IVIG Infusions

Posted by giarc60 @giarc60, Oct 11, 2018

Anyone had success with IVIG infusions for idiopathic neuropathy ?

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@dbeshears1

Hi – I’m curious how one can test for CIPD? For my idiopathic neuropathy, my original doc and Duke said “most likely” a post infection but negative for Guillain-Barre (my sudden onset of PN was accompanied by UTI and kidney infection 5 yrs ago). They wanted to watch and see how I progressed, but I moved away after a few years. However, current doctor in new place says IVIG can’t be done because “we don’t know for sure”.
For a host of other reasons, I pray to be re-assigned to another Neurologist in our system soon (well I’ll have a new one in or out of current system either way) – I’d like to have good questions for him about exploring CIPD and the possibility of IVIG providing benefit. Thanks for any thoughts, and good luck with treatment!

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Were you given the antibiotic Cipro for the kidney infection and UTI? Cipro carries a boxed warning from the FDA that it can cause peripheral neuropathy.

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@pacer3702

Were you given the antibiotic Cipro for the kidney infection and UTI? Cipro carries a boxed warning from the FDA that it can cause peripheral neuropathy.

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I am really not sure what regimen of IV antibiotics I was given while in the hospital; I know it was through IV for several days. However, my neuropathy came upon me about 10 days before I was hospitalized. I had gotten weak and numb, and worsened quickly over those 10 days. Then I noticed blood in my urine which prompted me to go to the ER, since my PCP at that time downplayed my symptoms and scheduled me to see a neurologist (who had a 2 month wait). The hospital admitted me the next day when they got my cultures back, and though they immediately started IV antibiotics, it was the next day when my legs totally collapsed and I was wheelchair bound for the next 6 months. With the help of wonderful PT, I learned to stand again and walk with a walker, and strengthened hands/arms to where I could do some things, like use a fork and type (oh the joy of going to the bathroom by myself!!)
So, I can't see how I could blame any antibiotic, though I know to insist, if needed, that going forward not to use that one because I now have PN. I have a hard time believing that the infection in my body (before I noticed the blood) is not strongly corelated to my "idiopathic" neuropathy. But the one time they tested for Guillain-Barre early on 5 1/2 years ago, it came back negative. Everyone takes that one test on me as Gospel, and wouldn't/won't repeat it in case it was wrong or too early to detect then… But Duke University Hospital said "it COULD be a post infection disorder". But because they don't know for sure, nobody will treat it as such, like try IVIG like you would Guillain-Barre to see if I might respond to it. I don't know how much insurance companies tie up our treatments, but I know that I'd be a lot cheaper if I was made able enough to go back to work as a productive finance manager.
Thanks for the suggestion – the questions are good for us to research and see what could have been overlooked!

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Has anyone had to change doctors after already being approved for IVIG by another doctor? For example, I was originally approved for IVIG in CO by a neurologist but am now moving to FL. How would that work? Does a neurologist in FL now have to get approval all over again? I am not changing insurances.

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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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@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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Hello,
Sorry to hear you have been diagnosed with CIDP. I also have CIDP and have been receiving IgG infusions for almost six months. I truly do find improvement for a couple of weeks and a few days before my infusion symptoms return.
I think with this diagnosis this is the best it will be. I also find when I eat healthy foods with large amounts of fruits and veggies I feel much better. I also have physical therapy twice a week and walk 2 miles a day. I have been seeing rheumatology and just started on an immunosuppressive therapy. I hope things get better for you.

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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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I was diagnosed with probable CIDP two and 1/2 years ago, after having progressive neuropathy in one leg for over 30 years. Being over 75, the doctor did not recommend a loading dose, but just recommended a relatively low dose (0.4g/kg) every three weeks. It has definitely helped; without it, I'd probably be in a wheelchair by now. I have had two annual evaluations since starting, and each time they have found definite improvement in strength. So it works for some people. I hope it works for you.

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@dbeshears1

I am really not sure what regimen of IV antibiotics I was given while in the hospital; I know it was through IV for several days. However, my neuropathy came upon me about 10 days before I was hospitalized. I had gotten weak and numb, and worsened quickly over those 10 days. Then I noticed blood in my urine which prompted me to go to the ER, since my PCP at that time downplayed my symptoms and scheduled me to see a neurologist (who had a 2 month wait). The hospital admitted me the next day when they got my cultures back, and though they immediately started IV antibiotics, it was the next day when my legs totally collapsed and I was wheelchair bound for the next 6 months. With the help of wonderful PT, I learned to stand again and walk with a walker, and strengthened hands/arms to where I could do some things, like use a fork and type (oh the joy of going to the bathroom by myself!!)
So, I can't see how I could blame any antibiotic, though I know to insist, if needed, that going forward not to use that one because I now have PN. I have a hard time believing that the infection in my body (before I noticed the blood) is not strongly corelated to my "idiopathic" neuropathy. But the one time they tested for Guillain-Barre early on 5 1/2 years ago, it came back negative. Everyone takes that one test on me as Gospel, and wouldn't/won't repeat it in case it was wrong or too early to detect then… But Duke University Hospital said "it COULD be a post infection disorder". But because they don't know for sure, nobody will treat it as such, like try IVIG like you would Guillain-Barre to see if I might respond to it. I don't know how much insurance companies tie up our treatments, but I know that I'd be a lot cheaper if I was made able enough to go back to work as a productive finance manager.
Thanks for the suggestion – the questions are good for us to research and see what could have been overlooked!

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Through process of elimination, including multiple blood tests, a nerve biopsy, and spinal tap, two neurologists concluded that I had an autoimmune reaction to either spinal fusion surgery, a UTI, medication or anesthesia. My PN is long fiber, axial, and not demyelinating. The recommendation was for IVIg for 3 cycles, and I showed improvement in strength and range of motion in both legs. I just completed a fourth cycle and am scheduled for 2 more cycles before another evaluation. I am also in Aquatherapy with a PT once a week, and that has improved my gait and balance on land.
I hope this information on IVIg helps others.

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@efgh1020

Through process of elimination, including multiple blood tests, a nerve biopsy, and spinal tap, two neurologists concluded that I had an autoimmune reaction to either spinal fusion surgery, a UTI, medication or anesthesia. My PN is long fiber, axial, and not demyelinating. The recommendation was for IVIg for 3 cycles, and I showed improvement in strength and range of motion in both legs. I just completed a fourth cycle and am scheduled for 2 more cycles before another evaluation. I am also in Aquatherapy with a PT once a week, and that has improved my gait and balance on land.
I hope this information on IVIg helps others.

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Thank you – I have an appointment with a new neurologist next month and hoping it means a new discussion versus a general rubber-stamping of maintaining the unknown from the past. As long as he talks and explains, that will be progress. I've only been told "it COULD be a post infection disorder or a vitamin deficiency; but without knowing for sure we can't treat it with IVIG". But I have a list of questions, and I thank you for your input. I'll be happy with 20 second logical responses and reasonings; I'm learning a lot can't be done, and want to make sure diagnostics support that conclusion. I should resume my aqua therapy here probably as it continues to warm up the next couple of weeks; I've missed it!

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@dbeshears1

Thank you – I have an appointment with a new neurologist next month and hoping it means a new discussion versus a general rubber-stamping of maintaining the unknown from the past. As long as he talks and explains, that will be progress. I've only been told "it COULD be a post infection disorder or a vitamin deficiency; but without knowing for sure we can't treat it with IVIG". But I have a list of questions, and I thank you for your input. I'll be happy with 20 second logical responses and reasonings; I'm learning a lot can't be done, and want to make sure diagnostics support that conclusion. I should resume my aqua therapy here probably as it continues to warm up the next couple of weeks; I've missed it!

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My PT has been doing Aquatherapy for over 20 years. I love the freedom of movement I feel in the water. I hope eventually to swim again, even if I have to have a floater belt! A bonus is that I am often in PT while my former aquacize buddies are in class at the other end of the pool. They welcomed me back to the pool, and have cheered me on. I do the same for you, and encourage you to return to Aquatherapy as soon as you can. Best of luck with your new neurologist.

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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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