I am now into my third month of IvIg infusions. My immunologist, on the basis of finding a SAMD9L mutation (variant of uncertain significance, but likely to be disruptive of function), recommended that I get an IvIg dosage that is "immuno-regulatory" because testing revealed I am both immunodeficient (don't raise enough antibodies to vaccines) and potentially autoimmune due to symptoms of intense burning feet, ankles and calves, and very evident inflammation (red, hot & swollen feet & ankles). So far, I am not noticing any reduction in symptoms, but I recognize that it will be months before I might begin to notice any change. In the meantime, my pain doctors won't prescribe even the lowest dose of opioid because of other meds I'm on, so I have very fragmented sleep, which only makes the pain worse. In addition to my SAMD9L mutation, I also have pathogenic mutations in my SDHB and FBXL4 gene. All three of these genes affect the function of mitochondria (the energy producing organelles found in all cells), and I have been diagnosed with mitochondrial dysfunction. Does anyone in the group have mutations in genes encoding mitochondrial proteins or been diagnosed with mitochondrial dysfunction? Has anyone been diagnosed with erythromelalgia?
Hi @magaret10,
It seems like it was a good six months before my IVig made an impact. I have it for other reasons, but my neuropathy is hum in the background now, instead of screaming in my face. It still gets set off... I also do many other things as mentioned in previous posts in this thread.
What were your side effects? I feel sick and fatigued most days after weekly infusions. Were you drinking a lot of water before and during the infusions? I'm wondering if drinking a lot of water could substitute for the IV fluids that you receive.
Haven’t had that, but recently had alpha-Linoic acid injections once a week and my neuropathy is gone. Company called B-12 in Sarasota, fl gave them and I was amazed. Oral tablets didn’t work. Only lasts about a week & cost $30. But I didn’t care
Germany has been using IV alpha lipoic acid since 1966. The United States is just now starting to use it. The pills don’t work as good. The US says it’s experimental. I wish I could find someone to give them to me in Dallas Texas.
What were your side effects? I feel sick and fatigued most days after weekly infusions. Were you drinking a lot of water before and during the infusions? I'm wondering if drinking a lot of water could substitute for the IV fluids that you receive.
I have been having IVIG infusions fortnightly since August last year. I get 50 mls in 500 mls of fluid fortnightly. It takes about 4 hours.
It has helped greatly in my recovery and I feel good progress.
The day after IVIG I feel weak and tired. As I have had more I have had less side effects.
I don't take in a lot of water but do pass a lot but have found eating lunch half wa trhrough has helped. Maybe you could try that?
I self infuse with subcutaneous IG injections, Hizentra, for CIDP. I was encouraged to switch by my neurologist after 3 years on hospital IVIG for a better quality of life.
I find it it evens out the highs and lows providing a more balanced support. I have to do it weekly but I’m able to be carefully mobile and work at the computer etc.
I’ve been on and off Prien IBIG for more than two years. Once every four weeks on a seven hour drip. Nurse comes to the house. I don’t see any progress and I don’t see any decline from months to months.
Anybody see improvements after their IV plasma treatment or any comments would be appreciated. I understand some people feel a little and then some people don’t so what is your comment? Please leave below thank you very much.
I have been having IVIG infusions fortnightly since August last year. I get 50 mls in 500 mls of fluid fortnightly. It takes about 4 hours.
It has helped greatly in my recovery and I feel good progress.
The day after IVIG I feel weak and tired. As I have had more I have had less side effects.
I don't take in a lot of water but do pass a lot but have found eating lunch half wa trhrough has helped. Maybe you could try that?
Thank you! It's good to know the IVIg is helping you and the benefit has continued over 9 months. I'll try eating lunch - that will be easy! I'm finally tolerating IVIg much better this week after 5 days of loading infusions and then 5 weekly infusions. It's helping with the nerve pain.
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Hi @magaret10,
It seems like it was a good six months before my IVig made an impact. I have it for other reasons, but my neuropathy is hum in the background now, instead of screaming in my face. It still gets set off... I also do many other things as mentioned in previous posts in this thread.
JFN
What were your side effects? I feel sick and fatigued most days after weekly infusions. Were you drinking a lot of water before and during the infusions? I'm wondering if drinking a lot of water could substitute for the IV fluids that you receive.
How many treatments did you have? How long did it take to get the results? What was the cause of your neuropathy. Thanks.
Germany has been using IV alpha lipoic acid since 1966. The United States is just now starting to use it. The pills don’t work as good. The US says it’s experimental. I wish I could find someone to give them to me in Dallas Texas.
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2 ReactionsHave been taking IVIg since last Sept for SFN, Will have 2nd Rituxmab infusion tomorrow. Still waiting for response.
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2 ReactionsI have been having IVIG infusions fortnightly since August last year. I get 50 mls in 500 mls of fluid fortnightly. It takes about 4 hours.
It has helped greatly in my recovery and I feel good progress.
The day after IVIG I feel weak and tired. As I have had more I have had less side effects.
I don't take in a lot of water but do pass a lot but have found eating lunch half wa trhrough has helped. Maybe you could try that?
-
Like -
Helpful -
Hug
2 ReactionsI take stabilized R-Alpha Lipoic Acid 600mg @ 60 tabs for $38. at Amazon.com.
I self infuse with subcutaneous IG injections, Hizentra, for CIDP. I was encouraged to switch by my neurologist after 3 years on hospital IVIG for a better quality of life.
I find it it evens out the highs and lows providing a more balanced support. I have to do it weekly but I’m able to be carefully mobile and work at the computer etc.
-
Like -
Helpful -
Hug
1 ReactionI’ve been on and off Prien IBIG for more than two years. Once every four weeks on a seven hour drip. Nurse comes to the house. I don’t see any progress and I don’t see any decline from months to months.
Anybody see improvements after their IV plasma treatment or any comments would be appreciated. I understand some people feel a little and then some people don’t so what is your comment? Please leave below thank you very much.
John Rasmussen
727-813-3118
Thank you! It's good to know the IVIg is helping you and the benefit has continued over 9 months. I'll try eating lunch - that will be easy! I'm finally tolerating IVIg much better this week after 5 days of loading infusions and then 5 weekly infusions. It's helping with the nerve pain.