Beth Update from MD

    • Anonymous
      May 19, 2008 at 3:07 pm

      [SIZE=”4″]Hi to all and thanks for the replies. Saw MD this AM.
      Stopping Cellcept, YEA! What a huge finanical savings. Increase the Prednisone to 70 mg alternate with 30mg until next visit. Was sorry, to go back up on Prednisone, as truly think it is having an effect on my emotions. I’m not as emotional or down on the days I take the 30 mg.
      Can start working out with low weights, 1 to 3 lbs on all muscle groups except feet and ankles.
      Am reading more on the Anti-MAG IgM with CIDP as sounds like it is treated the same, however has a different prognosis. Not sure, Just now starting to research it.
      Today is a better day. I was able to open a Gator Aide bottle for the first time in seven months.

    • May 19, 2008 at 4:32 pm

      Hi Beth,
      I responded to your other post but it is not there, so….. sorry things have been tough lateley. Your spirits seem much better today, that is wonderful. I was wondering, is there a specific time you have to be on cell cept before it works? I think Rituxan is a minimum of 6 months, just wondering if cell cept might be the same.

      About that gatorade opening, FANTASTIC news! I remember when Kevinwas so excited to open a can of pop, then whe he graduated to gatorade, he was so happy. Frankly, I sometimes have difficulty opening the small ones, and trust me I am “Strong like bull” or so I have been told. So yippee on the gatorade! Continued better days ahead!
      Dawn Kevies mom

    • Anonymous
      May 19, 2008 at 9:22 pm

      Way To Go Beth! Keep Up The Good News! I still have some problems with bottle caps, good thing I don’t drink pop or stuff.;)

    • Anonymous
      May 19, 2008 at 9:35 pm

      Was sorry to hear things havent been going so well for you beth. Can empathise with all you are saying, ‘oh to hop in car and go buy something, making plans for the day and then realising oh thats right legs dont work too well etc’ yup it can be crap alright. on the other hand people who dont have CIDP still dont know what today or tomorrow let alone in 10 yrs time holds for them. just focus on getting thru this day, tomorrow could easily be a slightly better day, and lets face it, even slightly better for us (with CIDP) is something to celebrate so make sure you are kind to yourself.
      I found if i got to the teary (or yelling at the kids stage!!!) it was really nap time! after a couple hours of recharge – and that meant sleeptime not just a put the feet up- i could cope a bit more. fatigue is such a hugely under-rated factor of CIDP so maybe structure it into your day!!!
      Am glad you are now feeling a bit better – i hope it is onwards and upwards for you also.
      all the best, and keep us posted
      kia kaha – stay strong

    • Anonymous
      May 20, 2008 at 12:51 am

      Beth – that is great news!
      As Kiwi Chick says – one Gatorade at a time is all we can do. Celebrate each successful opening!

      Best Wishes