zbrd

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  • zbrd
    March 5, 2010 at 9:47 pm

    Very insightful Gale Force Winds. It sure sounds like you had/have GBS not CIDP. Your ability to return to an active life is very impressive. Do you still get IVIG treatments at all?

    For me, I unfortunatly have CIDP that just won’t “go away”. I recently passed my second year of IVIG treatments every 5th week (for 5 days). By the 4th week I am growing weaker, my muscles (calves especially) start hurting, my hands cramp and get very week and my walking slows to an “old man” shuffle. I also get stingers and electical shocks in various parts of my body.
    In the beginning I tried to return to jogging when I was feeling better, but my legs are so heavy even when I am at my best, so I dropped that effort. I did find last summer (2009) that I could ride a bike pretty well. Sitting down took the weight off my legs and peddling was doable. I rode several times per week sometimes up to 12 miles. Nothing competitive, but I was getting some exercise. But then as I grew closer to “Treatment time” I had no energy and stamina so I would go a couple of weeks without exercise. Very frustrating and I never really got any stronger. What I mean is by the end of summer I wasn’t able to go any farther or longer than the beginning.

    All that said, I am growing to realize I will probably never return to running, my body just can’t do it (even if a bear was chasing me). I recently had to get a “Port” installed to receive the IVIG due to vein issues and that felt like another step backwards.
    I can’t complain too much, as I’m able to work 9 hours a day at my “office” job and I really like my work. I even am able to work from the hospital when I am getting treatment. Of course by the end of the day my CIDP has pretty much worn me out so my evenings aren’t too exciting.
    Maybe someday I will beat this thing and return to jogging I sure miss the feeling of “light feet” under me, it won’t be long before I completely forget what it was like.

    zbrd
    February 25, 2010 at 8:00 am

    My favorite thread on the board. Please keep up the good work.

    zbrd
    February 24, 2010 at 8:55 pm

    This is a great thread, your details are excellent and really have me thinking about this treatment.
    Do you know if it is FDA accepted treatment for CIDP like Gamunex is ?

    I would love to get away from the 5 days of IVIG every 5 weeks.

    zbrd
    January 7, 2010 at 8:23 am

    Yes. When I was tested (EMG) at University of Chicago they used a hair dryer to warm my skin in the entire area they were testing. They constantly kept checking my skin temp and would get the hair dryer out and warm me up.
    They said some of the really nice facilities have special rooms that keep your skin temp regulated.

    zbrd
    December 17, 2009 at 7:21 pm

    We will eagerly await your post….It keeps us checking the site with anticipation!!!

    I’m quite interested in how your stamina/energy is doing?

    zbrd
    November 25, 2009 at 10:57 am

    Great news on the recovery. Please keep us posted.

    Happy Thanksgiving.

    zbrd
    November 23, 2009 at 2:01 pm

    Oh yea, you CAN’T overdue it or you will make things worse. When I walked a ton of miles in Las Vegas 2 months ago, it took me days to feel normal again. Also when I was riding my bike a lot in August (4-6 times per week) I required IVIG 3-9 days earlier than when I took it pretty easy between treatments.
    I found that riding a bike was much easier than walking because I could basically sit down and take weight off my legs. I tell people my legs have 200 pound weights on them, that is how I feel.
    I was riding 10-12 miles several times per week and enjoyed it, but after a 9 hour work day (office work), then riding 10 miles I was done for the evening and by Friday I was toast. That is when I cut back the riding and excessive walking.
    I don’t even try to jog anymore, that makes my legs even heavier than the 200 pounds they each weight…

    zbrd
    November 23, 2009 at 1:38 pm

    Sorry to hear you are struggling at such a young age. I too was running when GBS/CIDP struck.

    IVIG to the rescue. Without IVIG I would be in a wheel chair or worse. It is amazing what it does for me. I function pretty much normally and most folks don’t know anything is amiss.
    CIDP has prevented me from returning to running, and I get fatigued if I do too much physical activity. I also pay for excessive exertion the following day(s).
    I receive 5 days of IVIG every 5 weeks along with low dose Predinsone (5mg) daily.

    Best of luck, I hope your Dr. gets you IVIG very, very soon!

    zbrd
    October 13, 2009 at 2:29 pm

    It sure does take a lot of trial and error to get the medications correct, doesn’t it?

    Can you describe the type of pain you were having (muscle pain, needle pricks, buzzing, etc…) ?

    Did / Does the IVIG relieve the pain (it does for me) ? If yes, for how long ? (I get about 3 weeks of relief).

    Thanks.

    zbrd
    October 1, 2009 at 3:06 pm

    I ran in a 5k race 2 weeks prior to noticing my first symptoms. It was my first ever outdoor race having trained on a treadmill. It was 40 degrees out and raining and we started, finished, snacked and “hung out” in the horse barns of a famous horse track in Lexington Kentucky.
    I think I contracted a bug from the stables while my immune system was down after running the race in adverse conditions. I’ll probably never be able to race again. Darn it was such a short and unspectacular career. 🙂 🙂

    zbrd
    September 24, 2009 at 11:00 am

    Wow a two hour walk after Chemo, that is very impressive. Following every post you make with eager anticipation.
    You are quite the pioneer, I’m praying for you!

    Keep posting every chance you get.

    zbrd
    September 12, 2009 at 9:18 pm

    If I went into the infusion weak I definitely had this problem. I can remember early in my treatments where I could drive to my appointment, walk in and go thru treatment, then barely get back to my car and not be able to even turn the key, I would have to use both hands.
    I also remember getting home and collapsing on the 2 steps getting into my house. My legs would just fold up under me, and I could not get up without pulling myself up on the washer/dryer (very scary for my daughter who was home).
    It would take a few days and then the IVIG would kick in and I would be ok. It wasn’t until I got on a tighter IVIG schedule that I got past this issue (and some prednisone). If I waited too long to get treatment then I sure exited each treatment MUCH weaker than I went in.
    Interesting side note: I used to read a book the entire time I was in treatment (4-5 hours). I quit doing this the last 3 times, instead using wireless internet and doing some work, some iPod listening, etc… I have exited each treatment with much more energy. For me the reading was really tiring me out, no question.

    zbrd
    August 7, 2009 at 8:06 am

    My mistake, they also doubled my concentration to 800mg, so I was getting 80/800, the bag was giant to keep me on the 5% concentration. I went to the 5% concentration after the first few treatments gave me such a headache. I joked with the nurses that my IV bag weighed more than my dog.

    They did increase my rate to a max of 500ml/hr or it would have taken 7 hours to infuse. Previously I maxed out at 275ml/hr.

    zbrd
    August 4, 2009 at 8:38 am

    I’m glad I found this post. I was wondering what was going on….
    I have been on IVIG for 1.5 years, receiving 5 days of treatment every 4-6 weeks. My dosage has been 40g/400ml, and I have tolerated this with no issues.
    Last week I had my 5 day treatment, but they doubled my dosage to 80g/400ml and I too developed the small bumps or rash for the first time. I also had some minor headache issues.
    The “rash” was extremely similar to poison ivy, it itched and looked the same. I couldn’t figure out where I would have gotten P.Ivy but your post sure hits the mark with what I have as well. It has not gone away yet, but is slighly better. Mine hit on my forearms and lower legs. I receive IVIG Gamunex (always have) in the forearms thru normal IV sites, I went about 2.5 days in each forearm site.

    Did you happen to increase dosage recently ?

    zbrd
    April 13, 2009 at 8:15 am

    That is good news, he is responding to the IVIG.
    When my CIDP was at it worst this past summer I went thru 3 seperate IVIG sessions that were 3 days long (40mg) and they did NOT help me more than 60-70%. I felt better, but still had significant weakness like drop foot, slow walking, etc… The treatements were spaced 3 weeks apart, but still no real strength gains, just slight improvement.
    I had a daughter I HAD to walk down the aisle for a wedding, so I sought a specialist. He put me on 60mg of Prednisone and scheduled 5 straight days of IVIG spaced NO MORE than 30 days apart. Well that fixed me up after 2 treatments. After 3 or 4 months of this I regained significant strength.
    I have continued the regime all the while reducing my prednisone down to 5mg and increasing the time between treatments to 37 or 38 days. I even reduced it to 4 days instead of 5.
    I can walk 3 miles per day 4-5 days a week (except for 10-12 days around treatment time). Hills and steps are still a major issue, but flat ground is my friend.
    I have not dropped down to “Just” 3 days of treatment yet primarily due to the lack of results I experienced nearly a year ago.

    Hope this helps….

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