Blood Tests - what to check

[Birdie]

Flare, smolder, remission... rare, medium, well done... the little plastic indicator in the turkey popped up hours ago so you better go put out the fire...

What blood tests work best to indicate YOUR Wegstatus?

[Arleta]

Flare, smolder, remission... rare, medium, well done... the little plastic indicator in the turkey popped up hours ago so you better go put out the fire...

What blood tests work best to indicate YOUR Wegstatus?
My ANCA always comes back negative...no active Wegs. I don't know if it was positive when I was first diagnosed. Guess I should ask that. I have blood work evert 3 months. My creatinine is always a little above normal, my white count and red count are always a little high.....but nothing to indicate I'm really having a flare. Yet I still always have some low level issues.
Arleta

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[debra]

Birdie, pleasant afternoon, to you... Bidie, a cmp, complete metabolic panel. Will include creatine ect. Bun creatine ratio will check level of hydration. Liver values, alt, ast ect. Fast before unless order says otherwise. Blood glucos, as pred will cause an upward trend in most. Ask doc, to test with meter first, to see if youre getting an accurate reading. Hemogloban a1c, to get a three month snap shot, would be cool. The panel will show youre white blood cell count, red ect. Im sure you know this. Anca, as you know... Ask nirse for a meter, blood glucose, and start checking youreself, ignore that nurse! No going back... Start testing, morning befor eating, then one hour before meals, eat, then test a half hour after, then an hour and then two hours after eating. Write down youre numbers. Look for a trend, are you going up in numbers, or coming down at that two hour mark. Meters are givin freely, take advantage. Whens the last time you got something for nothing? Pee in a cup. Make sure its on the order! Why make two trips? Try, hard to get it in the cup, you can do it! Pray for no stage freight..... If i think of more, i will rush back, and add to the thread.. And get physical copys of these labs! Paper in youre hands copies! Good luck, my friend... Deb. So sorry for typos!...

[Aylasnan]

My creatine serum is always high too - hope this helps my diagnosis.. Inflammatory markers too.

[debra]

Birdie, what the Hells wrong with me? Crp, and sed rate, but I'm sure you know this... Will rush back, as my brain wakes up..Still not quite awake... Yes its 225pm here, but means little to my body lately... Deb.

[Birdie]

Birdie, what the Hells wrong with me?

There is not enough bandwidth to answer that question. But, you're always telling me I make you laugh so I appreciate you returing the favor. :)


Crp, and sed rate, but I'm sure you know this... Will rush back, as my brain wakes up..Still not quite awake... Yes its 225pm here, but means little to my body lately... Deb.

Deb,

I reduced pred from 5 to 4 mg a few months back. Had massive muscle spasms, I mean really massive... tearing the muscles apart... lasting for hours... took two months for that injury to heal... Muscles responded but did my Wegener's respond to the pred reduction? I dunno... What do other people see as a change in test results when Wegs activity changes?

What I'm looking for here is not the broader significance of test results, or even what tests are good to follow when you have Wegs. So far I've never seen what I'm looking for, and it's a big part of why Wegener's is so hard to diagnose. Is there any commonality? A test, or a group of tests, which are more likely to indicate Weg activity?

I would like to know what tests demonstrate the activity of Wegs in different people. I expect differences, it seems no two cases are the same... Hope that at least some people know of their personal Wegs specific indicators. Tests results which reliably go up and down as Weg activity goes up and down.

Hope that cleared up the muddy water...

[debra]

Birdie, I'm thinking, the Canca, for you, since youres reflects the disease. Crp, big, to indicate inflamation, also sed rate, if processed correctly, to indicate inflammation... All blood cell counts will also help in putting it all together... Sorry, I tried. If my brain wakes up, I'll add more as I think of more... Deb.

[Middlesista]

My CRP went down - doc did not check see rate. As I mentioned in another thread I noted my Absolute Granulocyte count went up a bit but doc not considered and I could not find that much info on it. Will have a repeat CT scan done later this month.

Have had had rituxin and currently on 30 mg of Prednisone and Bactrim and a slew of other stuff....

[Pete]

Flare, smolder, remission... rare, medium, well done... the little plastic indicator in the turkey popped up hours ago so you better go put out the fire...

What blood tests work best to indicate YOUR Wegstatus?

I have labs done monthly: CBC, metabolic panel (includes creatinine, etc.), sed rate, CRP, and urinalysis. My doc looks at a urine sample with a microscope as blood in the urine presents with unique casts indicating the dog is going after the kidneys. Haven't had a c-ANCA or p-ANCA done since my first visit to Cleveland in 2012. Metabolic panel is probably next most scrutinized. My creatinine always runs just a little above normal, but it's been stable for a couple of years, so we don't worry about it. I think someone on here posed a hypothesis about absolute granulocytes to see if a rising level was concurrent with a flare. In my case, it was, so that's on the question list for my rheumy in April. Sed rate and CRP as we all know are general indicators of inflammation. If they go up quickly, it's probably worth a conversation with the doc.

As always, how you feel is probably your best indicator of wegs activity.

[debra]

Pete, hi. Interesting, there's a special and expensive way to look at urine, and I tried getting my doctor to do it, but to no avail. There's a shock. I need to look at what its called, but its different than the usual. It's called spinning the urine, and has to be done on the spot. Then the casts found, and other indicators are measured and looked at with a special machine. I'll look later, but its an accurate way to test for wegeners,so why the hold off? Expense, I'm guessing, why else.... Deb.

[debra]

Above post, I believe is a centrifuge spin for urine. A special urine spin that is done within minutes. I will look into it, can't remember the original article, as it was back in 2012. This man's diagnosis was based on this alone, with symptoms. Negative biopsy, negative Canca. Kidney doc, spun his urine, listened to the patient aand treated. Ignore that extra a. Good kidney doctor! I saw one in 2012, and when I mentioned wegeners, she wrapped things up, stating its to rare! Rare my a**!!! Birdie, I think any med change, in dosage or med itself, will cause more symptoms until you're body adjusts to the change, or you're doctor goes back to the other regime. I mean simple stree can effect ya, so you can imagine what a med change can do? It's such a weird sucky sickness, with a mind of its own! Deb.

[Girly3800]

Well, for what it's worth my husband's blood pressure goes up and the neuropathy/neuritis (depends on the doctor what they call it) in his right foot starts acting up worse than usual. With him the better the blood work, WBC, Creatinine and BUN particularly, the worse he feels. When those tests start to go into the abnormal ranges the better he feels. Go figure. Sed rate, CRP and ANCA don't seem to track the disease activity. Mostly we and the rheumatologist and PCP rely on how he feels and what his blood pressure is.

[debra]

Hey girl... Same here, for blood. The exact opposite of what it should be! Plus no Canca, plus no real doctor! Would be nice to have a doctor just listen.. And look! So crazy, this wegeners... 3800, you're lucky he,has a doctor paying attention, good for you guys... Oh, someday... DDeb. Ignore the double d! Again! Yes, men, being. A double d, isn't all its cracked up to be... And it rhymed....

[drz]

I have labs done monthly: CBC, metabolic panel (includes creatinine, etc.), sed rate, CRP, and urinalysis. My doc looks at a urine sample with a microscope as blood in the urine presents with unique casts indicating the dog is going after the kidneys. Haven't had a c-ANCA or p-ANCA done since my first visit to Cleveland in 2012. Metabolic panel is probably next most scrutinized. My creatinine always runs just a little above normal, but it's been stable for a couple of years, so we don't worry about it. I think someone on here posed a hypothesis about absolute granulocytes to see if a rising level was concurrent with a flare. In my case, it was, so that's on the question list for my rheumy in April. Sed rate and CRP as we all know are general indicators of inflammation. If they go up quickly, it's probably worth a conversation with the doc.

As always, how you feel is probably your best indicator of wegs activity.

Mine are similar to above except when I go to Mayo where they do extra tests for the research project. These include ANCA tests and some other things that my usual monthly tests do not do. Tests are generally to monitor kidney, lung, liver function, any signs of infections and my general health to check against any bad side effects from treating meds or Weg activity. I also have extra tests to monitor the diabetes like A1C and glucose levels. During physicals or whenever symptoms warrant some concern extra tests are often added. These might be things like checking Vitamin D or Calcium levels and other things to make sure I am in safe range. I learned yesterday that the routine urine tests should help check for any early signs of bladder cancer too from the CTX meds.

It might be fluke, but yesterday the tests available in office during my appointment were all in normal range for first time since I was diagnosed with GPA. No inflammation, normal kidney function for first time ever, and nothing out of normal range. This puzzled me since I am pain now and needing a double hernia repair in a few days.

Again the lab tests are weighed against symptoms like increase in blood in nasal rinses, more fatigue, joint pain. These residual symptoms of Wegs often wax and wane, especially during any infections, even when I am considered in a drug induced remission.

[debra]

Drz, hi... Drz, you're posts are always helpful... Good seeing you, Drz. Deb.

[Christina32]

Hello! My experience has been a creeping up CRP with persistent or worsening symptoms over a few months. An elevated CRP isn't a big concern for me alone however if it's up 2 months in a row I pay extra attention to how I'm feeling. Last 'big one' I watched it slightly go up each month but not too high to be overly concerned, as I ignored my symptoms my body soon just gave in. And of course numbers were skyrocketed. My C-anca does correlate to my disease activity however I only have it tested every few months and it's more for my own info than any treatment changes etc.

[LisaD1]

here is a data point for Sed/CRP difference just as I was getting a massive asthma attack: SED- 30 (top end of normal at my lab) CRP 2.6 (normal less than .8). This shows that the SED rate had not caught up with the CRP yet. the CRP is short half life meaning it reflects more current situation. The SED rate would probably take a few days or more? to catch up and appear abnormal. This is the first lab work I have had that shows this so clearly. Just a point of interest.

[Alias]

For me the standard tests are ESR (sed rate), CRP, complete metabolic panel, and complete blood count. ANCA has only been checked once since initial diagnosis. I think Pete is right, that the best indicator of possible disease activity is how you are feeling, since there are no truly definitive tests. Increased inflammation can have many causes.

[Middlesista]

Do most doc treat based on sx like joint pain , fatigue , mild rash or do they seem to look for sx like coughing up blood, bloody noses, significant skin issues and lab work and diagnostic testing being abnormal before they treat I know there is a lot of variety but just trying to get a sense of what's usually done for milder symptoms vs what can be thought of as more severe sx.

[Dirty Don]

My docs treat based on blood & numbers. They watch the lesser symptoms closely, but usually won't make a move unless my numbers are up. My internist treats milder symptoms if the numbers are normal...otherwise, the WG team does it. Best to you.

[Debbie C]

My tests are basically the same as everyone elses. The sed rate can be do to any inflammation not necessarly wg. I never get cked for c-anca since being dxed. There is usually a trace of blood in urine tests but they are not concerned with that,if it were more than I know they would be concerned.I know she looks at the Alt and Ast, not sure what those are off hand,I know I have googled them. I was going to go do my bloodwork today,but have a terrible sinus headache with the weather dropping 30 degress. Was there something in yours that you wonder about ???

[debra]

Deb, hi... Alt and Ast, are liver enzymes... Interestingly I have had blood in urine as well, since 2012, and just last couple of urine samples are reflecting an increase in creatine, protein, leukocytes, ect, so maybe getting somewhere... And its about time, I'd say... Coming up on four years. Hoping this pulmonary doc, is my knight in shining armour... Hope you feel better Deb... Deb...

[jlove]

Middlesista, in my experience, my rheumatologist takes note of more mild symptoms but doesn't really alter my treatment plan for something like fatigue unless it's in combination with other symptoms. I haven't had much in terms of joint pain or rashes but I was very fatigued when my nasal crusting really flared up and this resulted in a change in my treatment plan.

Blood work is monitored and anything alarming is always addressed. My blood work tends to be fairly normal, though, as most of my symptoms are of the limited Wegener's variety. What it comes down to, for me, is whether or not my symptoms are really limiting my daily activities. If fatigue were really limiting me and I was able to convey this to my rheumatologist, I think he would consider making an adjustment in my treatment. If it's something that's inconvenient but not ultimately dangerous or incredibly limiting, it goes into a "watch for further development" pile until it becomes a little more serious. It seems like if a drug is working for most of your symptoms but not a few minor ones, it's not worth it to jeopardize having the more serious symptoms under control in order to deal with more mild symptoms.

[Middlesista]

My docs treat based on blood & numbers. They watch the lesser symptoms closely, but usually won't make a move unless my numbers are up. My internist treats milder symptoms if the numbers are normal...otherwise, the WG team does it. Best to you.


Thanks Dan! Seems my RA is doing the same thing - not as impressed with the lesser symptoms I bring to his attention. What seems big to me dies not seem to impress him much.

[Middlesista]

Middlesista, in my experience, my rheumatologist takes note of more mild symptoms but doesn't really alter my treatment plan for something like fatigue unless it's in combination with other symptoms. I haven't had much in terms of joint pain or rashes but I was very fatigued when my nasal crusting really flared up and this resulted in a change in my treatment plan.

Blood work is monitored and anything alarming is always addressed. My blood work tends to be fairly normal, though, as most of my symptoms are of the limited Wegener's variety. What it comes down to, for me, is whether or not my symptoms are really limiting my daily activities. If fatigue were really limiting me and I was able to convey this to my rheumatologist, I think he would consider making an adjustment in my treatment. If it's something that's inconvenient but not ultimately dangerous or incredibly limiting, it goes into a "watch for further development" pile until it becomes a little more serious. It seems like if a drug is working for most of your symptoms but not a few minor ones, it's not worth it to jeopardize having the more serious symptoms under control in order to deal with more mild symptoms.

Someone had written that it is wise to be proactive vs reactive and that made me think. Some of the more serious issues are sometimes not obvious until damage is occurring - such as lung lesions and u would need a CT scan to catch this unless the damage is causing symptoms such as SOB or coughing up blood. I would like to not have to react to a big issue if I can prevent things from getting out of hand. I know there is no rhyme or reason to this disease - I guess I am just trying to make sense out of something that is so senseless and follows no patterns and trying to,determine if there are preliminary clues of a milder type of effect before significant issues occur. If I had my way I would like blood work every week although my veins would not appreciate this

Thanks jlove.

[jlove]

I have definitely experienced what you're describing. I went undiagnosed for a while because I was ANCA negative and only showed two criteria for Wegener's. Toward the end of my senior year of college, my nose started getting really congested and I thought nothing of it. Eventually, I had really bad crusting and, by that point, I was suspicious something was up so I figured I would mention it when I saw my ENT. I also figured it would be fairly minor and she could maybe prescribe a nasal spray or something to sort it out. She knew my full history as I had been seeing her for subglottal stenosis and she was the one to break the news to me about how nasal crusting is also a Wegener's thing. It was almost a relief at that point because finally I had a name for my mystery symptoms but it was still so unnerving for the new symptom to creep up like that. I wish I had done more research but, to be fair, I still didn't really know what I had and I knew both my parents and doctors were hoping Wegs wasn't it.

So I know how you feel and I am also the patient taking note of every little ache and sensation in every part of my body. I also spent many appointments explaining these notes to my rheumatologist and, for the most part, he shut them down fairly quickly. At first it feels like, well, I did all of this noticing... how could I be wrong? On one hand, we are basically professional patients by this point. We have one of the unfortunately sneaky diseases out there and so we are hyper vigilant. This is a survival mechanism, and it's important, but it also means we may be picking up on things that aren't necessarily a big deal. The important thing to look for is patterns. Every time I present a symptom to my rheumatologist, he asks further questions about when this thing happens. Is it after a particular activity? Is it a consistent feeling in one particular place? Take note of the patterns.

Basically I think it's important to know what is a possibility in terms of how Wegener's manifests. Just be aware of the major things that can happen so that you know what to look out for. You should take notice of your body and don't worry about presenting too many symptoms to your rheumatologist. It's what they're there for. I trust my rheumatologist very much. I guess I should quickly also add that having a rheumatologist (or other physician) you trust is very helpful. Mine is well-known in the Wegs world (Merkel for those playing along) and I still ask him every dumb question I can think of when I have my appointments because, who cares if he thinks I'm a little crazy? The more questions you ask, the more you will learn about what questions are good questions to ask. If you are paying attention to your body and seeing your rheumatologist often (I go every 3 months), you should be able to catch a major development happening before it becomes serious.

I feel as though I may have told you some of this in another thread but I have a lot to say on this topic. I had a hard time adjusting to life with a whoooole new set of worries. You learn that you play a big role in your own care and you're like "uuuuum what, I am not qualified for this." At least, that's how I felt. Just be open to learning and observing and it definitely gets easier to manage.

[debra]

My sista, stuck in the middle, hi. I totally agree with this... I think, and this is my opinion only, please, that I could deal better with any sickness in the world, aopposed to this one... I'm not kidding when I say this disease is like a monster with a brain all its own! Sneaky, and plays hide n seek!!! It's just nuts! Absolutely exhausting!!! Then more tiring, as if that's not enough, and it is, its tuff diagnosing! What more? Venting does help, as does knowing you're not alone with this horrendously affliction... Hanging in there all together. Deb...

[debra]

Jlove, really great post... Very lucky to have Dr. Merkel, also... Deb...

[debra]

Horrendous affliction, tried editing, but could not??? Some things, never change... Deb...

[Middlesista]

Jlove - thank you for your response and you are so correct about being hypervigilant -

i do keep note of questions that I have for my RA he just does not seem as I impressed with these "lesser" symptoms than I do

[jlove]

I guess what I really meant to say was I think it's good to always talk with your rheumatologist about the lesser symptoms. Also, be open to the idea that some of what you notice may be nothing after all. I have some random lesser symptoms sometimes that don't linger for very long and I always tell my doctor about them but that doesn't necessary turn into anything noteworthy in the long run.

If you feel like your rheumatologist isn't taking important things seriously, then it's a whole different story. I think autoimmune patients have an interesting relationship with their main providers because we really need to participate in our own care in ways other patients aren't required to. For me, it took some getting used to. It wasn't so much that I had to get used to taking note of my symptoms as I had to learn how to communicate with my rheumatologist. If trust his/her medical advice, it may just be that the two of you are still learning to work together. :smile:

[Alysia]

being careful not to write an off-topic post... but - I wonder: how are you Birdie ? it seems sometime since the last time that you have posted. are you ok ?

[debra]

Im also concerned... Birdie, if you can, just check in and do a quick post? Debra...

[darl-p]

I think that Pete's response was right on. "As always, how you feel is probably your best indicator of wegs activity."

Over the years I have had many tests and keep a spreadsheet of info. I have tried to correlate the info with how I feel. Not much good. I had all blood tests last weekend and all showed normal within guidelines. Yet .. lung x-ray shows possible pneumonia or weg flair and several joints have abnormal pain indicating a flair. My team of docs tend to be in-tune with the symptoms of a flair even if the blood test say different. Know thy body.. I keep a ready supply of 10mg prednisone on hand to combat the effects and have approval to self-medicate as needed.

[pwc51]

darl-p - I have found that I am aware of my flares before the bloods indicate anything! Sadly my team only tend to react to the blood results so there are sometimes a few days lost when treatment could have been started. Generally this has not been an issue but am conscious this may not always be the case!

[debra]

Wow, so awesome to see so many old members popping back in lately... Nice seeing you guys, and hope you're doing well... Deb...

[Titus3:2]

I agree with others;GPA has a certain feel to it.Birdie,I think Alysia ,and Bora bora Debra are baiting you.Now,back on course.

[debra]

Keith, ya we are, but isn't working... Its not working, is a feeling I've learned hard to just accept! In all areas... Acceptance is a pretty cool thing... Keith, hope you're good... I love reading you're posts... Deb... Not in Bora,bora as of now! Unfortunately!!!...

[annekat]

Im also concerned... Birdie, if you can, just check in and do a quick post? Debra... Me, too, I sent him an email and he hasn't responded.... that's not super unusual, but I still wonder why we haven't seen him on here..... What was the latest development he was dealing with before we stopped hearing from him? I don't remember, but could look back in his posts and find out....

[debra]

Anne, his last development was seeing a new rhuemy doctor, that's all I remember... I was under the impression you were in contact because you talked of the pottery website... Don't know where you stand with that, however someone could call the Scottsdale PD, easy enough to do a wellness check? But I gotta say, don't think he will be to enthused to say the least... That's the impression I get? Maybe ya got em, to facebook/ fakebook!!! Haha, I told ya! As Birdie would then say, bye bye, Birdie!!!... DDeb, ignore that double D!!! I do see it! Just can't get to it...

[annekat]

The pottery website is a whenever it happens type thing. Not something we are working on hot and heavy. But I wanted to give him something to do so I sent him some pics a couple days ago. Have not heard back. I think Birdie could be just taking a break, some time for himself, and last post I found he was talking about waiting for parts for his motor-scooter/bike/trike, whatever it was, I can't quite remember. But maybe he has been busy working on that. I don't know how he'd feel about a wellness check. I know he has his bird friends, and today is the day they'd normally have their brunch.... at least, they would know if anything was wrong, and would be there for him, though I don't know how they'd know to notify us.

[debra]

Hey, Anne is this what they call bird watching??? Ya, couldn't resist that one, and thought he might dig it, if he's in cognito, or something... I'll still pay homage to the Klondike bars whenever I'm food shopping now... I'm sure he's fine, just not fine here? Anymore? Deb...

[annekat]

Hey, Anne is this what they call bird watching??? Ya, couldn't resist that one, and thought he might dig it, if he's in cognito, or something... I'll still pay homage to the Klondike bars whenever I'm food shopping now... I'm sure he's fine, just not fine here? Anymore? Deb... Oh, I think if he's fine, he'll be back.... or even if he isn't all that fine. I think he's the type that if he felt like taking a break would just do it, without announcing it ahead of time.

[debra]

Anne, I must agree there... Not announcing it I mean... He's probably just moved on, it certainly happens... Deb...

[annekat]

Anne, I must agree there... Not announcing it I mean... He's probably just moved on, it certainly happens... Deb... I don't think it means he's moved on. His last post was 10 days ago. That is not a big deal. There are plenty of forum members who take breaks from posting for weeks or months and then reappear. There is nothing wrong with that, or with just "lurking" and not posting. Getting involved in conversations here takes a lot of energy and time, and most people have lots of other things going on in their lives. Birdie has added to our discussions in positive ways many times, and is not obligated to do so on a continuous basis.

[debra]

Anne, I have to say in all do respect, you're the one making an issue here? Alysia simply asked how he was out of niceness, and I agreed in the post under her... So why go on about it, when no one was? It was just a friendly gesture on her half, with me agreeing under her... Let the man post or not post, andits fine... I agree its a little strange to have someone posting all the time, then just dissapear, but whatever, he's a big boy now... It's not a big deal, I'm sure, very sure he's just fine... Please know I said this in all due respect, because I don't want this to come out the way it did that day on my old thread... Okay? So maybe will be back, maybe he won't? I know I have bigger things to worry about right now, as I'm sure you do as well... Deb...

[annekat]

Anne, I have to say in all do respect, you're the one making an issue here? Alysia simply asked how he was out of niceness, and I agreed in the post under her... So why go on about it, when no one was? It was just a friendly gesture on her half, with me agreeing under her... Let the man post or not post, andits fine... I agree its a little strange to have someone posting all the time, then just dissapear, but whatever, he's a big boy now... It's not a big deal, I'm sure, very sure he's just fine... Please know I said this in all due respect, because I don't want this to come out the way it did that day on my old thread... Okay? So maybe will be back, maybe he won't? I know I have bigger things to worry about right now, as I'm sure you do as well... Deb... I am not making any more of an issue of it than you are. I was reacting against your saying he has "probably moved on". My point was that because people stop posting for awhile doesn't mean they have "probably moved on". If he never posts here again, or if he does, that is his business, and not our job to try to predict or speculate. We will keep going either way.

[Dirty Don]

Debra, you seem to have a lot to say but very little about WG and the peeps who need help, not your 'rahrah' approach. Birdie's doing his thing, let it go. This blog is about WG not your or anyone else's 'thoughts' on others' comments on here. Anne is a huge member and contributor to this blog...you're not. Best to you.

[debra]

Thanks, Don, didn't have a problem letting it go... Sorry you feel as though I have nothing worth contributing, hopefully there's a member or two that feel different... I'm sure thankful for the members that reached out to thank me, because I made them feel welcome, and supported. I guess those few keep me going... All the best to you too Don! Deb...

[andrew]

Hi all! Just jumping in to make sure we stay on topic with this thread. Seems to have drifted a bit.

[vdub]

Have to agree with Don. This is a wegs site and not a social site. Typical site members are people who actually have the disease. Since none of us are doctor's, members need to know that any advice given is coming from a basis of a member's personal experience and not guesses or googles. Sometimes we need "rahrah", but most of us are beyond that and approach the disease in a more matter-of-fact way. We don't necessarily want to keep the site purely technical and we do stray from time-to-time, but generally we keep on track.

Anyone is welcome to participate on the site, but if you don't have wegs, you should limit your participation to the "random thoughts" area. That's why the area was created and we look to forward to seeing your participation in that area.

[drz]

I think buck up or cheer up messages or expressions of sympathy and concern can often be done best with a private message to the person intended since they are often just intended for one person. Info that might apply or be useful to many should be public IMHO.


Have to agree with Don. This is a wegs site and not a social site. Typical site members are people who actually have the disease. Since none of us are doctor's, members need to know that any advice given is coming from a basis of a member's personal experience and not guesses or googles. Sometimes we need "rahrah", but most of us are beyond that and approach the disease in a more matter-of-fact way. We don't necessarily want to keep the site purely technical and we do stray from time-to-time, but generally we keep on track.

Anyone is welcome to participate on the site, but if you don't have wegs, you should limit your participation to the "random thoughts" area. That's why the area was created and we look to forward to seeing your participation in that area.

[Debbie C]

:back on topic: Ha ! Ha! with all that being said,I forgot what the topic was ! Oh yea bloodwork. I don't get it either, mine seems to come back good all the time ( knock on wood ) but there are days where I just feel like I am all out of spoons and my nose feels like some one put ice cubes in it. I was going to an ent tomorrow but cancelled since I will go to CC in a few weeks. And go see my optomologist on the 29th cuz my eyes have been so blurry ( but not red like yours Alysia ).Oh well if its not one thing its another just gotta keep on going.

[Helen]

During one of my E.R experiences, which required admittance and isolated for 3 days to a room where there were no Drs. I was originally carried to E.R very sick, not lucid to be able to communicate. It appears E.R only ran the usual basic work up. No one would discuss my E.R lab work/results later. They evaded to ask me anything of my symptoms during my stay, but same time I was so heavily sedated that I could not get up to use the washroom. Even the much later follow-up to the ENT Dr. appt. at the same hospital would not discuss the results. Claimed "perplexed".

I do not have the knowledge to understand these results which is frustrating. i learned much later by getting my blood-work report that I had, (like many times before): elevated WBC in Neuts. and ABS Neuts, Echinocytes, Ovalocytes, very low Lymphs. high glucose level. The extreme one was very high "CRP High Sens." at: 110.5 (ref. range is <10.0). What is CRP?! I do not see anything of the word "Anca", and it appears they did not run a full metabolic panel. Along with this my basic 5mm "head" CT reported "Chronic inflammation in bilateral ethmoid and sphenoid sinuses.".... "cannot exclude infection in the mastoid" region. Next I was hooked up to IV of Narcotics, totally sedate to prevent me from being able to communicate. None of the Drs. sat down or discussed anything to me during this whole time.

Yet, with this data, all of the unseen Drs. reported to be "baffled", claiming to not see anything wrong to assess further. The Hospital otolaryngologist threw his report in my file that he "could not see anything wrong and there was nothing further he could do"(without any assessments!!) I was released with around 3 Antidepressant and anxiety/narcotic prescriptions which only made me much worse by giving me head zaps ON TOP of this ongoing illness. My suffering and pain of this continues to current.

Does anyone here have any knowledge or familiarity to having these SAME type of results? Your feedback would be so much appreciated to try help guide me out of this. Thank you - H.

[vdub]

No one on this forum is a doctor, Helen. All we can do is relate our own experiences which may or may not be like yours. Best advice is to do as your doctors say. They know best. I hope things get better for you.

[Helen]

No one on this forum is a doctor, Helen. All we can do is relate our own experiences which may or may not be like yours. Best advice is to do as your doctors say. They know best. I hope things get better for you.

The irony is, I'm here "on topic", but yet redirected.
I totally disagree. That comment was aggravating and ignorant, to quickly jump into assuming that all Drs know best. I hear this phrase often from senior citizens where many don't even know what pills they're ingesting in their -A.M, Noon, Mid Aft. Evening. Bedtime pillboxes. You have no idea what has and had transpired in my life due to incompetent and unethical physicians who did/do not have the knowledge, causing further harm due to my prior naivety in trusting "to do as your doctors say".
Drs. are not Gods. So many here have tried in vain for years to seek a "DR" to listen and were in the wrong hands - No? This is where I'm at. Patient have the right to understand what the "best" Drs. are doing behind the curtain with the controls. To be transparently informed and understand their results/reports. If the Dr. does not know and it's not said, then what? We ask the public for support.
Communication is a very critical necessity for appropriate care.

If you read my post carefully Vdub, you will see there was no "advice", nor discussion at ANY time. NOTHING. This is just one experience of many. And I am unable to return to find out. Is this what Drs. do best? I managed to order the reports a year later to observe these findings. So, HOW am I able to follow or understand what some of these results/terminology mean, when it hasn't been discussed? Again, there's no Dr. Sure- go "google" it, but it's ambiguous. I came here in the hopes to gain some new knowledge and advocacy from others to help move forward, not just compare and share ailments as if in a nursing home. To provide my own input on certain subjects that may be beneficial to others which in turn be aware of what to ask their "best" Dr. next time.
Knowledge is key. I have observed some intelligent participants on the forum, with the possibility of some in the medical sector who may be of help to provide some input that's outside your discipline. Thanks. -H.

[seied]

My experience was that my Primary Care Physician ordered blood work which came back "normal." A few days later, a rheumatologist ordered another blood work which came back with the Wegener's GPA diagnosis. Rheumatologists know what to order.

Ed.

[Helen]

My experience was that my Primary Care Physician ordered blood work which came back "normal." A few days later, a rheumatologist ordered another blood work which came back with the Wegener's GPA diagnosis. Rheumatologists know what to order.

Ed.

That was helpful - thanks Ed. It appears those in the field of Rheumatology may be the only ones who appear to recognize the reasoning of all this specific type of inflammation in bloodwork to be able to understand this. What about Immunologists - would they also be familiar with this?

My question about this "Anca". Is the exact word "Anca" on blood-panel reports, or is it classified under a different term? What should I be looking for to see if this was done as perhaps I may have. Please correct me if I am wrong, but it appears this this test is useful ONLY when one has a present flare-up, as it will not show up with those in remission?

I need to be my own self advocate to educate myself to understand when reviewing my records to make copies to provide all these findings to the next appropriate Dr. which takes months to see (and once in, the time is rushed) including with the GP. I like to be prepared, write questions down ahead of time to avoid further delay in care. But I cannot do this without knowing what to do or ask and is why information and input from those here is helpful. Thank you -H.

[seied]

That was helpful - thanks Ed. It appears those in the field of Rheumatology may be the only ones who appear to recognize the reasoning of all this specific type of inflammation in bloodwork to be able to understand this. What about Immunologists - would they also be familiar with this?

My question about this "Anca". Is the exact word "Anca" on blood-panel reports, or is it classified under a different term? What should I be looking for to see if this was done as perhaps I may have. Please correct me if I am wrong, but it appears this this test is useful ONLY when one has a present flare-up, as it will not show up with those in remission?

I need to be my own self advocate to educate myself to understand when reviewing my records to make copies to provide all these findings to the next appropriate Dr. which takes months to see (and once in, the time is rushed) including with the GP. I like to be prepared, write questions down ahead of time to avoid further delay in care. But I cannot do this without knowing what to do or ask and is why information and input from those here is helpful. Thank you -H.

Weg's/GPA should be managed treated by a rehumatologist.
In my case, Anca was used to diagnose me for the first time. I'm too new, I'm on treatment and too soon to know if I'm in remission.
if you're in remission and suddenly find yourself afflicted by an unexpected symptom or relapse of GPA, persist with your doctor and have them move your appointment to no more than a few days away. You don't have the luxury to wait. Secretaries/assistants don't know much. Last resort, simply show up without an appointment.
Again, make sure that you have a rheumatologist and that he/she knows how to treat this disease.

Ed.

[drz]

Weg's/GPA should be managed treated by a rehumatologist.
In my case, Anca was used to diagnose me for the first time. I'm too new, I'm on treatment and too soon to know if I'm in remission.
if you're in remission and suddenly find yourself afflicted by an unexpected symptom or relapse of GPA, persist with your doctor and have them move your appointment to no more than a few days away. You don't have the luxury to wait. Secretaries/assistants don't know much. Last resort, simply show up without an appointment.
Again, make sure that you have a rheumatologist and that he/she knows how to treat this disease.

Ed.

There are many GPA experts that are not rheumatologists and these are usually listed in the Vasculitis web site. The advice to find a GPA expert or some one who is at least familiar and experienced in treating GPA has been the most often advice given any new member. It is also very important that your treating doctor be some one you feel you can trust. This usually involves listening to you and understanding your concerns and being able to explain medical things to you or who ever directs your health care in a manner you can understand.

If you can't find a recognized GPA expert, I think your best bet for getting adequate care is usually a rheumatolgist at a big university medical school since they are more likely to be aware of research in treatment.

[seied]

Wikipedia: Rheumatologists deal mainly with clinical problems involving joints (https://en.wikipedia.org/wiki/Joints), soft tissues (https://en.wikipedia.org/wiki/Soft_tissue), autoimmune diseases (https://en.wikipedia.org/wiki/Autoimmune_diseases), vasculitides (https://en.wikipedia.org/wiki/Vasculitis), and heritable connective tissue disorders.
Many of these diseases are now known to be disorders of the immune system (https://en.wikipedia.org/wiki/Immune_system). Rheumatology is increasingly the study of immunology (https://en.wikipedia.org/wiki/Immunology).Rheumatologists treat arthritis (https://en.wikipedia.org/wiki/Arthritis), autoimmune (https://en.wikipedia.org/wiki/Autoimmune) diseases, pain disorders affecting joints, and osteoporosis (https://en.wikipedia.org/wiki/Osteoporosis). There are more than 200 types of these diseases, including rheumatoid arthritis (https://en.wikipedia.org/wiki/Rheumatoid_arthritis), osteoarthritis (https://en.wikipedia.org/wiki/Osteoarthritis), gout (https://en.wikipedia.org/wiki/Gout), lupus (https://en.wikipedia.org/wiki/Systemic_lupus_erythematosus), back pain, osteoporosis (https://en.wikipedia.org/wiki/Osteoporosis), and tendinitis (https://en.wikipedia.org/wiki/Tendinitis). Some of these are very serious diseases that can be difficult to diagnose and treat. They treat soft tissue problems related to musculoskeletal system sports related soft tissue disorders.

--
A rheumatologist with experience in treating GPA and who works at a big university medical school is your best bet.

Ed.

[Alysia]

The irony is, I'm here "on topic", but yet redirected.
I totally disagree. That comment was aggravating and ignorant, to quickly jump into assuming that all Drs know best. I hear this phrase often from senior citizens where many don't even know what pills they're ingesting in their -A.M, Noon, Mid Aft. Evening. Bedtime pillboxes. You have no idea what has and had transpired in my life due to incompetent and unethical physicians who did/do not have the knowledge, causing further harm due to my prior naivety in trusting "to do as your doctors say".
Drs. are not Gods. So many here have tried in vain for years to seek a "DR" to listen and were in the wrong hands - No? This is where I'm at. Patient have the right to understand what the "best" Drs. are doing behind the curtain with the controls. To be transparently informed and understand their results/reports. If the Dr. does not know and it's not said, then what? We ask the public for support.
Communication is a very critical necessity for appropriate care.

If you read my post carefully Vdub, you will see there was no "advice", nor discussion at ANY time. NOTHING. This is just one experience of many. And I am unable to return to find out. Is this what Drs. do best? I managed to order the reports a year later to observe these findings. So, HOW am I able to follow or understand what some of these results/terminology mean, when it hasn't been discussed? Again, there's no Dr. Sure- go "google" it, but it's ambiguous. I came here in the hopes to gain some new knowledge and advocacy from others to help move forward, not just compare and share ailments as if in a nursing home. To provide my own input on certain subjects that may be beneficial to others which in turn be aware of what to ask their "best" Dr. next time.
Knowledge is key. I have observed some intelligent participants on the forum, with the possibility of some in the medical sector who may be of help to provide some input that's outside your discipline. Thanks. -H.

I agree with you, Helen. We must be our own best docs. It means that we need to know as much as possible about WG, symptoms, tests, treatments. We need to question and challenge every dr. And give him the credit only after he showed us that he deserves it.

[Alysia]

That was helpful - thanks Ed. It appears those in the field of Rheumatology may be the only ones who appear to recognize the reasoning of all this specific type of inflammation in bloodwork to be able to understand this. What about Immunologists - would they also be familiar with this?

My question about this "Anca". Is the exact word "Anca" on blood-panel reports, or is it classified under a different term? What should I be looking for to see if this was done as perhaps I may have. Please correct me if I am wrong, but it appears this this test is useful ONLY when one has a present flare-up, as it will not show up with those in remission?

I need to be my own self advocate to educate myself to understand when reviewing my records to make copies to provide all these findings to the next appropriate Dr. which takes months to see (and once in, the time is rushed) including with the GP. I like to be prepared, write questions down ahead of time to avoid further delay in care. But I cannot do this without knowing what to do or ask and is why information and input from those here is helpful. Thank you -H.

As for anca:

There are 4 blood tests included in the anca battery:

C-anca and PR3
P-anca and MPA

For weggies usually the C-anca is relevant. Some of us, but not all of us, can get positive C-anca and higher then the normal pr3. C-anca is positive only in WG and in Crohns' disease. So positive C-anca and or higher then normal PR3 are indicators for wg activity. For me, for example, in the onset I had high positive C-anca. My pr3 is becoming elavated when flare is coming.

BUT -
Not all weggies are C-anca positive. Some get negative but they still have wg. But if you are positive, you have wg and it is active.

Please ask whatever you feel like.

Welcome to the forum.

[Alysia]

During one of my E.R experiences, which required admittance and isolated for 3 days to a room where there were no Drs. I was originally carried to E.R very sick, not lucid to be able to communicate. It appears E.R only ran the usual basic work up. No one would discuss my E.R lab work/results later. They evaded to ask me anything of my symptoms during my stay, but same time I was so heavily sedated that I could not get up to use the washroom. Even the much later follow-up to the ENT Dr. appt. at the same hospital would not discuss the results. Claimed "perplexed".

I do not have the knowledge to understand these results which is frustrating. i learned much later by getting my blood-work report that I had, (like many times before): elevated WBC in Neuts. and ABS Neuts, Echinocytes, Ovalocytes, very low Lymphs. high glucose level. The extreme one was very high "CRP High Sens." at: 110.5 (ref. range is <10.0). What is CRP?! I do not see anything of the word "Anca", and it appears they did not run a full metabolic panel. Along with this my basic 5mm "head" CT reported "Chronic inflammation in bilateral ethmoid and sphenoid sinuses.".... "cannot exclude infection in the mastoid" region. Next I was hooked up to IV of Narcotics, totally sedate to prevent me from being able to communicate. None of the Drs. sat down or discussed anything to me during this whole time.

Yet, with this data, all of the unseen Drs. reported to be "baffled", claiming to not see anything wrong to assess further. The Hospital otolaryngologist threw his report in my file that he "could not see anything wrong and there was nothing further he could do"(without any assessments!!) I was released with around 3 Antidepressant and anxiety/narcotic prescriptions which only made me much worse by giving me head zaps ON TOP of this ongoing illness. My suffering and pain of this continues to current.

Does anyone here have any knowledge or familiarity to having these SAME type of results? Your feedback would be so much appreciated to try help guide me out of this. Thank you - H.

I am so sorry that you had such an aweful experience.
WBC above the normal and also CRP above the normal are indicators for an infection/ inflamation going on somewhere in the body.
It can be an infection as a result of germs and or an auto immune infection, meaning WG activity.
If I understand correctly your CT results, it means that you have an infection in the sinuses, which is very common for weggies. Do you have nose bleedings ? Crustings ? What brought you to the ER ? What symptoms do you have ? Sorry if I ask about something which you wrote somewhere else here.

[Helen]

I am so sorry that you had such an aweful experience.
WBC above the normal and also CRP above the normal are indicators for an infection/ inflamation going on somewhere in the body.
It can be an infection as a result of germs and or an auto immune infection, meaning WG activity.
If I understand correctly your CT results, it means that you have an infection in the sinuses, which is very common for weggies. Do you have nose bleedings ? Crustings ? What brought you to the ER ? What symptoms do you have ? Sorry if I ask about something which you wrote somewhere else here.

Hello Alysia, thank you for your willingness to help share info. and understanding. That was just -one- of few horrible experiences. A reason to much of my frustration is because I've become further deafened from this, so my communication abilities are now much more limited. I noticed many weggies on the forum have hearing-loss to some degree, so I'm sure they can relate in some way to how difficult it is to to retrieve information, esp. none at all. My remaining energy is desperately trying to get any form of appropriate care and answers to this while I'm still capable. I have been consistently ill non-stop for over 5 yrs. The illness factor immediately worsened after another "unusual" anesthesia complication requiring a week of hospitalization. This impact continues to horribly effect me today because of the circumstances which is not reported. I believe it's critical for weggies to be aware of what specific anesthesia can do, because of it's respiratory effects.

Yes, you are right, along with abnormal blood-work in just past 4 yrs. the word “unusual” (unknown cause) was often next to: Influenza A, high level of Strep. Staph. Bronchitis. Shingles. OMs w/ effusion, retracted eardrums, ear pressure, sore throats, perforated septum, polyps, hives, smell and taste loss, migraines. The chronic vibrating roaring tinnitus is unbearable. Ultra-sensitive to cold temps.
Most recent: Progressive gastro. issues of (again) unknown cause. The Gastro. specialist was polite but unable (or not want) to discuss outside the box (or should I say anal?) to review my health history and the staff prescribed more drugs.
Lifetime?: VERY susceptible to catching contagions. “Unusual” allergens, chronic sinus issues, hives and lung infections which affects my ears. This eventually progressed to UTIs, chronic asthma requiring hospitalizationfor oxygen & partial lung collapse. Multiple nasal surgeries, ex. collapsed turbinates, polyps with now all 4 sinuses being compromised to my ears to be chronically dysfunctional... and yet, Specialists and ER Drs. are STILL “perplexed” what I may be ill from.

Another Fact: every Imaging reports something on the sinuses/septum. Progressive Chronic Sinus Disease. Ex."mucosal thickening in bilateral ethmoid and sphenoid sinuses, likely related to chronic inflammation".. but does not exclude infection in mastoid”. ...recurring mastoiditis...boggy, hypertrophic turbinates etc. List is long w/ unfamiliar terminology no one will discuss in past 5 yrs. For some reason, the nasal anatomy is consistently IGNORED even during inflammation/infections, as it's deem NOT pertinent to perhaps THIS to being the very cause & effect to my health all this time. This has been a very long-standing progressive problem, vicious cycles of hospital admittances with "No further work-up", but to “Follow-up with your GP on a plan". By the time I see my GP (1-2 mos. wait) my health has fluctuated again with the repeated “Don't know” *shrugs*. Referrals back to the SAME two specialties: Neuros. & ENTs (4-6 mos. wait) who once again, redirect, state it's beyond their expertise when trying to point out these factual symptoms, concerns and ask questions. It's very demoralizing. -H.

[Pete]

Helen. You mention having seen several specialists without getting any relief. Perhaps it’s time to see a bona fide Vasculitis specialist or have one of your doctors consult with one. I hope there is one near you listed on the Vasculitis Foundation’s website.

[Helen]

@Helen (https://www.wegeners-granulomatosis.com/forum/member.php?u=9784). You mention having seen several specialists without getting any relief. Perhaps it’s time to see a bona fide Vasculitis specialist or have one of your doctors consult with one. I hope there is one near you listed on the Vasculitis Foundation’s website.

Thanks Pete. Yes - since the helpful info. here, I have been trying to.
Insurance informed that it did not require a referral which is good news. The bad news, is the (booked 2 mos.) Rheumatology office won't provide an appointment slot without one.
My GP is also booked for the next 2 months when all I need is a referral. So, at this time, I've been trying to find a bit faster approach to reach my GP, to simply get this before Summer. The process seems to be as bad as the automated phone menus, with the long wait resulting in: "...due to high volumes of calls, we cannot take your msg at this time" *click* Still trying. -H.

[Pete]

Helen. I think you should call your PCP and ask him to make a referral by phone.

My insurance was ok with me making an appointment at Cleveland Clinic via self referral.

[drz]

Thanks Pete. Yes - since the helpful info. here, I have been trying to.
Insurance informed that it did not require a referral which is good news. The bad news, is the (booked 2 mos.) Rheumatology office won't provide an appointment slot without one.
My GP is also booked for the next 2 months when all I need is a referral. So, at this time, I've been trying to find a bit faster approach to simply get this before Summer. The process seems to be as bad as the automated phone menus, with the long wait resulting in: "...due to high volumes of calls, we cannot take your msg at this time" *click* Still trying. -H.

Use a walk in service or ER at hospital to get an immediate referral if you are having symptoms that warrant immediate attention.

[seied]

Can you bring someone with you to help with communications?
ER at Cleveland clinic sounds like the best option right now.

I'm too new at this, but others here may confirm that these ongoing symptoms for 5 years may indicate full-blown wegener's because your doctors have failed to get you in remission.

Do we know a weggie in her town that perhaps can assist Helen with dealing doctors?
Where do you live?

Ed.

[Bing505z]

My experience was that my Primary Care Physician ordered blood work which came back "normal." A few days later, a rheumatologist ordered another blood work which came back with the Wegener's GPA diagnosis. Rheumatologists know what to order.

Ed.

Your primary care physician should be able to order the right tests. If not, change your primary to an internist who can. Simple as that. If you live in the sticks, then I would suggest relocating near a medical center with physicians who are capable of handling this disease. People with cancer fly from all over the world to the largest medical complex in the world, the Texas Medical Center in Houston, TX, the forefront of advancing life sciences, to receive treatment. I would do the same with this vasculitis which is worse than cancer. I spoke with a lung surgeon at St. Luke’s in Houston, and he told me that St. Luke’s years ago began a protocol of testing for GPA and other forms of vasculitis when patients had unexplained sinus, lung, and other issues. Months, weeks, and even days are crucial here with GPA, so many know it all too well. That was a lung doctor saying this not a rheumatologist, at St. Luke’s, not some yada yada vasculitis center. I see many are hung up on it. I was seen by ENT who noticed something unusual with me and referred me to a pulmonologist who hospitalized me and along with a disease specialist/pathologist pulled 100 some tubes of blood from me upon admission and diagnosed me with GPA. I later pulled a copy of my files from that hospital, and I went through all the notes, and I could step by step, and idea by idea, and every scribble and marked out disease until right in the center of one page vasculitis was circled. I was wheeled into surgery, and they pulled a sample from my nose and my lung and it was confirmed, and it was that pulmonologist who treated me and turned things around...not a rheumatologist. Bottom line, it is inexcusable for any doctor to talk down to you, it is inexcusable for any doctor to not know what test to run. It is your money paying for your medical treatment, demand the best. I am not saying be difficult, but geez do not settle for mediocre blah blah blah, it is your life so get someone who knows what to do and puts you first. Do not settle for a clock watcher, patient herder and number biller.

[seied]

Your primary care physician should be able to order the right tests. If not, change your primary to an internist who can. =.

Correct! That's exactly what I did, I changed my PCP.
In my case GPA showed up as arthritis, so I sought a rheumatologist right away.
Your answer is spot on, I wish it could be pinned for all the newbies to read.

Ed.

[Bing505z]

Correct! That's exactly what I did, I changed my PCP.
In my case GPA showed up as arthritis, so I sought a rheumatologist right away.
Your answer is spot on, I wish it could be pinned for all the newbies to read.

Ed.

…Rheumatologist…and Internist…whatever…the person who digs in, runs the tests, does not stop until you the patient are on the road to remission. Let’s say you pick the rheumatologist in your local area, and since this is a rare disease, I would put long money on that this rheumatologist probably has not treated someone with GPA, or maybe just had one previous vasculitis patient. If this is a good Doc, with all the resources in this day, this Doc should be able to reach out and get you on the right treatment. I had a pulmonologist do just that for me, so if you have Docs twit-tiling their thumbs and scratching their heads and ass, bewildered by confusing symptoms while leaving you to ask on a forum why your ear is killing you and why your nose feels like hell itself….in todays world of tech connecting all these docs together, well damn your doc or ER or whatever clinic are a bunch of lazy #*@## and you need to change your situation.

[seied]

….in todays world of tech connecting all these docs together, well damn your doc or ER or whatever clinic are a bunch of lazy #*@## and you need to change your situation.

I've been recently diagnosed and have a good team of doctors working on my case. I don't know firsthand how things will be long term with this condition.

I read horror stories everywhere of people with GPA that over the years have suffered permanent damage due to late diagnosis, non-response to treatment, smoldering GPA, etc. I wonder if all that damage could have been prevented?

Ed.

[Bing505z]

I've been recently diagnosed and have a good team of doctors working on my case. I don't know firsthand how things will be long term with this condition.

I read horror stories everywhere of people with GPA that over the years have suffered permanent damage due to late diagnosis, non-response to treatment, smoldering GPA, etc. I wonder if all that damage could have been prevented?

Ed.

I'm sure that damage could have been prevented.

[Helen]

Hi, thank you all for taking the time and "Get it" to understand some of my frustrations. For so long, I've had questions which I am still struggling to get answers to. The Drs. I've seen over the years repeatedly were mainly: PCP, ENT, Neurology, Psychiatry and now Gastro. All remain “baffled” yet, I was denied even video-nasalscopy which someone on the forum mentioned to easily get. I did ASK for this along with other reasonable non-invasive technical tests in the last 1.5 yrs but denied.

Question: Do Weggies blood-work and health fluctuate like this?
Currently, I am (once again) at the ongoing sick “from something” & in survival mode. Physical activity increases the symptoms. I am not in "Distress" to require E.R. at this time. I have been basically living in a bubble since my last hospitalization, because the isolation has somewhat helped from not catching any public contagions. My current symptoms continues with the Nose, Ear and unfort. now Gastro. My lungs are not compromised at this time, but I do get out of breath easily now and I don't know why. I am thin. I tried to mention some of this to the latest Dr. -the Gastro...of any connection to this? They state it's not their area and did not believe so. My sense nags me that there is.

Bing: My long-term chronic asthma/bronchial issue is under control because of my change in environment. I am not in “lung distress" to require a pulmonologist at this time. I DID try to make an appt. today with a Specialist under the “Vasculitis Foundation” at the MAYO clinic and was denied by Scheduling. Reception refused based on her assumption of my condition to warrant an appt. Even with rheumatism, I was told “No, sorry, go see an Allergist". And that the Pulmonologist/Critical Care Specialist does not work in any area of Rheumatology, Respiratory or Immunology Disorders!? I didn't think Schedulers had the medical bkgnd to quickly assert their opinions on patients to deny them appts.

Seied: I also tried to make an appt. with a “Rheumatologist”. I'm unable to because the last basic bloodwork from my GP 4 mos. ago was “fine” which had them determine there was no need, (even though prior bloodwork was not). SO! All I was able to do once again, was make another redundant appt. with my GP. A horrible, expensive cycle. Approx. $400,000 has been spent in 4 yrs.

The computerized medical portal system causes a lot of grief because all medical staff (including scheduling) access this when they request your “Name and date of Birth” to “pull up your file” to review. It's shared all over. "Hippa Law" is bogus. I'm repeatedly given excuses of being “too complicated beyond their expertise” to be seen/evaluated and redirected back to the same Otolaryngology dept. who have hypothesized over the last 4 yrs. with no sinus assessments to my ears all this time.
The condescending responses and continuous denial for care, even from Schedulers in this manner is really demoralizing.
I apologize for such a long note. -H.

[Bing505z]

Well, Helen I hope you do get to feeling better and just wanted you to know what I put above was just an example, you know, something that worked for me and wasn't really saying you need to see a pulmonologist. So, sorry about that and well..you know, while I do understand that it gets frustrating when you are sick, and at times you get stressed, sometimes it is really, really great just to talk about it..you know, how one feels and all and get things out and maybe just relax a little. You know, it's like therapeutic and all, speaking of that I noticed you put above that you've seen a psychiatrist. Maybe making an appointment and talking things out could help with the anguish and stress and all, maybe an Rx or 2 to help take the edge off ...just a thought. Anyhoo, I do hope you get to feeling better. Cheers!:smile1:

[Alysia]

Hello Alysia, thank you for your willingness to help share info. and understanding. That was just -one- of few horrible experiences. A reason to much of my frustration is because I've become further deafened from this, so my communication abilities are now much more limited. I noticed many weggies on the forum have hearing-loss to some degree, so I'm sure they can relate in some way to how difficult it is to to retrieve information, esp. none at all. My remaining energy is desperately trying to get any form of appropriate care and answers to this while I'm still capable. I have been consistently ill non-stop for over 5 yrs. The illness factor immediately worsened after another "unusual" anesthesia complication requiring a week of hospitalization. This impact continues to horribly effect me today because of the circumstances which is not reported. I believe it's critical for weggies to be aware of what specific anesthesia can do, because of it's respiratory effects.

Yes, you are right, along with abnormal blood-work in just past 4 yrs. the word “unusual” (unknown cause) was often next to: Influenza A, high level of Strep. Staph. Bronchitis. Shingles. OMs w/ effusion, retracted eardrums, ear pressure, sore throats, perforated septum, polyps, hives, smell and taste loss, migraines. The chronic vibrating roaring tinnitus is unbearable. Ultra-sensitive to cold temps.
Most recent: Progressive gastro. issues of (again) unknown cause. The Gastro. specialist was polite but unable (or not want) to discuss outside the box (or should I say anal?) to review my health history and the staff prescribed more drugs.
Lifetime?: VERY susceptible to catching contagions. “Unusual” allergens, chronic sinus issues, hives and lung infections which affects my ears. This eventually progressed to UTIs, chronic asthma requiring hospitalizationfor oxygen & partial lung collapse. Multiple nasal surgeries, ex. collapsed turbinates, polyps with now all 4 sinuses being compromised to my ears to be chronically dysfunctional... and yet, Specialists and ER Drs. are STILL “perplexed” what I may be ill from.

Another Fact: every Imaging reports something on the sinuses/septum. Progressive Chronic Sinus Disease. Ex."mucosal thickening in bilateral ethmoid and sphenoid sinuses, likely related to chronic inflammation".. but does not exclude infection in mastoid”. ...recurring mastoiditis...boggy, hypertrophic turbinates etc. List is long w/ unfamiliar terminology no one will discuss in past 5 yrs. For some reason, the nasal anatomy is consistently IGNORED even during inflammation/infections, as it's deem NOT pertinent to perhaps THIS to being the very cause & effect to my health all this time. This has been a very long-standing progressive problem, vicious cycles of hospital admittances with "No further work-up", but to “Follow-up with your GP on a plan". By the time I see my GP (1-2 mos. wait) my health has fluctuated again with the repeated “Don't know” *shrugs*. Referrals back to the SAME two specialties: Neuros. & ENTs (4-6 mos. wait) who once again, redirect, state it's beyond their expertise when trying to point out these factual symptoms, concerns and ask questions. It's very demoralizing. -H.

Thank you for sharing, Helen. That's a long painful and frustrating list. I am sorry. Dont give up. Insist on getting a better care. I understand how tough it is to be so sick and needs to fight for a decent treatment. You have our support. Please update us.

[Alysia]

Hi, thank you all for taking the time and "Get it" to understand some of my frustrations. For so long, I've had questions which I am still struggling to get answers to. The Drs. I've seen over the years repeatedly were mainly: PCP, ENT, Neurology, Psychiatry and now Gastro. All remain “baffled” yet, I was denied even video-nasalscopy which someone on the forum mentioned to easily get. I did ASK for this along with other reasonable non-invasive technical tests in the last 1.5 yrs but denied.

Question: Do Weggies blood-work and health fluctuate like this?
Currently, I am (once again) at the ongoing sick “from something” & in survival mode. Physical activity increases the symptoms. I am not in "Distress" to require E.R. at this time. I have been basically living in a bubble since my last hospitalization, because the isolation has somewhat helped from not catching any public contagions. My current symptoms continues with the Nose, Ear and unfort. now Gastro. My lungs are not compromised at this time, but I do get out of breath easily now and I don't know why. I am thin. I tried to mention some of this to the latest Dr. -the Gastro...of any connection to this? They state it's not their area and did not believe so. My sense nags me that there is.

Bing: My long-term chronic asthma/bronchial issue is under control because of my change in environment. I am not in “lung distress" to require a pulmonologist at this time. I DID try to make an appt. today with a Specialist under the “Vasculitis Foundation” at the MAYO clinic and was denied by Scheduling. Reception refused based on her assumption of my condition to warrant an appt. Even with rheumatism, I was told “No, sorry, go see an Allergist". And that the Pulmonologist/Critical Care Specialist does not work in any area of Rheumatology, Respiratory or Immunology Disorders!? I didn't think Schedulers had the medical bkgnd to quickly assert their opinions on patients to deny them appts.

Seied: I also tried to make an appt. with a “Rheumatologist”. I'm unable to because the last basic bloodwork from my GP 4 mos. ago was “fine” which had them determine there was no need, (even though prior bloodwork was not). SO! All I was able to do once again, was make another redundant appt. with my GP. A horrible, expensive cycle. Approx. $400,000 has been spent in 4 yrs.

The computerized medical portal system causes a lot of grief because all medical staff (including scheduling) access this when they request your “Name and date of Birth” to “pull up your file” to review. It's shared all over. "Hippa Law" is bogus. I'm repeatedly given excuses of being “too complicated beyond their expertise” to be seen/evaluated and redirected back to the same Otolaryngology dept. who have hypothesized over the last 4 yrs. with no sinus assessments to my ears all this time.
The condescending responses and continuous denial for care, even from Schedulers in this manner is really demoralizing.
I apologize for such a long note. -H.

As for blood work: I had few flares. Only in 2 of them my blood tests showed dramatic abnormal results. In other flares and also when my WG is active on "low level" (we call it smoldering) my blood tests dont show the WG activity. Vasculitis specialist should know not to judge according to the blood tests alone but to look at all the symptoms. And you sure have enough of them.

What gastro symptoms do you have ?

[Helen]

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.

[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?



.

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.

Sent from my MotoE2(4G-LTE) using TapatalkAlso, 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.