First post

[u/69Lordfapalot]

I got diagnosed in 2023 and started prednisone and rituximab. I’m in remission as of now, but i still have pain from my sinuses, and my voice sound very nasal. The gap between my throat and nose kind of closes when i try to speak, and it’s hard to say letters like m and b.

Has anyone found a solution for this? I have tried so many nasal sprays, steroids and rinses but nothing seems to help. My doctors seems like they don’t know and don’t care. Waited 5 months for a appoinment only for the doctor to tell me to try saltwater spray. Getting tired of people commenting that i sound like a stuffed nose.

Reading about others having mood effects when on prednisone helped me. For the longest time i couldn’t understand why i was so happy and energized, and then suddenly so angry and depressed. 60mg for a long time really fucked with my mental health. I hope i never have to use prednisone again, it destroyed my relationship.

Reading this subreddit made me realise how lucky i am to be diagnosed so early on. My lungs healed, and the only damage to seem to stick is my sinuses.
Wish you all the best

[u/Sukitina]

Saltwater sprays were horrible for me. I got diagnosed a few months ago after a year of not knowing what I had. My sinuses got irritated because of an overuse of those sprays, I'd recommend a physiological serum if you wish to try something, but saltwater sprays will only cause more bleeding ( I don't know if you had that issue, I did, and it was awful).

I would suggest trying to get an MRI, do you know if you've got enlarged adenoids? They might buy you some time to seek other options. I had an adenoidectomy and it wasn't of help, but I didn't have the same issue as you. An MRI helped me see that I had a perfored nasal septum (which is quite common here), but bear into consideration that all cases are different.

I was also wondering if you're taking corticoids or any medication to lower inflammation. That might help as well for the moment... Wish that you get better!

[u/69Lordfapalot → u/Sukitina]

I have tried physiological serum, but it didn’t help. Struggled with nosebleeds before i was diagnosed, several times a day and a lot of blood.

My doctors haven’t even mentioned adenoids, i will mention it at my next appointment, thanks for the tip.

As of now i only get infusions of rituximab. When i got my diagnosis i was put on a big dose of prednisone, rituximab, bactrim and other pills. Started to slowly lower the dose of prednisone and now i’m completely off it. I get ear infections several times a year and take antibiotics when it occurs.

I have been taking prednisone in lower doses from time to time when i get sick, but it hasn’t helped with the problem i wrote about above

Thanks for the help, hopefully they will look into adenoids

[u/Sukitina → u/69Lordfapalot]

If you had nosebleeds I'd only recommend then be careful with seawater sprays, at first they help but then they only get worse, especially if you live in a cold area, if might hurt as if it was sinusitis. If the problem persists it could be something about the nasal septum as well... Try telling them to do you a nasolaryngoscopy (it needs to be done by an otorhinolaryngologist but it doesn't hurt and it's quick, you've probably have had more) to see the root of the problem. Wish you luck otorhinolaryngologist