New to WG

[Anne0505]

Hello,
I'm technically not diagnosed, but all the testing so far is pointing this way. I started with an ear infection that wouldn't go away. It turned into mastoiditis and surgery to remove part of the mastoid. Mountains of antibiotics later and nothing. The ENT said 30 days post op that he had concerns it was Auto immune. Especially since by that time my joints had started having extreme pain. He referred me to a rheumatologist, but my paperwork got lost in the holiday shuffle. This last week her nurse saw my chart and labs and had been in the office within 24 hours. At the appointment, I was told my labs were elevated out of normal, but only just slightly. My ent had already put me on 40 MG of prednisone a day, so she said that might be keeping my labs in check. She thought my Wegener’s might be limited to my head and nose. Possibly my throat (i have swelling in the lymph nodes and tightening in my throat). She ordered new labs and a chest x-ray. The x-ray showed a 2 cm diameter place in 1 lung and I'm having a ct Monday. The labs were more or less the same, though there was some blood in the UA. Nothing significant.
Currently I'm on 60 MG of prednisone a day and have been given the info on the typical immunosuppressive meds I will likely start after she completes testing. My question is my face. My nose and the bones around it are brutally painful. IT's as if someone has taken a hammer to my face. The prednisone has helped my joints considerably. My face however doesn't seem to be changing. I try ice packs and nsaids, saline sprays to keep the sinus moist. Is there anything I'm missing? I need glasses to see, but it's often very difficult to wear them, is there anyway to help that? Also, is it likely they will biopsy the lung to confirm the diagnosis?

I'm glad to find this group the last 7 months, particularly the last 4, have been so rough. I feel that my doctors have done everything they should escalating treatment until there was no "next step" and then reaching out to the next physician. As a single mom, I feel like I let my children down everyday not being able to play with them as I could just a few months ago.

[drz]

Have you been advised to do sinus rinses? Pred usually helps with Weg pain but if there is also an infection present then an antibiotic is also needed.

[Anne0505]

No, but my ent has kept me on antibiotics since the mastoidectomy.

[Pete]

Hi Anne,

Some other folks may check in about the facial pain, but I'll raise the possibility of saddle nose deformity. It happens when the disease destroys the bone and cartilage at the bridge of the nose.

Also, I agree with drz about the sinus rinsing.

Good luck.

[Alias]

Hi Anne, sorry you are going through this.

My adventure started with what appeared to be an ear infection and persistent cold symptoms. I had several ear procedures culminating in mastoidectomy. After a couple more months of misery, someone finally thought to work me up for WG.

This is no time to get "lost in the shuffle", as critical weeks/months may be passing to get your illness under control. However, your 60mg dosage of prednisone suggests that your doc is taking this seriously, and it sounds like you are headed toward some kind of treatment to induce remission.

I had terrible nasal symptoms, nosebleeds, facial pain. I had to sleep in a recliner for months, often unable to breathe through my nose at all. I also remember barely being able to tolerate wearing my glasses. I did not progress to saddle nose deformity though, and while I still have annoying symptoms I am miles and miles better than I was a couple years ago. Things will get better.

Did a doctor tell you to use saline spray? If your nasal passages are raw and inflamed, sprays could be increasing your discomfort. You might ask your doctor about doing rinses medicated with something like Bactroban.

[Alysia]

Welcome to our family Anne0505.
Don't feel that you let down your kids by not playing with them like before. You love them and care for them and they can learn that mommy might also need some help and consideration; some good lessons for life, about responsibility and caring and compassion.
My face was aching around the nose as long as my nose had bleeding and crusting. Pred didn't help my nose. Only Rituximab. Do you have bleeding and crusting in your nose ?
Usually they do a biopsy from the lungs to confirm the diagnosis.
Hang in there. Please update us. Sending prayers.

[Dirty Don]

Hi Anne, glad you found us, sorry you had to do so. Not sure what the facial pain is, but...this is the beginning of a long journey. Not gonna improve overnight, not gonna stop hurting right away, and...you have just entered your 'new normal'. As a mom, it must be terrifying, but you and your kids must learn that this is going to improve...it takes a lot of patience, good docs' advice along w/ correct drug protocols, and support from those nearest you. Now is the time to take care of your self so you can be back for the kids...they will weather your storm, perhaps, better than you. Hang in there, keep getting good docs' advice, and best to you.

[Anne0505]

Yes, I'm having nose bleeds off and on, as well as swelling in the roof of my mouth. I don't know if one has anything to do with the other. The crusting is why I was using the spray. It would loosen it enough for me to be able to blow some of it out of my head.

I'm dreading another painful procedure, but I know they need a solid diagnosis. The doctor was very fast once I got to see her. I was in her office at 9 and finished the labs and x-ray around noon. She called me herself by 2 to tell me about the x-ray and that she was ordering the CT scan. She had some of the labs back and went through those. So, I think she intends to be very proactive and on top of it. She did tell me that we'd be spending a lot of time together for a while.

[Alias]

The crusting can be so awful, I know.

Early on in my treatment I had the chance to consult with a rhinologist (an ENT with a subspecialty in nasal issues) who gave me a good explanation of what was going on anatomically, the damage that had been done by the illness, and a treatment regimen. It was very helpful.

[Jaha]

Anne, I am wishing you all the best in figuring out your treatments. It sounds like you are getting the attention you need to be on your way to feeling better. It may take some time, but things will get better for you. Please take care of yourself and keep us updated. I am glad you found us for answers and support.