• Anonymous
      November 15, 2010 at 11:18 am

      Forgive me if this comes out sounding like a rant or venting. I was diagnosed with CIDP 6.5 years ago and, apparently, have been very lucky up until now. Lucky in the sense that my flare ups were very predictable; they were triggered by hot and humid weather, of which we don’t get too much, here in Vermont. Each summer, though, there would be a flare after a sustained period of that weather, my Dr. would ramp up my IVIg treatments and the symptoms would abate.

      Of course, CIDP is not supposed to be so predictable. And, now, I am experiencing a sustained flare (over a month so far) that has nothing to do with weather. I have gone from my maintenance does of 35g of IVIg every three weeks, to 50-50-40 in the same period of time (quadrupuling the dosage). I have had some improvement, but also quite a bit of backsliding.

      Throughout the last 6+ years, I had been pushing myself physically because I was so grateful for the opportunity to be able to. And, to be honest, also because I wanted to show that CIDP couldn’t beat me.

      I am trying not to let it beat me, but I also feel the need to admit that it is winning the battle at the moment.

      Again, I do not want to sound whiny. I am fully aware that I have been very lucky and that the level of symptoms that I am experiencing now is lower than what a lot of people live with every day.

      Any thoughts or advice?

      Brian Sullivan,
      Burlington, VT

    • Anonymous
      November 15, 2010 at 12:59 pm

      Hey Brian. Sorry to hear about your struggle right now. I also had this disease down to a timing issue. Was dx about 7 years ago and had a few flair ups but kept them under control with treatments. Went about 18 months with just some pain and a limp. Did the gym every day and pushed myself at work. Same thought as you, I would not let this disease win, take my life. In July I had a flair up, in august started chemo and plasma exchange, plus steroids, and now in November am off work, can hardly walk, and typing is a struggle. But I still went to the gym this morning, am paying for it now as I am done physically, but I refuse to let this thing win. I will give my last breath doing the things I love rather than give up.
      My only advice is do your treatments , push your doctor to make sure that the dx is correct and live today like there is no tomorrow. Keep strong brother.

    • Anonymous
      November 15, 2010 at 2:18 pm

      I will give my last breath doing the things I love rather than give up.
      My only advice is do your treatments , push your doctor to make sure that the dx is correct and live today like there is no tomorrow. Keep strong brother.[/QUOTE]

      That’s just the advice I was hoping for. I was just about ready to call it quits, or at least take a “leave of absence” from the men’s roller derby team I skate with. Truly, at 48 years old and with my balance damaged by CIDP, the last thing I should be doing is roller skating with other people knocking me down. But I just love the audacity of it, especially because I am the oldest skater and have a disability. Screw it, I’m rolling!

    • Anonymous
      November 15, 2010 at 4:52 pm

      [QUOTE=vtsullivan]…. Truly, at 48 years old and with my balance damaged by CIDP, the last thing I should be doing is roller skating with other people knocking me down. But I just love the audacity of it, especially because I am the oldest skater and have a disability. Screw it, I’m rolling![/QUOTE]

      Totally agree….go for it, do all you can!!

    • Anonymous
      November 15, 2010 at 11:22 pm

      Ever thought about plasmapheresis?

      Maybe if you do that & then start with the IVIG’s things will even out? I’d suggest talking to your dr about it. It never hurts to ask!

      BTW, I think it is GREAT you participate in roller derby. I always tell my daughter she has CIDP, CIDP does NOT have her!


    • Anonymous
      November 16, 2010 at 12:01 pm

      Thanks, Kelly. I have an appointment with my neurologist — Dr. Chin at Weill Cornell in NYC — next week. We’ll explore all the possibilities for changing treatments. IVIg has worked really well for me for 6.5 years. I don’t understand why it would stop now.

      It’s great that you are encouraging your daughter that way. Maybe someday, she’ll end up in Roller Derby!


    • Anonymous
      November 16, 2010 at 12:54 pm

      You may just need to up your IVIG dose. Sometimes stress can be a trigger as well as a million other things. So when you have a flare up see if your Dr. can up your dose until it is a little more under control. I have had CIDP for 7 years now. I get 60 mg every month. Just don’t give up. This disease may get to you at times, but don’t let it get the best of you. That is one thing you can control and that is your emotions (even though it doens’t feel like it at times). I won’t let it get me down. I am thankful for the mobility that I have. I say Roller Derby away until they have to PEEL those skates out of your hands! If you loose your balance, it sounds like you have done this for years and are skilled enough that you can figure out how to counteract the imbalance to stay up or at least land so it doesn’t hurt so bad or wear more padding! LOL!

    • Anonymous
      November 16, 2010 at 2:48 pm

      I’m up to 140g per month. I think, when I first started, I was as high as 80g per week for two weeks. Anyway, I will discuss upping the dosage even more.

      Yeah, I am not above falling on my ass and letting other people help me up if I need to!

    • Anonymous
      November 17, 2010 at 9:16 am

      Thank you all for the support and encouragement. I did skate last night. I couldn’t do some of the things that I normally can, but just to be out there was such a feeling of empowerment. I have CIDP; CIDP doesn’t have me! Thanks for those powerful words!

    • Anonymous
      November 17, 2010 at 11:51 am

      VT. So you don’t have drop foot? If you don’t cool. At this point shoes are a challenge for me. Cool, so cool, you can get skates on, do roller derby, and even stand solid with this disease. What team do u play for? Do u guys have a web site? U could be c.I.d.p. Poster boy!

    • Anonymous
      November 18, 2010 at 4:13 pm

      Thankfully, the foot drop was only during the time between the symptoms starting and me getting diagnosed. Now, I can walk and run pretty much as normal, but I have tired muscles that twitch. I also have a lot of sensory deficits, especially in my feet and hands. Sometimes putting the skates on and tieing them is a major challenge because I have a lot of weakness in my hands and forearms.

      [url][/url] is our team’s site. The Burlington Bombers are also on Facebook.

      It’s so hard to explain my illness to my teammates. They are very supportive and want to be helpful, but, unless they know someone with MS, it is very difficult for them to understand.

    • Anonymous
      November 28, 2010 at 11:39 am

      I saw Dr. Chin on the day before Thanksgiving. He believes, based on 6+ years of treating me, that I can get back to the level of function I had before the current flare up. However, because I am taking the maximum dose of IVIg (140g/mo.), the recovery has to be jump started through other means — i.e., steroids.

      During the first year or so of IVIg, I would get a small dose of steroids as a prophylaxis against an adverse reaction (along with Benadryl). Even that small dose made me hyper sensitive to noise, irritable and moody. It interfered with my sleep, too.

      This week, I will be getting 3 infusions of Solucortef (steroid), followed by a 5-day tapered dose of oral Prednisone.

      Does anyone have any advice about how to deal with the expected side effects?


    • Anonymous
      November 28, 2010 at 12:28 pm


      If your steroids are orally taken, try taking them in the AM with food. They will still last all day, but will be wearing off by bedtime instead of jacking you up before sleep. Someone gave me this tip while I was taking prednisone and it helped my sleep immensely.

      I also found that mood swings were the worse when dosages changed. If your neuro has you on a longer term steriod regimen, the mood swings will stabalize as the dosage levels stabalize. The more often the dosage changes the more the moods change. Sorry. Tell your family you love them and that the meds are horrible, but you are still the sweet lovable yourself underneath. You may be angry or cry. Or anywhere inbetween.

      As to the other aspects, I am so happy for you hanging in there with your CIDP this long. I have always been a proponent of doing whatever your body will allow for as long as your body will allow you to do it. One thing I have learned is that there becomes a time where you can no longer “cross the line” successfully and recover like you once did. When you get to that point I would beg you to listen to your body. But you sound like you are doing fine, so keep on keepin on. The longer you can keep what you have, the longer you will have it.

      You are the man.

    • Anonymous
      November 28, 2010 at 1:28 pm

      Thank you, Dick, for the very good advice. The mood swings are what worry me the most. Hell, I have a temper even without the ‘roids.

      I’m getting 3 infusions of Solucortef this week. Same dose each time. From there, I start on 5 days of Prednisone, tapering down each day. I am hoping that the relatively short duration of this will make it easier for my family, co-workers and friends. However, I still remember during one of my first IVIg treatments when I had a tiny bit of Solucortef and wound up ripping some guy a new one for no good reason.

    • Anonymous
      December 7, 2010 at 10:58 am

      Knock on wood or any other hard surface, but the steroid treatment is reducing the symptoms of this extended flare up. Sensation is returning to my fingers and feet, and grip strength has improved. My balance still isn’t what I would like it to be, but is improving slowly.

      I hope this is the jump start that I needed and that the improvement will continue after the ‘roids stop on Saturday.

      Thank you all for your support!

    • Anonymous
      December 17, 2010 at 3:51 pm

      This is a much better emotion than frustration. I am extremely grateful that a week after ending a two week course of steroids, I feel 90% back to where I was before the flare up.

      I am grateful to all of you that provided support.

      Brian Sullivan

    • Anonymous
      December 17, 2010 at 5:52 pm

      Brian how were the side effects i.e. moodiness, lack of sleep etc.? I’m glad to read that you are so much better.

    • Anonymous
      December 19, 2010 at 4:39 pm

      The side effects weren’t as bad as I expected…but I expected them to be pretty bad. I was edgy a lot of the time. If I did anything at night that increased my heart rate, getting to sleep was a real challenge. I was sensitive to noise and found it very hard to attend an office party where there were numerous conversations going on at the same time. I got heartburn a lot.

      All in all, it was a small price to pay for the benefits of ending the flare up.

    • Anonymous
      December 19, 2010 at 7:43 pm

      Thanks VT. Hubby likely will have to go the steroid route soon due to IVIG cost issues. It’s good to hear how others cope with the regime.

    • Anonymous
      December 20, 2010 at 11:38 am

      It’s a shame that cost has to decide the treatment method.

      I forgot to add that, if he is getting the steroids through an infusion, he will probably develop a metallic taste in his mouth during the drip. Lemon drops help.