I have a primary immune deficiency and had IVIG for about a year. It is a great thing for that condition. Now I also have chronic inflammatory demyelinating polyradiculoneuropathy. I just had another nerve test and my neurologist wants me to go back on it. I'm also getting weird infections like osteomyelitis caused by a staff infection along with MRSA so I'm also seeing my immunologist for IVIG too. Hopefully between the two someone is going to get it approved. As another member said getting your insurance to approve IVIG is a big battle because it's very costly. I used to get my infusions at home
I’m in Australia and going in for my first round of 5 next week. Firstly diagnosed with SFN then LFN as well and now CIDP so by process of elimination ie lumbar puncture mri nerve tests here we are ….fingers are crossed.
I’m in Australia and going in for my first round of 5 next week. Firstly diagnosed with SFN then LFN as well and now CIDP so by process of elimination ie lumbar puncture mri nerve tests here we are ….fingers are crossed.
@azza1
Try to drink as much water as you can ( not more than 120 ounces) the day before,the days of, and the days after, this is done to reduce headaches. I also try to move as much as I can, while having the infusion, all that water helps ;).
I’m in Australia and going in for my first round of 5 next week. Firstly diagnosed with SFN then LFN as well and now CIDP so by process of elimination ie lumbar puncture mri nerve tests here we are ….fingers are crossed.
Just found out that I am going this monday for my first round of 5 also. Mine is SFN due to Sjogren's with muscle wasting and balance problems. Pain has been a recent phenomina. Fingers crossed to both of us.
Hi there. I’ve received IVIG infusions at home every 3 weeks for just over a year. I’m not the typical neuropathy patient. I’m 41 and in good shape. I don’t have any of the “smoking gun” co-morbidities. My neuropathy started in one toe, occurring occasionally. It spread to other toes, then both feet and continued to climb up my feet. My Rheumatologist referred me to the Ophthalmology & Neurology Clinical Department at Michigan State University. There they conducted all of the objective tests, most of which came back normal. I also had DNA sequencing through INVITAE which showed genetic mutations. Those mutations hadn’t been seen before so it’s unclear whether they are pathogenic. A high quality lab test revealed I have 3 times the normal level of the TS-HDS antibody. A hole punch biopsy confirmed Small Fiber Neuropathy, and that I had fewer sweat glands than normal.
My doctor hospitalized me for 5 days for my first infusion, but then my insurance wouldn’t cover it; citing the reason, The FDA doesn’t approve of the medication to treat my illness. That’s part of the problem- this is a rare condition, so my specific illness doesn’t have any known treatments or cures. It took doing due diligence and researching scientific articles and clinical trials on my own to assist my doctor with the appeals to get my insurance to approve the IVIG Infusions. It took 10 appeals! The company I infuse with is Optum Health. I highly recommend them. Their nurses are knowledgeable and the pharmacy is accessible for questions. My nurse gives the advice to other nurses who provide at home infusions not to “pool their patient’s medication.” Each batch is sourced from thousands of donors and has a LOT Number. It’s important to keep a daily journal of your symptoms so you can gauge the efficacy of one batch vs another.
I don’t think the outcome or benefits of IVIG are one-size-fits-all. I didn’t notice any dramatic changes for several months. I first noticed how terrible I felt when I was about due for another Gammaplex infusion. After a year of treatment I noticed less fatigue, but the fatigue wasn’t eliminated. The neuropathy, which was aggressively progressive, stopped spreading and was contained to my toes only. I had less mental fog and more energy. The stinging, burning sensations were markedly diminished, but the itchy, pins and needles remain.
I did have a really bad infusion once which caused me to be very sick with flu like symptoms. I felt mentally detached from myself and very depressed.
This can happen, and reactions are more likely to occur if you have an A blood type because the medication contains anti A antigens. I would have your blood type tested before you infuse, even though you’ll be told it isn’t relevant. Blood typing after you infuse isn’t as reliable due to the amount of donors, so a hospital will take extra measures if you needed to receive blood, like in the case of surgery. I’m currently waiting for records from a surgery I had in 2012 to learn what my blood type was then, because I think it has changed and now tests to be O positive. (You can purchase a professional blood typing kit for as little as $10 on Amazon.)
My doctor prescribed “pre-meds” to be taken just before an infusion. These are just Benadryl and acetaminophen. To reduce negative side effects directly after an infusion it’s really important to stay well hydrated. This will help lessen the feelings of nausea, headaches, body aches, and dizziness. I highly suggest drinking coconut water and eating avocados the day of an infusion.
I have developed what feels like new but mild neuropathy in my hands and forearms. My doctor explains these sensations can occur as a result of the nerves healing. In my case, given the amount of time I’ve been receiving infusions, my doctor thinks we should switch gears because my body is attacking itself at a faster rate and more radical measures may need to be taken to prevent the attacks spreading to other organs.
Welcome @angelinaboss, Sorry to hear you have so much on your plate at such a young age. It's great to see that you are your own advocate and have already picked up on learning as much as you can about your conditions and available treatments. Teaching hospitals and major health facilities with specialists are definitely the place to go when you aren't getting answers or help with your condition. You touched on something that I found extremely important when I was struggling with PMR, keeping a daily log. I didn't need it with my small fiber peripheral neuropathy since they came on gradually for me over 25 to 30 years and then only numbness and some tingling with no pain. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.
Hi there. I’ve received IVIG infusions at home every 3 weeks for just over a year. I’m not the typical neuropathy patient. I’m 41 and in good shape. I don’t have any of the “smoking gun” co-morbidities. My neuropathy started in one toe, occurring occasionally. It spread to other toes, then both feet and continued to climb up my feet. My Rheumatologist referred me to the Ophthalmology & Neurology Clinical Department at Michigan State University. There they conducted all of the objective tests, most of which came back normal. I also had DNA sequencing through INVITAE which showed genetic mutations. Those mutations hadn’t been seen before so it’s unclear whether they are pathogenic. A high quality lab test revealed I have 3 times the normal level of the TS-HDS antibody. A hole punch biopsy confirmed Small Fiber Neuropathy, and that I had fewer sweat glands than normal.
My doctor hospitalized me for 5 days for my first infusion, but then my insurance wouldn’t cover it; citing the reason, The FDA doesn’t approve of the medication to treat my illness. That’s part of the problem- this is a rare condition, so my specific illness doesn’t have any known treatments or cures. It took doing due diligence and researching scientific articles and clinical trials on my own to assist my doctor with the appeals to get my insurance to approve the IVIG Infusions. It took 10 appeals! The company I infuse with is Optum Health. I highly recommend them. Their nurses are knowledgeable and the pharmacy is accessible for questions. My nurse gives the advice to other nurses who provide at home infusions not to “pool their patient’s medication.” Each batch is sourced from thousands of donors and has a LOT Number. It’s important to keep a daily journal of your symptoms so you can gauge the efficacy of one batch vs another.
I don’t think the outcome or benefits of IVIG are one-size-fits-all. I didn’t notice any dramatic changes for several months. I first noticed how terrible I felt when I was about due for another Gammaplex infusion. After a year of treatment I noticed less fatigue, but the fatigue wasn’t eliminated. The neuropathy, which was aggressively progressive, stopped spreading and was contained to my toes only. I had less mental fog and more energy. The stinging, burning sensations were markedly diminished, but the itchy, pins and needles remain.
I did have a really bad infusion once which caused me to be very sick with flu like symptoms. I felt mentally detached from myself and very depressed.
This can happen, and reactions are more likely to occur if you have an A blood type because the medication contains anti A antigens. I would have your blood type tested before you infuse, even though you’ll be told it isn’t relevant. Blood typing after you infuse isn’t as reliable due to the amount of donors, so a hospital will take extra measures if you needed to receive blood, like in the case of surgery. I’m currently waiting for records from a surgery I had in 2012 to learn what my blood type was then, because I think it has changed and now tests to be O positive. (You can purchase a professional blood typing kit for as little as $10 on Amazon.)
My doctor prescribed “pre-meds” to be taken just before an infusion. These are just Benadryl and acetaminophen. To reduce negative side effects directly after an infusion it’s really important to stay well hydrated. This will help lessen the feelings of nausea, headaches, body aches, and dizziness. I highly suggest drinking coconut water and eating avocados the day of an infusion.
I have developed what feels like new but mild neuropathy in my hands and forearms. My doctor explains these sensations can occur as a result of the nerves healing. In my case, given the amount of time I’ve been receiving infusions, my doctor thinks we should switch gears because my body is attacking itself at a faster rate and more radical measures may need to be taken to prevent the attacks spreading to other organs.
I’m in a similar boat. 35 yo F, diagnosed with SFN at 30. I have had burning pain since the beginning but recently developed skin crawling as well, both diffuse across my body.
I also have been doing IVIG for about six months and am unsure whether it is helping. Genetic testing is pending.
May I ask what pain meds you have tried? I take lamictal, Gabapentin, and gralise. Duloxetine was unhelpful.
I also noticed you see a rheumatologist. Do you take any biologics? One theory is that my RA meds (initially humira, now Xeljanz) have caused or contributed.
Looking for new ideas, thanks and all the best! What a tough fight this is.
Arctic,
Has anyone mentioned to you the possibility of doing SCIG self-infusions on a daily basis? Maybe having the immunoglobulin spread out throughout the month would work better. I have an immune disease and rather than going to an infusion center for IVIG treatments once a month I infuse immunoglobulin subcutaneously daily. That way the immunoglobulin is spread out evenly throughout the month.
I have CIDP — chronic inflammatory demyelinating polyneuropathy, which is autoimmune — and receive 5 IVIG infusions of 40 grams each in every 4-week cycle. Without it, I would be a quadriplegic by now. (I can walk with a cane but have terrible balance and constant fatigue because I lost 80% of the nerve function in my legs before I was properly diagnosed.) I have my doses spread out over the month so I always have a consistent level in my body. This is not a drug that will help your neuropathy in one dose. It’s meant to be used longterm. Some doctors give up too soon, judging from the experiences of many patients I know. And in many cases its primary effect is to keep you from getting worse. It’s not a cure, although some people can go into remission. It’s the first-line treatment for autoimmune neuropathy, which is not curable.
I also have CIDP along with a multiple of autoimmune diseases and a TBI in 3/4/22 and of course immunocompromised. I started IVIG infusions about 4 months ago and have not noticed any relief. My neurologist and rheumatologist want me to continue and start medicinal marijuana. I am in constant pain, numbness in all extremities and no taste or smell from my TBI. If anyone has any suggestions it would be appreciated
I also have CIDP along with a multiple of autoimmune diseases and a TBI in 3/4/22 and of course immunocompromised. I started IVIG infusions about 4 months ago and have not noticed any relief. My neurologist and rheumatologist want me to continue and start medicinal marijuana. I am in constant pain, numbness in all extremities and no taste or smell from my TBI. If anyone has any suggestions it would be appreciated
I have same symptoms as you without loss of taste or smell.
I do have numb lips for 11 yrs now,cause unknown.
Started with first set of symptoms many yrs ago.
No one knows why, very frustrating.
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I have a primary immune deficiency and had IVIG for about a year. It is a great thing for that condition. Now I also have chronic inflammatory demyelinating polyradiculoneuropathy. I just had another nerve test and my neurologist wants me to go back on it. I'm also getting weird infections like osteomyelitis caused by a staff infection along with MRSA so I'm also seeing my immunologist for IVIG too. Hopefully between the two someone is going to get it approved. As another member said getting your insurance to approve IVIG is a big battle because it's very costly. I used to get my infusions at home
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Helpful -
Hug
1 ReactionI’m in Australia and going in for my first round of 5 next week. Firstly diagnosed with SFN then LFN as well and now CIDP so by process of elimination ie lumbar puncture mri nerve tests here we are ….fingers are crossed.
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Helpful -
Hug
1 Reaction@azza1
Try to drink as much water as you can ( not more than 120 ounces) the day before,the days of, and the days after, this is done to reduce headaches. I also try to move as much as I can, while having the infusion, all that water helps ;).
-
Like -
Helpful -
Hug
3 ReactionsJust found out that I am going this monday for my first round of 5 also. Mine is SFN due to Sjogren's with muscle wasting and balance problems. Pain has been a recent phenomina. Fingers crossed to both of us.
-
Like -
Helpful -
Hug
1 ReactionHi there. I’ve received IVIG infusions at home every 3 weeks for just over a year. I’m not the typical neuropathy patient. I’m 41 and in good shape. I don’t have any of the “smoking gun” co-morbidities. My neuropathy started in one toe, occurring occasionally. It spread to other toes, then both feet and continued to climb up my feet. My Rheumatologist referred me to the Ophthalmology & Neurology Clinical Department at Michigan State University. There they conducted all of the objective tests, most of which came back normal. I also had DNA sequencing through INVITAE which showed genetic mutations. Those mutations hadn’t been seen before so it’s unclear whether they are pathogenic. A high quality lab test revealed I have 3 times the normal level of the TS-HDS antibody. A hole punch biopsy confirmed Small Fiber Neuropathy, and that I had fewer sweat glands than normal.
My doctor hospitalized me for 5 days for my first infusion, but then my insurance wouldn’t cover it; citing the reason, The FDA doesn’t approve of the medication to treat my illness. That’s part of the problem- this is a rare condition, so my specific illness doesn’t have any known treatments or cures. It took doing due diligence and researching scientific articles and clinical trials on my own to assist my doctor with the appeals to get my insurance to approve the IVIG Infusions. It took 10 appeals! The company I infuse with is Optum Health. I highly recommend them. Their nurses are knowledgeable and the pharmacy is accessible for questions. My nurse gives the advice to other nurses who provide at home infusions not to “pool their patient’s medication.” Each batch is sourced from thousands of donors and has a LOT Number. It’s important to keep a daily journal of your symptoms so you can gauge the efficacy of one batch vs another.
I don’t think the outcome or benefits of IVIG are one-size-fits-all. I didn’t notice any dramatic changes for several months. I first noticed how terrible I felt when I was about due for another Gammaplex infusion. After a year of treatment I noticed less fatigue, but the fatigue wasn’t eliminated. The neuropathy, which was aggressively progressive, stopped spreading and was contained to my toes only. I had less mental fog and more energy. The stinging, burning sensations were markedly diminished, but the itchy, pins and needles remain.
I did have a really bad infusion once which caused me to be very sick with flu like symptoms. I felt mentally detached from myself and very depressed.
This can happen, and reactions are more likely to occur if you have an A blood type because the medication contains anti A antigens. I would have your blood type tested before you infuse, even though you’ll be told it isn’t relevant. Blood typing after you infuse isn’t as reliable due to the amount of donors, so a hospital will take extra measures if you needed to receive blood, like in the case of surgery. I’m currently waiting for records from a surgery I had in 2012 to learn what my blood type was then, because I think it has changed and now tests to be O positive. (You can purchase a professional blood typing kit for as little as $10 on Amazon.)
My doctor prescribed “pre-meds” to be taken just before an infusion. These are just Benadryl and acetaminophen. To reduce negative side effects directly after an infusion it’s really important to stay well hydrated. This will help lessen the feelings of nausea, headaches, body aches, and dizziness. I highly suggest drinking coconut water and eating avocados the day of an infusion.
I have developed what feels like new but mild neuropathy in my hands and forearms. My doctor explains these sensations can occur as a result of the nerves healing. In my case, given the amount of time I’ve been receiving infusions, my doctor thinks we should switch gears because my body is attacking itself at a faster rate and more radical measures may need to be taken to prevent the attacks spreading to other organs.
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6 ReactionsWelcome @angelinaboss, Sorry to hear you have so much on your plate at such a young age. It's great to see that you are your own advocate and have already picked up on learning as much as you can about your conditions and available treatments. Teaching hospitals and major health facilities with specialists are definitely the place to go when you aren't getting answers or help with your condition. You touched on something that I found extremely important when I was struggling with PMR, keeping a daily log. I didn't need it with my small fiber peripheral neuropathy since they came on gradually for me over 25 to 30 years and then only numbness and some tingling with no pain. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.
Since you mentioned the TS-HDS antibody, I thought you might be interested in a couple of other discussions:
--- TS-HDS Antibody and Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/ts-hds-antibody-and-small-fiber-neuropathy/
--- FGFR3 ANTIBODY: https://connect.mayoclinic.org/discussion/fgfr3-antibody/
Have you done any research or discussed with your doctors why you have 3 times the normal level of the TS-HDS antibody?
In case you haven't already seen the sites, two of my favorites are:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
Hi Angelina —
I’m in a similar boat. 35 yo F, diagnosed with SFN at 30. I have had burning pain since the beginning but recently developed skin crawling as well, both diffuse across my body.
I also have been doing IVIG for about six months and am unsure whether it is helping. Genetic testing is pending.
May I ask what pain meds you have tried? I take lamictal, Gabapentin, and gralise. Duloxetine was unhelpful.
I also noticed you see a rheumatologist. Do you take any biologics? One theory is that my RA meds (initially humira, now Xeljanz) have caused or contributed.
Looking for new ideas, thanks and all the best! What a tough fight this is.
Alison
Arctic,
Has anyone mentioned to you the possibility of doing SCIG self-infusions on a daily basis? Maybe having the immunoglobulin spread out throughout the month would work better. I have an immune disease and rather than going to an infusion center for IVIG treatments once a month I infuse immunoglobulin subcutaneously daily. That way the immunoglobulin is spread out evenly throughout the month.
Just a thought.
Katrina
I also have CIDP along with a multiple of autoimmune diseases and a TBI in 3/4/22 and of course immunocompromised. I started IVIG infusions about 4 months ago and have not noticed any relief. My neurologist and rheumatologist want me to continue and start medicinal marijuana. I am in constant pain, numbness in all extremities and no taste or smell from my TBI. If anyone has any suggestions it would be appreciated
I have same symptoms as you without loss of taste or smell.
I do have numb lips for 11 yrs now,cause unknown.
Started with first set of symptoms many yrs ago.
No one knows why, very frustrating.