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.
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!
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.
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?
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 !
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.
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.
I have an undiagnosed case of peripheral neuropathy and recently had a lumbar puncture. The first result back on that was a high level of protein (60, with normal range 15 to 45). At that time, my neurologists said they would probably do IVIg since the protein buildup might be immune related and, symptomatically, the disease seemed to be progressing fairly rapidly. All good from my perspective.
Then they repeated my EMG, which showed a slower rate of progression. Now they refuse the IVIg treatment. I pointed out that the EMG can’t measure small fiber changes, and that they haven’t done any autonomic tests. I also pointed out that the EMG team still thinks some of my symptoms are from a radiculopathy, which presumably wouldn’t progress at the same rate as the neuro symptoms.
They won’t budge on the treatment, which is pretty much the last potentially treatable thing it could be. They’re starting now to call it idiopathic, which I believe is Latin for “we’ve done all we plan to”.
Has anyone else had a similar experience or any advice to share? The change in my symptoms is maybe best described by “Last May I could walk 30 miles a week without foot pain, and now I can’t walk to the bathroom without it starting.” It’s not that bad so far, so I don’t want to be whining about it, but I find the trend frightening
I have an undiagnosed case of peripheral neuropathy and recently had a lumbar puncture. The first result back on that was a high level of protein (60, with normal range 15 to 45). At that time, my neurologists said they would probably do IVIg since the protein buildup might be immune related and, symptomatically, the disease seemed to be progressing fairly rapidly. All good from my perspective.
Then they repeated my EMG, which showed a slower rate of progression. Now they refuse the IVIg treatment. I pointed out that the EMG can’t measure small fiber changes, and that they haven’t done any autonomic tests. I also pointed out that the EMG team still thinks some of my symptoms are from a radiculopathy, which presumably wouldn’t progress at the same rate as the neuro symptoms.
They won’t budge on the treatment, which is pretty much the last potentially treatable thing it could be. They’re starting now to call it idiopathic, which I believe is Latin for “we’ve done all we plan to”.
Has anyone else had a similar experience or any advice to share? The change in my symptoms is maybe best described by “Last May I could walk 30 miles a week without foot pain, and now I can’t walk to the bathroom without it starting.” It’s not that bad so far, so I don’t want to be whining about it, but I find the trend frightening
Hello @larry4343. I can empathize with your circumstances in that you seemed to be showing some improvement but now don't have access to the that same treatment. I am sure that is frustrating. I found an existing discussion on IVIg infusions, so you will notice that I have moved your post here:
- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/
Members such as @casey1329@catharbert and @jfn may be able to come back to share some more with you on their IVIg journey.
I have an undiagnosed case of peripheral neuropathy and recently had a lumbar puncture. The first result back on that was a high level of protein (60, with normal range 15 to 45). At that time, my neurologists said they would probably do IVIg since the protein buildup might be immune related and, symptomatically, the disease seemed to be progressing fairly rapidly. All good from my perspective.
Then they repeated my EMG, which showed a slower rate of progression. Now they refuse the IVIg treatment. I pointed out that the EMG can’t measure small fiber changes, and that they haven’t done any autonomic tests. I also pointed out that the EMG team still thinks some of my symptoms are from a radiculopathy, which presumably wouldn’t progress at the same rate as the neuro symptoms.
They won’t budge on the treatment, which is pretty much the last potentially treatable thing it could be. They’re starting now to call it idiopathic, which I believe is Latin for “we’ve done all we plan to”.
Has anyone else had a similar experience or any advice to share? The change in my symptoms is maybe best described by “Last May I could walk 30 miles a week without foot pain, and now I can’t walk to the bathroom without it starting.” It’s not that bad so far, so I don’t want to be whining about it, but I find the trend frightening
@larry4343
Could you please clarify your question? IVig is a treatment for many things and is always difficult to justify. I have not heard of this treatment just for neurapathy, but I am in no way a doctor. Many doctors do not hear that you neuropathy, there is no cure so why bother? I have done cold laser therapy, which worked for me, I do yoga and exercise ( I walk to 2 Bernese Mountain Dogs a couple if times a day), and for the most part, I eat what I should, I eliminated half of my sugat intake.My neuropathy has calmed down, I have done so much work to be able to get out of bed and put my feet on the floor, without pain. My efforts have paid off. I try to make my nerves happy so they can glide!
@larry4343
Could you please clarify your question? IVig is a treatment for many things and is always difficult to justify. I have not heard of this treatment just for neurapathy, but I am in no way a doctor. Many doctors do not hear that you neuropathy, there is no cure so why bother? I have done cold laser therapy, which worked for me, I do yoga and exercise ( I walk to 2 Bernese Mountain Dogs a couple if times a day), and for the most part, I eat what I should, I eliminated half of my sugat intake.My neuropathy has calmed down, I have done so much work to be able to get out of bed and put my feet on the floor, without pain. My efforts have paid off. I try to make my nerves happy so they can glide!
Hi @jfn, yes. I’m really asking if/how people may have had success getting IVIg treatment when their doctors or insurance companies are resistant. It has been shown to be effective in many cases of SFN.
I do exercise daily and eat right, aside from sugar. My symptoms, unfortunately, have become significantly worse in the past six months. IVIg feels like the last hope for anything other than pain meds, but the MDs want a definitive antibody test result before they will prescribe. Which would be fine if they could test for every autoimmune disease. But they can’t.
Hello @larry4343. I can empathize with your circumstances in that you seemed to be showing some improvement but now don't have access to the that same treatment. I am sure that is frustrating. I found an existing discussion on IVIg infusions, so you will notice that I have moved your post here:
- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/
Members such as @casey1329@catharbert and @jfn may be able to come back to share some more with you on their IVIg journey.
Hi @amandajro, thank you for the reply. And the link.
I’m switching hospitals in April (first available) to Mass General. My current neurologist (a stroke specialist) haas been trying to transfer me to one of their own neuromuscular specialists, but they are convinced from an EMG that I have a lumbar radiculopathy with an early case of idiopathic peripheral neuropathy. It’s that team that blocked the IVIg.
FWIW, I’d be happy with a radiculopathy, but two radiologists and a spine surgeon say my MRI is clean. So I’m stuck with one side saying it’s X, and one side saying it’s not. Neither is willing or able to treat, and my neurologist just shrugs.
I had two neurologists, one from Brown neurology in Providence and one from Mass General, called in as a consulting second opinion by my Brown doctor. After many tests proved negative, they diagnosed the onset of my PN as an autoimmune reaction to either spinal surgery or an unrelated two UTI’s following surgery, or medication or anesthesia, etc. This prompted a series of insurance covered iVIG’s which improved my leg strength and range of motion.
That’s my experience, and I am grateful to both neurologists for doing everything they could to improve my condition. After a respite, we will be starting IVIG again, hopefully with insurance approval. It has definitely had benefits for me, with only mild dermatological side effects.
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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!
-
Like -
Helpful -
Hug
1 ReactionStatus 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.
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 !
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.
I have an undiagnosed case of peripheral neuropathy and recently had a lumbar puncture. The first result back on that was a high level of protein (60, with normal range 15 to 45). At that time, my neurologists said they would probably do IVIg since the protein buildup might be immune related and, symptomatically, the disease seemed to be progressing fairly rapidly. All good from my perspective.
Then they repeated my EMG, which showed a slower rate of progression. Now they refuse the IVIg treatment. I pointed out that the EMG can’t measure small fiber changes, and that they haven’t done any autonomic tests. I also pointed out that the EMG team still thinks some of my symptoms are from a radiculopathy, which presumably wouldn’t progress at the same rate as the neuro symptoms.
They won’t budge on the treatment, which is pretty much the last potentially treatable thing it could be. They’re starting now to call it idiopathic, which I believe is Latin for “we’ve done all we plan to”.
Has anyone else had a similar experience or any advice to share? The change in my symptoms is maybe best described by “Last May I could walk 30 miles a week without foot pain, and now I can’t walk to the bathroom without it starting.” It’s not that bad so far, so I don’t want to be whining about it, but I find the trend frightening
-
Like -
Helpful -
Hug
2 ReactionsHello @larry4343. I can empathize with your circumstances in that you seemed to be showing some improvement but now don't have access to the that same treatment. I am sure that is frustrating. I found an existing discussion on IVIg infusions, so you will notice that I have moved your post here:
- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/
Members such as @casey1329 @catharbert and @jfn may be able to come back to share some more with you on their IVIg journey.
Have you considered a second opinion?
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5 Reactions@larry4343
Could you please clarify your question? IVig is a treatment for many things and is always difficult to justify. I have not heard of this treatment just for neurapathy, but I am in no way a doctor. Many doctors do not hear that you neuropathy, there is no cure so why bother? I have done cold laser therapy, which worked for me, I do yoga and exercise ( I walk to 2 Bernese Mountain Dogs a couple if times a day), and for the most part, I eat what I should, I eliminated half of my sugat intake.My neuropathy has calmed down, I have done so much work to be able to get out of bed and put my feet on the floor, without pain. My efforts have paid off. I try to make my nerves happy so they can glide!
-
Like -
Helpful -
Hug
4 ReactionsHi @jfn, yes. I’m really asking if/how people may have had success getting IVIg treatment when their doctors or insurance companies are resistant. It has been shown to be effective in many cases of SFN.
I do exercise daily and eat right, aside from sugar. My symptoms, unfortunately, have become significantly worse in the past six months. IVIg feels like the last hope for anything other than pain meds, but the MDs want a definitive antibody test result before they will prescribe. Which would be fine if they could test for every autoimmune disease. But they can’t.
-
Like -
Helpful -
Hug
3 ReactionsHi @amandajro, thank you for the reply. And the link.
I’m switching hospitals in April (first available) to Mass General. My current neurologist (a stroke specialist) haas been trying to transfer me to one of their own neuromuscular specialists, but they are convinced from an EMG that I have a lumbar radiculopathy with an early case of idiopathic peripheral neuropathy. It’s that team that blocked the IVIg.
FWIW, I’d be happy with a radiculopathy, but two radiologists and a spine surgeon say my MRI is clean. So I’m stuck with one side saying it’s X, and one side saying it’s not. Neither is willing or able to treat, and my neurologist just shrugs.
-
Like -
Helpful -
Hug
4 ReactionsI had two neurologists, one from Brown neurology in Providence and one from Mass General, called in as a consulting second opinion by my Brown doctor. After many tests proved negative, they diagnosed the onset of my PN as an autoimmune reaction to either spinal surgery or an unrelated two UTI’s following surgery, or medication or anesthesia, etc. This prompted a series of insurance covered iVIG’s which improved my leg strength and range of motion.
That’s my experience, and I am grateful to both neurologists for doing everything they could to improve my condition. After a respite, we will be starting IVIG again, hopefully with insurance approval. It has definitely had benefits for me, with only mild dermatological side effects.
-
Like -
Helpful -
Hug
8 Reactions