IVIG/SCIG treatment for fatigue

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After finally finding a doctor willing to run extensive immune labs, it turned out I had low IGG levels. I was prescribed IVIG as the first substantive treatment for my fatigue. After enduring the initial side-effects, IVIG had a systemic benefit.

It gave me more energy, supposedly as an immune/auto-immune regulator. (I had stopped having colds/flu/pneumonia when I got ill, so infections were no longer an issue.) I spent a year and a half on IVIG and SCIG (Hizentra) and it improved my health, but only to semi-housebound.

But I lost my PPO insurance coverage for Hizentra, and over the next year and a half I declined to frequently bed-bound.

I struggled to find a mainstream doctor in my new HMO who would treat me. I found an immunologist who diagnosed me with CVID due to low IGG, but he would not fight to get me Hizentra.

Then I found a neurologist who diagnosed me with small fiber neuropathy, and suspected auto-immune autonomic neuropathy. She fought to get me back on Hizentra for autoimmunity affecting my autonomic NS—but she could only get me an immune dose of 9g per week/36g per month, not the auto-immune dose which is double that.

When I restarted Hizentra, it was hard to tell if it was helping with fatigue, but it did reduce some autonomic “nuisance” symptoms (e.g., dizziness). I had better days and worse days.

After a year, I started experimenting with Parkinson’s meds. Levodopa/carbidopa helped for a couple months then pooped out. I then tried RLS meds like miraplex, but they did not help. Then I consistently took a higher dose (although still very low at 25mg) of quetiapine (Seroquel) which I had been taking for sleep. It had a dramatic effect. However, this past year quetiapine has been pooping out every two months or so, and I have been titrating up to try to regain the benefits.

During this time there were several 2 month periods when I did not have Hizentra due to delays in timely insurance re-authorizations. I did not notice a general drop off in health when taking these forced breaks from Hizentra, so I experimented with longer breaks. I felt no decline in my fatigue, just an increase in some minor autonomic symptoms). However the effects of stopping Hizentra were conflated due to my simultaneous experimentation with the Parkinson’s meds.

I decided to stop taking Hizentra because I could no longer discern a positive effect on my fatigue, and now I have a growing stockpile of Hizentra sitting in my fridge. I think I should tell my doctor it only helps with pretty manageable autonomic symptoms, so I don’t really need it. Or maybe I need to take a double auto-immune dosage to get effects?

I guess I am worried that if she can’t treat me with Hizentra (she put a lot of effort into getting me authorized), she will write me off because she will have no clear treatment path, and most mainstream doctors do not like to treat in a trial and error manner outside their purview.

I guess IVIG/SCIG for (autonomic) neuropathy and auto-immunity has been gaining traction. But has anyone had substantive IVIG/SCIG treatment that greatly affected their fatigue? What were the specifics of your treatment?

Does anyone think IVIG/SCIG treatment would help them—what do you hope it will accomplish and by what mechanism?

Sorry if my writing is dense--I tried to break it up.
 

Pyrrhus

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It's great that you had such positive initial effects from IVIG/SCIG!

Do you think you no longer respond to IVIG/SCIG in general, or do you think the lack of response is due to the lower dose?
 
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I think my (immune) physiology changed, probably as I went past the five year mark--that is also when I started responding to dopamine agonists. Since I slowed down and then completely stopped infusing many months ago, I'm been stockpiling the lower immune deficiency dose of 9g per week. I'm not sure if I should formally tell my doctor that I no longer respond or start using my stash to increase my dose to an auto-immune level of 18g or 27g per week for a few months.
 

junkcrap50

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I think my (immune) physiology changed, probably as I went past the five year mark--that is also when I started responding to dopamine agonists. Since I slowed down and then completely stopped infusing many months ago, I'm been stockpiling the lower immune deficiency dose of 9g per week. I'm not sure if I should formally tell my doctor that I no longer respond or start using my stash to increase my dose to an auto-immune level of 18g or 27g per week for a few months.
Eh... I don't know a whole lot on IVIG, but I wouldn't take autoimmune doses without doctor's awareness, at the very least. IVIG is not as benign as it appears and can have some serious reactions, especially if increasing the dose so significantly. Probably best would be to save the doses, then tell him you'd like to try autoimmune doses and you already have extras.