Paper by Dr Nigel Speight and Helen Brownlie: The findings of controlled trials on use of intravenous immunoglobulin to treat ME

Countrygirl

Senior Member
Messages
5,056
Likes
26,382
Location
UK
Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

https://www.mdpi.com/2227-9032/9/11...bi7T2ppu4XS4KsCTdsHxCPpaBD_Hg7cWlOeMIZCN-A54o

The findings of controlled trials on use of intravenous immunoglobulin G (IV IgG) to treat myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are generally viewed as representing mixed results. On detailed review, a clearer picture emerges, which suggests that the potential therapeutic value of this intervention has been underestimated. Our analysis is consistent with the propositions that: (1) IgG is highly effective for a proportion of patients with severe and well-characterised ME/CFS; (2) responders can be predicted with a high degree of accuracy based on markers of immune dysfunction. Rigorous steps were taken in the research trials to record adverse events, with transient symptom exacerbation commonly experienced in both intervention and placebo control groups, suggesting that this reflected the impact of participation on people with an illness characterised by post-exertional symptom exacerbation.

Worsening of certain specific symptoms, notably headache, did occur more commonly with IgG and may have been concomitant to effective treatment, being associated with clinical improvement. The findings emerging from this review are supported by clinical observations relating to treatment of patients with severe and very severe ME/CFS, for whom intramuscular and subcutaneous administration provide alternative options. We conclude that: (1) there is a strong case for this area of research to be revived; (2) pending further research, clinicians would be justified in offering a course of IgG to selected ME/CFS patients at the more severe end of the spectrum.

As the majority of trial participants had experienced an acute viral or viral-like onset, we further suggest that IgG treatment may be pertinent to the care of some patients who remain ill following infection with SARS-CoV-2 virus.
Keywords: immunoglobulin; myalgic encephalomyelitis; chronic fatigue syndrome; viral onset; cell-mediated immunity; post-acute sequelae of COVID-19; long-COVID
 

Pyrrhus

Senior Member
Messages
3,286
Likes
9,816
Location
U.S., Earth
It's so nice to see some thoughtful analysis of the use of IVIG in ME - a treatment that is commonly prescribed, but little researched.

The article said:
Worsening of certain specific symptoms, notably headache, did occur more commonly with IgG and may have been concomitant to effective treatment, being associated with clinical improvement.
I have always wondered about the headache that many people get immediately after each IVIG treatment. What can we learn from this observation? Do healthy controls experience the same thing?
 

Learner1

Senior Member
Messages
6,010
Likes
10,964
Location
Pacific Northwest
Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

https://www.mdpi.com/2227-9032/9/11...bi7T2ppu4XS4KsCTdsHxCPpaBD_Hg7cWlOeMIZCN-A54o


"Our analysis is consistent with the propositions that: (1) IgG is highly effective for a proportion of patients with severe and well-characterised ME/CFS; (2) responders can be predicted with a high degree of accuracy based on markers of immune dysfunction."
This is an important point. Earlier studies did not separate out the correct subgroups. Several of us who were segmented out based on these characteristics and prescribed IVIG have benefited from it.
Huh, i always wanted to try it. But no access here in the states. I wonder how long till we might get access.
I have received it in 2 different states. Not sure why you think it's out of your reach. The US is likely the best country for accessing it because donors here are paid, enlarging the supply.
So this study finds that intravenous antibodies helps me/cfs patiens while the 2020 study on cyclophosphamide finds that intravenous immunosuppressants helps me/cfs patients. Arent these results telling opposite stories or am i misinterpreting something?
As my ME/CFS specialist said - you have a dysfunctional immune system, with both immunodeficiency and autoimmunity. IVIG can be prescribed for both immunodeficiency and autoimmunity, st different doses, while cyclophosphamide (and Bortezimub and Rituximab and plasmapharesis) suppress the immune system in different ways, which can be beneficial in various circumstances. Consultation with a skilled immunologist, with experience in immunodeficiency, autoimmunity and infections diseases would be beneficial.
It's so nice to see some thoughtful analysis of the use of IVIG in ME - a treatment that is commonly prescribed, but little researched.
Yes, it is. When prescribed appropriately, it can be incredibly helpful.
I have always wondered about the headache that many people get immediately after each IVIG treatment. What can we learn from this observation?
I get a headache with every infusion that I deal with for 2-3 days. Part of it is getting a higher, autoimmune dose, which results in a little war in my immune system, leading to side effects like microglial inflammation. The other part seems to be mast cell activation as antihistamines and mast cell stabilizers help. I also use curcumin, boswellia and hemp (CBD) oil to reduce inflammation and pain.
 

junkcrap50

Senior Member
Messages
1,187
Likes
2,596
I have received it in 2 different states. Not sure why you think it's out of your reach. The US is likely the best country for accessing it because donors here are paid, enlarging the supply.
You likely already know, but it is extremely difficult for insurance to approve it and it is otherwise prohibitively expensive. Unless you have IgG deficiency, insurance won't allow it. I'm quite surprised that some patients, like yourself and @Gingergrrl, have gotten it approved (I'm assuming insurance) for autoimmunity. And likely only severe autoimmune diseases would apply. So, I too view it as pretty inaccessible.

I'm currently wondering how I might possibly get it approved for my positive Cunningham Panel autoantibodies for PANDAS. I haven't begun tackling that yet. Perhaps a doctor who commonly treats pandas with it, might have an easier time.
 

Learner1

Senior Member
Messages
6,010
Likes
10,964
Location
Pacific Northwest
You likely already know, but it is extremely difficult for insurance to approve it and it is otherwise prohibitively expensive. Unless you have IgG deficiency, insurance won't allow it. I'm quite surprised that some patients, like yourself and @Gingergrrl, have gotten it approved (I'm assuming insurance) for autoimmunity. And likely only severe autoimmune diseases would apply. So, I too view it as pretty inaccessible.

I'm currently wondering how I might possibly get it approved for my positive Cunningham Panel autoantibodies for PANDAS. I haven't begun tackling that yet. Perhaps a doctor who commonly treats pandas with it, might have an easier time.
My insurance company has a very lengthy policy on it with several categories of diagnoses for which it can be approved. I was fortunate to get it approved for my immunodeficiency, But we got the dose/frequency high enough so that it was helpful for autoimmunity. I am very aware of other patients who have gotten it for autoimmunity alone.

Given the situation you are describing, it sounds like you need to be working with a doctor who is more knowledgeable and would be willing to do a peer-to-peer consult with your insurance at the right time. It sounds odious, but in this kind of situation, it is done all the time and the doctors who prescribe it are used to going through all the hoops and getting it approved.
 

junkcrap50

Senior Member
Messages
1,187
Likes
2,596
My insurance company has a very lengthy policy on it with several categories of diagnoses for which it can be approved. I was fortunate to get it approved for my immunodeficiency, But we got the dose/frequency high enough so that it was helpful for autoimmunity. I am very aware of other patients who have gotten it for autoimmunity alone.

Given the situation you are describing, it sounds like you need to be working with a doctor who is more knowledgeable and would be willing to do a peer-to-peer consult with your insurance at the right time. It sounds odious, but in this kind of situation, it is done all the time and the doctors who prescribe it are used to going through all the hoops and getting it approved.
Yes, I will be searching for a knowledgeable doctor and someone with experience. You've had much more luck with peer-to-peer consults than I have. But it likely can be done with great effort.
 

Gingergrrl

Senior Member
Messages
15,713
Likes
46,523
You likely already know, but it is extremely difficult for insurance to approve it and it is otherwise prohibitively expensive. Unless you have IgG deficiency, insurance won't allow it. I'm quite surprised that some patients, like yourself and @Gingergrrl, have gotten it approved (I'm assuming insurance) for autoimmunity. And likely only severe autoimmune diseases would apply. So, I too view it as pretty inaccessible.
@junkcrap50 I saw that you tagged me and wanted to reply in case it is helpful. I did not have IgG deficiency (or any immune deficiency) and my prior 2-years of IVIG was approved for autoimmunity. It was an epic battle with my former insurance company and they tried every tactic known to man not to approve me for IVIG including illegally dropping me from my insurance plan multiple times (while cashing my monthly premiums!) and I was very close to hiring an attorney b/c they were acting in bad faith.

I was very lucky that I had two doctors fighting hard for my case who never gave up on me. I tested positive with Mayo Clinic's Lab for Lambert Eaton Syndrome (LEMS) autoantibodies and did additional testing which showed progressive muscle weakness of my lungs, diaphragm, etc, which matched w/the calcium channel autoantibodies plus w/me having to use a wheelchair.

At that point, I had tested positive for 11 autoantibodies, and had multiple autoimmune diagnoses, and we got the IVIG approved for my autoimmune diagnoses (and not for ME/CFS which turned out not to be my diagnosis). I am not sure if anyone in the US has gotten approved for IVIG w/an ME/CFS diagnoses but I truly do not know and maybe some people have?

Re: the headache (mentioned in another post in this thread)... headache is the #1 side effect of IVIG and while it is pretty much unavoidable, it can be greatly reduced by doing a slower infusion speed. My infusion speed for IVIG was so slow that I had to split each infusion into a 3-day cycle at an infusion center (but this was the only way that I could tolerate it). The slower infusion speed not only reduces the IVIG headache but also reduces the risk of anaphylaxis, blood clots, strokes, aseptic meningitis, and other potential risks from IVIG.
 
Messages
374
Likes
784
Does SCIG offer similar benefits? I think I remember reading on the discord that you can order some commercial product from a few online Russian pharmacies
 

Learner1

Senior Member
Messages
6,010
Likes
10,964
Location
Pacific Northwest
Yes, I will be searching for a knowledgeable doctor and someone with experience. You've had much more luck with peer-to-peer consults than I have. But it likely can be done with great effort.
The doctors who have patients like us know how to do it. Feel free to PM me if you wanted to discuss the ins and outs further. It did not take an epic battle, but a business as usual approach with my doctor.
Does SCIG offer similar benefits? I think I remember reading on the discord that you can order some commercial product from a few online Russian pharmacies
Yes, SCIG offers exactly the same benefits. However, the issue many of us get into is dosing. With autoimmunity we need a higher dose than people who just have immunodeficiency, and then there can be a limit to how much you can get into your body at one time. The body needs to be able to deal with all the excess fluid and not all of us can do so. Then, there is the issue of side effects. I'd rather feel like crap for 1 to 3 days every 3 weeks rather than all the time which I would with SCIG.

As for ordering a human blood product that must be filtered for deadly diseases and kept sterile all the way along the way, I would be very leery of ordering something from overseas, especially when you then need to get it into your body with the appropriate medical equipment and nursing care.

Every country does have a supply of gamma globulins, and it is possible to get them in any country, although the difficulty does vary. It is likely better to find a doctor who will help you and have them help you through the process of getting it.
it can be greatly reduced by doing a slower infusion speed.
My headaches do not go away at a slower infusion speed. It requires SoluMedrol, Benadryl, ketorolac, curcumin, and Boswellia during the infusion as well as for 1 to 2 days after to make the headache tolerable.