Nasal pain and/or facial pain

[lag713]

Do you suffer from facial and/or nasal pain? I've been checked out by my ENT recently and he gave me the all clear. My medications are working (joint pain is down and blood tests look better) but the facial pain and nasal pain keep bothering me. It seems like OTC pain relievers don't help relieve the pain. It's a weird burning and stinging sensation in my nose and pressure, fullness, and pain in my cheeks. I thought that the pain would go away when the meds were working and my nasal passages looked clear.

Besides nasal rinses, do you have any recommendations for feeling better? How do you deal with chronic pain?

[Alysia]

Hi,
I am sorry for your pains
I had nasal pains (causing facial pains) for years. it was wg-activity. eventough the joints were not aching, and the labs were ok, the nasal pain was to most stubborn.
only couple of months after getting my first rtx, the pain started to go away, but leave behind a saddle nose.
how to handle it ? I just lived with it, trying to ignore it and not to let it control me.
I don't rinse because rinses affecting my ears badly. but warm long shower allways relieved some pain.
do you still have nose "productions" ? blood ?
I hope you will feel better soon

[lag713]

I don't have production or nose bleeds but I have blood in my tissue when I blow my nose. My ENT wasn't too worried about the small bits of blood though. I think medicine lags behind today. We need to focus on prevention whether it's preventing disease activity and subsequent saddle nose or kidney or lung damage. I think that there must be damage going on at a micro level that isn't visible to the eye if I'm experiencing this pain but it looks okay.

I'm glad your pain went away after a couple months of treatment. I'm sorry it left you with a saddle nose. I admire your courage of living with it and not letting it control you. Thank you for sharing your experience with me!

[Alysia]

thanks for your good words
I am sorry to say but I think that as long as there is still blood coming out of the nose, this way or another, it means that the wg is still active and/ or smoldering.
others around, please correct me if I am wrong
how long are you taking your mtx and how much of it ?

[lag713]

I've been on mtx since October 2013 but it was in low doses at first. My body didn't react well in the beginning. I've been on 20 mg in pill form between December-January. February-current I've been on 25mg in injectable form once a week. I believe that is the most that is recommended. My rheumatologist seemed reluctant but open to idea of prescribing rtx but my ENT thinks that is too much for me based on his evaluation. My ENT thinks I should give the mtx more time to work.

[Alysia]

as far as I know it is big enough doze and long enough time to start to see results.
the question is if you can see improvement over time, and then it means that it works for you. it takes time to beat that wg
but if you don't see improvement (that was my case, mtx did nothing to me) or not enough, then it is time to consider rtx.

[SpaceflightAddict]

I had some pretty serious sinus pain for the first few months of treatment, first thing in the morning was always the worst. It was a constant ache on the tops of my cheeks, and a stabbing searing pain behind my eyes. It took a few months of Cytoxan and prednisone to get my wegeners under control. Once it was under control though, things started healing and the worst pain started going away. If over the counter pain meds are not putting a dent in it, you should talk to your doctor about that. As much as I dislike prescription pain meds, sometimes they are needed.

[annekat]

thanks for your good words
I am sorry to say but I think that as long as there is still blood coming out of the nose, this way or another, it means that the wg is still active and/ or smoldering.
others around, please correct me if I am wrong
how long are you taking your mtx and how much of it ?

This is not really a correction, more of a speculation based on experience, but I think there can be blood in nasal mucus from time to time for various reasons. After all, most of us have some WG activity or smoldering, even if it is somewhat under control and we are not considered to be flaring. And nosebleeds can happen for external reasons; some non-Weggies are prone to them, and in my case, if I cough really hard for a few minutes it can break the nasal lining and produce a nosebleed, a moderate one that can be controlled. But there will still be blood in there for awhile which can show up in the mucus. Just lately, I AM in a bit of a flare, so the blood I see in there is no doubt because of that.

[lag713]

I just want to know:

1.) Have you ever had nasal and/or facial pain?
2.) How did you deal with the chronic pain or make it feel better?

I really appreciate all of your advice and concern about my treatment but I am confident that I am receiving appropriate care right now. I can distract myself from the pain by watching tv or doing other low effort but engaging activities but I need to focus on my work during the day. The pain is affecting my productivity.

I was just diagnosed in January based on multiple positive blood tests and symptoms. My CT scans, MRIs, Xrays, scopes, and other examinations all look clear so I never had a biopsy to confirm. It is limited to my upper respiratory system. I have not reached remission. Mtx is my main treatment drug. It is not being used as a maintenance drug. I have had symptoms since July 2013 when I started searching for answers. I'm being treated. I saw my rheumatologist and ENT last week. The blood tests look better and the scope revealed no signs of anything of concern. I didn't ask them about pain management because it is not unbearable and I didn't realize how much it was affecting my productivity. The pain keeps me from concentrating on my work. I can do menial tasks but it is tough to sustain my focus with the nagging pain that is occasionally very painful (only lasts a few seconds).

[MikeG-2012]

I had AWFUL, MISERABLE, off the pain chart headaches when I was in a flare-up. I was on THREE prescription pain killers to deal with the headaches and sinus pain. I woke up some mornings with 9/10 pain scale headaches, where I could barely form a conscious thought. My ANCA count was negative the whole time I was having the headaches, but my C-Reactive Protein and Sed Rate were off the charts. When I finally had breathing issues, they listened to me, did a chest x-ray and found that the Wegener's was in full flare-up mode.

I'm not trying to scare you, but if they don't start getting better, you may have active/festering Wegener's in your nose and sinuses. If the headaches continue, let you ENT and Rheumy know that they are not getting better.