I'm scheduled to start IVIG treatments on the 16th of July. However I cannot seem to find anything good that comes of it. I'm being realistic here. I have numbness which I know will progress. I'm not on any pain meds except for an occasional Tylenol. I was so excited that my doctor actually put a name to my problem and now it does not seem to be any better than when I got my fibromyalgia diagnoses. Is CIDP nothing more than a name they have assigned to something they still know nothing about. I’m having an anxiety attacks over this now. Can anyone share any insights?
Has IVIG helped anyone without debilitating side effects?
First ley me wish you good luck. As for me IVIg has helped alot. Nore with the first treatment than my second. Before treatment I hardly felt human. I spent most of my time in bed due to not being able to get around without falling, I now function(all though not like a healthy person) well enough to not feel like a complete bourden to my wife. IVIg well help keep your CIDP under control and from progressing at least extreamly slowed down. In my book it is worth it! Keep your chin up and us informed. Best wishes, Jeffrey
I started IVIG and now am a year into my treatments. As long as I get my IVIG i don't have any symptoms of my CIDP anymore. If i go too long between treatments then some symptoms start to creep up and I know I need another IVIG treatment. But I was miserable when first diagnosed and now I am living my life almost as normal as I was before the diagnosis. I just have to know some limitations and I have to keep my IVIG scheduled every 3 weeks which I find annoying at times. So hang in there. Hopefully the IVIG will calm your symptoms and work wonders for you too.
IVIG does have some side effects. But it saved my life. When I was first diagnosed with CIDP, my doctor prescribed an aggressive treatment plan with IVIG. I received infusions for almost two years. It not only stopped the progression of my CIDP, but I actualy experienced nerve healing. I have been off of IVIG for six months now, with no worsening of my condition.
All the best on the 16th,when i had my first infusion a few hours later my feet began to gradually get warm and some felling in the soles of my feet! Take some form of entertainment with you like a laptop or ipod as the treatments are long and boring.You might be back and forth from the toilet as you are taking on extra fluids. :)
First let me say I hope/pray the treatments work for you. As for me, I have had the initial "loading" infusion of 3 days at 25 grams each and have had 2 monthly treatments at 25 grams each. I had high hopes that this would improve my condition which is being wheelchair bound and taking multiple meds for the nerve pain. This has not happened for me. I cannot tell any difference before or after the treatments. I would like to believe they at least stop any progress of the symptoms for now.
I have been on 50 grams IVIG for 2 years. I do not get better but as long as I get my infusions every 10 days I do not get worst. I receive my infusions at home. My nurse comes and stays with me for the 8 hours that it takes. I also get 50 mg benadryl injection before and after the infusion to help with the side effects. They also inject 500mg saline before the gamunex. I do know that every time the insurance would stop the infusion I would go down hill fast. Good luck.
I was told Gamunux is not compatable with Saline and that is why they inject Dextrose into my veins as the flush before and after the infusion instead of Saline?
Gamunex C is not compatible with Saline. Flushing with saline will cause the Gamunex to clump and make the infusion impossible. D5 (Dextrose 5) is what was always used on me. It is basically just 5% sugar water.
I do not get any saline or dextrose and no more headaches. I'm infused in the hospital and most nurses want the extra bag hanging there but they always honor my wish not to do it. I'm on Gamagard. I take tylenol but no benedryle right before infusions. Like everyone on here says-it's different for us all.
Goodney said:
Gamunex C is not compatible with Saline. Flushing with saline will cause the Gamunex to clump and make the infusion impossible. D5 (Dextrose 5) is what was always used on me. It is basically just 5% sugar water.
i was diag with CIDP last July and commenced IVIG in August. I actually got worse for the first 9 months but then I started to feel that I had consolidated at that point. After IVIG I am relatively sure I feel in better health generally.I used to get a dull , cold horrible ache in my lower back towards the end of every day but that seems to have almost totally disappeared. I am 74 and have always been active.lAST fRIDAY i HAD TrEELOPPERS AND MY GARDENER HERE AND i WORKED VIRTUALLY CONTINUOUSLY FROM 5.30 AM TO DUSK AT 5PM. i CHAINSAWeD CARRIED , PULLED AND PARTICIPATED FULLY . i WANTED TO TEST MYSELF AND WAS ABSOLUTELY EXHAUSTED AT DAY END COLLAPSING INTO BED AT 8PM. tO MY INCREDIBLE SURPRISE i AWOKE sATURDAY MORNING A SBRIGHT AS A BUTTON AND HAVE FELT INCREDIBLY WELL THE LAST FEW DAYS . ABOUT A MONTH AGO i STARTED DOING LIGHT EXERCISES AND HAVE BEEN GETTING LIGHT PHYSIO ON MY LEG MUSCLES ONCE A WEEK.I was laying in bed last night thinking I might try a game of golf again ad I havent been there for 5 years.I still have stiffness , soreness aches in unusual places but at the moment I would absolutely tell you to get into the IVIG and realistically expect that it wiil take many mionths before you are convinced it is doing you any good.
Always look on the bright side of life tra lalala.Ernie
I had Intergram P for 3 days and then once a month for 4 months. It didn't work for me. My Neuro said I was one of the few that can't be helped. There are other treatments but he didn't suggest them. ( it all boils down to the almighty dollar.) I am going to get myself another Doc. Please get your treatment, it hopefully will work for you. What have you got to lose. best of luck. shirl3
Thank you all for your feedback. I am being infused at home so I plan on doing what I can to pass the time. I have to say that I am extremely lucky as right now except for the numbness and lapses in memory I have no underlying illness. It’s scaring me A LOT, but so does progression of the disease.
I’ve never been a particularly spiritual person. But you are all in my prayers.
The ONLY the I have found that helps with my pain is iv/im benadryl and I cannot find a doctor that will prescribe it yet Except for the premeds 50 mg before and after IViG. Narcotics do not work for nerve pain FOR me. I just found this and sent it to my pain mgmt, neuro, and pcp . . . http://www.drugs.com/sfx/benadryl-d-side-effects.html
Note: Central nervous system (CNS) depression is the KEY word. My PCP, Pain MGT and Neuro said there is no proven research that benadryl that works for pain on on CIDP . . . this proves otherwise.
I would like to tell you that I am glad that there is ivig. I have to say however that it depends a little bit on you how you prepare and tolerate it. I prefer my 35 g of gamunex c every week with a preflush ond postflush of d5w. I have tolerated it for 1 year and made steady slow progress. I tried gamguard one time and was having the worst side effects. Its seems that gamaguard is more popular, however i heard that some professionals are shying more and more away from it because of reported bad side effects like blood in urine, flue like symptoms, bad headaches to name a few. With the infusion you should always be very hydrated and start very slow like 10 ml for 30 minutes than double that and so on. The Mayo Clinic has a real good formula for it. I think I would be in a nursing home on a straw by now without ivig. I was finaly able the first time in 18 mos to lift my body of the ground on my own. I pushed up from the old recliner and I could stand up :) ! What a feeling! I hope I keep heeling and I wish you well with your infusions. If one drug does not work look at all factors and don't be scared to try onother name if one does not work. Keep us posted on how things are going.
Hi Kitty, I understand your confusion about this disease, we all share in it to varying degrees. But, even though I can no longer take IVIg, I did get results from it. Before I started it, I had to pull myself up stairs, I had to use a cane, I had lost a lot of mobility and seemed to be getting progressively worse. Background is that I was misdx with MS for 4 yrs, gave myself betaseron shots, was found to have a B12 deficiency, then CIDP, not MS, a brain tumor, blah blah.
I now am wearing heels, stacks but heels, and boots. I am not using a cane and feel pretty good. Other health issues have cropped up that have me on meds that make me feel like crap, but as far as the CIDP, I seem to be in a steady remission now. I had my last treatment in January of 2012. I attribute all my success to IViG. I will have to use chemo and plasmapharesis next. I hope that I stay right where I am.
As to the dx of CIDP, I think that yes, they do assign a lot of diseases to it. I think that it is even possible that I do not have it. With that said, a lot of the diseases that it could be are also helped by IVIG so it is a good thing to still try. Polyneuropathy is so hard to discover the issues over. My MD feels that I have something that no one may ever have been dx with, something new, due to some other wierd things going on. Autonomics mess.
Good luck hon...give it a shot, just be sure to hydrate. I know that some say day before but if you start the morning of you are in good shape, and do insist on premeds. Jan
I wish that you could do it outpatient. But, for me that was important because of the side effects that I went through.
Try to not be afraid hon. Do NOT let them rush you. I have had them go so slow it has taken ten hours. Whatever you need. You will be able to tell. If you feel odd at all, if you get a headache, anything you insist that they slow it. I would tell you to tell them to start way way slow and then speed it up a little at a time each half hour or hour. You have all the time in the world and do NOT let anyone push you. If they do not like it, make them do it at the clinic or hosp. It is really important to not do it fast. Afterward, just watch for the next day or so for any rash or fevers, and call the Dr. You will be fine. None of that is life threatening. If you have anything to worry about, it would happen during. But, they need to know if you have a reaction. Much love sweetie.
kitty said:
Thank you all for your feedback. I am being infused at home so I plan on doing what I can to pass the time. I have to say that I am extremely lucky as right now except for the numbness and lapses in memory I have no underlying illness. It’s scaring me A LOT, but so does progression of the disease.
I’ve never been a particularly spiritual person. But you are all in my prayers.
I had mine infused very slow also. The nurses questioned why mine was so slow. My veins are so bad we went thru 15 in the first 3 days. I had a pic put in. Also had Potassium via IV and Magniesum (40 mg oral) in addition to the 1000 mg of tylenol PO and benadryl IV as premeds. I also was B-12 deficient (take via shot 1/month) and Vitamen D deficient ( take that PO every day). I tried home infusion but was very dissatisfied with the level of care I recieved. Blood presssure must be monitored every 15 minutes; flutuated drastically. It went as low as 56/40 one time. They were giving me coca-cola and I had to call a friend to talk to me because they were afraid I was going to fall asleep. W/home health care, they didn't bring the dextrose lr the first 2 days and I didn't realize it so I was infused w/out fluids along w/the potassium. Ended up w/edema. AND they left me to flush and hepranize my ports (which I got after I got rid of the PIC when I realized after a month the IViG was going to last 23 months). Strongly advice a port. I have a dual luman power port that can get dye if I have to have it w/a CT and a single port so I have the equavalent of 3 ports. Getting potassium and IViG, they cannot go thru the same port, so the dual was needed. My veins are so bad, the Kaiser surgeon that put in the single, could not port the second one dual. Had to send me to the hospital to have a "mapping of the veins" to put it in. A normal person w/good veins can be ported in 15-20 minutes, 1st surgeon tried for ~2hours and couldn't because I have "baby" veins. I HIGHLY recommend you discuss w/your doctor about getting a port because this will require an IV every infusion.
I would concur with everyone above. It does help. I have been on infusions for over three years. I have progressed slightly but I am certain that I would be much worse without it. Stress really affects this disease. My idea would be to not work and take life easier. This disease is definitely affected by stress and overwork. While not everyone get back to normal, it does make life better.