Hi Harley 22,
What is your diagnostic and what other meds or treatment have you taken that did help you? .y diagnosis is idiopathic neuropathy and IVIG is not doing it. Prednisone and a lot 2 hours daily exercise is returning me to walk
My doctor has prescribed IVIG for my neuropathy. I'm hesitant to try it due to the side effects. She is not sure it will help, since I don't have positive autoimmune markers. She said this is the last thing she has available to try. My neuropathy remains idiopathic but I now suspect has a genetic component. Have others tried IVIG, and what was your experience with benefits and side effects?
Hi @cyp238ress
I have IVig infusions for something else, but I also have neuropathy and that has improved and IVig is
most likely a contributing factor in that. As for side effects... After doing this for a while: drink 120 ounces if water, day before, day of, and day after. I walk around as much as possible, and a very slow infusion rate. I am migraine prone do cranial sacral therapy the day of (@ o'dark thirty). I also take my migraine meds. The IVig as stated is for something else, my body and chemo... so my good side effect is helping with my PN, the bad has been th head aches, which with my new protocol are 2- 4s compared to the yuck before.
My neurologist said I have CIPD told to try IVIG infusion for 5 days straight. No relief only
the worst skin rash from heads to toe. Now on Dupixent twice a month. rash gone/ I give up no more IVIG until something better comes along?
Hello @cyp238ress. I noticed your interest in IVIG so you will see that I have moved your post to join others already discussing this topic. You can find your post here now:
- Has anyone had IVIG Infusions for Neuropathy?: https://connect.mayoclinic.org/discussion/ivig-infusions/
Members such as @harley22@katrina123 and @jfn have all recently commented and @kle has also responded to your post.
Why do you suspect a genetic component and if your suspicions are correct, does your neurologist think IVIG will be successful?
My neurologist said I have CIPD told to try IVIG infusion for 5 days straight. No relief only
the worst skin rash from heads to toe. Now on Dupixent twice a month. rash gone/ I give up no more IVIG until something better comes along?
Balance problems when walking. Use a walker. Started off with foot drop several years ago now even worse. There is no permanent cure for CIPD only IVIG every month if it even works. I just give up and live with it and walker.
Hello @cyp238ress. I noticed your interest in IVIG so you will see that I have moved your post to join others already discussing this topic. You can find your post here now:
- Has anyone had IVIG Infusions for Neuropathy?: https://connect.mayoclinic.org/discussion/ivig-infusions/
Members such as @harley22@katrina123 and @jfn have all recently commented and @kle has also responded to your post.
Why do you suspect a genetic component and if your suspicions are correct, does your neurologist think IVIG will be successful?
I’m on IVIG infusions for CIDP and MGUS neuropathy. It was like a miracle for me, taking me from a wheelchair, only able to pivot, to walking with a walker in the first of five doses. Neuropathy has many causes and I think IVIG works best for neuropathy associated with autoimmune conditions. The cause of the neuropathy should always be sought and treated accordingly. For idiopathic or hereditary neuropathy, a short trial of IVIG seems reasonable and can be abandoned if it makes no difference. Anyone with neuropathy of unknown cause should be checked for monoclonal gammopathy, an under recognized condition not routinely screened for. (MGUS)
My doctor has prescribed IVIG for my neuropathy. I'm hesitant to try it due to the side effects. She is not sure it will help, since I don't have positive autoimmune markers. She said this is the last thing she has available to try. My neuropathy remains idiopathic but I now suspect has a genetic component. Have others tried IVIG, and what was your experience with benefits and side effects?
I've been having IVig infusions every 4 weeks for over a year. It's hard for me to know what any lessening of pain to attribute to the infusions, or to other things I throw at my idiopathic CIDP. But before I started, my nerve test had shown a disheartening jump in the progression of the disease, and a recent test showed that it has stabilized, which is reason enough for me to continue the infusions. I never had any side effects from the infusions. I was just glad that Medicare approved it because there's no way I could begin to afford the Privigen. It's outrageously expensive. I'm grateful for the various doctors who care for me, who listen to me and believe what I tell them. I've had only a few doctors over the years who treated me poorly, but none currently, thank the Lord.
I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no abnormal autoimmune or inflammatory tests. Went from working around the world to being disabled in less than a year. Had to push my neurologist to prescribe it and then push him to help me appeal my insurance coverage, which he did reluctantly. When I exhausted the appeals I was taking wheelchairs through airports and it was looking like I would be using it much more frequently. I have had to self-fund and OMG what a difference. 40% of my symptoms (feet, legs, hands, face...) were gone in a week and it continues to get better. A friend with idiopathic short fiber neuropathy has gone on IVIG and eliminated 100% of her symptoms. There is a double blind trial out of MGH testing IVIG on idiopathic short fiber neuropathy. You can contact Dr. Oaklander at MGH for information, not sure when they will be recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8
IVIG is really restricted by all insurance companies and is being more restricted by the year. There are economic incentives for some doctors not to recommend it. I have been surprised how little there has been on this site about IVIG as it is the only thing I have seen in my research that can reverse many neuropathic symptoms.
Is IVIG a treatment you'll need forever? How often? For how long? Is it expensive is it?
I almost can't walk anymore because of the PN in my feet. It's definitely crippling. I used to be a runner, then a walker of 5 miles a day, and now....it's hard for me to walk through a grocery store. I'm so thankful for being able to order most of my groceries so I just do limited walking in the stores.
I've been having IVig infusions every 4 weeks for over a year. It's hard for me to know what any lessening of pain to attribute to the infusions, or to other things I throw at my idiopathic CIDP. But before I started, my nerve test had shown a disheartening jump in the progression of the disease, and a recent test showed that it has stabilized, which is reason enough for me to continue the infusions. I never had any side effects from the infusions. I was just glad that Medicare approved it because there's no way I could begin to afford the Privigen. It's outrageously expensive. I'm grateful for the various doctors who care for me, who listen to me and believe what I tell them. I've had only a few doctors over the years who treated me poorly, but none currently, thank the Lord.
Previgin infusions did not help me.
Had 7 mos of infusions every 3 weeks x2 days per week.
Thank god my insurance covered the cost, but I’m disappointed it didn’t work for me.
Now I’ve been recommended Rituximab infusions by my neurologist, but my insurance will not cover it.
What they will cover is Rituxan, which would cost me a copay of $1100.00 each time I get it, and it’s not a guarantee that it will work for my CIDP.
As a result, I’ve decided to hold off for now, I can’t afford the copay, especially since there’s no guarantee it will work for me.
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Hi Harley 22,
What is your diagnostic and what other meds or treatment have you taken that did help you? .y diagnosis is idiopathic neuropathy and IVIG is not doing it. Prednisone and a lot 2 hours daily exercise is returning me to walk
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1 ReactionHi @cyp238ress
I have IVig infusions for something else, but I also have neuropathy and that has improved and IVig is
most likely a contributing factor in that. As for side effects... After doing this for a while: drink 120 ounces if water, day before, day of, and day after. I walk around as much as possible, and a very slow infusion rate. I am migraine prone do cranial sacral therapy the day of (@ o'dark thirty). I also take my migraine meds. The IVig as stated is for something else, my body and chemo... so my good side effect is helping with my PN, the bad has been th head aches, which with my new protocol are 2- 4s compared to the yuck before.
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Helpful -
Hug
2 ReactionsMy neurologist said I have CIPD told to try IVIG infusion for 5 days straight. No relief only
the worst skin rash from heads to toe. Now on Dupixent twice a month. rash gone/ I give up no more IVIG until something better comes along?
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2 Reactionshttps://medlineplus.gov/download/genetics/condition/small-fiber-neuropathy.pdf
Here is the information on small fiber neuropathy and genetics
May I ask what your cidp symptoms and if any treatments help you? Thanks.
Balance problems when walking. Use a walker. Started off with foot drop several years ago now even worse. There is no permanent cure for CIPD only IVIG every month if it even works. I just give up and live with it and walker.
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Like -
Helpful -
Hug
2 ReactionsI’m on IVIG infusions for CIDP and MGUS neuropathy. It was like a miracle for me, taking me from a wheelchair, only able to pivot, to walking with a walker in the first of five doses. Neuropathy has many causes and I think IVIG works best for neuropathy associated with autoimmune conditions. The cause of the neuropathy should always be sought and treated accordingly. For idiopathic or hereditary neuropathy, a short trial of IVIG seems reasonable and can be abandoned if it makes no difference. Anyone with neuropathy of unknown cause should be checked for monoclonal gammopathy, an under recognized condition not routinely screened for. (MGUS)
-
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Helpful -
Hug
6 ReactionsI've been having IVig infusions every 4 weeks for over a year. It's hard for me to know what any lessening of pain to attribute to the infusions, or to other things I throw at my idiopathic CIDP. But before I started, my nerve test had shown a disheartening jump in the progression of the disease, and a recent test showed that it has stabilized, which is reason enough for me to continue the infusions. I never had any side effects from the infusions. I was just glad that Medicare approved it because there's no way I could begin to afford the Privigen. It's outrageously expensive. I'm grateful for the various doctors who care for me, who listen to me and believe what I tell them. I've had only a few doctors over the years who treated me poorly, but none currently, thank the Lord.
Jim
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3 ReactionsIs IVIG a treatment you'll need forever? How often? For how long? Is it expensive is it?
I almost can't walk anymore because of the PN in my feet. It's definitely crippling. I used to be a runner, then a walker of 5 miles a day, and now....it's hard for me to walk through a grocery store. I'm so thankful for being able to order most of my groceries so I just do limited walking in the stores.
Previgin infusions did not help me.
Had 7 mos of infusions every 3 weeks x2 days per week.
Thank god my insurance covered the cost, but I’m disappointed it didn’t work for me.
Now I’ve been recommended Rituximab infusions by my neurologist, but my insurance will not cover it.
What they will cover is Rituxan, which would cost me a copay of $1100.00 each time I get it, and it’s not a guarantee that it will work for my CIDP.
As a result, I’ve decided to hold off for now, I can’t afford the copay, especially since there’s no guarantee it will work for me.