Diagnosis of WG/GPA by biopsy how is it performed?

[stephwest]

Diagnosis of WG/GPA by biopsy how is it performed?
I was told the only positive test for WG/GPA is a biopsy.

1/ How is it done?
2/ On what organ or tissue?
3/ Is it a positive result yes/no?
4/ Are there other tests now?
5/ Is a biopsy dangerous or painful, does it require an anaesthetic.

How many members have had a biopsy and how were the results displayed eg yes or no or numbers on a scale 0-100?

Please give as much info as possible as I cant find much re google etc

Many Thanks
Stephen

[Dirty Don]

I had a lung biopsy, was in a coma so knew nothing until later. Evidently, it was easy as the surgeon found a way in between the ribs...sheesh. I was very sore under the right armpit for quite a while...guess they had me unconscious so they just threw my arm over my head to get it out of the way. It was a 'positive' result, in that the WG was there and active. Don't know of other tests more efficient than that...mostly it depends on if the area being looked at/scraped has an active spot that can be identified as such. A nasal biopsy needs at least a local, I'd prefer being knocked out. The lung bio can be hit and miss, but if your lungs looked like mine, there wasn't much to miss! Best to you...it's still the only real way to determine WG dx...all the tests are basically indicators but not necessarily true in the case of WG.

[Gracie]

Hi Stephen-

I was diagnosed a little over a month ago with WG/GPA. I had severe chest pain (like someone was stabbing an 8" kitchen knife through my chest every time I tried to take a breath) so I went to the ER thinking I was having a heart attack, and they took a chest x-ray. Turns out, some "stuff" two "lingular masses" showed up on the x-ray so my primary care doctor had me get a CT Scan to make sure it wasn't something bad....well, the CT Scan showed, not two masses, but 30-40 masses (or what I now know them to be 'granulomas') and one of them (the one causing the pain) was over 3cm (about three fingers width). They thought I might have a tumor because of how severe and how many lumps they found in the CT scan, so my pulmonologist scheduled me to get a lung biopsy of the lump (granuloma tissue). So for me, my biopsy was a CT-Guided biopsy done by the Radiologist at the hospital. They scan you a few times and then the radiologist looks at the images and decides which is the best way for them to access the tissue. For me it was over my left breast because that's where my largest lump is. The procedure only takes about 30-40 mins total. They gave me a sedative (vallium) and a pain killer (morphine) through an IV drip. They have to control the amount of drugs they give you so you do not pass out completely because you need to be breathing regularly for the radiologist to do his job correctly. They also had me hooked up to a blood pressure monitor and a pulse/O2 finger monitor to check those vitals while they were doing the procedure. They use a "screw-like" hollow needle to extract the tissue. Sorry, that description sounds way scarier than the actual device, but essentially they make a small cut in your chest (less than a cm) and use the needle/drill thing to extract 3 different pieces of the tissue. Then they put the tissue samples on petree-dishes and look at them under a microscope to see what you have. For me, they had to make sure it wasn't cancer, they also were looking for WG, and the third test was to make sure it wasn't a mold that was causing my lumps. Sorry for the long extended answer. I'll try to answer your questions more simply....
1. Yes, to make sure it's WG they need to do a biopsy
2. My biopsy was taken from my lungs, from the tissue of my largest granuloma
3. The test comes back positive or negative (ie. they will be able to say "yes you have WG" or "no it's not WG")
4. I don't know about other tests, they made it pretty clear to me that the lung biopsy was my only choice
5. The biopsy can be dangerous. I'm a weird WG candidate because I'm only 24 years old and most people (from what I've read) are 40 or older when they're diagnosed. But a lung biopsy can be dangerous, when and if, the lung collapses. My pulmonologist explained it to me like this: your lungs are like a vacuum made up of hundreds of little air sacks (like grapes) and when the sacks get punctured they will collapse. Now, that is natural, when they did my biopsy the little grape clusters around my granuloma did collapse when the radiologist punctured my lung, but because that was only a small area of grapes that got punctured, the entire lung did not collapse (vacuum in on itself). Your lungs are strong enough to have only a couple grapes collapse and then naturally your body refills them with air and they're good again. The complication of a real lung collapse can happen and is a higher risk for older patients, although, even still it's very low, like 10-20% of people and they are usually 60+ in age. The good thing is that if your lung does collapse they know exactly how to fix it and no one dies from a lung collapse. They hold you in the hospital for 24 hours as they re-inflate your lung. For me, what happened after the procedure was they held me in the hospital bed for 4 hours to monitor me before they released me. They took chest x-rays every 30mins to monitor my lungs (make sure they weren't collapsing) and they had a blood pressure monitor and O2/pulse monitors on me for the whole 4 hours. I will not lie, it was painful, but not during the procedure because they give you the vallium and the morphine. But the two days following the procedure it felt like I had that 8" chef's knife stabbing me. I hate pain medications because they make me sick, but I took a codeine/acetaminophen every 4 hours for 36 hours after the biopsy just so I could sleep. Luckily after two days of healing, the pain was manageable enough for me to switch back to ibuprofen again and I got to stop taking the big pain meds.

I'm sorry if I rambled on too long. I hope some of this was helpful. If you have any other questions or concerns I'd be happy to help you out. It's a scary thing to think about and no one should have to go through it alone.

Best,
Gracie




Diagnosis of WG/GPA by biopsy how is it performed?
I was told the only positive test for WG/GPA is a biopsy.

1/ How is it done?
2/ On what organ or tissue?
3/ Is it a positive result yes/no?
4/ Are there other tests now?
5/ Is a biopsy dangerous or painful, does it require an anaesthetic.

How many members have had a biopsy and how were the results displayed eg yes or no or numbers on a scale 0-100?

Please give as much info as possible as I cant find much re google etc

Many Thanks
Stephen

[pberggren1]

Hi Gracie,

Welcome to the family. I was 26 when I first got sick with Wegs and am now 37. We look forward to getting to know you.

[NikkiNicole]

I am 33 and was diagnosed almost 6 months ago after a 6ish month diagnosis process. I had a multitude of blood tests, CT scans, x-rays, MRIs, a PET scan, a bone marrow biopsy, a gland removal and then finally ... a lung biopsy. The lung biopsy was dangerous but the most painless test that I went through in all of this. I had an excellent doctor handling it. He made me feel at ease with his demeanor and then they had just the right amount of medications and I didn't even feel a thing. I heard a few noises which sounded like him taking a cap off a pen and putting it back on and then he was done.
My test was originally deemed "negative" by my first rheumatologist however ... the biopsy was done because they thought the spot in my lung was cancer. So ... the pathologist noted it was a granuloma but, not cancer.
My NEW and awesome rheumatologist called 3 Stanford Pathologists and spoke with them and ... yes, they agreed it was Wegener's. I've been on my medication regime ever since. I haven't yet felt good ... but I am sure that is in my future.

[MikeG-2012]

I've had several nasal biopsies, while awake, and all of those were negative or inconclusive. The lung biopsy was the only way they could find out for me. My diagnosis was via lung biopsy. They took a 2x3x5 cm piece of affected tissue via lathroscopic surgery. Then, I had a chest tube for 6 1/2 days until the lung sealed back up and wasn't leaking air. Obviously, general anesthesia to do the surgery. I also had to undergo a chemical plurodesis procedure to get my lung to finally seal up. thye did that in the hospital room with a mild sedative. My report came back from Mayo clinic as "definite GPA"

[stephwest]

Many thanks
Has anybody been diagnosed with WG without a biopsy????? Just on symptoms alone !!!!

[mishb]

From what I understand Stephen, many people are diagnosed on symptoms alone.

Many doctors look at symptoms and also at the blood test results and whether an ANCA result is negative or positive......P or C

They say that the only true and correct diagnosis is gained by a biopsy (I had a sinus one), but it is possible to still be diagnosed and start a medication regime, without a biopsy. Some biopsies have negative results, and in that case the doctors will still look at the signs and symptoms any way.

[Alysia]

Hi Stephen-

I was diagnosed a little over a month ago with WG/GPA. I had severe chest pain (like someone was stabbing an 8" kitchen knife through my chest every time I tried to take a breath) so I went to the ER thinking I was having a heart attack, and they took a chest x-ray. Turns out, some "stuff" two "lingular masses" showed up on the x-ray so my primary care doctor had me get a CT Scan to make sure it wasn't something bad....well, the CT Scan showed, not two masses, but 30-40 masses (or what I now know them to be 'granulomas') and one of them (the one causing the pain) was over 3cm (about three fingers width). They thought I might have a tumor because of how severe and how many lumps they found in the CT scan, so my pulmonologist scheduled me to get a lung biopsy of the lump (granuloma tissue). So for me, my biopsy was a CT-Guided biopsy done by the Radiologist at the hospital. They scan you a few times and then the radiologist looks at the images and decides which is the best way for them to access the tissue. For me it was over my left breast because that's where my largest lump is. The procedure only takes about 30-40 mins total. They gave me a sedative (vallium) and a pain killer (morphine) through an IV drip. They have to control the amount of drugs they give you so you do not pass out completely because you need to be breathing regularly for the radiologist to do his job correctly. They also had me hooked up to a blood pressure monitor and a pulse/O2 finger monitor to check those vitals while they were doing the procedure. They use a "screw-like" hollow needle to extract the tissue. Sorry, that description sounds way scarier than the actual device, but essentially they make a small cut in your chest (less than a cm) and use the needle/drill thing to extract 3 different pieces of the tissue. Then they put the tissue samples on petree-dishes and look at them under a microscope to see what you have. For me, they had to make sure it wasn't cancer, they also were looking for WG, and the third test was to make sure it wasn't a mold that was causing my lumps. Sorry for the long extended answer. I'll try to answer your questions more simply....
1. Yes, to make sure it's WG they need to do a biopsy
2. My biopsy was taken from my lungs, from the tissue of my largest granuloma
3. The test comes back positive or negative (ie. they will be able to say "yes you have WG" or "no it's not WG")
4. I don't know about other tests, they made it pretty clear to me that the lung biopsy was my only choice
5. The biopsy can be dangerous. I'm a weird WG candidate because I'm only 24 years old and most people (from what I've read) are 40 or older when they're diagnosed. But a lung biopsy can be dangerous, when and if, the lung collapses. My pulmonologist explained it to me like this: your lungs are like a vacuum made up of hundreds of little air sacks (like grapes) and when the sacks get punctured they will collapse. Now, that is natural, when they did my biopsy the little grape clusters around my granuloma did collapse when the radiologist punctured my lung, but because that was only a small area of grapes that got punctured, the entire lung did not collapse (vacuum in on itself). Your lungs are strong enough to have only a couple grapes collapse and then naturally your body refills them with air and they're good again. The complication of a real lung collapse can happen and is a higher risk for older patients, although, even still it's very low, like 10-20% of people and they are usually 60+ in age. The good thing is that if your lung does collapse they know exactly how to fix it and no one dies from a lung collapse. They hold you in the hospital for 24 hours as they re-inflate your lung. For me, what happened after the procedure was they held me in the hospital bed for 4 hours to monitor me before they released me. They took chest x-rays every 30mins to monitor my lungs (make sure they weren't collapsing) and they had a blood pressure monitor and O2/pulse monitors on me for the whole 4 hours. I will not lie, it was painful, but not during the procedure because they give you the vallium and the morphine. But the two days following the procedure it felt like I had that 8" chef's knife stabbing me. I hate pain medications because they make me sick, but I took a codeine/acetaminophen every 4 hours for 36 hours after the biopsy just so I could sleep. Luckily after two days of healing, the pain was manageable enough for me to switch back to ibuprofen again and I got to stop taking the big pain meds.

I'm sorry if I rambled on too long. I hope some of this was helpful. If you have any other questions or concerns I'd be happy to help you out. It's a scary thing to think about and no one should have to go through it alone.

Best,
Gracie

Hi Gracie,
welcome to the forum and thanks for your detailed important explanations :thumbup:
there are weggies of all ages. you can meet them here.
I am sorry that you have to deal with it so young. I hope that you are on your way to long lasting remisssion.
I didn't do lung biopsy because of the ridiculous reason that the hospital didn't had operation room free at the time I needed to do it. so they only made bronchoscopy and my diagnosis was delayed for more couple of months :sad:

[Alysia]

Many thanks
Has anybody been diagnosed with WG without a biopsy????? Just on symptoms alone !!!!

Hi Stephan,
I got my dx without biopsy proof.
my 2 nasal biopsies were false negative.
my doc made "case conference" about me with lots of experts and they concluded that it is wg.

[stephwest]

Many thanks
Has anybody been diagnosed with WG without a biopsy????? Just on symptoms alone !!!!

Has anybody been dx with WG and put on Pred and MXT on viewing symptoms and blood tests alone ?

[marylz]

Hi Stephen. Welcome to the forum. Yes, I was diagnosed with no biopsies, because, for me, the biopsies could have done "more harm than good." You see I have an artificial aortic heart valve and am on heavy-duty blood thinners to keep that clear and I have only 1 kidney (congenital), so to risk that made no sense. Thedoctors did all sorts of less invasive tests to rule out everything else and were left with wegs, so here I am almost 1 year later.

[pwc51]

For me too there was no biopsy - having said that there is no doubt in my mind that the dianosis was correct. Once I saw my (now) rheumatologist he had diagnosed me within 5 minutes and I was on high dose pred straight away. CTX infusions were started within 5 days after 5 days in hospital.

[gilders]

Hi Stephwest.
It sounds like you're very nervous about having a biopsy. Although there maybe some who have been diagnosed without a biopsy, I'm rather certain that they are in the minority. Treatment is quite intensive and has it's own risks and side effects. Therefore as biopsies are the only 100% way to diagnose WG, they will almost always be used.
I've had nasal and a few renal biopsies. Nasal ones are uncomfortable, but pose no risk. I would definitely not worry too much about having a nasal biopsy. The only problem with nasal nasal biopsies is that they are not always conclusive and can show no signs of WG even though you have it.
The Dr will decide which biopsy to do based on which organ(s) WG is effecting. Apart from my most recent relapse, WG has always attacked my kidneys and that's where the biopsy has always been taken from. The main risk with kidney biopsy is that the tool used to "grab" a tissue sample from your kidney could nick an artery causing a severe bleed. This is unlikely to happen to happen as the "needle" is guided via ultrasound scan. Again it's uncomfortable rather than painful and will be performed under local anesthetic as each time they attempt to take a tissue sample you have to take a deep breath in and hold it.

You need to find out which organ(s) are being effected by this possible WG.

[windchime]

Hi Stephen,

I had my lung biopsy done in early November via Bronchoscopy. I'm currently awaiting results as the slides were sent off to Mayo for diagnosis. I was asleep during the bronch so I didn't feel anything. And as everyone else has said that is the only way to get a conclusive diagnosis. It should come back as either negative or positive. I was originally diagnosed many years ago through an open lung biopsy. So as you can see there are different ways to achieve the goal of a tissue sample. From what my Pulmonologist told me they want to get a part of one of the granulomas or a part of a blood vessel that shows the inflammation. Sometimes not so easy to do. Best of luck to you.

[drz]

I had a kidney biopsy to confirm my diagnosis. People are diagnosed without biopsies in some cases. I slept thorough most of my kidney biopsy and it seemed to go pretty quick. They they take a biopsy from an area where they think the Wegs is active. Kidney is most reliable area to biopsy if kidneys are affected. Next lungs since they can get a large amount of tissue from the lungs which increases chance of finding an active area. Nasal biopsy is most problematic since it is often possible to not hit an affected area during the biopsy. If Wegs is in another area other than these areas the diagnosis may often be made without biopsy.

[annekat]

I was diagnosed by nasal biopsy. It was spur of the moment, based on my saddle nose and some other indications, and done right in my ENT's examining room with a topical anesthetic. It was not pleasant, but not too bad. He said he took a scraping from the bone of my septum where there was a small hole in it. I think others have gotten incisions to take tissue samples and I'm not sure if he took anything but the bone. If it had been negative, then they might have taken a lung biopsy, since I had lung involvement with lesions showing up on a CT scan. I'm glad they didn't have to. I don't know anything about numbers on a scale in the diagnosis process and am thinking it is more a case of physical evidence shown under a microscope, although I don't know that there might not be some other aspects to the testing.

[vdub]

Don't worry about getting a biopsy. Its pretty easy stuff. They got my sample from my pituitary gland in my brain. Of course, they destroyed the pituitary in the process.

[stephwest]

Don't worry about getting a biopsy. Its pretty easy stuff. They got my sample from my pituitary gland in my brain. Of course, they destroyed the pituitary in the process.

So is it not functioning re Homeostasis and not working re temp control and ph in the body????

[vdub]

Correct! They took 5 pieces in total and destroyed both the anterior/posterior pit, hypothalmus, and pituitary stalk, so the entire endo system is pretty much gone. Any hormonal balance is pretty much up to me. I get blood tests every 4-6 weeks and adjust accordingly. If I feel out of balance on one particular hormone, then I'll get it tested early and make whatever adjustments I need -- all in coordination with my endo, of course.

It varys somewhat, but generally I'm on about 16 to 20 drugs a day -- most are pills, but some are shots. Maintaining the proper hormone balance is difficult, so I feel kind of weird most of the time -- both physically and mentally. The thyroid and testosterone are the biggest controllers of emotion. There's times when the thyroid is low and you just collapse and cry for no reason. Testosterone is also the biggest factor in controlling physical issues -- particularly hot/cold flashes. Humidity is not a friend.....

And, of course, the side-effects of the drugs is no fun. The best drug is the desmopressin. It is the synthetic version of vasopressin, which is produced by the hypothalmus and controls kidney function. Desmo has no known side-effects, does it's job superbly, and leaves the rest of your body alone. Of course, it costs about $2,000/month -- no drug is perfect.

[JeanMarie]

I was originally diagnosed without a biopsy. They called it limited wegs & prescribed MTX & pred. About18 mo later my kidneys became involved & I had a kidney biopsy to confirm. They wouldn't prescribe CTX without a biopsy.

[whatthewhat]

Hi Stephen, it is my understanding from our rheumy team that the wg diagnosis process is a triad: physical exam (including CT etc), blood work, and biopsy. The biopsy for WG was done on an ulcer our daughter had on the skin of her foot, and was done with some topical anesthetic (I think) and then removing that part of the skin and then stitching it up afterwards. The biopsy came back "positive".

[Alex]

I was diagnosed without a conclusive biopsy as well. When I first presented with severe hemoptysis & hemorrhaging of the lungs they couldn't preform the biopsy on the lungs because I was too critical. They tried a nasal biopsy which came back inconclusive (just inflammation) and later biopsied my testicle as well where I was having symptoms but that too came back showing "nonspecific inflammation". I am still anca negative but I have had a very high sed rate since the initial flare and the second relapse. Both times have ended with myself on a ventilator in a propofol coma. They looked at all the symptoms I had and wegeners is still the best fit. I was put on prednisone, cytoxan and then rituximab back in 2012 when I was 21. I recently started having some kidney involvement so pending an appointment with a nephrologist I may end up getting a kidney biopsy. One more chance to get a conclusive answer.