I have been seeing my rheumatologist since August 2017 and I have a working diagnosis of Behçet’s. I was started on colchicine which I tolerated for 5 months before having to stop due to severe gastric symptoms and weight loss. I was started on Imuran at the start of January and recently had my dose upped.
My question is. My whole life I have had some serious infections and sepsis twice as doctors never think I am as ill as I am as my CRP is never elevated.
My rheumatologist is also finding my lack of CRP response confusing which is why he has not given me a definitive diagnosis.
I have significantly raised IgM and at times eosinophils but my CRP is pretty much always around 0.8.
I was hospitalised recently with a bad virus and again, no CRP response.
Is there a medical condition which causes the body not to mount a CRP response? Are there other tests I can ask him to do instead?
Thank you.
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Jacbar
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My ESR and CRP have almost never been raised during flares. References exist that say this is the case for some BDers. Here's the only ref I can find quickly (need to get to work):
Page 308 of the BD book from the Yazici father/son team says:
(Emphasis is mine)
"Many *but not all* patients with what is obviously active disease have a raised ESR or a usually modestly raised CRP; hence these have limited use in assessing disease activity. The same also holds true for various cytokine levels."
This is in "Behcet's Syndrome," Yusuf Yazici and Hasan Yazici (Editors), published by Springer in 2010.
My CRP are exactly the same which I am always amazed at because you kind of know when your body has inflammation you can feel and see this in places and yet I have only seen one small raised CRP result during the last 6 months worth of weekly blood tests.
I too have ever so slightly raised eosinophils almost every week, only had 3 clear tests in 6 months, my rheumatologist and GP do not appear to be concerned over this, but I am... The rheumatologist says it is likely to do with allergies so I requested my blood was checked for IgE antibodies and the results came back normal.
I am being referred to ENT because I have continued to complain about having a drip from my nose or goes down my throat, been going on for ages, it is mainly clear fluid just like water, it can start and stop at any time, recently I went through weeks and weeks where I would be sleeping then sit up in bed and sneeze and then my nose would produce all this fluid and then it would stop as through it had not happened, I have no allergies, never suffered from hayfever. I would say I have this ever day and don't go anywhere without tissues... I get pressure through my nose in my eyes and into my forehead and head, I believe the nose drip watery stuff and the pressure are linked.
I had wondered if it was a condition that's called Non-allergic rhinitis with Eosinophilia but I do not have an itchy nose...
Then a friend mentioned a condition called CSF rhinorrhea (Cerebrospinal fluid (CSF) rhinorrhea) it is a condition where the protective fluid that surrounds the brain finds its way into the nose and sinuses, often appearing as a very watery runny nose. uvahealth.com/services/skul... I am already waiting for a neurologist appointment about the pressure in my head and would never have thought to discuss the watery fluid but now I will most definitely doing.
Not sure if any of this is relevant to you but I have not come across anyone else with CRP levels not being raised when poorly. I have never been offered any other tests.
Forgot to add yes I have had chronic recurrent tonsillitis most of my life, sepsis when I was younger, they removed my tonsils in 2014 thinking this would help but I still get the throat infections...
I was about to ask if you get the ESR done as well. My doctor orders both, they should be interpreted differently as they have different half lives.
heres two good articles that explain the difference. I have read a few articles similar to Jzeis about how crp isnt ALWAYS raised during a flare. Neuro behcets being one of them... found that surprising for myself.
just remember you know your body. Last time I went to get bloodwork I said how I felt that i was flaring and it was weird... turns out i was flaring (high esr and crp) yet no joint pain, ulcers or fatigue.
you said hospitalized for viral? How do you know? What was going on?
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Rheumy says suspected Behçet's, but gp won't do anything!
Recently diagnosed with Behcets - living in Ireland
Swelling soft tissue under both eyes. Query Behcets related?
Unsure
