What happens with IVIG therapy?

[gbells]

I have some questions about IVIG therapy. My understanding is that there is an immunodeficiency where people can't make antibodies. So IVIG is infused into the blood, sticks to loose invaders and then people have an immune response. What does it feel like as this happens? What are the effects on the body, specifically for fatigue, symptoms, etc?

 

[Rebeccare]

@Gingergrrl might be able to answer some of your questions!

 

[Gingergrrl]

@Gingergrrl might be able to answer some of your questions!

I didn't get an alert for this thread and am sorry I am so late in finding it, Rebecca!

I have some questions about IVIG therapy. My understanding is that there is an immunodeficiency where people can't make antibodies. So IVIG is infused into the blood, sticks to loose invaders and then people have an immune response. What does it feel like as this happens? What are the effects on the body, specifically for fatigue, symptoms, etc?

IVIG is used both for immune deficiency and also for autoimmunity and the difference is in the dosing. Usually cases of CVID (common variable immune deficiency) is a low dose of IVIG vs. in autoimmune diseases it is a high dose of IVIG (often done over the course of several days b/c the dose is too high to do all in one infusion).

I did two years of high dose IVIG for autoimmunity (Gamunex) which was the brand that my doctors felt I had the best chance of not being allergic to (and they were correct and I was never allergic to it). IVIG is a very thick substance so ideally you would be tested prior to starting that you are not a blood clot risk (with the anti-phospholipid or Hughes Panel).

I did a very slow infusion speed and split the infusion into a 3-day cycle at an outpatient infusion center. I also took pre-meds (which in my case were Atarax, Pepcid, and Tylenol) but your doctor would decide what is best in your case. The #1 side effect of IVIG is a headache or intracranial pressure and often an immune reaction is triggered that feels as if you have fever, malaise, muscle aches, etc, but it only lasts for a few days.

There are other more serious adverse reactions, like aseptic meningitis, but the chances of getting them can be greatly reduced by having a slower infusion speed and splitting the dose over several days (if you are doing high dose IVIG for autoimmunity). I hope this helps!

 

[pattismith]

IVIG has shown efficiency against Sjogren (which is an auto-immune dysautonomia/connectivite disorder largely overlapping with ME/Fibro).

Don't know if there was any trial for ME/CFS?

Here a new study on dysautonomia:

Intravenous Immunoglobulin Therapy in Refractory Autoimmune Dysautonomias

A Retrospective Analysis of 38 Patients

Schofield, Jill R. MD1,*; Chemali, Kamal R. MD2
American Journal of Therapeutics: September/October 2019 - Volume 26 - Issue 5 - p e570–e582



Background: Intravenous immunoglobulin (IVIG) has recognized efficacy in autoimmune peripheral nerve disorders, but there has been limited study of the use of IVIG in autoimmune dysautonomias.

Study Question: To determine the efficacy and safety of IVIG in patients with disabling, refractory autoimmune dysautonomias, including patients with postural tachycardia syndrome and gastrointestinal dysmotility.

Study Design: Patients with one or more autonomic disorder(s) and persistent serological evidence for autoimmunity who were unable to work or attend school despite usual treatments for dysautonomia were treated with IVIG for at least 3 months at a dose of at least 1 gm/kg monthly.

Measures and Outcomes: Outcome measures included the composite autonomic symptom scale 31 survey and a functional ability score.

Results:

There were 38 patients, 84% female and mean age of 28.4 years. Of patients, 83.5% improved on IVIG as defined by at least 20% improvement in the composite autonomic symptom scale 31 and/or functional ability score.

The mean pretreatment functional ability score was 21% (mostly bedridden), which improved to a mean of 74% (nearing able to return to work/school) for responsive patients after at least 1 year of IVIG. The mean time to the first sign of response was 5.3 weeks. There were no serious adverse events.

The Mayo autoimmune dysautonomia panel antibodies and traditional Sjögren antibodies were present in only 13% and 8% of patients, respectively, but antiphospholipid antibodies and novel Sjögren antibodies were present in 76% and 42% of patients, respectively.

Conclusions:

There is increasing evidence that IVIG is safe and effective in a subset of patients with autonomic disorders and evidence for autoimmunity.
A 4-month IVIG trial should be considered in severely affected patients who are refractory to lifestyle and pharmacological therapies. Antiphospholipid antibodies and novel Sjögren antibodies are often present in these patients and correlate with a high response rate to IVIG.

 

[gbells]

@Gingergrrl How much did you improve with the therapy on the CFS rating scale? Any benefit?

 

[Joy&K0$]

See also Dr Jonathan Kerr's work on IVIg in putative persistent Parvovirus B19 ME/CFS below. Fascinating IMO the effect on selected cytokines - see Figs. below.

In the early 2000's I received a German formulation of IVIg for heart-biopsy-confirmed viral cardiomyopathy. And it wiped out both the cardiac/endothelial symptoms, as well as ALL M.E. symptoms (as per Kerr's article). 3 months of feeling alive, being a mom again. Bliss.

FWIW my European cardiologist said that he believed that the effect of IVIg in my case was more because of its' anti-inflammatory effects, than because of antibodies. He provided this info on "hyper-sialylated IVIg", and indeed there is a great deal more on this potentially clinically relevant info for some cases of M.E. if you Google Momenta's hyper-sialylated IVIg, and hyper-sialylation in general. Bottom line, not all IVIg's are the same, and some - eg. Momenta's (or in my case, Pentaglobin) have a superior effect, at least in my variation of M.E.. Momenta's IVIg is reported to have a 10x (10x!) higher anti-inflammatory effect because of its' hyper-sialylation. I've had multiple doses of IVIg, different formulations. Got a fever of 104.5 from Sandoglobulin, with what sure as heck felt like increased intracranial pressure, paroxysmal coughing/reactive airways. But - an indication of how awful this disease is - I'd do it again, because a couple of series of Sandoglobulin eliminated M.E. and cardiac symptoms for 2-3 weeks each time. Canadian formulations helped, but nowhere near as effective as Pentaglobin. Been begging for it ever since.

Sorry, that's it for now - having to limit where I spend my spoons. Hope this helps!

 

[Joy&K0$]

Here are some links:

• Dr Jonathan Kerr's work on putative persistent PVB19 and ME/CFS, and successful IVIg in a handful of patients: https://academic.oup.com/cid/article/36/9/e100/313942 Be sure to look at the figures, and the cytokine tracking he did.
• Science article on hyper-sialylated IVIg: https://science.sciencemag.org/content/320/5874/373.long
• Momenta's (US) hyper-sialylated IVIg in development, purported to be 10x more anti-inflammatory than regular IVIg: http://ir.momentapharma.com/news-re...armaceuticals-announces-publication-revealing

 

[katarina]

Personally I’m on SCIG Hizentra and very happy with it. It’s MUCH cheaper than IVIG and has way less risks and side effects. It’s also more convenient since you can self-administer. Scientists don’t actually know why or how IVIG works the way that it does for immunodeficiency or autoimmune diseases.

 

[ebethc]

Personally I’m on SCIG Hizentra and very happy with it. It’s MUCH cheaper than IVIG and has way less risks and side effects. It’s also more convenient since you can self-administer. Scientists don’t actually know why or how IVIG works the way that it does for immunodeficiency or autoimmune diseases.

hi katarina... how often do you self administer SCIF? what's the dose? do you have any side effects? how long is the treatment (ie months, years).. does your doc expect you to get a long period of relief, eg, years after this round?

 

[katarina]

I’m on 50ml twice a month. The day of I have some fatigue but no other side effects. Since I have CVID I will likely need it for the rest of my life. I’ve been on it for about a year now and while it hasn’t cured me or anything, it took me out of a scary degenerative state where I couldn’t talk or think at all, and I couldn’t eat often. I was very scared I was going to die quickly before starting SCIG.

I am still bedbound now but no longer getting worse and have made some improvements. I feel like my improvements have leveled out though and I won’t improve further but it’s preserving the state I’m in and I’m not getting worse.

If my dose is a few days late, my neuropathy and scary symptoms start coming back. I start crashing badly without it.

 

[john66]

IVIG took about 6 months for it to work, but quality of life has substantially improved. Was bed bound 20 hours a day. Now I can care for my sone for 8 hours

 

[ebethc]

I am still bedbound now but no longer getting worse and have made some improvements. I feel like my improvements have leveled out though and I won’t improve further but it’s preserving the state I’m in and I’m not getting worse.

wow, glad u found it

how were u diagnosed w CVID?

 

[katarina]

wow, glad u found it

how were u diagnosed w CVID?

i had some blood tests done but it was largely based on my medical history. Growing up I got the chicken pox 4 times (and had the vaccine 3 times). I also had recurrent sinus and ear infections, and colds and flus would last months for me. In the past few years I’ve had recurrent UTIs as well. My igg levels were low but not low enough that insurance would approve me automatically so I had to get a vaccine and then get tested for titers. My body couldn’t make the proper antibodies to the vaccine (showing I have a compromised immune system) so I was approved thankfully.

my pediatrician really should have caught that I was clearly immunocompromised, and I’m still frustrated that he didn’t take my recurrent infections more seriously.

 

[gbells]

How much does IGG cost including doctor's visits?

 

[ebethc]

@katarina which vaccine... is it the pneumonia vaccine (pneumococcal vaccine)?

 

[katarina]

How much does IGG cost including doctor's visits?

It depends on the brand, your insurance, and your doctor. Once I hit my deductible I think my infusions are about $2000 per month. Before that, they were $8000-10,000ish per month. You can look up dosing and pricing online and check your insurance to see which brands they prefer

 

[katarina]

How much does IGG cost including doctor's visits?

I have a required follow up appointment with my doctor every 3 months, she doesn’t take insurance so it’s about $300 each time I think

 

[katarina]

@katarina which vaccine... is it the pneumonia vaccine (pneumococcal vaccine)?

Yes

 

[Blazer95]

I do have a question for the immune system pro's and the IVIG eldergods:

Would for example a IgG-rich colostrum or igG-rich extract have similar effects then IVIG? I mean of course the effect would be way less potent etc that is understandable but can such effects be recreated by oral consumption of igG?

i cant get IVIG covered and i would like to consider this as a cheap alternative if possible.

maybe i can attract the professionals by sacrificing my firstborn? (oh my humour is kicking again, sorry)