Micah Rodler

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  • Micah Rodler
    September 20, 2019 at 6:17 pm

    Hi Dana,

    I haven’t responded much, if at all to the Prednisone. It’s been 4 weeks, maybe to soon to tell. Since were not getting a response from the Prednisone, my neurologist decided to give IVIG another try. We struck out at my local infusion centers. Someone suggested contacting a specialty pharmacy for in home infusion. After considerable leg work(pun intended cause my legs, well don’t work) the IVIG arrived today and will be administered in my home next week. Nufactor, Ameripharma and Acredo are specialty pharmacies you might contact to see if it’s an option for you.

    I haven’t had any horrible issues with the Prednisone, aside from sweating like crazy and that hyper active feeling. Before I started the Prednisone, I met with a dietician who recommended an anti-inflammatory diet. I’ve followed it religiously since then. Lots of cruciferous veggies, high omega-3 foods, etc, no processed foods, red meat, dairy, etc. Thus far I’ve managed to maintain my weight, and actually lose a few pounds, despite high dose of prednisone. You might consider discussing this with a dietician to see if it might be a good option for you as well.

    Wishing you lots of luck! Hope you recovery a swift and successful!

    Micah Rodler

    Micah Rodler
    September 16, 2019 at 6:10 pm

    Thanks Mark,

    Sorry for the late response, thought I had responded via email, doesn’t seem to work that way.

    Saw your previous response, great to hear a success story.

    I’m in the trenches now, losing strength in my legs for the last four months, started prednisone 3.5 weeks ago, was scheduled for IVIG last week, but it got postponed due to the shortage.
    Where were you able to get IVIG through the guys up in SF? My current Neuro is in Mt. View and I live in Santa Cruz, which makes things a bit complicated. Debating switching to local SC neuro, as seems necessary to get IVIG here locally, vs going to Stanford(Which is on the center of excellence list) or Forbes Norris.

    Thanks again, my email address is micahrodler@gmail.com if you don’t mind to send your email address there, Ill reach out with more questions, if you don’t mind. Micah

    Micah Rodler
    August 19, 2019 at 6:55 pm

    Thanks so much for your input David.
    Starting PT in a few weeks, I would have started it weeks ago, but waiting a time with patience for my turn.
    In the meantime, I do have a recumbent exercise bike, which I’ve been dabbling with. My symptoms are primarily leg weakness, foot drop, numb feeling in toes when I’m on my feet for a while and pain in my legs. Still walking, but not far, it hurts. I’m finding that days after I peddle the exercise bike, pain increases. Neuro said movement is better than not, so I’m increasing my time on the bike incrementally, despite increased pain. Up to 15 minutes a day now.
    Hoping to make a full court press, whatever treatment I can get, preferably IVIG I think and physio-therapy and diet, and whatever else I can do to improve my overall health. Also awaiting appointment with dietician to see what, if any, diet is best for my situation.
    Thanks again, Micah