Anca result higher

[maria garcia]

What is your usual Anca result? All bloodwork is fine except for Anca alot higher.1:320:mad1:

[delorisdoe]

Everyone will tell you that the Anca results are only good for confirming diagnosis and this is probably true. I know very few people on this site have an increase in their anca value that corelates with how sick they are. For me, anytime over the last ten years I have gone to the specialist due to what I think is a possible flare up of wegeners, my anca is always high at those times. When I feel good it is low. This is not true for most.

If your daughters Anca is high then that is further proof that yes she most likely has wegeners but it quite possibly means nothing more than that. If she is feeling good right now and all other tests are fine then the actual value of 320 is probably not significant.

I also know that different labs can come up with different values with the same blood sample. How does she feel?

[maria garcia]

Feels good except her red eyes and stuffed nose. Her eye doctor specializes in Immune disorders of the eye. He told us her chronic epiclerities is due to her Auto immune Disorder of vasculites . He did a biopsy on scar tissue of the eye. Its been 1 week and 3 days and no results. Now there saying it could take upto twenty days. It s not what I was originally told. So we will see. Her blood work concerned me her ANCA is alot higher than usual and her MPO lower. I called the lab to speak to the doctor who reads it so he can explain how this works. Her Rheumy is not very informative. Im trying to learn as much as I can.

[Chris G]

If the eye specialist confirms that she has some sort of vasculitis, and the ANCA results support this, when will she be starting medication? Or has she started meds? If so, what is she on? If I recall correctly, your daughter has had episscleritis or scleritis for over 6 months. It can not be good for those tiny blood vessels to be inflammed all this time.

[maria garcia]

After all the other doctors said the Episclerities had nothing to do with her Autoimmune. This one confirmed it. After biopsy he talked about MTX . Even if biopsy is negative he will still put her on Meds . Hopefully things won't changel. I've had run around for way to long.

[elephant]

Hope she gets treated, I agree with the eye doc too!

[Kami]

Everyone will tell you that the Anca results are only good for confirming diagnosis and this is probably true. I know very few people on this site have an increase in their anca value that corelates with how sick they are. For me, anytime over the last ten years I have gone to the specialist due to what I think is a possible flare up of wegeners, my anca is always high at those times. When I feel good it is low. This is not true for most.


My Anca results work the same way, when I have symptoms like my legs start aching, my nose is worse, etc, my numbers go up.

[delorisdoe]

My Anca results work the same way, when I have symptoms like my legs start aching, my nose is worse, etc, my numbers go up.

This causes really big battles at my hospital. The lab doctor does not want to do the titer and my treating doctor tries to insisit but it always ends up the lab doctor wins the first battle and my treating doctor has to call the day of my appt and pester him to do the titer.

I dont care much either way except i always try to guess on the number depending on how im feeling just to see if i am close based on symptoms. stupid game I play while waiting in the office for my turn.

[vdub]

I don't always respond, but read almost everything.....

Anyway, this is the first time I noticed this on Leigh's sig..... "Sorta bad? I feel sorta bad when I'm outta milk..."

<snicker> I like that..... :-)

[Al]

...Her blood work concerned me her ANCA is alot higher than usual and her MPO lower. I called the lab to speak to the doctor who reads it so he can explain how this works. Her Rheumy is not very informative. Im trying to learn as much as I can.

Maria--this confuses me. There are two main kinds of ANCA: PR-3 and MPO. Are you saying that the PR-3 is higher, and MPO lower? (Had the MPO been higher in the past?) Most often, patients have one kind or the other, but not both. But sometimes both are present. Making an accurate diagnosis does indeed require more than an ANCA test, but 320 is a high enough level that the warning bells should be going off like crazy.

Some doctors are more informative than others, but it helps to learn what you can (we of the forum will try to help you with your studies!). You need to know enough to fight with your rheumy!

Al

[delorisdoe]

Maria--this confuses me. There are two main kinds of ANCA: PR-3 and MPO. Are you saying that the PR-3 is higher, and MPO lower? (Had the MPO been higher in the past?) Most often, patients have one kind or the other, but not both. But sometimes both are present. Making an accurate diagnosis does indeed require more than an ANCA test, but 320 is a high enough level that the warning bells should be going off like crazy.

Some doctors are more informative than others, but it helps to learn what you can (we of the forum will try to help you with your studies!). You need to know enough to fight with your rheumy!

Al


Alarm bells or not if I have NO symptoms I get no meds regardless of the #'s

[delorisdoe]

I don't always respond, but read almost everything.....

Anyway, this is the first time I noticed this on Leigh's sig..... "Sorta bad? I feel sorta bad when I'm outta milk..."

<snicker> I like that..... :-)


I love this quote. I am always on the look out for funny one liners but I cant get myself to part from this one. Glad you liked it.

[Chris G]

Maria--this confuses me. There are two main kinds of ANCA: PR-3 and MPO. Are you saying that the PR-3 is higher, and MPO lower? (Had the MPO been higher in the past?) Most often, patients have one kind or the other, but not both. But sometimes both are present. Making an accurate diagnosis does indeed require more than an ANCA test, but 320 is a high enough level that the warning bells should be going off like crazy.

I have similar ANCA patterns as Maria's daughter, so perhaps I can clarify.......Maria's daughter is positive for mpo antibodies, not pr-3 (as with most weggies). I believe what she's saying is that the "general" anca has increased, but the mpo specific numbers have dropped.

It does indeed seem that she has active disease, but unfortunately, she needs a more skilled diagnostician to put the puzzle pieces together. Most of us have been through this same nonsense with doctors who are not qualified.......or worse, doctors who THINK they are qualified, who tell you that you couldn't possibly have wg because it's too rare, or because your symptoms don't match their recollection of wg, which they spent 15 minutes learning about in med school. Oops, sorry for the mini rant!

Someone once told Maria about a wg specialist in northern Florida. Does anyone remember who that was, or what city they were in?

[maria garcia]

Al and everyone thank you for taking the time to post. Im just trying to figure all this out. My daughter is Panca positive (high) and MPO positive. (not PR3.) I know most weggies are PR3.

[Al]

My daughter is Panca positive (high) and MPO positive. (not PR3.) I know most weggies are PR3.

Ah. This clarifies things. But the point remains: 320 is high enough to go into immediate action of some kind. When my MPO titer reached 150, they tossed me into the hospital with haste (I was also showing other signs of serious kidney distress). As mentioned before, the ANCA test itself is not enough to make a diagnosis, but you did mention P-ANCA, which implies that there is histological evidence as well. This is decidedly worth tracking down.

You are right--most Weggies are not P-ANCA types. MPA--Microscopic Polyangiitis--is a closely related disease that is more typically P-ANCA, and does not present with obvious granulomas, so it is even more difficult to diagnose. I think you really do need an expert on your team.

Al

[maria garcia]

Chris thank you for putting it all so clearly for me.

[delorisdoe]

Chris thank you for putting it all so clearly for me.

Maria, I don't even know what pr3 and mpo are...you seem to understand wegeners better than I do :rolleyes1:

[Al]

Maria, I don't even know what pr3 and mpo are...you seem to understand wegeners better than I do :rolleyes1:

Leigh, MPO and PR3 are the most common enzymes that ANCA use as targets to do their nasty and destructive business. Wegener's sufferers usually have ANCA of the PR3 type. But sometimes they have MPO ANCA, and occasionally both. These differences are not related to the amount suffering involved. All versions are utterly despicable.

Al

[drz]

Alarm bells or not if I have NO symptoms I get no meds regardless of the #'s

Are you saying your doctor won't treat unless the lab results confirm some increase in inflammation markers or other signs of a flare?

I think my treating doctor is more inclined the other way and tends to prefer to wait if labs suggest something but no increased symptoms are present. Some times the lab results bounce around and vary but then return back to more normal range.

[elephant]

My doctor goes by symtoms than labs. Feeling very tired, coughing more than usual, bloody noses, joint pain that moves around, hearing loss/ clogged ears/ ear pain, eye pain/ red eyes, stomach pain, chest pain, palpatations, sweating at night, headaches, ...fevers that come and go.

[drz]

My doctor goes by symtoms than labs. Feeling very tired, coughing more than usual, bloody noses, joint pain that moves around, hearing loss/ clogged ears/ ear pain, eye pain/ red eyes, stomach pain, chest pain, palpatations, sweating at night, headaches, ...fevers that come and go.

How many of those do you need to have before they treat you for a flare? I have had all those at times but never all at the same time.

[maria garcia]

Her Doctor goes by the symptoms. She has episcleritis and inflamation in her nose with no granulumas. He felt it was not related with a disease. I in the other hand knowing my daughter I know it was not normal or allergies to have episclerities for so long and stuffed nose. Now that the Anca's are even higher I feel all this is related. Biopsy was done I should Know soon.

[drz]

Her Doctor goes by the symptoms. She has episcleritis and inflamation in her nose with no granulumas. He felt it was not related with a disease. I in the other hand knowing my daughter I know it was not normal or allergies to have episclerities for so long and stuffed nose. Now that the Anca's are even higher I feel all this is related. Biopsy was done I should Know soon.

Once you have GPA it is wise to suspect it as the culprit for most things or look at the side effects of drugs being used to treat the GPA. You can get other problems too unfortunately but GPA can manifest itself in many ways and is often the culprit for new symptoms or problems. For me those symptoms were present in my last flare. There were effectively treated with mild increase in my azathioprine and adding some nasal prednisone.

[maria garcia]

drz, I agree.

[pberggren1]

drz, I agree.

I'm curious Maria, what are you disagreeing with?

[delorisdoe]

I'm curious Maria, what are you disagreeing with?

It says drz I AGREE. I think you may need eyeclear implants:w00t:

[delorisdoe]

Are you saying your doctor won't treat unless the lab results confirm some increase in inflammation markers or other signs of a flare?

I think my treating doctor is more inclined the other way and tends to prefer to wait if labs suggest something but no increased symptoms are present. Some times the lab results bounce around and vary but then return back to more normal range.




No I am saying what you just said. Even with a raised lab result we do not treat if there are no serious symptoms. This is why I have untreated pain. But no worries...I'm not complaning I can take a hint. That that don't kill me wlll only make me stronger...:confused1:

[maria garcia]

I'm curious Maria, what are you disagreeing with?

Phil I was agreeing w drz, Symptoms are very important in treatment.

[Sangye]

LOL Now that Phil can hear, his eyes have gone on vacation. :wink1:

[Chris G]

It says drz I AGREE. I think you may need eyeclear implants:w00t:

OMG I about peed my pants!!!

Are you gonna let her get away with that Phil???????

[pberggren1]

OMG I about peed my pants!!!

Are you gonna let her get away with that Phil???????

I blame it on the Pred. I will have to fire up the batplane and head east I guess and find this Leigh person.

[delorisdoe]

I blame it on the Pred. I will have to fire up the batplane and head east I guess and find this Leigh person.

Good luck. I can be mean too

[pberggren1]

Good luck. I can be mean too

I will just take you out for dinner.

[greenjanet]

my ANA detected nucleolar 1;160 is this high or low ? titres greenjanet

[Al]

my ANA detected nucleolar 1;160 is this high or low ? titres greenjanetJanet, I am just catching up and have not yet read your story. (But welcome!)

Arew you talking about ANCA or ANA? These are two (or more different kinds of antibodies. 160 would be high for an ANCA titer. I don't know about ANA. (ANA is the prime antibody involved in Lupus.)an

Al

[Sangye]

Where has our Chris G gone??? :sad:

[mishb]

There are a few people we/I miss - Chris (female), Maria Garcia, Gwenlillian, Rini, Holly and Daggar (just to name a few)
I hope these people and their loved ones are now all enjoying a fantastic pain free period and that they look in here from time to time and maybe one day drop us a line, just to say HI :biggrin1:

[pberggren1]

Gwen and Rini seem to be doing okay. But Maria is not so good. I have not heard from Chris.

[Sangye]

I'm glad Gwen is doing okay. She has such a complicated case and so many problems with the meds. And glad for Rini, too. Both of them young things-- they ought to be out there enjoying life.

[pberggren1]

They are both fighers. Very strong willed. They don't give up.