Blood Tests - what to check

[Alysia]

The GP said to "just go get bloodwork done", stating that P/C-Anca blood-test were ultra sensitive of 80% or more found in all Wegs., even during remission. My last basic bloodwork was ok - no red-flags compared to the ones prior. I'm told this is like a consistent forever type of marker in bloodwork of Wegs., regardless if one is in remission or not. True?



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Wrong.

C-anca and pr3 are indicators of WG activity. The more the wg is active, the numbers are higher. While in remmision they are back to normal. While smoldering they can be normal or abnormal. Each case is different.
And - many weggies are anca negative, even during a flare.

[annekat]

Still unable to get referral to Rheumatologist. Another member suggested trying an Internist instead. Still trying.
There are many Rheumatologists out there and my GP thinks any of them are doable. Wouldn't they require GPA background to understand this?

The GP said to "just go get bloodwork done", stating that P/C-Anca blood-test were ultra sensitive of 80% or more found in all Wegs., even during remission. My last basic bloodwork was ok - no red-flags compared to the ones prior. I'm told this is like a consistent forever type of marker in bloodwork of Wegs., regardless if one is in remission or not. True?

Right now I am so fatigued and sick, and my most debilitating symptom at this time are my EARs that started from damage I feel -could- have been addressed when I had the "unknown" flu symptoms in ER, but instead only given pain meds. It progressed fast from that period, and has not subsided since. I'm terrified it's permanent because none of the ENTs will truly address it. It's so chronically debilitating, affecting me physically and emotionally to function, and there's NO medication to help. Some of this, is very much alike another member: Rose in this forum (and I agree with her most recent ear theory). I am currently NOT having any respiratory infections like I had earlier, but do continue w/ consistent nasal discomfort with dry blood crusting/bleeding, obstruction and sporadic bleeding. But NO sinus infections, which I had often caught by public contagions. ENT says Wegs. only have A LOT of constant GREEN crusting and erosion, not blood crusting. Also said (once again) to not have the ability to internally evaluate my ears (yet did not look or do ANY imaging, audiology, bloodwork or review my history).

I'm appalled w/ why none of the hospitals didn't further investigate when I had abnormal levels of WBC, Neuts & CRP etc. CTs/MRIs reported chronic sinus inflammation/infection (which medical staff always ignore). Effusion in ears. With that, Drs. continued to be "perplexed", to instead try find something in the brain(!?!) and *surprise!* - no swiss cheese there, so, dx: migraine. It appears, headaches could be a secondary effect to abnormal bloodwork w/ sinus inflammation? It makes no sense, and I did not know at the time. Unfortunately, these events likely were when P/C Anca tests should've been done. Currently, I'm not having these severe type of symptoms to require hospitalization or E.R (yet).
So, my question is, would P/C Anca blood-testing still be reliable to show markers of Wegs. regardless? Or is it unpredictable?
I'd appreciate feedback, as I am new to this & trying so hard to get better. Thx for reading. -H.

I would go ahead and get more blood testing, repeating the standard stuff and also making sure that p/c-anca is included. For many, p/c-anca is a reliable and consistent marker for Wegs. Others report little or no test result even if they are clearly sick and biopsies are consistent with Wegs.I had very little evidence of anca when tested and haven't been tested since, though CT scan suggested Wegs and biopsy confirmed it. Did you or can you get a biopsy? Unfortunately, nasal biopsies aren't always reliable, but mine was, so it's worth a try. I was told a sample was taken from the hole in my septum and another location in the area. And like you, my ears, along with sinuses, were my biggest problem in the period prior to dx. After 2.5 years of no dx or treatment specific to Wegs, it went into my lungs, and that got their attention. My hearing loss is permanent but that is not true for everyone. The sooner you can get a dx and treatment, the better. I was lucky to get dx and treatment in my small town, if only it had been sooner. You might have to travel outside your area to find docs who will be of more help. Sounds like your GP is on your side and maybe he or she can help you find a better ENT and rheumatologist. Best of luck.

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[annekat]

I would go ahead and get more blood testing, repeating the standard stuff and also making sure that p/c-anca is included. For many, p/c-anca is a reliable and consistent marker for Wegs. Others report little or no test result even if they are clearly sick and biopsies are consistent with Wegs.I had very little evidence of anca when tested and haven't been tested since, though CT scan suggested Wegs and biopsy confirmed it. Did you or can you get a biopsy? Unfortunately, nasal biopsies aren't always reliable, but mine was, so it's worth a try. I was told a sample was taken from the hole in my septum and another location in the area. And like you, my ears, along with sinuses, were my biggest problem in the period prior to dx. After 2.5 years of no dx or treatment specific to Wegs, it went into my lungs, and that got their attention. My hearing loss is permanent but that is not true for everyone. The sooner you can get a dx and treatment, the better. I was lucky to get dx and treatment in my small town, if only it had been sooner. You might have to travel outside your area to find docs who will be of more help. Sounds like your GP is on your side and maybe he or she can help you find a better ENT and rheumatologist. Best of luck.

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Also, I don't think your GP is right that any rheumatologist will do. Many of them just don't have the experience or knowledge of Wegs. My current rheumy has only seen about 20 cases of Wegs and I don't even think that is enough. But I'm doing Ok because I'm lucky to have gotten things under control with my previous pulmy/internist after the biopsy from my ENT, even though those two also had very limited WG experience. I now have a new pulmy who I think is more savvy about Wegs than any of them. But if I have a bad relapse, I'd be best off traveling to the nearest big city for a true specialist. Be careful when navigating the Vasculitis Foundation site; I haven't been there for a long time, but I remember finding two lists, one for true recognized specialists around the world, and the other where you could find a rheumy in your area who might not be a well known specialist. A lot of us on here know the names of true specialists is specific locations, whether they are on the VF list or not. Good luck.

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[darl-p]

I have found that the statement made by your P/C about Rheumatologists is way off. I did not have a Rheumatologist in the team for about six years and after being in remission for for several years I ask for a referral for a Rheumatologist. The one I got was personally a nice guy. His first order of business was to eliminate all drugs I was on even in light of the fact that every time in the past that drugs had been changed I got worse. I was to be his first Wegs patient. I asked my P/C for a new recommendation for an interview. The new one has been great. She has one other Wegs patient. She has me on a monthly blood test. Between my team of nephrologist, pulmonologist and my P/C the blood test concerns are WBC,BUN,SED,CRP. The ANCA has not been a concern in the last few years as it is seen as not significant by its self. My renal panel is also watched closely by the nephrologist as the kidney has been involved. Bottom line .. all Rheumatologist are not created equal. I have taken the stance on new team members that I interview them before having them assigned to me.

[drz]

For some people ANCA results don't track Weg activity. Physical symptoms are best indicator of activity and can often precede lab results.

[MikeG-2012]

For some people ANCA results don't track Weg activity. Physical symptoms are best indicator of activity and can often precede lab results.

For me, ANCA test has NEVER been an indication of disease activity. Learned the hard way that the test is NOT conclusive to a flare-up. Lost all of my sense of smell because of it back in 2013.

If your doc tells you that your ANCA is negative and you do not have activity, my recommendation is for the doctor to make a consulting call to any of the many Vasculitis Centers in world. Most of the experts will concur that ANCA is not a definitive test of activity.