Just found out yesterday

[howard]

Hi everybody,

After a month of worsening symptoms and battling uphill with doctors that something is seriously wrong, that I don't "just have a cold and sinus infection" I ended up in the ER 3 days ago due to shortness of breath and worsening chest pain. I demanded an x-ray which confirmed 4 masses in my lungs: two large, two nodules. The PA I met with in the ER thought it was pleurisy, but diagnosed me with pulmonary nodules and referred me to a wonderful pulmonologist who only had to speak with me for 30 minutes before he told me that I have a textbook case of GPA.

I'm really blessed to have met this doctor. He's moving this along very quickly and isn't wasting any time, and has used a lot of his influence to get me everything I need ASAP. I don't want to know where I'd be without him right now.

He wants to spare me from having to do a lung biopsy so he's referred me to an ENT in 2 days for a sinus biopsy to confirm. I also had more blood work done yesterday. Until then he's asked me to not take prednisone because he doesn't want it to mask the symptoms, so I'm on pain killers right now and going through hell. A new sharp pain appeared on my left kidney last night which kept waking me up in agony, but there's no blood so I'm grateful.

The gravity didn't really sink in until last afternoon, I was just relieved it wasn't cancer but now I'm not too sure how I feel about that. I don't really want to tell anybody about what's going on except my closest family, because I don't really expect anybody to understand (I still barely understand).

This is the 2nd instance I've had of this kind of flare-up. The first one happened last year and I suffered for 5 months with it. Everybody thought it was a sinus infection and I actually ended up having a septoplasty and turbinectomy because of it. The only relief I'd have were the few small days I would get prednisone. I used to have to call on-call doctors and beg for my life to get a script for it but I only got 3 5-day rounds during those 5 months.

Somehow after the surgery it went into remission but then it came back a month ago.

I know this is different for everybody, I'm just wondering if there's anybody out there who also gets this excruciating nose pain and how you cope with it. The pain radiates from my teeth up through my nose onto my scalp. The inside of my nose is very bloody, swollen, and scabbed.

When I was treating this like a "sinus infection" I actually began doing saline rinses with medical grade manuka honey. After two days the manuka honey actually caused the bleeding to stop and scabs to temporarily heal. Of course this isn't a cure and it all came back as soon as I stopped rinsing. I plan on talking to my ENT about this though before I try it again. I'm guessing it's going to be a "if it works it works" kind of thing though.

Thanks for being a community.

[Dirty Don]

Howard, welcome to THE community! LOL, most of us would rather be somewhere else, but we're all together now in this. GPA attacked my sinuses & lungs. All came clear due to massive amounts of prednisone. Sinuses were left damaged with excessive mucous output & varying pain on 'dry' days. LOL, is what it is. Point is, after surgeries to nasal & ear canals, nothing worked...damage remained. But, it's under control & pain is basically gone...just gotta blow my nose a lot. Keep rinsing, there are some other products that work well too such as Alkolol. This is a bit of a long journey, but with correct protocols, good docs, understanding people near you...it'll be a walk, literally - NO running! Continue to keep all informed & wishing you patience & progress!

[Alysia]

Welcome to the forum, howard. Thanks for sharing your story.I hope that you will soon get diagnosis, treatment and start getting better.

Sinus/ nose biopsy for WG can be false negative (it means that it can tell that you dont have WG, when actually you have). I had it twice, each time they took about 6 sample from my bleeding/ crusting nose and the pathology results were negative for wg. I have wg.

So my advice is not to count only on the nose biopsy. Did they check your C-anca and pr3 ? They can also come as false negative but if they (and the nose biopsy) are positive, then they can give you diagnosis.

As far as I know, a WG expert can recognise WG in the lungs CT.

Are your kidneys ok ? How much is your creatinine ?
Hemoglobin is low usually during a flare. Crp and ESR are higher then the normal.

In my case they didnt took biopsy on time because of ignorance. But they did case conference with many docs. It can be a good way without the risk of lungs biopsy.

Hang in there. A bit more and you are on the way to feeling much better.

[howard]

Hi Alysia,

I just had a round of blood tests yesterday where I assume my pulmonologist was checking for c-anca and pr3. I've had a CT scan, I'm not sure if he was able to identify it from that. This all is happening so fast. If the sinus biopsy is negative should I push for a lung biopsy?

I'm not sure if my kidneys are ok, to be honest. I have had a few times in the past month where my urine was REALLY foamy but I haven't passed any blood but last night a stabbing pain began in my left kidney and it isn't going away. I barely slept last night, wife said I kept waking up moaning.

I'm really scared about the doc telling me not to take prednisone today or tomorrow so that the biopsy would be more accurate on Monday. The shortness of breath is coming back, paired with kidney pain and I'm trying really hard to relax so I don't have a panic attack. I feel like going to the ER but I already went there on Wednesday and I know they don't really know how to deal with this.

Shouldn't I be being monitored right now? I'm kind of freaking out.

[gilders]

Hi Howard and welcome.
I'm sorry to hear that you don't have definite answers yet, waiting for test results and planned investigations is hell.
As Alysia said, nasal biopsies can be false negatives, but not always (such as the diagnosis of my last flare), so I'd have the nasal/sinus biopsy first. Would it be possible to preemptively book a lung biopsy which could be cancelled if the sinus one confirms GPA?

I have renal failure (13% function) and get pain in my kidney area, but my nephrologist tells me that it's more likely to be muscular rather then the kidneys. I'd be more concerned about the "foamy" urine. That's a sign of protein leaking from kidneys. But I would suspect it would be every time you pee (like me) rather than "a few times in the past month"

I understand your concern about not having prednisone, but if it helps prevent a false-positive, it will be worth it as you'll receive the appropriate treatment sooner.
Try keep calm. Accept that friends and family don't understand, rather than thinking that they don't care.

[howard]

Hi Gilders,

Thanks for being supportive and sorry for what you have to go through w/your kidneys.

I'm feeling better now, I just had a really shocking episode and passed out for a while. My kidneys have been (thankfully) untouched which was why the pain was so concerning, but it's down to a 3 now where it was a 9 a few hours ago.

I'll do what I can to schedule a maybe biopsy, that's a good idea

[Susan55]

Welcome to the forum, howard. Thanks for sharing your story.I hope that you will soon get diagnosis, treatment and start getting better.

Sinus/ nose biopsy for WG can be false negative (it means that it can tell that you dont have WG, when actually you have). I had it twice, each time they took about 6 sample from my bleeding/ crusting nose and the pathology results were negative for wg. I have wg.

So my advice is not to count only on the nose biopsy. Did they check your C-anca and pr3 ? They can also come as false negative but if they (and the nose biopsy) are positive, then they can give you diagnosis.

As far as I know, a WG expert can recognise WG in the lungs CT.

Are your kidneys ok ? How much is your creatinine ?
Hemoglobin is low usually during a flare. Crp and ESR are higher then the normal.

In my case they didnt took biopsy on time because of ignorance. But they did case conference with many docs. It can be a good way without the risk of lungs biopsy.

Hang in there. A bit more and you are on the way to feeling much better.

Alysia,















Welcome to the group Howard
I am new also and probably the one with the most questions out of anyone. Have so many doctors involved is great! it's just not ONE dr making this decision so it can put your mind at peace a little bit.
I am only going by what one dr said (from symptoms and blood work) My C-ANCA was right. Not sure how high is high, but it was marked as being high. along with two other markers I was told.
I have found in this group it's OK to ask anything at all, so many people on here with more experience then the doctors.
Wish you luck and please keep up posted.
Sue



OK, this is the part I find so frustrating!!! That a biopsy can come back neg and back at just going by symptoms. I keep saying to my self, this has to be wrong and just maybe I have something else and they don't have it right. Denial for sure. Then think wow, if I am taking all these med's and then I don't have it what next. This is what family is putting into my head and making me wonder how do they know 100% for sure I have it. But, I just had to believe in my doctor and do as she says. Just so hard. Wish I had a magic wand for all of us on here and make it all go away.
Sue

[Alysia]

Thanks God your pain was over, Howard. If you are coughing a lot, the pains might be the result of the coughing and not necessary the kidneys.

Do you know how much is your creatinine ? Did they check your urine ? Do you have any labs results yet ?

I agree with gilders that it is better to wait with the pred. I cant remember how much pred I took while I had my nose biopsies (many years ago) but it is possible that they turn out negative because of the pred. A maybe-lungs-biopsy is a good idea in case that the nose biopsy will not help.

Sue, only nose biopsy can be false negative. Lungs and kidneys biopsies are accurate. Well, also colon biopsy for vasculitis is problematic and can be false negative.

Also, as far as I know, C-anca is positive only in vasculitis and in Crohns' disease. So once it is positive, one cant ignore it. C-anca can also be negative and one will still have wg. Not all weggies are anca positive.

I understand that it is not easy, to say the least, to accept being sick in such a disease. I know the fears. Faith plays a major role for me in my handling of my sickness, after all this is God's will for me; but since the forum rules dont allow discussing of religion I will stop here.

[howard]

Hi Alysia,

I agree w/the faith sentiment.

I haven't had much of a cough just shortness of breath (how much is from pain vs volume idk, it just hurts). I don't think the masses are IN my lungs, I think they're on the outside of my lungs. I have a lot to be grateful for.

I'll ask about my creatine level tomorrow, I only took the urinalysis and bloodwork on Friday.

My left kidney still hurts a little but it's not extreme like it was, but today I woke up with my eyelids a little swollen and droopy. I think I'll wait til tomorrow to have imaging done since I don't think the ER can really do anything about it except take some scans and I'll need a specialized doctor. An ER visit just for some imaging seems a little wasteful as I have the feeling I'm going to be spending a lot of time in the hospital because of this :(

The eye problems aren't all that surprising seeing how traumatized my sinuses are from this (constant lesions, bleeding, and bloody "crap" coming out of them). I have a little headache but what can I really do until I see a doctor tomorrow?

I know if I go in the other room and take 2 prednisone I'll feel good enough to go to work in the morning, that's the hard part. I just have to wait this out for another day.

[mishb]

Hi Howard and welcome. I'm glad you found us.

Your symptoms sound all too familiar. The scalp hurts so bad, that you think each strand of hair also hurts.

I am one of the lucky ones that received a positive WG sinus biopsy, however this was 5 months after being diagnosed by symptoms and blood tests, yet they still didn't start any WG treatment until it was confirmed via biopsy.
I then had a 6 week wait to receive the biopsy results and during that appointment I was put straight into hospital because of blood in my urine.
At this time they started the long awaited treatment protocol, and I still remember clearly, by day two the pain was gone. Wow, the first thing I remember clearly was that the water from the shower no longer hurt my hair.......and I could wash it easily, and brush it.

Try not to stress too much, and know that most times you are not in any immediate danger, but if symptoms worsen, you can go to the ER.

In regards to the bloody nose, it has been 8 years for me, and a year and a half in medicated remission, and I still get daily crusting and blood noses, but nothing like before treatment when those big slimy bloody slugs were being produced.

All the best of wishes and pain free hopes being sent your way,
Take it easy (remember no stressing) and .........

[howard]

Hi Michelle,

It feels good to have people to relate to. I'm sorry you had to wait so long to begin treatment, I can't imagine what it was like to go through that. It's really hard to not feel like I'm in danger though, the flare ups are so scary and the pain is so intense.

[mishb]

The Public hospital system in Australia has long waiting periods unfortunately, as I guess it does elsewhere.
I was just happy to know the answer to my symptoms and also to know that if things got worse, I could head to the ER and get in that way.

Fortunately I was taking anti inflammatories for a diagnosis of Rheumatoid Arthritis, so the pain issue was lessened somewhat, but the WG symptoms (nose, eyes, ears, throat) were still there.

The main reason for my story to you, was so that you could try and breathe a little easier, knowing that others have gone through it, and come out the other end relatively unscathed, and that remission is possible, once the correct treatment is started.

Still wishing you the best of luck and hope that you can start treatment a but quicker than me

[annekat]

Hi, Howard... Sorry I missed this thread when you started it, but I did reply on another thread of yours. Everyone's advice above seems very helpful. We have all been through the anxiety you are feeling, and it is true that people don't understand, but day by day you will come to terms with it and be able to move ahead with more confidence. So good to hear you like your doctors, and I hope they will begin full treatment as soon as possible, which will make a big difference. All best wishes to you, and you know that we are always here.

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