Churg-Strauss??

04-20-2014, 01:34 PM

Hi,

Quite frankly, I am at wits end and not really sure if I am even posting on the correct board. For a year now I have been battling what I THOUGHT was sinus problems. (I should tell you that I am in the medical field and aware of what is going on with my body usually). You can probably see a couple of my older posts back when I was going to an ENT (quack-a-doodle) and pulmonologist who is my PCP. All the ENT ever wanted to do was stick a nasal scope up my nose and charge the 460.00. I should also add that last year everything was out-of-pocket for me as I did not have insurance until January of this year.

I had 4 nasal scope done by Quack-a doodle ENT, so I begged my PCP to send me for a CT of the sinuses. He did and it came back pansinusitis, all sinuses totally jammed up. I also ended up in the hospital right before that for 3 days because I had trouble breathing with asthma-like symptoms. After the CT scan I was put on 6 weeks of Augmentin (rough stuff) and 30 days of 10 mg prednisone and then went back to the quack-a-doodle ENT and he did a scope yet again. Said that it was just a little inflamed. My PCP then sent me 2 weeks later to a new ENT who did yet another scope and said I had polyps! WTH??? Who is right?? He said I had pus in my nose also and took a culture, which came back negative. When questioned about that he gave me a weird story about the antibiotics I had been on. I took yet another 2 weeks of doxycycline and I was good for about a month. Then I guess the steroids wore off as the symptoms of nasal congestion and cough came back. I was put on another 2 weeks of prednisone and it was okay until I went off and now just 3 days after stopping the coughing is coming back again.

NOW for the big news. I went to see my doc on Thursday. Everytime I would go to my doctor about this he would just scratch his head and say he just does not know what it could be. He has tried me on everything. Right now and for the last 8 months I have taken regularly and daily, flonase nasal spray, allegra, sometimes Astelin, sometimes Cheratussin cough syrup and sometimes Duoneb treatments, but not very often.

All of a sudden the other day when I went to him he mentioned this Churg-Strauss Syndrome. Because I have sinus symptoms and a high eosinophil count. I have always for as long as I can remember ran a high eosinophil count and he has never made a fuss of it. I even remember once questioning him about it and he said that it was probably high because of allergies. Now the guy has me totally freaked out about going and getting these blood tests for Churg-Strauss Syndrome. ANCA test, ANA, rheumatoid factor, etc. I know this is a very rare condition, but does anyone out there have any knowledge about it? I know he said that if the blood tests would come back "suggestive" of the disease then a tissue biopsy would be necessary.

Thanks

05-01-2014, 03:13 AM

Hi. Gee, I'd be at my wit's end, too! Was it your PCP who raised the thought of Churg-Strauss? To vet for that, I'd want to head straight to a rheumatologist, as opposed to allowing a PCP to test further. I say this for a variety of reasons:

Churg-Strauss is a form of vasculitis.
Rheumatologists are extra fussy about the specialty labs they use. They know which are best at performing AI tests, some of which are titer tests (tricky to perform).
In addition to run-of-the-mill CBC (for eosinophils, ESR, CRP, BUN, creatinine, etc.), and the common rheum tests (like ANA, RF, and ANCA), I saw some strange tests described that were totally new to me, like ECP, SiL-2R, and STM. If you need these rarer tests, why not get them done simultaneously, or at least give some rheum the chance to run them if warranted?

Another key concept I gleaned is that Churg-Strauss typically arrives in stages, with the first, preceding the others by 3 or more years, being allergic rhinitis and asthma. Stage #2 is eosinophilc infiltrate (in pneumonia or gastroenteritis). Stage #3 is the vasculitic stage. The fact that the condition occurs in stages seems to me to be yet another reason to see a rheum, in that rheums would likely be far more proficient at all this nuance.

A final concept: there are many "differential diagnoses" for Churg-Strauss, including garden-variety eosinophilia.

I'm only a patient (lupus), so these are only my "dumb-patient thoughts".

I hope others add more (and wiser ones, hopefully). BTW, where do things stand as of now? Have you gotten anything new back? Sending my best, Vee

05-01-2014, 05:52 AM

I agree with Vee that a rheum would be your best bet, and because Churg-Strausburg is so rare, I would consider going to a university setting where they usually take a special interest in the more unusual conditions. Do you know how high your eos run % wise? Over 10% would make me suspicious of something more than allergies. Even people with bad allergies usually run less than 5%. ANCA is a good test for vasculitis, but is not specific. You probably also should have alpha 1- antitrypsin run as well, as a deficiency can make for long term allergy/asthma problems. Most rheums will never have seen a case of Churg/S. It is good your Dr thought of it, and raised the ?. Do you also see an allergist/immunologist? That might be helpful too in evaluating what is going on. If you have polyps, a nasal polypectomy might help a lot in getting your sinuses to drain better, preventing infection, and allowing you to breathe better. A mast cell stabilizer like Singulair (montelukast) might help both the allergies and asthma as well. Wegner's granulomatosis should be considered too, and if polyps were removed, they would serve as a tissue biopsy when pathology testing is done.

05-02-2014, 10:53 AM

Hi and thanks for commenting. I got my results back a few days ago and they were all negative. I did have all the ANCA and antitrypsin, etc. Actually 1499.00 worth of blood tests. Rediculous what these labs bill out at. I have been to 2 ENTs and have no polyps. Just nasal drainage. This all started around this time last year when I got a sinus infection. It was let go far to long by a quack-a-doodle doc who at my persistent urging of getting a CT scan of the sinuses would not send me. At that time.......I was paying for EVERYTHING out of pocket as I did not have insurance them. I may be one of the few who is thankful for Obamacare as I have definitely given it a workup since January 1 of this year. As far as not being able to breath.........not a problem. I have never really had a problem with congestion. Just postnasal drip on and off and coughing. As it was left so long I believe I did inherit a bit of allergic asthma as every now and then I will have a feeling like I need a puff on the inhaler.........not often though. At this point..........I am back on steroids 10 mg a day and whenever I try to stay off of them.....everything comes rushing back. Yes, my next stop is a rheumatologist. The problem is my insurance does not have a large pool to choose from in certain specialties as we are not a HUGE town. Makes it hard.

05-02-2014, 10:59 AM

I forgot to answer........I looked back on my lab reports as I always get copies and I can see that my eosinophil count has ALWAYS run high as far back as 2005. I would usually get blood work twice a year. Funny thing was that they were always high (12-17) in September and always normal on the March blood work. However, I did have them done at this last test the other day and they were 15. Seems to be the golden number with me. I have questioned it many time (as I am in the medical field) and was always told don't worry, its just allergies.

As far as the stages of CS Syndrome. I have read on their organization board that the syndrome has 3 stages, BUT the stages can happen in any order. Its scary, but rare.

05-03-2014, 05:58 AM

Your insurance company may cover diagnostic and treatment centers out of state, like National Jewish in Denver, when you are in a small town, and especially with an unusual problem that no one can quite get a handle on. You could call and ask to speak to the medical director. They will give permission in special cases to go out of network but get in-network coverage. A cryoglobulin blood test might be helpful in supporting a diagnosis of a vasculitic disorder. You might look on previous labs to see if that was done. It is good to get copies of every lab and image you have done, plus CD's of images, for future Drs to see. This is really important when dealing with rare or complex issues that defy diagnosis and require numerous consults. The NIH in Atlanta also takes 100 cases per year of "difficult to diagnose" diseases. You and/or your Dr. must apply to get in, and that could be a closer resource for you, or the Mayo clinic in Florida. Good luck to you.

Churg-Strauss??

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