Gamma globulin for patients with severe muscle pain and weakness

RYO

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Has anyone with severe leg weakness and pain tried immuno globulin? I have read SCIG has less side effects? What dose did you try? Long lasting response?
 

PearlGirl26

Living with CFS for years, recently diagnosed.
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I have done monthly shots of gamma globulin for CVID. It has raised my IGG subclass levels back to normal range and has enabled me to be around people again in a limited capacity without fear of risking infection. I did not notice any changes in pain levels however. The best source of relief in that area I would attribute to acupuncture. It's important you find the right acupuncturist who is knowledgable about CFS/Fibro/HPA access dysfunction. Best of luck!
 

Ema

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Has anyone with severe leg weakness and pain tried immuno globulin? I have read SCIG has less side effects? What dose did you try? Long lasting response?
I think it depends on what is causing the muscle weakness.

Something like myasthenia gravis, an autoimmune disease, might be positively affected by IVIG. But I think you would need to have an idea of the underlying cause to know if IVIG might be useful.

I do subQ replacement weekly. I find it vastly easier and with fewer side effects than traditional IVIG. But there are always exceptions.
 

RYO

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I think it depends on what is causing the muscle weakness.

Something like myasthenia gravis, an autoimmune disease, might be positively affected by IVIG. But I think you would need to have an idea of the underlying cause to know if IVIG might be useful.

I do subQ replacement weekly. I find it vastly easier and with fewer side effects than traditional IVIG. But there are always exceptions.
My initial viral illness caused severe muscle pain and weakness (predominantly lower extremity proximal muscles). I did not have rhabdomyolysis. Autoimmune testing, EMG, and muscle biopsy all normal. Currently, presumed diagnosis is viral myopathy. My Coxsackie subtype 4 was elevated and my stomach biopsy +3 positive for VP1 enteroviral protein. I use to run, bike, kayak, rip stick and golf before my illness. Now I can barely walk around the block with my dog. Any activity leads to severe burning aching sensation especially at night. I also have random muscle fasciculations all night long.

As with most CFS sufferers, I have PEM, sleep disturbance, and periodic brain fog. Luckily, my autonomic dysfunction got better after 8-10 months.
 

PearlGirl26

Living with CFS for years, recently diagnosed.
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My initial viral illness caused severe muscle pain and weakness (predominantly lower extremity proximal muscles). I did not have rhabdomyolysis. Autoimmune testing, EMG, and muscle biopsy all normal. Currently, presumed diagnosis is viral myopathy. My Coxsackie subtype 4 was elevated and my stomach biopsy +3 positive for VP1 enteroviral protein. I use to run, bike, kayak, rip stick and golf before my illness. Now I can barely walk around the block with my dog. Any activity leads to severe burning aching sensation especially at night. I also have random muscle fasciculations all night long.

As with most CFS sufferers, I have PEM, sleep disturbance, and periodic brain fog. Luckily, my autonomic dysfunction got better after 8-10 months.
Do you mind if I ask who ordered the stomach biopsy? Was that through a gastro doc or another kind?
 

RYO

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Do you mind if I ask who ordered the stomach biopsy? Was that through a gastro doc or another kind?
Gastro performed stomach biopsy and I asked pathology lab to send specimen to EVMED (Dr. Chia). I spoke with virologist in Nebraska who specializes in Coxsackie. He questioned validity of stomach biopsies. I haven't found any studies to confirm or refute Dr. Chia's research.

I tried acupuncture last year several times with minimal relief. I found new acupuncturist who is using electroacupunture. So far so good. Desperate for pain relief without turning to narcotics.