I get my IVIG every 3 wks like clockwork and have been getting it since June 2014. Is it me, or does anyone else feel as though the IVIG "wears off" before their next infusion? I make it to the 2 wks, 2 days mark and can tell that the effects of the IVIG are wearing off. The fatigue, lead feeling in my extremities, and burning pain comes back. I'm wondering if getting a higher mg per kg dosage of IVIG would make the effects last until the next IVIG or if I should start exploring other options.
I have received IVIG monthly since January 2013. I have regularly experienced weakening that starts about 5-7 days before my infusion. However for the past few months I don’t feel that I’ve been bouncing back after IVIG like I used to. I just saw my Neurologist a few weeks ago and he increased my dosage from 70 grams per month to 80. He also started me on Cellcept. I get my next infusion, at the higher rate in about a week. So I hope I bounce back like I used to with the higher dose.
Oh good! I'm seeing my neuro this Thurs and my next infusion is Fri so hopefully, I will get an increased dosage, too and that it will work as good as it did in the beginning. I hope your infusion goes well and that the cellcept kicks in good for you. :)
I was exactly like yourself Sunshine. I could make it 2 weeks and 2 days and then all of a sudden I could feel my systems coming on like a ton of bricks. My neuorologist decided to put my on IVIG every 2 weeks and ever since I've been just fine. I've been receiving IVIG every 2 weeks for the past 18 months or so and I don't have any complaints. Good Luck
I also did IVIG every three weeks for quite some time. Like you, I felt the effects wearing off a few days before I was due for my next infusion. In fact, a couple of times it was bad enough that I had the infusion moved up by a few days. When I talked to the doctor about moving it up on my own initiative, he said, "That's fine! There is no test for the effects of IVIG. You are the test. If you feel like you need it, then you need it. After all, no one says to themselves, 'Gee, I sure would like to go in for several hours of infusion today.'"
(I wanted to contradict him on that last part - when I was feeling really down, I did wish some times that I could go get a booster.)
Then, my neurologist started me on Imuran, in addition to the IVIG. After several months, I noticed that I was feeling pretty good after three weeks, so I lengthened the interval to four weeks, then five, then six, and eventually stopped the IVIG altogether. It is about a year and a half now since my last infusion.
My neurologist is very forthright about this. It may be that the Imuran took over, and that is the reason I no longer need IVIG. But, it is also possible that the CIDP just burned itself out, as they say, and I would have been fine without the Imuran. He has mentioned the possibility of stopping the Imuran, to see how I do, and I have just about worked up my nerve to try it.
Bill
Don't know how bad your CIDP is, my son's was amost fatal. He found the head of Immunology at NOrthwetern University School of Medicine in Chicago. Please google Dr. Richard Burt. He doesn't treat CIDP, he rids you of it. My son, who needed a wheelchair, had now regained 99% of his function with NO MEDS, NO IVIG, NO PLASMAPHERESIS. Nothing, because he no longer has the disease.
If IVIG isn’t working you could always look into a stem cell transplant with Dr. Burt in Chicago out if Northwestern Memorial Hospital. I had my transplant in March and all of my symptoms are going away, I’m no longer on any medications or treatments and I’m gaining my life back.
@hdanhakl, I just noticed your comment. Dr. Burt is a miracle worker. So glad to know there are others out there. There are support groups on Facebook for Dr. Burt’s protocol. You can find me on Facebook under Stacey Turley Dematos. I can get anyone who is interested linked up to one or both of the support groups where you can gain more information.
I have a dual diagnosis of MS & CIDP. Back in May of 2014, I thought I was surely getting close to my deathbed but kept working (foolishly). I could barely make it up and down the halls and had to hold on to the wall for guidance. I couldn't brush my teeth by myself or get undressed and right before my IVIG treatments began, I couldn't even push a shopping cart whereas a month prior to that, I would use the shopping cart as a walker and just get the bare minimum of groceries to keep my family going. It was bad enough to the point that I was giving my 15 yr old son carte blanche with my debit card and the keys to my car (even though he only had a permit) to go to the grocery store and do the grocery shopping for me. I could just barely walk downstairs, but it would take me an hour to get back up them...2 stairs and rest for several minutes and then 2 stairs more. I was using wetwipes to bathe most days as I required help getting in and out of the shower. I wasn't in a wheelchair, but there were times I thought about bringing one home from the hospital, not that it would have helped much as I didn't have the strength or energy to wheel myself in it. I've been thinking about going to KU Med or Wash U. as they are both close by, but can't drive the distance at this point.
Hdanhakl said:
Don't know how bad your CIDP is, my son's was amost fatal. He found the head of Immunology at NOrthwetern University School of Medicine in Chicago. Please google Dr. Richard Burt. He doesn't treat CIDP, he rids you of it. My son, who needed a wheelchair, had now regained 99% of his function with NO MEDS, NO IVIG, NO PLASMAPHERESIS. Nothing, because he no longer has the disease.
I know my neuro would do that for me, but my boss is out on maternity leave right now and I'm not sure there would be adequate coverage for me to go more frequently at this time which is why I wondered if an increase in dosage per infusion would do the trick or not. Happy you are doing fine and hope I get there! :) I don't think I am a candidate for any immune-modulating drugs as my husband has latent TB and steroids are definitely out of the question and I am not fond of the idea of getting any type of port put in me for PE. I really just want a magic pill!!
Billiam said:
I was exactly like yourself Sunshine. I could make it 2 weeks and 2 days and then all of a sudden I could feel my systems coming on like a ton of bricks. My neuorologist decided to put my on IVIG every 2 weeks and ever since I've been just fine. I've been receiving IVIG every 2 weeks for the past 18 months or so and I don't have any complaints. Good Luck
Whose stem cells do they use for stem cell transplantation?
stadem06 said:
If IVIG isn't working you could always look into a stem cell transplant with Dr. Burt in Chicago out if Northwestern Memorial Hospital. I had my transplant in March and all of my symptoms are going away, I'm no longer on any medications or treatments and I'm gaining my life back.
Hi.
it takes some time for the IVIG to work. I had it for 5 years on and off. It take some time. A bigger dose won’t necesarily help, it’s more about time…
It happens to me but it's manageable.I prefer a regular 4 week calendar so I can travel around.I have to get to Vietnam and back from the UK to see the new grandchild.You have to remember the risks too associated with IVIG and more regular treatments.
So,I happily prefer to manage my "come-down" by impersonating the young layabout I once was and do a lot of dossing for a day or 2 .Then,my next trip comes up-riding around on European trains and more dossing about.I guess CIDP isn't too bad for an old dude like me.
Good luck and do what is best for you.
Hey Sunshine -
They use your own stem cells. I am accompanying my son right this minute into the first phase of Dr. Burt's treatment at Northwestern. It is called mobilization and it is where they stimulate stem cell growth for harvest in about 10 days. Seriously look this up. Hopefully insurance will eventually come through for you as it did for my son. He was accepted into the program 13 months ago and just now getting it done. Good luck.
Sunshine said:
Whose stem cells do they use for stem cell transplantation?
stadem06 said:If IVIG isn't working you could always look into a stem cell transplant with Dr. Burt in Chicago out if Northwestern Memorial Hospital. I had my transplant in March and all of my symptoms are going away, I'm no longer on any medications or treatments and I'm gaining my life back.
I experienced this as well. I was told we couldnt increase the doseage, but have increased the frequency to every 2 weeks. Added predisone as well. Seems to have helped, but we shall see
I am getting my IVIG right now, and am I glad. My symptoms of pain and instability re emerged 7-10 days after the IVIG, then gradually the loss of balance came back. For the last 10 days I’ve been " bouncing off the walls and taking more pain meds. My foot drop has also recurred causing the annoying slapping sound when I go out with friends. This is my 10th IV. @ 50gm per IV. I’m 79 so they are taking it slow. I’m going to look into the Cellcept and Imuran, but I had Imuran once before that caused my hair to fall out. Bummer.
I am so encouraged by each person’s fight vs this disease no matter it’s
severity. Each customizes the treatment to fit the circumstances. I am grateful to all of you. Keep yourself together. Keep communicating any changes here so we can learn more. Bless you!
Ps Tell us more about the stem cell transplants!!! 
Dr. Burt treated ( with HUGE success over 400 MS patients) before he began on CIDP. They are the same disease, just emanate from different areas - MS from the brain, CIDP from the peripheral nerves. Both caused by the immune system & strip the Myelin from the nerves. So having MS with the CIDP is no deterrent to this treatment.
My sister has MS and I CIDP. I told my doc that they must be related. He said they weren’t but I persist in saying they are two faces of the same coin so VERY glad to read your comment about the treatment of both with the same IVIG . Please, keep us posted on more results.
Hdanhakl said:
Dr. Burt treated ( with HUGE success over 400 MS patients) before he began on CIDP. They are the same disease, just emanate from different areas - MS from the brain, CIDP from the peripheral nerves. Both caused by the immune system & strip the Myelin from the nerves. So having MS with the CIDP is no deterrent to this treatment.
Hi Bill good news. I take Imuran, prednisone, and IVIG infusion. The infusions every 8 weeks. However, with Imuran the manufacturer has a difficult time keeping up with demand. So I went without for about 10 days. About 2 days before my infusion. Once completed, I thought I would bounce back. Not!!! I did not have as much fatigue, but burning pain and neuropathy in my extremities. I took pain meds at night to help with sleep. Also no Imuran in my system also affected my digestive system. Now I have the medication for 3 days and I'm feeling the difference on all fronts. As far as the prednisone goes, my neurologist cut me back and then discontinued the med. I've been on prednisone since 2008. So I understand his logic. However, big mistake. I stopped dosing in November and by Christmas I was in sooooo much pain. Nothing help. By New Years I could not walk without help. I was miserable. After my neurologist saw me, he was shocked at my condition. He was using is other patients as a benchmark for me. Which does not work for all. He thinks being on for so long, my body as adjusted to having prednisone. After two days at 20mg per day, the pain subsided. I was due for my infusion in January and with 10mg of prednisone now scheduled I was better. Not perfect but much better. So for now, my neurologist and I think infusions, prednisone, and Imuran are continually in my future.
Robin
Uncle Bill said:
I also did IVIG every three weeks for quite some time. Like you, I felt the effects wearing off a few days before I was due for my next infusion. In fact, a couple of times it was bad enough that I had the infusion moved up by a few days. When I talked to the doctor about moving it up on my own initiative, he said, "That's fine! There is no test for the effects of IVIG. You are the test. If you feel like you need it, then you need it. After all, no one says to themselves, 'Gee, I sure would like to go in for several hours of infusion today.'"
(I wanted to contradict him on that last part - when I was feeling really down, I did wish some times that I could go get a booster.)
Then, my neurologist started me on Imuran, in addition to the IVIG. After several months, I noticed that I was feeling pretty good after three weeks, so I lengthened the interval to four weeks, then five, then six, and eventually stopped the IVIG altogether. It is about a year and a half now since my last infusion.
My neurologist is very forthright about this. It may be that the Imuran took over, and that is the reason I no longer need IVIG. But, it is also possible that the CIDP just burned itself out, as they say, and I would have been fine without the Imuran. He has mentioned the possibility of stopping the Imuran, to see how I do, and I have just about worked up my nerve to try it.
Bill
HEY GEEPSTER - I didn't say Dr. Burt uses IVIG. He treats both the MS & CIDP with an autolalgous stem cell transplant. Stemcells come from your own blood, not a donor's, so there's no possibility of rejections. At79 you may be old, but your sister? If I heard a doctor say that MS & CIDP were not related I'd change doctors. Both are caused by the same immune system destroying the myelin from your nerves. What Burt does is change the immune system which is causing all the problems.
Geepster said:
My sister has MS and I CIDP. I told my doc that they must be related. He said they weren't but I persist in saying they are two faces of the same coin so VERY glad to read your comment about the treatment of both with the same IVIG . Please, keep us posted on more results.
Hdanhakl said:Dr. Burt treated ( with HUGE success over 400 MS patients) before he began on CIDP. They are the same disease, just emanate from different areas - MS from the brain, CIDP from the peripheral nerves. Both caused by the immune system & strip the Myelin from the nerves. So having MS with the CIDP is no deterrent to this treatment.