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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I've been on IVIG treatment for an autoimmune myopathy for the past 5 months. Slow improvement after each treatment, it really got better after ramping up on B2 riboflavin.
Brief referenced summary of clinical trials involving IVIg - from the MEA Purple Booklet (2016 edition):
· Intravenous injections of pooled human immunoglobulin (IVIg) have been assessed in five RCTs. Three reported benefits (DuBois 1986 – for ‘chronic mononucleosis syndrome’; Lloyd et al 1990; Rowe KS 1997) whereas two found no benefit (Peterson et al 1990; Vollmer-Conna et al 1997). There is no published evidence to support the use of intramuscular injection of human immunoglobulin or low-dose IVIg in research-defined CFS. Immunoglobulin has also been reported to be of benefit in parvovirus-induced ME/CFS (Kerr et al 2003).
@GingergrrlThe disease I am being treated for is this one, necrotizing autoimmune myopathy.http://www.ncbi.nlm.nih.gov/pubmed/21885975
I tested negative for the two antibodies tests developed so far but half the cases reported test negative. This disease is so new that the antibody tests only came out the past year or so.
Basically this is an autoimmune disease but does not show the inflammation usually seen. I have high blood CPK numbers, muscle biopsy showed necrosis and atrophy but I do not have inflammation of the body.
I am currently taking 35g of Grifols Flebogamma 5% per day for 3 days, every 4 weeks. The first 3 months it was for 5 days but my neuro lowered it to 3.
Petterson uses Gummunex.
It took about 3 years of seeing different specialists before I was diagnosed.
I had to push the doctors and request second opinions a couple of times, my second endocrinologist believed I had some sort of genetic disease but that was outside of her specialty.
I tried two different statins in 2012 and had increased muscle pain within days.
I was on different fibrates for about 7 years before that but had quit due to pain, fibrates is also listed as a trigger. I have had high triglycerides since at least 1998 and also anemia, I believe its a by product of this myopathy.
I have Kaiser so I get whatever they use for IVIG.
At first the treatment was 5 days in a row each month (every 4 weeks), now its 3 days in a row. I think the doctor wanted to start at a high dosage to build up the antibodies then taper down. The past 5 months I have noticed I see the same people having IVIG treatment the same time as me, so I think the 4 week interval is fairly common.
That is interesting and I wonder if it is b/c he has found less allergic reactions with this brand or another reason? Do you have a link on this @Justin30 so I can read more about it? No worries if you don't!
Less preservative exactly....
I figured from what I read that your condition might have been triggered by Statins but was hoping that was not the case. I don't think people (doctors especially) realize how toxic the Statins and the FQ antibiotics can be.
I had not heard of fibrates before and just Googled them. Are they known to cause similar issues as Statins?