I am relatively new to CIDP with a diagnosis in Dec 2013. Started IVIG in early Dec 2013 and have had monthly infusions since then. I think that I get 35 mg (or is it 35 ml) for 5 days every month of Gamunex. The first bout occurred approximately 2 weeks after my first infusion in Dec 2012 and lasted about 7 days. It did not seem to respond to Immodium. Almost every subsequent infusion resulted in diarrhea within a week of the last day of the infusion. Usually lasts 2 to 4 days. Does any one suffer from this apparent side effect?
I have even changed diet but am experiencing a bout of it
Oh yes, a shitty mess.
I haven’t had that issue, I get
migraine headaches which last
2-3 days after my infusions.
No,not in 7 years.
Occasionally this happens to me. I notice a strange odour also. I am assuming that the Ivig is the culprit. I often have to resort to medication to stop it. I think the strong concentration of antibodies tends to mess up your system. Keep your water intake up and perhaps don't eat any strongly spiced foods or large meals. Stay on some light dry biscuits and cheese maybe and see if that settles it down. Avoid anything else dairy such as milk or cream. Cheese for some reason doesn't seem to make the condition worse. I guess we just have to accept that Ivig can cause all sorts of reactions from headaches that last for days (happens every time for me), nausea and stomach pain, sometimes severe. I have been hospitalised many times. I have just come out of a flare which was absolutely horrible and all the ends of my fingers and toes are now completely numb. Auto immune diseases are just so taxing. If only those who care for us could just understand how difficult it is to deal with it and all the side effects of different treatments and medication.
I haven’t had this problem and I have an infusion every week. Headaches only occurred for me if I wasn’t hydrated or if the rate was to fast.
I think (but don't know since my physician rarely has time to answer questions or have any kind of discussion and yes I'm looking for a new one) but anyway, I think that there are different amounts of the immune globulins in each dose - IgEs or IgAs etc. and that this can cause reactions depending on your individual sensitivity and that these concentrations can vary from dose to dose so that one time you may react negatively and the next time, no problem.
http://en.wikipedia.org/wiki/Enteric_nervous_system
The Fc receptor on our globulin G (an antibody we all possess by the trillions) has gone loopy-genetic-funky-wonky-soupy-deadly in those who have GBS/CIDP. The ability to stop attacks by macrophages (and friends) on our myelin, (a lipid-fatso coating which surrounds our nerves from our tummy to anus in the ENS, gastro system) is defeated.
The Enteric Nervous System is complex and oftentimes tells me I need a diet soda and double cheese burger in the middle of the night... Why is that? The ENS also has everything to do with diarrhea and flatulence and fart jokes.
The ENS can operate independently of the brain and the spinal cord, butt unlike the CNS, it can be marauded and ravaged and pillaged and raped by CIDP VIkings with names like Eric the IgG, Son of IgG, Lief the IgG and Bjourn the IgG, etc
Gammuex-C (which I just switched to) and ALL globulin antibody products contain traces of IgE and IgD. Also; IgG1, IgG2, IgG3 and IgG4 (IgG3 is the one we crave) and also that very heavy dude, IgM. I wonder about IgA, since I think if you get too much IgA your head blows up, like in the movie Scanners... kidding, I hope.
Like every other muscle, the lower bowl and anus must get exact nerve action-potentials along axons, while digesting, or the whole thing (as stated earlier, and so eloquently) become a shitty mess.
Thank God cows don't fly and get CIDP!
BTW- I've have problems with my bowels since I began IvIG. I had to invest in a dual-action toilet plunger and I soon realized that my sojourns to the throne room required intermittent flushes up to 3-4-5 times.
Exercises regularly!
Whoa! Where did you get all that detailed information?
None of these problems for me-yet,touch wood,- but you never know and I'll bear it mind.Isn't it an example of where we need more research to fully understand our condition?
As I have said before us CIDPers come with a relatively young diagnosis and I feel very strongly we have a pioneering role to gain greater understanding of the condition.This is where all of us rare disease lose out ,in the studies and science necessary,Maybe we need someone famous to publicise the condition-that's the sort of stuff people listen to-to get the cash to get the research.
I'm very well at the moment and intend to join the Call 999 for the NHS mums' march in August,from Darlington to London,300 miles,or at least a bit of the way.The NHS beats bankrupcy and getting paralysed again so I feel I'm doing my bit in this way.
Stay away from chicken. 95-99% is dipped in Chlorine or Chloromine baths in the US today. There they absord 5 to 15% of this toxic water. Europe banded this years ago (Over there there is less lobbyist and inside traders immune speculators. (perhaps' TRAITORS' would also be appropriate )
Watch your ratios of Omega 6 to 3's No fried foods.
Watch your phytic & Oalic acid intakes. if you do eat vegetables with the most oxalate dense content :,spinach,Swiss chard,beet greens,collards,okra,parsley,,leeks,quinoa( *may depend on harvest time) compensate their chelation of zinc, calcium and magnesium (you depelet from nerve root therapy) with supplements (*But NOT B6) Excellent ref's @ www.jrorganicsfarm.com
Brown rice Miso (LIVE-UNCOOKED UN PASTRUIZED) like http://shop.goldminenaturalfoods.com/OHSAWA-YAMAKI-ORGANIC-2-YR-BROWN-RICE-MISO-1-LB/productinfo/0403-1001/ this probiotic is also pre and bonds the phytic & Oalic acids that pull bone calcium out into the blood vessels and heart valves/kdneys. Should be eaten raw 1/2 tsp at end of meal (2x per day breakfast and dinner.
HOWEVER just our personal expereince, confirm with your docs!
Hope this helps STOP THE TROTS ;-)
While we're on this runny thread... Anyone here ever suffer from FECAL COMPACTION... and hit the wall, faint, and land at death's door?
I am also having the symptoms you are describing. I have CIDP and have been getting IVIG for 3 years now. In the past 4 months, I have had 3 different blackout episodes where my blood pressure bottoms out, rapid heartbeat, shortness of breath, drenched from perspiring, followed by major diarrhea. The last blackout was the worse so I was taken to the ER. This time I started passing blood which lasted for about 36 hrs. including fever. A CT scan was done and I was told I have colitis. I have an appointment with a gastroenterologist in 2 weeks as he is waiting for my colon to heal some before testing. I am curious if this is somehow tied to the CIDP as both are caused by autoimmune.
Holy Crap Tammy!
I suffered vasovagul reflex and I too went down; sweated like a gladiator, blacked out, my BP plummeted—death was knocking at my front door— luckily the EMTs slipped passed death and carted me away for five glorious days in the local hospital. A CT scan reveal fecal impaction, and that, coupled with dehydration from my previous three-day IvIG session, days and hours scrunched together (necessitated by two Hurricanes bearing down on Hawaii) created 'The Perfect GI Storm", from the top of my stomach to the bottom of my anus in me.
http://en.wikipedia.org/wiki/Vasovagal_response
Like other nerves, the vagus nerve can demyelinate. What really tuned me into the Wiki article was mention of the vagus nerve wandering all over the place, even into the arms and legs, After my fecal impaction event and loss of consciousness, I awoke to many 'instant' and brand new neropathies, even though I was in my solid IvIG remission period.
I also have an appointment with a gastroenterologist next week. We can swap stories of our colons and beyond!
I am an exercise fanatic. After the F.I.E., I lost 16 pounds and I'm TOTALLY convinced that if I were not at the top of my physical condition, I'd be writing to you from the grave.
ALSO SEE:
http://en.wikipedia.org/wiki/Orthostatic_hypotension
Tammy said:
I am also having the symptoms you are describing. I have CIDP and have been getting IVIG for 3 years now. In the past 4 months, I have had 3 different blackout episodes where my blood pressure bottoms out, rapid heartbeat, shortness of breath, drenched from perspiring, followed by major diarrhea. The last blackout was the worse so I was taken to the ER. This time I started passing blood which lasted for about 36 hrs. including fever. A CT scan was done and I was told I have colitis. I have an appointment with a gastroenterologist in 2 weeks as he is waiting for my colon to heal some before testing. I am curious if this is somehow tied to the CIDP as both are caused by autoimmune.
Estaban, the first article you sent describes it, but the last episode included blood which really scared me. These episodes happen out of no where and just don't make sense. The last time which was the worst, I was holding my first and only grandbaby who was just 2 weeks old. I was in an air conditioned room with absolutely no stress. My son, the baby's father, is in med school, so of course he was thinking of all the worse things it could be so he rushed me to the ER. I work full-time as a teacher and have to get to the bottom of this. The first 2 blackouts were at school, and this just can not happen! I should exercise but I am so exhausted after working all day with kids, that I don't have any energy left when I leave school.
We will definitely have to swap stories of our colons....ha! In the real world, I wouldn't tell anyone about this...only online in a private forum...ha.
I neglected to mention one more thing about the last blackout episode. I was at my son's house when it happened and they have well water. I had just completed an infusion 2 days before, so I was drinking a lot of water to hydrate myself. After this happened with me, they decided to test their well water. The test showed bacteria in their water which says a lot to me. Many people had been at their house and I was the only one to get sick. I'm wondering if my immune system is not fighting bacteria correctly which is causing the colitis effects and blacking out with me....which could be linked to the CIDP. Does this make any sense?