Has anyone had success with oral steroids for MM or bilateral MM? How long were you on it and at what dose? What does it mean if there is improvements? Is it sufficient evidence of an autoimmune ear disease, or is it just evidence that inflammation plays a large role in MM? I have been told its just a short term measure and the side effects of long term use aren't usually worth the possible benefits. It seems that I have bilateral MM and have responded to prednisone, but I am not convinced. I think its possible I was tested when my hearing in my better ear was on a down cycle and subsequent improvement (up cycle) may have presented a false positive. Now, I am trying methotrexate(MTX) to get off the prednisone (been on pred. for 2 months now, currently 40mg/day and tapering after a week). The new drug(MTX) seems really risky too, and I'm not feeling good about that, but my ENT and rheumatologist believe its the best path, largely to preserve hearing in my better ear. Antivirals are off the table until I run out this course or find a new doctor/ENT that's will to prescribe it long term. I just wonder if I have an autoimmune problem that warrants these heavy drugs and now have increased anxiety of negative side effects. Has anyone else had experience with this? It seems out of the ordinary.
Steroids are often used for sudden deafness...have to take asap. And are often used if autoimmune is the suspected underlying cause in MM. Dr Tim Hain has some writings on this that you may find of interest. Actually being tested with positive results for inner ear autoimmune is very rare. But a lot of chatter about more systemic autoimmune conditions and how it can impact inner ears. (they are very fragile little creatures) Once the ears are dead (deaf, no vestibular function by clinical criteria) its too late for an immune suppressant to be of help. But if caught early it can improve the condition if its autoimmune. But often the problem is insurance. Because immune suppressant drugs like Humira, Enbrel are not approved for ears. Usually only used if there is a work around for an rx for another condition. Sorry for the rambling. Hope this helps. But do check out Tim Hains writings on the topic....just Google.
forgot to say that folks that are bilateral and respond positively to steroids ....are more suspect for the autoimmune...
That's what i always heard but it never helped my sudden deafness though i took it right away and two courses and I think I almost certainly have an autoimmune component but also a viral component.
According to my audiograms, and ENT, the steroids did help my better ear recover from a bout of hearing loss, and I did have fewer vertigo episodes on prednisone. But, my hearing and vertigo episodes do fluctuate, so I'm not certain it was prednisone that helped or not. So, I tried another autoimmune drug, methotrexate, prescribed by a rheumatologist (he hasn't confirmed if I have autoimmune disease), and I wasn't able to get out of bed for 4 days, sick with vertigo, nausea, dizziness. I've never had such long term sickness like that and so I won't be taking another dose of that drug. I'm currently trying again to see if my ENT will prescribe antivirals and made the best case I can, though in the past he said he'd only give me a week's supply and doesn't think they'll work. He wants to get me on another autoimmune drug like Simponi,or Humira but like sjw111 noted the insurance (40K/yr according to rheumatologist) may not cover it, and I am afraid it will throw me into another tail spin and have bad long term side effects like prednisone. I like my ENT, but I'm not sure if he's on the right path and has said its the only option to slow the progression of bilateral menieres and I would likely need cochlear implants without the heavy meds. It all makes me anxious and sick with all these decisions and negotiations with doctors, and now I feel it will be my fault if things deteriorate if I refuse the heavy meds. Thanks to everyone who replied.
Anti-Viral's do work for some and you will need more than a week to see if they work for you. With what we have to deal with doctors should be more flexible in treatments. Can you try another ENT? I don't know if that is an option for you. That would be my suggestion.
" It all makes me anxious and sick with all these decisions and negotiations with doctors, and now I feel it will be my fault if things deteriorate if I refuse the heavy meds." I prefer to choose my own path rather than let a baffoon choose it. If you don't trust the path you are on, change it. It's not about fault, it's about finding what works for you. You and only you are in the best position to research and assess your treatment options. It helps to have a Dr. that is willing to support you. I quit seeing my ENT over this very issue. I met with my GP, had a heart to heart and found he is willing to help me pursue my path as it makes as much sense as anything else he could come up with. Unfortunately, this is not a "take an aspirin and call me in the morning disease". Find a Dr. that is willing to try treatment options you want to pursue. Many of the treatment options have severe repercussions. I chose to start at those with the least side affects and work my way up. Surgery is at the bottom of my list as you start to enter "game over"(can't undo it) territory. I will pursue all my options in the order that makes sense for me. So now that you see what a miserable, selfish old fool I am, I hope you can feel a little bit better about being in control of your treatment. The nice thing about this BB is there are folks at all different points on the path. All in pursuit of the same goal, healing. There is a bunch of knowledge here that would have been unavailable to you 5-10 years ago.
"Anti-Viral's do work for some and you will need more than a week to see if they work for you." If you search for antiviral success stories, you will discover it takes month for AV's to work in some cases. Last time I saw my GP, I took the Gacek and Burcon research papers to use as talking points. The better you educate yourself, the more coherent you will sound to your Dr. After I finished with my speech to my GP, he asked me what path I wanted to take, then said he would support it. Don't give up, get strong. K
Antivirals should be the first action if you are definitively diagnosed with Meniere's. They can not only stop the vertigo, but can also stop the hearing loss. In some cases, like mine, hearing returns. Any doctor or nurse practitioner can script them. You don't need a specialist. ENTs are notorious for being ignorant and stubborn. A lot of folks are finding relief from their primary. Yes. They work for about 90% of the tough cases. Dr. Gacek has scripted out thousands of patients, and other centers around the country are reporting the same success rates. They do not work for everyone. That's a fact. But it's certainly worth a try. And one week is not long enough. You can't say antivirals don't work for you until you've tried the max dose for at least 3-6 months. One member here took even longer than that, but is now enjoying a normal life.