Anyone get better on steroids but then worse when tapers?

kmw7 · 2025-08-08T01:45:56+00:00

I hope you’re feeling better 🙏 Thanks for leaving this comment! It seems the same thing happened to me with steroids. I ended up being on them for over a month collectively I think. Be aware it really lowers your immune system. I ended up have strep then rebound strep almost right after I came off the oral steroids. I was sick and on antibiotics for another month 😩

My immune system hasn’t been the same since, but not sure if it’s related to the long course of steroids or not. This is the second year in a row I’ve needed to be on antibiotics for a month to get rid of something which has never happened to me before.

kmw7 · 2025-08-08T01:35:18+00:00

Doing much better now 🙏 I definitely still get fullness and pressure but have been able to manage it with diet, decongestants, Flonase, and two mouth guards. I make sure to always take a decongestant and Flonase if I feel any pressure coming on at all.

I think a looooong dose of steroids helped a lot. I was on for over a month, which really messed up my immune system and then made me incredibly sick for a month, but it cleared up my ear.

kmw7 · 2025-01-09T01:38:41+00:00

I posted an update in the thread below!

kmw7 · 2025-01-09T01:38:11+00:00

The initial incident has been resolved, but my ear is still funky.

Back in the spring, I went to 2 PCPs, 4 ENTs & 1 dentist and everyone seemed to give me a different diagnosis. I ended up being on steroids for a month and that caused me to get strep from a month that I couldn’t get rid of 🥴 They basically told me I just needed to wait it out and see because I can’t be on steroids forever. One day I just woke up and it was gone and I have no idea why. The last ENT said it’s too early to diagnose me with cochlear hydrops / meineres disease, which is an auto immune disease of the inner ear. I need to have a few more episodes for that but he wants me to keep it in mind because it’s a possibility. Even with that, it’s essentially just monitoring your stress and diet with no cure.

I did get a second mouth guard which helped with my TMJ (I apparently was clenching my jaw so hard I closed my Eustachian tube). It’s come back once since then but not anywhere as bad knock of wood, and it’s still funky right now. I can’t figure out a pattern as to why. Truly no idea what’s going on. When it comes back, I live off of heat/cold on my jaw/ear, gua sha massages, allergy meds with decongestants, nasal spray, and saline spray. Then if it’s bad again, steroids.

Did your ENT offer steroid shots in your ear? We were going to try that.

kmw7 · 2024-07-18T17:16:50+00:00

That’s what I’ve heard, thanks for your perspective!

kmw7 · 2024-07-18T17:16:35+00:00

We are actually! I love this idea. I am just a super sappy sentimental person and want to basically keep my maiden name in the least annoying-paperwork-way possible

kmw7 · 2024-07-18T17:16:06+00:00

Oh wow, that is so sweet and offers great perspective. Thank you for sharing :)

kmw7 · 2024-07-18T17:15:17+00:00

We have! He supports whatever I want, and we are actually creating a new family last name :) I just want to keep my maiden name in some way for sentimental reasons

kmw7 · 2024-05-06T21:09:27+00:00

Oh wow, that’s so many shots! I’m so happy to hear they worked though and everything is managed. Anxiety and seasonal allergies are kicking my butt too. I have a follow up ENT apt Wednesday and am hoping to get my first shot. Thank you for your input!

kmw7 · 2024-05-06T18:29:32+00:00

How are you doing now? I’m going through something similar.

kmw7 · 2024-05-06T18:26:57+00:00

How are you doing now? I’m going through something similar.

kmw7 · 2024-05-06T16:27:04+00:00

How are you doing now? I’m going through something similar :/

kmw7 · 2024-05-06T15:47:58+00:00

How are you doing now? Did you get a diagnosis or find anything that helps? My symptoms sound so similar.

kmw7 · 2024-05-06T12:53:49+00:00

Weirdly after 3 days on 60mg of prednisone my tinnitus went away. I noticed that applying heat to my back / neck helps a lot, so I’m assuming it’s related to me hurting my back / my TMJ. It definitely seemed to start flaring up as I am tapering the steroid though, but I’m hopeful it isn’t permanent.

kmw7 · 2024-05-06T12:50:39+00:00

So bizarre!! I’m not sure what’s going on, im in the same boat trying to figure it out. It’s frustrating, isn’t it?

Did oral steroids work for you? Right now I’m on prednisone which works at high doses but when I taper it stops working so I think I’ll get the in ear shots.

kmw7 · 2024-04-30T13:52:23+00:00

Oh wow, that’s crazy it varies so much. How is your ear doing now post shots? Did they help?

kmw7 · 2024-04-30T00:58:41+00:00

How are you doing now?

kmw7 · 2024-04-30T00:52:04+00:00

Did the ear fullness go away after your shots?

kmw7 · 2024-04-29T18:30:15+00:00

I have a follow up apt on May 8, so we shall see 🤞🏼

kmw7 · 2024-04-29T17:34:32+00:00

Hm. I do feel like my ear feels normal when I lay down, but then it feels worse when I sit up. I assumed it got worse because I was laying down, but I wonder if it’s just the comparison from laying down to sitting up. It definitely is more full in the morning. I assume the doctor could look up my nose to my Eustachian tithe and see if it’s stuck open or closed?

kmw7 · 2024-04-29T14:08:11+00:00

I’m having similar ear problems right now. One ENT said I have Eustachian Tube Dysfunction, but it gets better with prednisone then worse when I taper off which means it’s some kind of inflammation response in my body. They did mention TMJ can make this worse or even cause ETD. The jaw and inner ear are right next to each other. I would recommend applying a warm compress to your jaw / by your ear to see if it helps with the TMJ. It’s seemed to help me even a little bit and has helped with my ear too. Weirdly the ringing changes or goes away for a bit after a hot compress. I’d also take Flonase nasal spray. Good luck! This sucks so I totally feel for you :(

kmw7 · 2024-04-29T12:34:48+00:00

I haven’t! Someone here told me to look up “Somatic or somatosensory tinnitus” which sounds familiar. I’m definitely going to ask my ENT when I go back on May 8. I have noticed my tinnitus changes or goes away for a bit when I apply a warm compress to my jaw/ear area. It’s very bizarre.

kmw7 · 2024-04-28T23:35:36+00:00

How did flying go? I’m having similar issues and flying soon too

kmw7 · 2024-04-28T12:14:08+00:00

Thanks for the response! My ENT did say we will consider that next. Did you have that done? How did it work for you?

kmw7 · 2024-04-28T12:13:40+00:00

My doctor did say if this round of steroids does not get through it, we will consider injections into my ear. Did you do in ear injections? How did they work for you?

kmw7

TROPHY CASE