Ivig thoughts?

General General CIDP Discussion
1

I have gone through one and a half treatments of IVIG in the beginning, wound up unconscious, septic, with a kidney stone, from a UTI. trying to determine if it is worth trying infusions again . At first , the first round seemed to help, until the kidney problems. Neurologist stopped treatments because he thought it was to aggressive. I am now seeing new neurologist with some CIDP experience. Last one had no patients with the disease.

Left last neurologist because of a comment he made to my wife , " just try to make him comfortable " HOWS THAT FOR HELP AND ADVICE ?

EMG and spinal tap was used to diagnose me , along with symptoms that have presented themselves

New neurologist wants to redo testing including MRI of head and spine and another round of EMG's

Not sure of what to try next........ dazed and confused

It's been two years since first diagnosed,i am on Prednisone, not getting any better , nor any worse as far as I can tell, besides the neuropathy in the hands and feet and the fact that I am still wheelchair bound.( can not walk)

I know I have to consult with new neurologist , does anybody know if there is a re-occurrence of kidney problems with on and off IVIG treatment? I would hate to go through the whole kidney thing again, I almost did not make it through that , like I said , septic and unconscious for a week in the hospital.

Also not very fond of hospitals, I am a full assist and they are not very helpful, unless you can get the PT department to send someone down to provide help with movement , weather its to the wheelchair or assist getting on the commode

2

IVIG can absolutely cause damage to your kidneys in the long term. I have full panel blood work alongside extensive kidney function testing on my bloodwork every three months and I have no real issues with my kidneys otherwise. IVIG can be a miracle for people with CIDP but if you had such a horrible reaction to it I'm wondering if maybe you should check with your doctor about other options. I definitely would check about tapering off of the prednisone and I would also ask about the option of trying plasma exchange instead..slightly more invasive but a treatment that helps so many CIDP sufferers. Best wishes!

3

I used to have two stones one in the left and another in the right kidneys you will need to take the stones out and continue with ivig treatment

4

I haven’t had the kidney issues. Ive been doing IVIG FOR 1 1/2 years. Muscle weakness has been a problem. I get IV solumedrol every 3 days. You can also get it in pill form. Prednisone didn’t help me much. Solumedrol has been so helpful bedsides the IVIG

5

I've heard about the kidney issues that everybody else mentioned. I've been on IVIG for a little over a year (every six weeks) with no issues so far and I get my kidneys checked a few times a year. If its me I'd be doing the test over again with your new neurologist, hopefully they are much better than your last one.

Best wishes to you and your family.

6

On IVIG (Gamunex) for almost 5 years now. No side effects or kidney problems so far. Sometimes it depends on what brand of IVIG you are on. If you have a bad reaction to one brand try a different brand that has different additives. Some brands have additives and preservatives that can affect kidney function. Gamunex has a good reputation for not causing kidney damage. I would talk to your neurologist about trying a different brand of IVIG.

7

I have been on IVIG for two years and like chirpyberdie, have have not experienced any side effects. I have it administered at NY Presbyterian Hospital’s infusion department every other week. I’m premeditated with prednisone and Benadryl right before the IVIG, brand by Baxter. Everyone reacts to drugs differently. I suggest you travel wherever necessary to see a neurologist who is one of the top in CIDP treatment. Wishing you success in getting treatment that works for you.
Warmest regards, Ron

8

So sorry to hear about what you have and are going thru. I thought I had it bad. I also don't feel that my Nuro is the right Dr. for me. I have in the past heard people stating that they are seeing a particular Doctor at John Hopkins. His specialty is Nuro muscular diseases. I can't remember his name, but if you call the Neuropathy foundation in NY, they would probably know the name. It's something that I am thinking of doing myself. If you do it before me I would certainly appreciate knowing the name of this Dr. Good luck

9

Thanks for the discussion. I’ve been on IVIG for a year now and this discussion is the first I’ve heard concerning potential kidney issues. I swapped from Octogam to Kiovig (last month) in the hope that the skin rashes that appear post each infusion would cease. Unfortunately this has not been the case for me. I’ll continue with the Kiovig for a while longer. Later on I may try Intragam or seek plasmapheresis.

10

Reply to jokhere
No need to change any ivig brand just continue and do not worry about the rashes
I ised to have it untill the third or fourth infusion and layer on its not there any more
So just continue

11

Hi! When I first had the IVIG infusion I was booked into the hospital in the ICU section under HIGH CARE for five days and ended up for eleven days.The body has to adjust which varies in time from patient to patient. For the last booser I was booked in for three days and ended up being in for five. An improvement.

During all visits I have the Nero' and a Specialist Physician who daily checked my kidneys which included a wake-up @4am every morning to take a blood sample to me analysed before she came into work that morning.

If you don't think the Nero' is doing his/her job FIND ANOTHER. Its your body and your pain and only you know how you are feeling.

12

I have been on IVIG for 7 yrs now with no real problems noted. I had a minor reaction to one brand and it was changed to Gammagard. Without the IVIG I would be in a wheelchair. I know this because I had to come off because of suspicion that I had a pulmonary embolism. It took about a month and I could not support my weight with my arms. Then it was into the wheelchair. Now I'm back on my IVIG with a dose of 26mg 5 days in a row then a week off then back to another M-F of IVIG with the same dose of 26mg every day for 5 more days. That along with Large doses of Lyrica, Cymbalta, Cellcept,Topamax, Metanx, Doxepin, Morphine Sulphate ext. release., Oxycodone instant release, Diclfenac, Baclfen, Lasix, Vit. D, Multi Vitamin, Potassium Chloride,Sennekot, and Valium.

13

That's correct….I get 26GM 5 days a week; every other week.

14

Well my neurologist is good . She figured out what I had and has been helpful . I only had to go through four and drive five hours to find her. I don’t think I would mind so much someone saying make him comfortable as that seems to be hardest.

15

So ... after my last infusion a week ago (the second time with a different brand) I'm again covered in a rash. Interestingly, I've since heard that while a rash is a rare reaction to IVIG, if you've ever had psoriasis then a reaction as I am experiencing is not unexpected.

16

Your case is remarkably similar to mine, except that I had no problem with the Imuran. I also had IVIG at three week intervals, then started the Imuran. I was able to space out my IVIG treatments at longer intervals once the Imuran started to kick in. Eventually, I was able to stop the IVIG altogether. It was a big step, and made me pretty nervous, but it worked out well. Hope you have good success with the Cellcept!

mdolich said:

I was getting IVIG every three weeks since being re-diagnosed from GBS to CIDP in 2006 (due to relapses). As of Feb I was put on Imuran to try and space out my infusions further, but I had a reaction to Imuran, so my neurologist put me on Cellcept. So far it seems to be working. I go every six weeks for my infusions now. I have to get regular blood work done to make sure the Cellcept isn't effecting my Kidneys or Liver function.

IVIG can have an effect the kidneys like Kelly said above. That's the main purpose of blood work every three months, to check the kidney function. So far after nine years of IVIG my kidneys are still functioning just fine.

Good Luck, "Stay Strong and keep a Positive Attitude"

P.S. I will put this out to all the members for more feedback.