Had my sinus biopsy

[Wanda]

The ENT said my sinuses looked good and really didn't want to do a biopsy. I don't have any nodules. I told him I wanted it done anyways. Do I need to have nodules in my sinuses in order to have wegs show up in the biopsy? I know I have sinus issues, get bronchitis 2/3 times a year, sinus drainage and sinus headaches. I feel 100% sure I have wegs. Had 2 pages of blood work done and waiting for results. Should get them tomorrow and biopsy results Fri or Monday. So far the hardest part of all this is getting Dr's who care. I asked the ENT how do I know if the pathologist they are sending the cuttings to know what to look for with wegener's and he said "Oh, everyone knows what wegs is its not that uncommon" Well, I sure am confused, because no one I talk to ever hheard of it before. Oh well, hopefully I will know something soon.


Wanda

[HopeinTN]

I can't remember if you were having other symptons besides the sinus issues? What was the reason you think it's Wegs? I bet Pathologists would know exactly what they are lookign for and what Weg's looks like. Maybe not all the docs because it can present to the eye as many things.

[annekat]

I don't remember, either, why you thought you had Wegs or if some other doctor thought you might. But I think it's good you had the biopsy, in case it shows something. My ENT said he was taking the biopsy from bone scrapings around the small hole in the bony part of my septum. I didn't hear anything about nodules and am not even sure what one is. I don't know if he could have taken other tissue too, as well as the bone scrapings. While I do like this doctor, and feel he is kind and caring, I don't feel he is always very communicative about what he is doing and what is going on. So, whatever I say about what he did and what he saw in there may be inaccurate or incomplete. In any case, I did get a positive dx of Wegs from that biopsy. I hope you get some kind of definitive news as a result of yours.

[Wanda]

Symptoms were sinus infections, raspy voice, joint pain, double vision,cataracts, eye infections and inflamation, sores in mouth, shortness of breath, tired all the time. I have COPD which is under control and fibromyalgia, migraines, tinnitus and vertigo. Oh, and let's not forget anxiety and depression (wonder why I would have that) ANCA test came back positive but DR didn't do any other blood work, just called and said you have Wegener's. I didn't know anything about it so I did what he told me to do. I moved and have to get new doctors, which is proving to be a challenge. Been on prednisone since Sept and was just starting to feel better when the new Dr said I needed a biopsy and blood work so I had to get off the pred. to have them done. Well either way I should finally have an answer by the end of this week or beginning of next week.

[annekat]

Symptoms were sinus infections, raspy voice, joint pain, double vision,cataracts, eye infections and inflamation, sores in mouth, shortness of breath, tired all the time. I have COPD which is under control and fibromyalgia, migraines, tinnitus and vertigo. Oh, and let's not forget anxiety and depression (wonder why I would have that) ANCA test came back positive but DR didn't do any other blood work, just called and said you have Wegener's. I didn't know anything about it so I did what he told me to do. I moved and have to get new doctors, which is proving to be a challenge. Been on prednisone since Sept and was just starting to feel better when the new Dr said I needed a biopsy and blood work so I had to get off the pred. to have them done. Well either way I should finally have an answer by the end of this week or beginning of next week.

Oh, yes, it's ringing a bell. The doc should have gotten a biopsy before saying you have Wegs, but you well may have it, or not. Those sound like Wegs symptoms, but I don't know which of those other conditions you have could have some of the same ones. The ANCA test could be a good indication, but it isn't always conclusive without a biopsy. So I hope you get some results. I think we all thought if you have Wegs you should be on more than just prednisone, and that they shouldn't have to lower it to get a biopsy and blood work. Maybe it's a good thing you moved, and I hope you can find a better doctor in your new location. I know nothing about FL but have heard there are some good Wegs docs in that state. Maybe someone on here can help you find one.

[Wanda]

I was also on methotrexate once a week but was sick for 4 days afterwards so he put me on Imuran which I am still taking

[annekat]

I was also on methotrexate once a week but was sick for 4 days afterwards so he put me on Imuran which I am still taking

Oh, well, that is good... so he really thinks you have Wegs and maybe you do.... hopefully the biopsy will tell you for sure. (There was someone on here whose doc was trying to treat them with pred alone.... must have been someone else.)

[Dirty Don]

I was also on methotrexate once a week but was sick for 4 days afterwards so he put me on Imuran which I am still taking

Glad the Imuran is working. I am on mtx also, and was ill for about 3-4 days after each dose. Doc had me split the dosage half and half, 12 hours apart, the nausea went away. Whew!

[annekat]

Glad the Imuran is working. I am on mtx also, and was ill for about 3-4 days after each dose. Doc had me split the dosage half and half, 12 hours apart, the nausea went away. Whew!

Me, too, and I also split the dose, as Don knows. I still had a bit of the queasiness for a couple days after but am mostly used to it and over it now.... some people get sicker from it than others, I guess.

[Alysia]

Hi,
I was treated by pred + sulfa, about 3.5 years since dx. only then my doc gave me imuran, which I vommit, and then MTX and lately RTX.
I did research about C-ANCA and it is indicative of WG.
I did 2 biopsies from nose which shows no evidence to WG, that is why my doc didnt give me more aggressive treatment. he called it "limitied WG". maybe it was a mistake because my nose changed. maybe not, because I am very sensitive and he tried to "protect" me from "aggressive treatment".
I am cheking my nose in the mirror: without my glasses it looks "sadle". but when I put my glasses on, it looks smaller then it was. my husband say it is nice