Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

[Solose]

For me the most distressing symptom of Wageners has been losing my hearing and getting tinnitus so loud I've had a lot of trouble coping. When I was diagnosed I was given steroid injections and started on prednisone and the hearing loss and tinnitus got significantly better. However, last week after my first infusion the tinnitus started to get significantly worse. It was slow, but over the last week it has risen to a crazy level. I looked it up and it looks like it is a side effect for 1 to 10% people. My rheumy never told me about this. I am debating not getting my next infusion because it's so bad.

Has anyone else experienced this?

[Mandy G]

Hello
I’m new to this Forum
I was diagnosed with GPA in May this year after suffering an acute ear infection and hearing loss since February

I too have severe hearing loss and my tinnitus is getting extremely bad, I have musical tinnitus and pulsating tinnitus as well
Although my last infusion was 6 weeks ago and my first 8 weeks ago my hearing
And tinnitus are getting severe
I have my rheum appointment Friday I’ll be asking questions that’s for sure

[DStaelens]

Mine kind of fluctuated when I did the 4 infusions, it was bad after 2 and kind of toned back down after the 3rd. Not saying yours will behave the same way, but I did have a noticeable annoying period in the middle.

[jmq]

I am too experiencing hearing loss and bad tinnitus on my left ear.
I had not linked that to the most recent Rituximab infusion which I got in April due to a GPA relapse caused by COVID.

My GPA was in remission since 2018. I got a relapse in January of this year (2021) right after I had COVID-19 (December of 2020). My initial GPA attached my lungs and kidneys (in 2016-2017). This relapse attached my ears and my head. Got pachymeningitis as a result and ended up in the hospital. The brain MRI showed the inflammation extended to the auditory canal (both ears). Initially I just had ear ache and intense headaches. I was put on prednisone (via IV) and then 60mg while I waited for RTX infusion to be approved. I got infused with Rituximab in March/April 2021 and continued prednisone while I waited for infusion to kick-in. I think my tinnitus and hearing loss started around the same time as the infusion but need to double check. Infusion finally started kicking in in June 2021 except the brain inflammation stayed the same as well as the inner ear issues. Have had 3 head MRIs showing the inflammation has not changed. In addition my hearing has gotten worse as I have been tapering the prednisone. I always thought that the hearing issues were a result of the brain inflammation not necessarily linked to the Rituximab infusion. The first time I was diagnosed with GPA in 2017 and I got several Rituximab infusions, I never had any ear problems.
The impact on the brain and inner ear canal has been a new thing with this relapse. I link it more to COVID than anything else but who knows.

Now my hearing on the left ear has gotten progressively worse (as I have reduced prednisone down to 12.5mg /day).
They want to put me back on 60mg of prednisone per day again and I am resisting it because prednisone has done so much damage to my body already and it's been 9 months since I've been on prednisone. But the Drs tell me if I don't go back on prednisone, I may loose my left hearing for good because it's getting to such a severe level. Drs are wondering if the infusion was not effective because it has not helped with my brain inflammation yet. A second infusion was supposed to happen soon but my B-cells are still zero so the rheumy says he cannot give me an infusion without B-cells present. Not sure what's going to happen to my hearing. I may have no choice but take the 60mg of prednisone daily again.

I will double check on the timing of the hearing issues as it relates to the RTX infusion. If there is a link, I will ask my rheumatologist to see what he says. But hearing issues have definitely been fluctuating a lot. To the point that they say they cannot recommend hearing aids until they stabilize. But why haven't they gotten stable yet? Why is my brain still shows inflammation after the RTX infusion?

Thanks for sharing your insight!
Jeannette

[Pete]

jmq

You may want to see a an ENT or neurologist about your hearing issues.

[drz]

I lost my hearing and balance before I ever had RTX so think it was due to GPA and not the RTX treatment. High dosage of pred did not restore it.

[jmq]

Hey Pete!

I am seeing and ENT and a neurologist. all they have suggested is to put me back on a higher dose of prednisone (60mg) and taper by 10mg every week.
Rheumy wanted to know if there is a more objective study of the inner ear they could do (besides a head MRI) but he hasn't gotten any answers yet. Wondering if I need to see a special neurologist that specializes in inner ear issues and neuro-sensor hearing loss.

Jeannette

[Pete]

jmq

I think seeing such a specialist wouldn’t hurt — and might help.

i had tinnitus for many years before GPA thanks to no hearing protection in a variety of loud environments. I have about 40% hearing loss, mostly at the higher and lower frequencies. I wear behind the ear hearing aids. They’re very good in most situations, but in noisy environments, I hear everything and understand very little.

Good luck!!

[ST316]

Hi Jmq,

Regarding the Brain inflammation. Since there has been no change since the Ritux, are they referring you to any other specialists to see what can be done to bring this inflammation down?

Hope you start feeling better soon.

-Susan

[J@$0N]

Could the brain inflammation be a result of the Rituxan? I know there are conditions that can develop from it, but not sure if that is one. Do they have you on an antibiotic as a prophylaxis?

[jmq]

I had a virtual visit with Dr. Villa Forte at the Cleveland Clinic and she suggested I immediately go on Cyclophosphamide (aka Cytomax) to control inflammation and try to stop hearing loss. The thing is the inflammation markers result are not bad. But she doesn't just go by the blood results to decide on treatment). And my B-cells are non-existent (0).

So my local Emory doctor agreed to be more aggressive and I started Cyclophosphamide 25mg last Friday. She said to start with low dose. So, I am taking this in addition to the 60mg of Prednisone. Drs suspect the Rituximab infusion was not 100% effective. Another round of it would take too long to kick in and impact the hearing loss. She said Cytomax can work faster. I am terrified of the side effects, e.g. bladder cancer? :unsure:

[jmq]

Thank you Susan!

They put me on Cytomax (in addition to 60mg of Prednisone) to try to stop hearing impact.
I'm seeing an ENT dr and a neurologist but neither one of them knows what's going on.
I need to research if there is another type of doctor that would have more insight into what's going on.

[J@$0N]

Did you take the vaccine or just from having COVID?