Hi all,

I just stumbled on this community while searching for an ENT specializing in AIED. I’ll give a brief background of my journey in case it’s helpful to anyone. When my AIED onset in 2015, my GP thought it was a sinus and ear infection. When those meds didn’t work and I started to lose my hearing and had an awful vertigo flare (could barely get out of bed for a few weeks), they thought it was a virus. I was put on a short dose of steroids and all was well until about 9 months later, when I had another flare. Slight bilateral hearing loss but my left ear recovered quickly from prednisone and has been stable in the normal range since. ENT/rheumatologist thought it was Wegner’s, Cogan’s or AIED.

Since then, I’ve been on various doses of prednisone up to 60 mg, coming off of it only for 4 months early this year (am now back on it because of another flare). In the meantime, I’ve tried a number of steroid-sparing medications - Imuran, methotrexate, remicade, rituxan, cellcept, Arava and currently on Kineret. Methotrexate seemed to work better than most of the others but I couldn’t handle the hair loss. Once I flare, which presents for me as increased hearing loss in my right ear and minor vertigo spells (more minor as time has gone on), we assume the meds aren’t working and I increase my dose of prednisone and try a new med.

My ENT once told me that some people might need to stay on a low dose (5 mg or less) long term in addition to whatever med works the best for them.

As a positive for anyone reading this, while prednisone has awful side effects, it can help some people (including me) regain hearing. I’ve read that even steroid-responsive people become less so over time, but since I started back up 4 weeks ago (40 mg for 3 weeks, 30 currently and still tapering), my hearing has been better than it has been in years (per my audiogram today). Another positive, again with the caveat that this is in my experience but I’ve read it can be similar for others, is that my vertigo flares are significantly less intense than they used to be.

As far as prednisone, I can empathize with anyone taking it as I have 7+ years under my belt. I’m not a doctor, but some advice below.

Get a bone density test so you have a baseline and can monitor over time, as it can wreak havoc on your bones; talk to your doctor about how to counter that (eg calcium supplements).

**This could be a potential trigger for someone and is NOT for everyone.** But I found that tracking my calories, lowering my sodium intake and drinking a lot of water helped me to maintain my pre-prednisone weight and avoid moonface during some of the periods I was on a higher dose (though moonface did happen to me). It makes you ravenous, so I just wanted to be mindful of what I was eating.

If you’re experiencing mood swings, irritability, sleep deprivation, etc., which I have, I found giving my friends and family a heads up helped them to be a little more patient with me and helped me to feel a little less guilt/frustration over not being able to control the chemical changes in my body. Along those lines, I’m a big proponent of anxiety/stress-reducing techniques (breathing exercises, working out, meditation, etc.).

If you get heartburn, talk to your doctor about Omeprazole. It has its own negative side effects but might be worthwhile short term.

Some other random things to note:
Second opinions can never hurt, nor can a team of specialists (rheumatologist, ENT, audiologist, neurologist, etc.), especially if they’re in the same network and can easily communicate with each other and can all access each other’s notes. The longer you deal with AIED, the more doctors you might need to see because of side effects of medications. I also did a lot of tests (MRIs, X-rays, CT scans, tons of bloodwork) to rule out extremes like tumors, etc., and to monitor my body. This might look different for someone who’s older, but I know I’ll be dealing with it for (hopefully) many decades.

If multiple medications usually meant to treat AIED aren’t working, talk to your doctor about others that aren’t indicated for AIED.

Overall, hang in there. It’s tough to be in a minority of patients where there’s not a ton of info out there, but you’re not alone! This seems like a great support group.