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@montsebarcelona

Good morning @becsbuddy,
Well, I've been on MTX for 4 months now and I haven't stopped cortisone since January... and maybe at first I noticed some improvement in the sense that my symptoms were fluctuating but I'm terrible again, I haven't managed to stabilize myself at all... and It's exasperating. The hearing loss goes up and down a little but every month I have more loss and the pressure and tinnitus are horrible... I have been to many ENT specialists, none of them know what else to tell me. I am on the waiting list to get a cochlear implant since I lost my left ear 11 years ago. But the problem of the right ear cannot be solved with anything.
Thank you very much for your support.

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Replies to "Good morning @becsbuddy, Well, I've been on MTX for 4 months now and I haven't stopped..."

I’ve found that we have to try many modalities to be able to function with this disease. B vitamins have been helpful I found a supplement called lipoflavanoid recommended by my ent years ago although it says for tinnitus it helps with inner ear problems and has been very helpful over the years also I use accupuncture for flare ups. The doctors are clueless after using prednisone they have nothing else

Steroids (cortisone) are a double edged sword. If you’re going to take them, you need to do the research yourself to find out how they work for what they are being used for. Ask your dr, “how are you using the steroids affecting this disease process?” Inflammation? To lower the immune response? Something else? When will I taper off? What are the side effects of long term use? Any worries about fluid retention in the ear with the steroids, complicating things?
I’m waaaay down the road on all this so I know a lot about steroids and I know how much of a miracle drug they can be. But I also know they can be a little stinker, too! Blessings!