Sarcoidosis Support User Group
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Welcome to the sarcoidosis support group, a place where sarcoid sufferers can go to discuss symptoms, diagnosis and treatment in any stage of the disease.

Founded by mygoode on October 4, 2010
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Hi.  I'm new to this group.  I'm trying to figure out if the direction my doctors are leading me is actually giving me the answers I should have or if I should persue other options.

My history:  I have a history of a chronic cough.  It flares periodically and is typically attributed to acid reflux and asthma.  I just went through a 4 month bout of coughing/ shortness of breath from July through September.  Neither the acid reflux or asthma treatments were working.  I had a chest x-ray to check for Sarcoidosis and it came back "concerning".  A follow-up CT scan came back normal.  Jump to October.  I had an intense headache and ended up at a Neurologist.  He did bloodwork and my ACE came back at 356.  I repeated the test about 5 weeks later and the results were "above clinical reporting range for this analyte".  

The Neurologist was concerned and sent me to my PCP and Pulmonologist.  My PCP said he hadn't seen anything like this before and even consulted with another person in the practice.  They told me not to worry about it.  My Pulmonologist told me it was highly likely it is Sarcoidosis given my history (I had a check-up with him last September as my cough was resolving).  He felt that doing any invasive testing had more risk than my current symptoms warrented.  He also thinks that treatment would have worse side-effects for me and be worse than my current symptoms.  I've been on tapers of Prednisone regularly for my asthma  over the years and my last taper at the beginning of september gave me bad side effects for the first time.  Kind of scary.  At this point, I'm just going back in 3 months for a follow-up visit/ PFT's and x-ray and hope the Sarcoidosis resolves itself eventually.

Due to my extremely high ACE, all 3 doctors strongly suspect Sarcoidosis and my history suggests it is probably in the lungs, but there is nothing else to confirm this at the time.  Should I be concerned?  Should I be looking for other answers as to why my ACE is so elevated?  I keep reading that anything over 67 is abnormal, but nothing tells me what such a high reading means.

Any suggestions would be appreciated.

1 Comment
Sarc is tricky, not only because each case is completely different, but because each doctor treating it has a completely different school of thought on treatment.  I'll agree with them that Prednisone is awful and if you can avoid it, I suggest you do.  However, if your shortness of breath and cough is affecting your quality of life, I'd seek the opinion of a rheumatologist.  If the ACE levels and cough are your only sarc marker, then I'd make sure your doc schedules regular x-rays to check for organ involvement and hope for the best.  Unfortunately, the only way to verify whether or not you have it is to do a biopsy on the affected areas.  If you don't have any swollen lymph nodes or granulomas in your organs, there's nothing to biopsy.  If the sarc is in your lungs, your doctors would know it.  The granulomas would show up on an x-ray.  Hope this helps.

Good luck,
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