Has anyone checked into Churg's Strauss Syndrome?

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debimum
Veteran Member


Date Joined Feb 2006
Total Posts : 712
   Posted 3/26/2006 9:48 PM (GMT -6)   
Hello,  I have been on the lupus site, but after hearing about Churg's Strauss Syndrome related to asthma and allergies, I thought I should ask on here if anyone has that?  With what I read about it the symptoms are so much like mine.   I have had adult asthma for 19 years, have chronic sinus infection and have gastro problems and esophogus problems.  Some of you may want to read up on that and check with your doctor.  I am in the process of having my allergy/asthma doctor read up on this and check my blood reports.  It would be the esinophil cells that would be elevated. Some of the symptoms are: fever, weight loss, sinus or nasal passage inflammation in the patient with asthma. Fatigue is common.  Sometimes the asthma actually improves somewaht as the diesease intesifies elsewhere. Cough shortness of breath, and chest pain can occur as the lung are affected by vasculitis. Skin lumps are call nodules, can appear on the extremitites. Diarrhea and pain in the belly occur with blood vessle inflammation within the abdomen.  The bladder and prostate gland ca become inflamed. Nubness or weakness of extremeities is the result of nerve injury from the vasculitits. 
    I know this struck my interest with  my history of sinus and asthma problems.
 
Deb
Not been diagnosed as of yet.  Have a positive ANA. plaquenil 200 mg 2x aday.  Lexapro. Pain reliever. sublingual B-12 , Chronic sinus infections.  Asthma.
 
 


Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 4/3/2006 6:14 PM (GMT -6)   
FYI Deb- the eosinophils are elevated with allergies which go hand in hand with asthma, so don't base your diagnosis on just the eosinophils.

Cathy

debimum
Veteran Member


Date Joined Feb 2006
Total Posts : 712
   Posted 4/3/2006 6:27 PM (GMT -6)   

Cathy,

   I don't have a diagnosis of Chrugs Strauss yet. I sent the info to my family doc and the allergy/asthma doc.  I am waiting to hear back from them.   My family doctor talked me into seeing one of the other rheumys in the practice I am going to.  He found out the one he suggested isn't as concerned about people as what he thought he was. He urged me to change my appt. to see the woman.  I sent the info to the doctors so they both had it.  I am trying to get them to confirm together along with the rheumy.  I do have most all the symptoms of Churgs strauss. The family doctor before seeing the info, thought I could have scleroderma or lupus.  But with the nodules under the skin multiplying, it's one of the symptoms.  And we have no other explaination for them.  As for the muscle weakness and fatigue they could be the other diseases. 

   I have no diagnosis of any kind yet.  I am seeking a diagnosis, I know that's not always possible, and maybe it would be years.  I am taking generic plaquenil for about 1 1/2 months now.  I feel a bit worse then I did before.  

I was just trying to find someone who may have churgs strauss syndrome to see what they are going through.


Not been diagnosed as of yet.  Have a positive ANA. plaquenil 200 mg 2x aday.  Lexapro. Pain reliever. sublingual B-12 , Chronic sinus infections.  Asthma.
 
 


ramblingseminarian
New Member


Date Joined Feb 2008
Total Posts : 1
   Posted 2/24/2008 9:49 PM (GMT -6)   
Not sure if this person has figured out their diagnosis yet...but just wanted to say that I have Churg-Strauss Syndrome.

EvawithCSS
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/6/2012 12:55 AM (GMT -6)   
I have recently been diagnosed with CSS
It took 20 years!
It started with severe allergies, poorly controlled Late onset Asthma, Chronic sinus infection( not relieved with 12 surgeries ), and GI problems. For over 20 years, I suffered with all of the above! I been accused of not taking my Meds, even though I gained a ton from prednesone. I coded a few times with no explanation, so I have been accused of taking something to cause it. Almost every ENT accused me endlessly of using cocain or something up my nose when I have never touched the stuff!!! I couldn't snort anything through my nose bc I can't even get air in it!
Recently, what lead to diagnosis, I have been experiencing global body aches, chills, fever, sweats, purple skin bumps on my elbow with inflammation , somewhat looking like MRSA or spider bite, syncopy...
For a little while, my lungs were actually doing better until my last hospitalization. I was experiencing chest pain, coughing up blood, high blood pressure and was admitted ( for the millionth time- I live in hospitals ) My lung x-rays showed small leisions back in 2007 and I was diagnosed with Bronchiectasis. This tine, My x rays showed large masses of leisions bilaterally! I had a lung biopsy and blood tests. High number , over 500 eosinaphils and lung tissue showed same. I was finally diagnosed and Rhematoid doctors were brought in. I just started chemotherapy drugs and still Ferlinghetti like crap every day! Fatigue, body aches, pressure in chest and GI upset. I couldn't start chemotherapy right away bc as a complication from being on antibiotics and steroids for 20 years, I had 3 active strains of MRSA in my lungs that required strong antibiotic treatment with a pic line before I could start surprising my immune system with chemotherapy . I have been sick for 20 years with no answers and at least now they know what I have. I will no longer be accused of crap I don't do and I hope for remission.
good luck with diagnosis and treatment!

EvawithCSS
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/6/2012 12:58 AM (GMT -6)   
Sucks to be sick! Worse when nobody has an answer!
Typo above- I still feel like crap everyday
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