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 takingOh, 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 :unsure:

[annekat]

Alysia, I do think that if you ended up with the saddle nose, you probably needed more than just pred and sulfa in the early stages. Plus I think it's generally assumed these days that pred alone, without one of the immunosuppressants, doesn't properly treat Wegs.

By the time I got my dx and treatment, it was too late, I already had the nose. But, like you, my glasses do a good job of covering it up, and some people have said it looks like a cute little pug nose (slightly upturned like that of a child) and makes me look younger. I think some people haven't noticed it at all, while others have. It could definitely be worse. I know that Sam on here, in the UK, met and married her husband with a saddle nose! She did get it fixed fairly recently.

[Jaha]

Wanda,
Good luck to you on your results. Concerning the nausea with mtx, when they had me on it I took the shots once a week and don't remember getting sick to my stomach. I did have pain in my bones for a couple days after the shot. I hope they find the right tx combo for you,sounds like you have alot on your plate health wise.

[greenjeep]

My WG journey started with a sinus infection that wouldn't go away. I got an EMT for the first time and he suggested surgery for a deviated septum and to clean out my maxillary sinuses (they were full of gunk). I thought that I would never have the surgery because I could deal with a little sinusitis here and there, but I started having ear issues as well. One got so bad that he wanted to put a tube in it but it was so inflamed that he didn't think I could tolerate the procedure in office - he wanted to sedate me first. He said that since I would be under he could go ahead and fix my septum and all too. I agreed and we went on and did it.
During recovery, my nose started producing GIANT granulomas, but we all thought they were just scabs gone wild. After about 3 week or so of pulling out massive scabs (he had never treated WG) I started running a fever. He did the RA, Lyme's, etc. bloodwork looking for something crazy. Then I had joint pain and mentioned all of this to my general Dr. He did the ANCA check and found WG. They insisted I have a bx because of the false positives associated with the ANCA. Since at the time I was only having sinus issues they would bx there. Nothing to bx in kidney or lung.
I was scheculed for the bx but my new Dr. (rhumi) said that he would check and see if they kept any of the tissue from the surgery and use it instead. They had kept some and it did come back positive. He saved me the bx and some $$. Anyway, long story short, they wanted an ANCA result and a bx result to be sure because the treatment is dangerous and not much fun. But my sinuses were jacked up. If you have no sinus symptoms, I would still be cautious if it came back negative. Have they looked at your kidneys (urine) or lungs yet?

[Wanda]

I had a lot of blood work done on the 15th and results are not back yet. I called the lab today because I thought it's been a long time and was told everything is done except the ANA that they had to do a "reflex panel" and was going to take 12 days (working days of course) so I now have to wait untl the 3rd of May. I picked up results of last ct of lungs from Aug and have 3 nodules and an 11 mm nodule lesion in my upper right thyroid lobe, they want me to get a thyroid sonography done. There is also a lesion in the medial hepatic lobe and they want an MRI of my liver. I had urine tests done 3 times since January and kidneys seem to be fine. I have an appt. May 1st with pulm/internist so hopefully I can get these other tests done as well. Hanging in there, and i believe things happen for a reason so....we shall see what's next in this journey. Thank you all for your concern, it's nice to be able to commuicate with people who understand what your taking about.

[Wanda]

I just looked up what "reflex panel" was and it says: The reflex automatically runs additional specific antibody tests included in the panel if the ANA is positive.