August 28, 2015 at 2:22 pm
I was given a series of IVIG treatments at the hospital when I was first diagnosed. It is common to receive follow up IVIG treatments if you are having some recurring or worsening symptoms?
August 28, 2015 at 5:47 pm
It is common to continue with IVIG. My doctor ordered me to have them every 4 weeks for a year. I have been having bad reactions so I persuaded him to make them every 6 weeks. I just had my first every 6th week recently and didn’t have as bad a reaction. I was told that you can react differently every time because you are getting other peoples plasma and its always different! My case is strange at best. I’ve been diagnosed with several things and recently found out my doctor isn’t “committing” to a diagnosis but he originally started me on IVIG in the hospital last December and I have been getting better VERY slowly. Hope this helps. Take care.
August 28, 2015 at 7:54 pm
Yes it does help. I had 7 treatments in the hospital but nothing has been said about having anymore so I’ll bring it up to my doctor on my visit next week.
I don’t know much about GBS but it sure has kicked my butt. I really hope they can put a finger on what you have so the course of treatments can be effective.
Thank you for sharing this information with me.
September 30, 2015 at 3:55 pm
Is this IVIG treatment usually covered by Insurance or is it a huge expense if I were to go down that road. My doctor hasn’t talked about it but he doesn’t really specialize in GBS to begin with. I’ve had it for over 5 years and my upper body is permanently numb/tingle and cardio kills my breathing so I limit it to just walking.
September 30, 2015 at 7:49 pm
I was diagnosed with GBS mid July of 2015. IVIG treatments are usually covered by insurance and they are expensive if you have to pay for them. You can google the cost to see. IVIG is the usual treatment. I had 7 treatments of IVIG while in the hospital. After coming home the neuropathy in my legs and feet where getting better and then about a month ago it started coming back working it way up my legs to my knees. My neurologist ordered a new series of IVIG treatments by outpatient. I receive 5 infusions of IVIG everyday for a week (5 treatments) and then again every month for another 5 months.
I hope this helps answer your question.
December 13, 2015 at 2:20 pm
I have CIDP and have been taking IVIG for almost a year now— I am a month late getting the infusion and worry that I should not wait much longer? I can’t tell if the IVIG is helping or not, but it is the only medicine prescribed to counteract CIDP. Also has anyone built back their leg muscles after Axonal degeneration caused by CIDP. What
is the success ratio to build back your demiylination (?) after having CIDP for 3 years or so. Thanks — Gary
December 13, 2015 at 5:15 pm
Myelin can grow back at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is agonizingly slow but there has been little that can be done to speed up the process, except for the very expensive and experimental stem cell transplant treatment (HSCT). Axonal damage is another thing and you can read about it here:
There are a number of treatments available, including more experimental ones, besides IVIg/SCIg: Plasma Exchange, Prednisone, Cellcept, Rituxan, Alpha Lapoic Acid, Solu-Medrol, Cytoxan, Imuran, Azathioprine, Dalfampridine, and …. hopefully other members will add some of the treatments I missed. More treatment options and info can be found here:
Deficiencies of vitamins B12 and D have also been known to to be involved with CIDP and some members have cited taking supplements as helping improve their condition. More info here:
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