Newly diagnosed with wegeners

[annekat]

I had a nasal biopsy and a bronchoscopy done back-to-back. I was in the twilight zone for the procedures. As I faded out, I told the docs that whoever got the diagnosable sample got a steak dinner. The ENT got the dinner.

I had no issues following these procedures.

Love it, Pete! It's nice you are on those kind of terms with your docs. If they'd both gotten a diagnosable sample, you could have had a real party.

I definitely wasn't in the twilight zone, there was some pain, and blood was dripping out of my nose. No real recovery time, though. I think the ENT was pretty skilled at getting in there and doing it quickly. At the same visit, he got a needle biopsy of my parotid gland, near the ear and neck, because it had swollen into a lump and he wanted to make sure it wasn't cancerous. I've read a couple times on here of the parotid gland being involved with WG.

Andy, some of us get a lung biopsy for dx, which is said to be more reliable in results, but that is a much bigger deal and wouldn't work for you anyway if you don't have lung involvement. I had lung involvement, and am glad the nasal biopsy worked, because otherwise, they might have sent me in for a lung biopsy, which I'm sure would have required hospital admittance, and would have involved more pain and recovery time. In any case, I agree with Alaskatom that you should ask a few more questions before getting the biopsy.

[mishb]

I also had a nasal biopsy and it was positive for wegeners.

As Anne and Pete have said - the biopsy is really not too bad. I certainly didn't take my ENT out for a steak dinner

[Alias]

Anne, just as an aside, I had that parotid swelling, too. At that point, the ENT here in Alaska was still clueless and said it was a barely noticeable incidental finding, and something like "how many ENT problems can you have at once, anyway?" (That ENT was NOT the doctor who eventually figured it out!)

[annekat]

Anne, just as an aside, I had that parotid swelling, too. At that point, the ENT here in Alaska was still clueless and said it was a barely noticeable incidental finding, and something like "how many ENT problems can you have at once, anyway?" (That ENT was NOT the doctor who eventually figured it out!)

That's interesting. It happened just at the same time as I noticed my saddle nose, coincidentally. I don't remember whether the ENT said the parotid biopsy could help dx the WG; I just remember cancer being his main concern there. I didn't see the pathology report. And I don't remember how long it took for the parotid swelling to go away. I started treatment about a week later and think that took care of it pretty fast. I know if you search the archives you'll find some mention of the parotid gland. As to the question of "how many ENT problems can you have at once, anyway?", my answer would be "quite a few".

[Jaha]

Hi Andy,
I wish you all the best for getting on your way to feeling better. Please keep us informed on what you find out. Take care of yourself and feel free to ask any questions, there is always someone online to answer them.

[melbourne andy]

evening all
first of all a big thanks for the warm welcome from everyone, I am back in to see the Rheumatologist on Monday as he wants to change my meds (prednisolone) so will wait and see, I have been told that my kidneys are not affected, that was a huge relief. I am also seeing an ENT on Tuesday morning, so things are moving along quite quickly, this has all been taken care of by the Rheumatologist, I know he said he wanted things done quickly, I was not expecting it this quick, so hopefully he seems to be on top of things so far.
at the moment it is only affecting my eyes ears and sinus's, hopefully we are going to get on top of this before it goes any further, not looking forward to having my meds changed, if I drop it down by one tablet my eyes start to play up in a matter of hours, he did mention of putting me on methotrexate, how quickly does this start having an effect or would he still keep me on prednisolone, well will find out on Monday.

[mishb]

Hi Andy,

Which hospital, if any, is overseeing your care?

Methotrexate (MTX) takes at least 6 to 12 weeks to kick in fully.
I wouldn't be reducing pred until the MTX or whatever other med they decide to put you on, starts working

[annekat]

Andy, usually people are on pred and an immunosuppressant at the same time for a long time, though the pred does get tapered. And you aren't even on an immunosuppressant yet. Or even diagnosed for sure? It would seem more usual to add the MTX and give it time to take effect before messing with the pred. Though I don't know how much you are on. But the rheumy should be paying attention to your symptoms and how any adjustment in pred will affect them. Best of luck.

[Alias]

Andy, I was on 60 mg of pred for two months, during which time the MTX was started and given some time to take full effect. If the fires are banked with the MTX (or whatever med is decided on) and pred, it's likely you would be put on a slow taper of the pred. I'm presently at 5 mg, about 14 months post diagnosis. The pred becomes much less annoying as you get into the lower dosages. Since it sounds like you have localized or "limited" disease, your doc may decide that the MTX and prednisone should be sufficient to induce remission. It's a very good sign that your doc recognizes the need to move quickly, so it sounds like you are in good hands.

[melbourne andy]

Evening again,
I am currently on 20mg of pred a day, the rheumatologist does not want to up the dose because of my diabetes, at the present moment he is approx 90% sure on it being wegener's, he did say that he did not want to put me on immune suppressants until he was 100% certain.
so i can only assume that something in my last blood tests has changed his mind.
michelle i am currently under frankston hospital, this is were i was with the pancreatitis, which they think was caused by the wegener's.
I will have more of an update on tuesday.