Just came back from sinus biopsy

[howard]

Hi all,

My blood tests haven't come back yet, but my creatine levels are normal. My doctor allowed me to start prednisone because my tongue and eyes are becoming enflamed, but I don't know if he'll let me stay on it. He wants a proper diagnosis before treatment but I'm really afraid that something very bad is going to happen if I have to sit around untreated for who knows how long. The pain meds I was prescribed don't even help anymore and it seems like every day a different body part becomes inflamed with pain.

I am scheduled for a lung biopsy but I'm praying I won't need it. I couldn't sleep last night because the inflammation in my lung/shoulder hurt so badly. Either way I'm ready to do whatever needs to be done.

The sinus biopsy was unnerving but not painful. I'm just really nauseous and tired and in a lot of pain right now.

Thank you all for being so supportive and encouraging, I love you all. Going to get through this and be stronger.

[Keith]

Hang in there Howard. Pulling for you during this awful time.


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[annekat]

Howard, sounds like you are going through what I did at the beginning, a nasal biopsy, which in my case was conclusive for WG, so I didn't need a lung biopsy. I had a CT scan of my lungs, which showed numerous scattered cavitary lesions, mostly small ones, which are pretty well healed up now, after 6 years, and my WG symptoms have abated greatly. I am still on treatment, pending an appointment with a new pulmonologist, since my old one has retired. My rheumatologist wants to make sure my lungs are OK before considering tapering my immunosuppressant, MTX, though I am trying to taper prednisone beyond 7.5 mg per day. We are all a little different in our ability to get off these drugs. I had a pretty symptom-free summer but now with the cooler, damper weather, I am starting to cough again, which always seems to happen. Like you, my creatinine levels have always been normal, for which I am thankful. I'm sorry you had to join our club, if you indeed have WG/GPA, but you have come to the best place to talk about it and not feel alone. I wish you all the luck in the world in dealing with it and coming out OK on the other end, as many of us have.

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[Alias]

Howard, you are probably aware of this, but a nasal biopsy is often not diagnostic, i.e. a negative result is not uncommon at all even when all other indicators are showing that you have GPA. Your labs may tell the story, but negative C-ANCA etc does not not necessarily rule out GPA either. In my case the blood work and clinical signs were pretty definitive, so diagnosis was not as long an ordeal as it is for many. Sorry you are having to go through this. Best wishes.

[vdub]

Tom is absolutely right -- a negative ANCA or biopsy doesn't really mean much. I have never had a positive ANCA and CRP has always been normal or explained, but there is little question I have wegs.

I think most of us deal with pain to some degree on a daily basis and it moves around. Sometimes shoulders, then hands, then legs, etc. Sometimes your entire body just aches like you have the flu. I always described my pain as feeling like the first day after the first day of football practice where every muscle ached. You don't ever get used to it, but you learn to deal with it. Some days are rough.

[Alysia]

Hang in there, howard. You are on the way to feel better.
When I have pains I take paracetamol. Thats what we have here. Is there any similar, not risky, pain med you can take ? Just to be able to sleep.

[howard]

Hi all,

The sinus biopsy came back suggestive.

I had a 10/10 flare up with my eyes last night. They felt like they were being burned out of my skull.

I'm currently inpatient at Upstate Syracuse. I've met with their best rheumatologist. He wants to rule out fungal and cancer, but he has basically said if it isn't either of those then it's GPA. He just doesn't want to rush to diagnose me incorrectly.

It was kind of funny having them poke me and pinch me, pull me, have me push them around, and I'm flushed, running out of breath and sweating like I dropped out of fat camp. Have to have a sense of humor.

All I feel is relief and gratitude. This isn't what anybody wants but it is relieving to know that im close to being on the path to treatment.

[mishb]

I'm glad you went to the hospital Howard.

Don't worry about the cancer and fungal tests, it's what they always check, and I think I was also tested for TB and AIDS jut to rule everything out.
It sounds daunting, but they have to be sure.

Gosh, burning vampire eyes, I can feel your pain. Some pred drops should help with those.

Treatment is not fair away now - hang in there

[annekat]

Howard, I'm glad your sinus biopsy showed a helpful result and it sounds like that will spare you the ordeal of a lung biopsy. When I was in the hospital overnight for tests, there was pain and swelling in and around my eyes, not as bad as yours, but as soon as I was dx'd and began treatment, that symptom disappeared like magic. I hope the same will be true for you. Best wishes.

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[Amy Marie]

Thanks for saying “treatment is not fair away now “. That is the best sentence we have heard since all of this started. It is really comforting. Thank god this forum exists!!!

[John S]

When I'm sick with Wegeners I often question my sense of illness. I frequently doubt it is happening. I'll say , Ow! with a headache, eye irritation or be surprised when my nose gives me a crop of caterpillars. And then I'll say. "I'm not doing that bad". When I call the Doctor I feel like a wuss.
I just had a flare up and a friend that also has GPA told me to insist in care ASAP. I'm glad that he did. This disease causes permanent damage to vital organs. I know that I don't function nearly as well as I did before the onset. I'm afraid of flares causing additional permanent damage.

Keep of pushing for your best care!

[howard]

When I'm sick with Wegeners I often question my sense of illness. I frequently doubt it is happening. I'll say , Ow! with a headache, eye irritation or be surprised when my nose gives me a crop of caterpillars. And then I'll say. "I'm not doing that bad". When I call the Doctor I feel like a wuss.
I just had a flare up and a friend that also has GPA told me to insist in care ASAP. I'm glad that he did. This disease causes permanent damage to vital organs. I know that I don't function nearly as well as I did before the onset. I'm afraid of flares causing additional permanent damage.

Keep of pushing for your best care!

I know exactly how you feel, John.

After a few weeks of everything being unbearable I finally went to urgent care for help because it felt really scary and serious.

The doctor told me I had a COLD and that I "couldn't use urgent care like this."

I've learned 2 extremely important things in the past few weeks:

1. There needs to be some SERIOUS awareness raised for this disease so that people who are just starting to suffer from it don't have to get so bad that they suffer tragic damage to their vital organs.

2. We need to advocate for ourselves extremely strongly and shout "no, there is something seriously wrong with my health. I'm not here to hunt for pain pills and cheap thrills, I want my condition to be believed and I want to be given serious medical care."

I can only imagine how many people have gone to their doctors for so long when they started feeling the effects of GPA and kept getting turned away due to the lack of awareness of this disease. No wonder so many people suffer such horrible things like kidney loss, eye loss, having to have their bowels removed, it's absolutely horrible. This disease CAN be diagnosed BEFORE it destroys people's bodies.

I met with 4 doctors and one ENT over two years (my first flare-up went into remission on its own due to some miracle) and I actually went through a deviated septum surgery over it.

After masses were found in my lungs it took one doctor to listen to me for 10 minutes and actually BELIEVE me and he said "this sounds like a disease called granulomatosis with polyangiitis" and he was right. Just like that he began the process of saving my life and actively removed every obstacle that the healthcare system was trying to put in my way (and there were a LOT of obstacles).

You're not a wuss. You're suffering and you don't deserve to. Doctors need to understand "yes, this is a stomach ache today. In a week I'll need my bowels surgically removed if you do not help me" and do not take "no" for an answer.

[annekat]

Well said, Howard. I have a pulmy and an ENT who have good reputations as docs but completely missed the boat on this. It took a very sharp hospital internist to guess what I really had, especially after seeing the result of a CT scan of my lungs. X-rays just don't show enough. After that, the ENT was totally supportive, was sure what I had, and confirmed it with a nasal biopsy. And was very apologetic for letting it pass for sinus and ear infections for so long. The pulmy, though, still denied it, until calling the ENT about the biopsy results, and then did a 180 and appointed himself as in charge of my case, since the lungs at that time were the worst. He did OK at treating me but is retired now and I have a rheumy who isn't much better. Will probably have to travel a little farther afield for one who really understands WG/GPA....

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