IVIG Infusions

Posted by giarc60 @giarc60, Oct 11, 2018

Anyone had success with IVIG infusions for idiopathic neuropathy ?

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@catharbert

Thanks to everyone who responded to my post about starting IVIG for CIDP. Since I've only had 5 days of treatment and no obvious improvement yet, maybe even less strong than before, it has really helped me to hear your stories. I must be patient and stay the course in order to see any improvement. Now I am trying to decide whether or not to have a port put in my chest so that future treatments won't require having needles in my arms. I was told by people who have the ports that they make therapy much easier. I went online and read of the risks and problems and scared myself. Now I'm not sure if I want to go through with having one installed. Can anyone tell me of bad consequences or problems maintaining a port? I am concerned about infection. I already have to catheterize myself 4 x a day as I have damage to the nerves that control my bladder.

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Hi @catharbert
I have a port that was put in for chemotherapy for NHL 3 years ago. I am now using it for IVig. I have not had any infections I think due to diligent nurses scrubbing for what seems like hours before my port is accessed. Some patients use a Lidocaine cream that can be put on beforehand. My port twisted and was difficult to access for a longtime until PT was suggested. So, now the port is accessed easily, so much better than an IV, at least for me.
I hope the IVig works for you. It has helped me immensely!

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Status report. I have been on IVIG for about 45 days – infusions very other week. I just looked at my labs for this period and it shows a decrease in all my blood counts ie red, white, etc This phenomena is called
pancytopenia and seems to affect a minority of people who receive IVIG. The nurse at the infusion center said it is common and noting to worry about. My brilliant husband is worried about it and now so am I. I would be very interested to hear from anyone who has expeienced this condition as a result of IVIG.

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@catharbert

I just had 5 days of IVIG which was prescribed for CIDP (chronic inflammatory demyelinating polyradiculoneuropathy). Survived it but am still skeptical. The people I met there said they had tried stopping the treatments and their symptoms became much worse. Most did not feel that their condition had improved. It is difficult to not be skeptical. Has anyone on this list been treated with IVIG for CIDP? I know that CIDP is challenging to diagnose and I had been infected with Lyme disease while I lived in PA. I was treated with doxycycline each time and after moving to TX had problems which I was told was post treatment Lyme disease (PTLD). This time I was treated with doxycycline again and thought I was over it. Doctors in TX are in denial about Lyme disease even when told I lived out in the woods in PA. It is hard to know what to do. We have considered moving back to MD and Johns Hopkins in Baltimore is doing a lot of research on PTLD which might help me if they accepted me as a patient. Has anyone gone to Johns Hopkins for treatment of Lyme or PTLD?

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My husband had fallen a few times due to what he called "Jello Legs". He had many blood and imaging tests. The results: low creatine, iron, vitamin B6 and high THS, ferritin (1,309), Kappa Free Light Chain (40.6), copper and haptoglobin. All of which didn't provide an answer. The neurologist then did an electrodiagnostic study, where he is poked with needles & electric current. This test she said met the criteria for a multifocal demyelinating neuropathy. Next step, like you 5 days of IVIG for CIPD. Also like you skeptical because 3 weeks out from the treatment and my husband feels no better. If anything more tired. Curious to know, what were your symptoms…good luck !

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@catharbert

Status report. I have been on IVIG for about 45 days – infusions very other week. I just looked at my labs for this period and it shows a decrease in all my blood counts ie red, white, etc This phenomena is called
pancytopenia and seems to affect a minority of people who receive IVIG. The nurse at the infusion center said it is common and noting to worry about. My brilliant husband is worried about it and now so am I. I would be very interested to hear from anyone who has expeienced this condition as a result of IVIG.

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I was first on sub-q IGG then IVIG for a total of a few years. Neuropathy symptoms no better, as a matter of fact they progressed (and still are). It also threw off many other labs, including low platelets, red/white cells. (Yes, common response to being on the infusion.) Since being off of IGG my platelets have normalized. But, my white cells are still low because I also have CVID.

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