stay vigilant...and enjoy the time off work, if you can afford it...
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


orlando
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/6/2008 9:31 PM (GMT -7)   
Hi - I am new to this site.  I have Crohn's and I just saw the article in the news about the risks on Remicade and fungal.  I have all of the systoms listed and I have never heard heard of this.  Can someone please enlighten me as to what kind of test I need to ask my doc to give me?  My next infusion will be my 97th....  I'm a little worried to say the least... Thanks:-)

JenC
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/8/2008 7:25 AM (GMT -7)   
Hello all...I am new to this site as well but I recently had the Histoplasmosis infection and was hospitalized for a week in July. I have not been able to get my Remicade since this all started and I am having a real rough time with that. I am experiencing debilitating joint and muscle pain as a result and I am now faced with the decision of whether or not to go back on the Remicade. I don't want to have to depend on this for the rest of my life but if this is the type of pain that I will be in then I know I can't handle that either. Have any of you had this experience. I am looking to find others that have had similar experiences after stopping Remicade. The Histoplasmosis is better so I would really like to go back to normal but I am scared to go back on the Remicade. I actually live in Indianapolis and was not told about Histo until after I got sick. I have been on the Remicade for four years now. Any advice would be appreciated. Thanks! Jen
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