My doctors are wondering if my body has somehow learned to mimic the symptoms of my CIDP without actually having it anymore, as a result of the IV/IG treatment. Has anyone else heard of this happening? They don't seem to be certain about things and as I go down on all of my meds they say there's a chance that the CIDP is still there and I will just get bad again. Not a settling thought. I am considering seeing a CIDP specialist because even though I've seen the best at Cleveland Clinic, I'm still a little concerned about the lack of certainty I'm receiving from my doctors. There also seems to be a lack of consensus over whether you can stay on IV/IG for a long time or not. One day I'm told it's harmless, the next - it's potentially hazardous or harming me now! Sometimes I get mixed messages from the same doctors! I'm going crazy!
When I was first diagnosed with CIDP I went into the hospital and received 10 infusions of IVIG spread out over a months period of time.My Neurologist and a specialist that only deals with the kidneys both told me that long term IVIG infusions tax your kidneys big time.Mine were showing systems of that.Once I was done with the infusions my kidneys went back to normal.Lucky for me I so far don`t need any more IVIG treatments"crossing my fingers"
That being said their are lots of people on here that get IVIG infusions on a regular basics.This illness of ours really is so different with every one and how it effects us.I have come back to almost 100% of where i was before I got CIDP.But I know I could relapse at any time.Remember their is NO cure for our illness only treatments.
You need a specialists to address your concerns. I have made some recovery, in fact, quite a bit, but the Neurologist says the infusions will probably go on forever. I may get to the point that my schedule may change from every 3 weeks to once a month but I haven't reached that point after a year and a half of infusions. I am very lucky to have found a Dr. that is well versed in this condition. I have had no up and downs, just steady improvement. I have gone from walking with a cane to being able to dance and run, albeit not like I used to. So I'm very happy with where I'm at. We have an autoimmune condition that will be with us. Good luck finding the answers you need.
You need a specialists to address your concerns. I have made some recovery, in fact, quite a bit, but the Neurologist says the infusions will probably go on forever. I may get to the point that my schedule may change from every 3 weeks to once a month but I haven't reached that point after a year and a half of infusions. I am very lucky to have found a Dr. that is well versed in this condition. I have had no up and downs, just steady improvement. I have gone from walking with a cane to being able to dance and run, albeit not like I used to. So I'm very happy with where I'm at. We have an autoimmune condition that will be with us. Good luck finding the answers you need.
Brands of IVIG differ greatly with what are actually in the drug. Some brands are known to cause more kidney problems than other brands. They recommend using one that does not have sulcrose (sp?). I have been on IVIG every 21 to 28 days for three years now and do not have any kidney issues. But I guess there is always a chance my body will start to react to the infusions down the way. But for now, I use Gamunex C and have had no side effects what-so-ever. Right after my infusion I feel pretty good except for a slight headache and aches and fatigue.
I'm not sure what your doctors mean when they say your symptoms are "mimicking" CIDP? As far as I understand it, this is a chronic condition and we always have it on some level, albeit hopefully with management of symptoms during bad periods and also periods of remission of symptoms. Regarding the IVIG, it is hard on the kidneys, but taking in lots of fluids during infusions and in periods afterwards and watching kidney function tests on a regular basis should be sufficient for that concern.
I'm new to all of this since I've just been diagnosed in October, 2013, but I've been living with the condition for a few years without knowing what it was. Since being officially diagnosed I've been researching all I can about the condition and treatment. From what I've read, most people tolerate the infusions without too many adverse effects except for the headaches. I had one episode of the aseptic meningitis during the first round of infusions which I was convinced was going to kill me, but after that, they added steroids and a liter of IV fluid with future infusions and I've also increased my oral intake of water to about a gallon a day during the infusion days and pretty much everyday now to keep the headaches at bay. I'm supposed to get two infusions every 4 weeks for at least the next six months. That's the plan right now. So far I feel a bit more energy about two days after the infusions finish, but I still have the diffuse body aches, numbness in both lower legs, and bad low back pain. My neurologist tells me to be patient, that improvement is sometimes not felt until after the first few months of infusions. I'm hoping for the best. So glad I've found this website.
Thank you Skiptech. All I see are specialists, even the best at Cleveland Clinic but it seems they are still not well-versed in the condition! It seems there is a general lack of knowledge though, unfortunately.
Skiptech said:
Rachel,
You need a specialists to address your concerns. I have made some recovery, in fact, quite a bit, but the Neurologist says the infusions will probably go on forever. I may get to the point that my schedule may change from every 3 weeks to once a month but I haven't reached that point after a year and a half of infusions. I am very lucky to have found a Dr. that is well versed in this condition. I have had no up and downs, just steady improvement. I have gone from walking with a cane to being able to dance and run, albeit not like I used to. So I'm very happy with where I'm at. We have an autoimmune condition that will be with us. Good luck finding the answers you need.
I am fairly new to this condition. I was diagnosed in March. When I took my first infusion I had the meningitis and got dehydrated and didn’t show any signs of improvement I am hoping they find something that helps me