Immuno Globulin IV

[justy]

@Zach00 - do you not think M.E is serious enough to warrant IVIG?

 

[SOC]

This is exactly my point. That is what I am saying.... It's only used for a certain set of conditions, mainly neuromuscular diseases and for people with immune deficiencies. It's not used for ME and it's quite risky so unless you have a condition it is used for, I would not be looking to do it, especially when considering the risk and side effects.

Do you know anything about ME/CFS? Have you done enough research on the illness you are talking about to know that ME/CFS is not "chronic fatigue"? Are you aware that many of us do have immune deficiencies?

Do you understand the severity of ME/CFS? What makes you suggest that the risks would not be worth the results for patients who are much more seriously ill than patients who get IVIG for other conditions? Why do you think it is it not too much of a risk for people who can hold down jobs and live relatively normal lives, but it is too much of risk for people with immune dysfunction and many other symptoms that keep them housebound and even bedbound?

I, for one, am very well aware of the potential side effects of IVIG. We can all read the same websites you do. I would gladly risk all the side effects of IVIG, up to and including aseptic meningitis, to make a substantial improvement in ME/CFS. The risks are minute compared to the risks of living the rest of my life with untreated ME/CFS.

Side effects:
Tiny (nearly zero) change of contracting infection -- many of us are already in the position of contracting all kinds of infections as the result of immune deficiency, so less risk there from treatment than not getting treatment.

From PrimaryImmune.org:

There is a potential for some side effects associated with IVIG. These can include low-grade fever, aching muscles or joints or post-infusion headaches occur.

Aw, I might get low-grade fever, muscle aches, or headaches? How would I know the difference? That's daily life with ME/CFS.

Less often, patients experience hives, chest tightness or wheezing. These symptoms usually respond to antihistamines such as diphenhydramine (Benadryl™) and/or asthma medications like albuterol.

Another BFD. Many of us already have these types of symptoms and are taking antihistamines and meds like abuterol. So this isn't any worse than living with ME/CFS.

Headaches associated with IVIG are not uncommon and may occasionally be severe, especially in patients with a history of migraine headaches. These headaches may occur during the infusion or as long as three days later. Some patients with severe and persistent headaches have been found to have an increase in the number of white blood cells in the cerebral-spinal fluid. This condition is known as aseptic meningitis. The cause of this apparent inflammation is not known, but it is not an infection and patients have not had permanent injury.

Aseptic meningitis is a rare side effect and doesn't cause permanent injury. That's a small risk I'm willing to take. If it's so dreadfully bad, why did both you and your doctor consider it reasonable for you to continue IVIG when you had aseptic meningitis multiple times? Why didn't you quit after the first time you got aseptic meningitis? My guess is that you and your doctor felt the benefits of the medication outweighed the consequences of the side effect, so obviously it's not fatal, or even incredibly dangerous. You chose to take the risk of aseptic meningitis after already finding out you're more susceptible than normal. Why shouldn't we take the risk?

You don't need to worry. None of us are going to be able to get IVIG unless we qualify based on immune dysfunction or autoimmune disease. Most of us are far sicker than many people getting IVIG, so the side effects are not greater than symptoms of the illness.

We're not idiots, unable to do a simple internet side effects search. We are frequently weighing the pros and cons for various treatment modalities, so we know more about evaluating potential side effects of treatments against the symptoms of our illness than you do. Don't teach your grandmother to suck eggs.

Go away and learn something about ME/CFS before you presume to lecture us. Then feel free to join us in civil discourse on living with this life-devastating disease.

 

[Jonathan Edwards]

Dear @Zach00,
It is reasonable to mention the potential problems with IVIG. However, I think if you want to give advice it is good to be fully informed. I am a retired professor in clinical immunology and from what I have read the evidence for efficacy of IVIG in ME is about the same as for autoimmune neuromuscular disorders - not conclusive but suggestive. There are small trials showing benefit and others less convincing. I doubt there is much more than that in neuromuscular disease. It is a bit puzzling to me as to why you should feel the need to advise people with other diseases on this?

 

[cb2]

I have had a couple dr's that have wanted me to try IVIG and i am "nervous" of the potential side effects- being a single person that live's alone and doesn't have much support it is a bit scary facing the "unknown" potentials.

i was getting frequent fevers and lung infections - untill i got on HC.. that has helped. when i got a work up for IVIG i went to 2 different medical centers and got 2 different opnions.. at both centers they ran a comprehensive immune panel and then gave me an pnueuma vaccine (as control ) and had me return 6 weeks later to run another immune panel to see how my immune system responded.. the first medical center in SF said i didnt qualify for IVIG.. yet a couple years later i went to stanford they ran the same tests and my immune system numbers came back lower than the first test.. i was supposed to build a therapeutic immune response to the pneuma vax injection but my immune system was deficient. also i have a subclass deficiency. they were ready at stanford to give me a trail but i was too afraid and no way i could get there- they also said "we dont know if it will help your energy" " or if your body will be able to convert it to the subclass you need- but diagnoised me with "common variable immune deficiency" he also mentioned another option they try is prophylactic antibiotics- and he mentioned one patient was doing very well with those- i was going to try that but didn't. I did go to my follow up visit with him and i hadn't been sick with "acute extreme" infection in over a year at that point- and he said my immune numbers look bad- i saw them and they did look worse, not sure if it is from the HC or what.. but he said since i hadn't hadn any big infections he no longer thought i needed the IVIG. However my infectious diseas dr wants me to go back and try to get them to recommend this again and give it a try. I am still on the fence with it all.

I too am interested in how this has benefited folks..

 

[Jonathan Edwards]

Dear @cb2,
It sounds as if you were considered for IVIG on the basis of low Ig levels. That is something quite different from the use of IVIG for autoimmune disorders and for ME as such. The use of IVIG for ME is not to do with having low levels. The idea is if anything to counteract high levels of 'bad Ig' of your own.

 

[SOC]

The use of IVIG for ME is not to do with having low levels. The idea is if anything to counteract high levels of 'bad Ig' of your own.

Not entirely true. IVIG is also used in immune dysfunction related to ME. Not all of us have high levels of 'bad Ig'. Some of us have multiple immune dysfunctions unrelated to high levels of 'bad Ig'.

Autoimmune features certainly do exist in ME and some PWME may be purely autoimmune (if such a thing can be said to exist), but there is also a strong subset with different types of immune dysfunction unrelated to autoimmunity.

 

[SOC]

I have had a couple dr's that have wanted me to try IVIG and i am "nervous" of the potential side effects- being a single person that live's alone and doesn't have much support it is a bit scary facing the "unknown" potentials.

I am still on the fence with it all.

I think this kind of thing is a very personal decision.

If your symptoms are not sufficiently severe to make you feel that the potential risks are worth improving the symptoms, then you shouldn't take the treatment. It's always a trade-off and there are no guarantees.

For me, the risk of living alone and developing serious infections and/or becoming bedbound (again) with no support seem greater than the risk that the treatment would put me in the same state. But that conclusion is based on my personal medical history and current symptoms. People in other situations are going to correctly make different decisions based on their condition. There is no single right answer for all of us.

I'd say go with your gut. If you feel the risks are too high compared to your symptoms, don't do it.

 

[Jonathan Edwards]

Not entirely true. IVIG is also used in immune dysfunction related to ME. Not all of us have high levels of 'bad Ig'. Some of us have multiple immune dysfunctions unrelated to high levels of 'bad Ig'.

Autoimmune features certainly do exist in ME and some PWME may be purely autoimmune (if such a thing can be said to exist), but there is also a strong subset with different types of immune dysfunction unrelated to autoimmunity.

Yes, but then the indication is the other one. I think it is important not to confuse them. There is no reason to think that the two indications would overlap or interact.

 

[SOC]

Where is the confusion? There are both immune deficiency features and autoimmune features in ME. IVIG might potentially be used in ME for either one. I don't recall saying anything about overlap or interaction, so I don't understand the point you are trying to make there. Can you please clarify?

 

[Zach00]

Dear @Zach00,
It is a bit puzzling to me as to why you should feel the need to advise people with other diseases on this?

It's puzzling to you why I would simply remind people their are serious risks of IVIG and discourage its use for conditions it is not indicated for? Wow! Again, I'm giving people an opinion based on my experience and research. At the end of the day people need to decide what is best for them, but there is no reason why i shouldn't throw my own two cents in.,.. which is based on research and experience, which goes a much longer way than reading. Again I would be not to do it unless you have proof of immune system dysfunction like autoimmune antibodies, low IGG,.... something substantial in bloodwork or testing because it could make you much worse. It is better to know what you are treating. Again my opinion, but i am not saying something any "good" doctor won't tell you.

Unfortunately ME is not as defined or understood yet as some of the other conditions IVIG has been approved for. We all know this. For example, someone may have ME because of an underlying autoimmune issue and someone else may have it because as a post viral syndrome. Then there is unfortunately a whole group of people that have been wrongly diagnosed as an ME patient... and may have a thyroid problem or something else that is being missed. My point is ME can be triggered or cause by a lot of different things. We don't know what that is or whether it will respond to IVIG. Each patient is different. Unless you can prove immune dysfunction i don't think it is worht the risks. I've personally had a lot of complications from it as have some friends and family of mine. I also believe it is capable of creating long lasting changes in the way your immune system works by setting things in motion that may or may not be desirable for the patient. Again my opinion.... Take it for what its worth, but i will assure you its a qualified one with the right intentions.

Do you know anything about ME/CFS? Have you done enough research on the illness you are talking about to know that ME/CFS is not "chronic fatigue"? Are you aware that many of us do have immune deficiencies?

Do you understand the severity of ME/CFS? What makes you suggest that the risks would not be worth the results for patients who are much more seriously ill than patients who get IVIG for other conditions? Why do you think it is it not too much of a risk for people who can hold down jobs and live relatively normal lives, but it is too much of risk for people with immune dysfunction and many other symptoms that keep them housebound and even bedbound?

I, for one, am very well aware of the potential side effects of IVIG. We can all read the same websites you do. I would gladly risk all the side effects of IVIG, up to and including aseptic meningitis, to make a substantial improvement in ME/CFS. The risks are minute compared to the risks of living the rest of my life with untreated ME/CFS.

Side effects:
Tiny (nearly zero) change of contracting infection -- many of us are already in the position of contracting all kinds of infections as the result of immune deficiency, so less risk there from treatment than not getting treatment.

From PrimaryImmune.org:


Aw, I might get low-grade fever, muscle aches, or headaches? How would I know the difference? That's daily life with ME/CFS.

Another BFD. Many of us already have these types of symptoms and are taking antihistamines and meds like abuterol. So this isn't any worse than living with ME/CFS.


Aseptic meningitis is a rare side effect and doesn't cause permanent injury. That's a small risk I'm willing to take. If it's so dreadfully bad, why did both you and your doctor consider it reasonable for you to continue IVIG when you had aseptic meningitis multiple times? Why didn't you quit after the first time you got aseptic meningitis? My guess is that you and your doctor felt the benefits of the medication outweighed the consequences of the side effect, so obviously it's not fatal, or even incredibly dangerous. You chose to take the risk of aseptic meningitis after already finding out you're more susceptible than normal. Why shouldn't we take the risk?

You don't need to worry. None of us are going to be able to get IVIG unless we qualify based on immune dysfunction or autoimmune disease. Most of us are far sicker than many people getting IVIG, so the side effects are not greater than symptoms of the illness.

We're not idiots, unable to do a simple internet side effects search. We are frequently weighing the pros and cons for various treatment modalities, so we know more about evaluating potential side effects of treatments against the symptoms of our illness than you do. Don't teach your grandmother to suck eggs.

Go away and learn something about ME/CFS before you presume to lecture us. Then feel free to join us in civil discourse on living with this life-devastating disease.

This is full of accusations, assumptions and attacks. Again and for the last time... I am only here to give my opinion. Sorry you can't handle another perspective. Just because your not hearing what you want to hear does not mean i am "not knowledgeable on ME , fear mongering, or not sympathetic to people with this condition. Its quite the opposite. If you believe all the side effects listed are "the ONLY" side effects or problems you will have than by all means, give a shot.

 

[SOC]

...than by all means, give a shot.

Thank you, I will, on the advice and encouragement of my hematologist, my immunologist, and my ME/CFS specialist. I trust them much farther than I trust some stranger giving advice on the internet.

We get IVIG when we need it, just like you did, and perhaps with even more justification. As @Jonathan Edwards pointed out to you, "...the evidence for efficacy of IVIG in ME is about the same as for autoimmune neuromuscular disorders - not conclusive but suggestive." So why do you think you should get it and we shouldn't? Most of us are getting IVIG for clear immune deficiency, which is better justification for IVIG than autoimmune neuromuscular disorders. This sounds like a glass houses situation. You are telling us we shouldn't get IVIG because the evidence isn't sufficient to support it, yet you are getting (or used to get) IVIG based on no better evidence.

What you seem to be persistently missing, despite being told, is that ME patients are not routinely getting IVIG without clear indications that treatment is warranted. Nor to the best of my knowledge, are patients routinely asking for IVIG. What on earth makes you think ME patients are rushing out asking for, much less receiving, IVIG on a whim? It's not happening, pal, so quit worrying about it. It's an illusion, a false belief, not worth spending time lecturing or arguing about. Go have a beer and calm down. There's not a problem.

 

[Daffodil]

personally, i love the effects of IVIG for CFS. my doctor gives lower doses - like 10 g a month - for 6 months. he says it works slowly on the immune system. maybe it would not do much alone, but he combines it with antibiotics for active intracellular bacteria, which he believes is at the heart of CFS. i have improved by huge amounts since starting this regimen. i have not tested positive for immunoglobulin deficiencies.

i know a woman who has lived CFS-free on 25 g of IVIG a month, for 30+ years. she is in her 70s and doing wonderfully. her insurance is paying for this.

i also know those who cannot tolerate it, so it varies from person to person (personally, if i couldnt tolerate it, i would try even lower doses to start with)
xoxo

 

[Jonathan Edwards]

It's puzzling to you why I would simply remind people their are serious risks of IVIG and discourage its use for conditions it is not indicated for? Wow! Again, I'm giving people an opinion based on my experience and research. At the end of the day people need to decide what is best for them, but there is no reason why i shouldn't throw my own two cents in.,.. which is based on research and experience, which goes a much longer way than reading. Again I would be not to do it unless you have proof of immune system dysfunction like autoimmune antibodies, low IGG,.... something substantial in bloodwork or testing because it could make you much worse. It is better to know what you are treating. Again my opinion, but i am not saying something any "good" doctor won't tell you.

Unfortunately ME is not as defined or understood yet as some of the other conditions IVIG has been approved for. We all know this. For example, someone may have ME because of an underlying autoimmune issue and someone else may have it because as a post viral syndrome. Then there is unfortunately a whole group of people that have been wrongly diagnosed as an ME patient... and may have a thyroid problem or something else that is being missed. My point is ME can be triggered or cause by a lot of different things. We don't know what that is or whether it will respond to IVIG. Each patient is different. Unless you can prove immune dysfunction i don't think it is worht the risks. I've personally had a lot of complications from it as have some friends and family of mine. I also believe it is capable of creating long lasting changes in the way your immune system works by setting things in motion that may or may not be desirable for the patient. Again my opinion.... Take it for what its worth, but i will assure you its a qualified one with the right intentions.

Dear Zach00,
I actually share a lot of your concerns but one of the rules of PR, which we have to try to keep the right side of sensibly (which is not always easy I admit) is that members do not give advice as such. Your original post included phrases such as 'I do not recommend' and 'It's not worth the risk', although I realise that you end up saying that this is just your opinion. I also realise that I sometimes say things like this. However, I do try to make sure that I base this on documented evidence in the literature. 'Experience and research' can mean anything I am afraid. And you posts contain a number of simple factual errors.

There are very few reliable trials of IVIG for anything but there are small trials in ME showing efficacy, as well as some not showing efficacy. The situation for autoimmune neurological diseases is probably similar. The reason why IVIG is approved for some of these is that diseases of that sort can have a high mortality rate without treatment. The risk/benefit analysis is different. The evidence is much the same. Risk benefit analysis is very subjective and I think is up to an individual physician to consider in a way that can override formal approval status. Proof of autoimmunity or immune dysfunction is not a good rule for using a treatment when we have no idea how it works even in autoimmune disease. What matters is whether studies have shown effects.

I accept that you have the right intentions, but I am still a bit unclear why you should want to wade into discussing IVIG in ME (assuming you do not have ME) without checking that there are published trials of IVIG in ME. Maybe it is all a question of phrasing 'advice' the right way - which I may not always get right myself.

 

[msf]

Wow, it's refreshing to see you on the other side to the doubters for once, Prof. Edwards! I am glad you stick up for what you believe in, some other people on this forum only seem to know how to play the cynic.

 

[Zach00]

Thank you, I will, on the advice and encouragement of my hematologist, my immunologist, and my ME/CFS specialist. I trust them much farther than I trust some stranger giving advice on the internet.

We get IVIG when we need it, just like you did, and perhaps with even more justification. As @Jonathan Edwards pointed out to you, "...the evidence for efficacy of IVIG in ME is about the same as for autoimmune neuromuscular disorders - not conclusive but suggestive." So why do you think you should get it and we shouldn't? Most of us are getting IVIG for clear immune deficiency, which is better justification for IVIG than autoimmune neuromuscular disorders. This sounds like a glass houses situation. You are telling us we shouldn't get IVIG because the evidence isn't sufficient to support it, yet you are getting (or used to get) IVIG based on no better evidence.

What you seem to be persistently missing, despite being told, is that ME patients are not routinely getting IVIG without clear indications that treatment is warranted. Nor to the best of my knowledge, are patients routinely asking for IVIG. What on earth makes you think ME patients are rushing out asking for, much less receiving, IVIG on a whim? It's not happening, pal, so quit worrying about it. It's an illusion, a false belief, not worth spending time lecturing or arguing about. Go have a beer and calm down. There's not a problem.

I am not saying do not get IVIG if you have evidence of an immune deficiency or autoimmune. If you have either of these and weigh the risks with your doctor, than IVIG may be helpful. However your doc is likely going to be submitting for your IVIG under "immune deficiency" or an autoimmune, not ME. It seems we are getting into semantics here. ME can include a lot of things, if you immune deficiency or autoimmunity is a component of your ME than my personal opinion is IVIG may be worth the risk. IF either or those features are not part of your ME than i personally do not believe it is worth the risk. My opinion which is also the going opinion of most respectable practicing neurologists, immunologists, and rheumatologists.

Why do i discourage people who do not have evidence of immune deficiency or autoimmune to do IVIG? Many reasons I've already explained but will recap.. 1)side effects 2.)risk it will make you worse (which is much different than side effects) 3.)You do not know where your ME is coming from! If your immune system is not the cuase of your ME than you are putting yourself at risk for nothing. This treatment modulates the immune system... Why would you want to modulate an immune system that is working fine and is not the reason for your illness? Its really quite logical.

There are many different reasons why people on here have ME, and not all of them include autoimmunity or low immune systems. Work with your doctor to figure out what is causing your illness and how to best manage with putting yourself at the least risk; that should be the goal for everyone here.

My intentions here are to protect those with ME that are either missing something not yet uncovered in testing, or have perfectly normal immune systems. Those are the people i would hate to see rush into IVIG. At the end of the day only you can decide whats best and what is worth the risk. Cheers.

 

[Charles555nc]

personally, i love the effects of IVIG for CFS. my doctor gives lower doses - like 10 g a month - for 6 months. he says it works slowly on the immune system. maybe it would not do much alone, but he combines it with antibiotics for active intracellular bacteria, which he believes is at the heart of CFS. i have improved by huge amounts since starting this regimen. i have not tested positive for immunoglobulin deficiencies.

i know a woman who has lived CFS-free on 25 g of IVIG a month, for 30+ years. she is in her 70s and doing wonderfully. her insurance is paying for this.

i also know those who cannot tolerate it, so it varies from person to person (personally, if i couldnt tolerate it, i would try even lower doses to start with)
xoxo

Could you mention what intracellular antibiotics you were put on?

 

[Daffodil]

hi charles. i have been on several antibiotics, a few months at a time, 2 at the same time....rocephin, azithromycin, rifamipin, ceftin, clarithromycin, etc..i would have to look them all up. i have been kept on ceftin + clarithromycin for a long time now because the doctor must have had some clues that it was going to work.

i really am doing a lot better.

 

[Valentijn]

It's only used for a certain set of conditions, mainly neuromuscular diseases and for people with immune deficiencies.

I find this very amusing, since ME symptoms, signs, and research thus far all seem to support neurological, muscular, and immunological pathology. From what you're saying, it sounds like it was designed for us

And we are talking about ME patients, not hypothetically misdiagnosed fatigue or thyroid patients, etc. It's actually pretty easy for experts and even patients to distinguish between those disease.

 

[maryb]

I can't debate the science but I do understand that in ME (or is it undiagnosed Lyme - just to muddy the waters) our immune systems disrupt in certain ways, for instance some of us never get colds or flu, others are permanently floored by these sorts of infections, I understand that to mean one immune system is overacting and the other under. For instance as I went for 6yrs with never a hint of a cold etc, is my system is on full alert permanently and thus I would not benefit from IVIG, despite having been diagnosed with ME by 3 specialist doctors.
(but now also Lyme by those 3 doctors)

 

[Zach00]

Dear Zach00,
I actually share a lot of your concerns but one of the rules of PR, which we have to try to keep the right side of sensibly (which is not always easy I admit) is that members do not give advice as such. Your original post included phrases such as 'I do not recommend' and 'It's not worth the risk', although I realise that you end up saying that this is just your opinion. I also realise that I sometimes say things like this. However, I do try to make sure that I base this on documented evidence in the literature. 'Experience and research' can mean anything I am afraid. And you posts contain a number of simple factual errors.

There are very few reliable trials of IVIG for anything but there are small trials in ME showing efficacy, as well as some not showing efficacy. The situation for autoimmune neurological diseases is probably similar. The reason why IVIG is approved for some of these is that diseases of that sort can have a high mortality rate without treatment. The risk/benefit analysis is different. The evidence is much the same. Risk benefit analysis is very subjective and I think is up to an individual physician to consider in a way that can override formal approval status. Proof of autoimmunity or immune dysfunction is not a good rule for using a treatment when we have no idea how it works even in autoimmune disease. What matters is whether studies have shown effects.

I accept that you have the right intentions, but I am still a bit unclear why you should want to wade into discussing IVIG in ME (assuming you do not have ME) without checking that there are published trials of IVIG in ME. Maybe it is all a question of phrasing 'advice' the right way - which I may not always get right myself.

Mr. Edwards the "risk/benefit assessment" in those with Nero diseases is not the only differentiating factor that make IVIG more routinely used as a treatment when compared to those with ME. It is also the fact that there are seroligical markers and antibodies for these patients, which is not always the case in those with ME. Additionally I would have to strongly disagree with your statement that "proof of immune dysfunction" is not a good rule in the decision to use IVIG. It is in fact one of the only objective and reliable tools we have which is why it so so heavily weighted.

It is nice to see some "small studies" have shown IVIG to be effective for patients with ME, but there is no way there has been a greater "number" of studies for patients vs. the many different autoimmune and immune deficiency syndromes it is routinely prescribed for. Even if that was the case (which it is not), we have another problem... who are the ME patients in these studies? What has been used as an objective tool or criteria to pool together these patients as all having so called "ME"? Symptoms alone? Doc. Joe Schmo said he has ME ? There is nothing objective.

By comparison, the studies containing autoimmune or immune deficiency patients have been pooled together and diagnosed with those conditions based on more objective testing... anti-mag, anca, gad65, low IGG, etc. We are able to pinpoint a common source of problem in these patients and can reason why IVIG makes sense as a treatment. This makes a big difference.

Lastly, you say you suggest looking at "studies"are more important than looking for proof of immune system dysfunction. Again i would have to disagree... what are the studies you are referring to? Who ran them? Where? How were patients screened, ect? There are a lot more variables in this than looking at serological markers proven to cause immune system problems that would benefit from IVIG (and please don't send me links to studies.) I conducted a study with a bunch of friends from UCLA in my basement. Does this count? You get my point.

Unfortunately there a lot of different reasons why people can have ME. Patients are very often misdiagnosed with ME, fibromyalgia, depression and a lot of these "fall back diagnoses" to later they had something much different causing their issues. I was diagnosed with both ME and fibro for years before i found that i had a pretty serious underlying neuromuscular autoimmune disease. None of my docs were sensible or smart enough to refer me to the correct area of medicine for this specialized testing. So I went undiagnosed for years and taking unnecessary medications and treatments that had side effects and made me much worse. Sort of like it would be for a patient here who tried IVIG for their ME, but didn't really need it because their immune system is working fine and they really have a chronic infection or some other underlying problem.

There are many people here like this, diagnosed as having ME but really have something else causing it that is why i encourage people to tread cautiously with treatments like IVIG that run the risk of making them worse unless they can prove some type of immune component of their illness. Again that is my opinion but it is also a general rule for most practicing physicians when deciding to administer IVIG. Of course there are some extenuating circumstances with very sick patients where the use of IVIG is warranted despite not having any signs of immune dysfunction, but that is up to the doctor and patient to decide. Like you have stated it is all about risk/beneift.

In the meantime, as a rule of thumb, I would be careful not to advocate for a treatment that has serious risks and the potential to make patients much worse without proof of immune system involvement, since in fact it is an immune modulating treatment. But as well all know, it is best for people here to talk to their physicians and come up with a sensible plan.