IV IG: Intravenous immunoglobulin infusions

Hello,
so if I understand correctly, you're advising me against doing Ivig... I have an appointment in a few days at the hospital for my first session and I'm still hesitating to cancel.

Between the logistics, which will exhaust me and make things worse (3 hours in an ambulance), and the fact that the doctor doesn't want to share the protocol... I read that you have to start very low, at 0.25 grams per kilo for moderate and severe cases.
What a dilemma... I'm fed up with having no solution to get better except staying bedridden.

The last time I tried something, it was a stellate ganglion block, and I went from severe to very severe. I think I'll listen to you more. Thank you for the advice dear forum.
 
neophyte32 said:
Hello,
so if I understand correctly, you're advising me against doing Ivig... I have an appointment in a few days at the hospital for my first session and I'm still hesitating to cancel.

Between the logistics, which will exhaust me and make things worse (3 hours in an ambulance), and the fact that the doctor doesn't want to share the protocol... I read that you have to start very low, at 0.25 grams per kilo for moderate and severe cases.
What a dilemma... I'm fed up with having no solution to get better except staying bedridden.

The last time I tried something, it was a stellate ganglion block, and I went from severe to very severe. I think I'll listen to you more. Thank you for the advice dear forum.
Click to expand...
Personally I wouldn’t do it. But whatever you end up doing, I’m crossing my fingers for you :)
 
Thanks Yann, you're a sweetheart.
I asked for IVIG for 2 or 3 days with hospitalisation, but no... it's only for a single dose, and I don't know the dosage. They don't realize that every time we're taken out in an ambulance, we're risking our lives, or what little independence we have left. I'm in bed, but I can still talk, see my children, use my phone, listen to two hours of podcasts in the evening (my little moment of happiness during the day)...
Should I risk this for a possible improvement? @Jonathan Edwards advises against it for MECFS, and I tend to listen to him religiously.
 
neophyte32 said:
Hello,
so if I understand correctly, you're advising me against doing Ivig... I have an appointment in a few days at the hospital for my first session and I'm still hesitating to cancel.

Between the logistics, which will exhaust me and make things worse (3 hours in an ambulance), and the fact that the doctor doesn't want to share the protocol... I read that you have to start very low, at 0.25 grams per kilo for moderate and severe cases.
What a dilemma... I'm fed up with having no solution to get better except staying bedridden.

The last time I tried something, it was a stellate ganglion block, and I went from severe to very severe. I think I'll listen to you more. Thank you for the advice dear forum.
Click to expand...

Would highly recommend against. I did my first infusion recently and had a horrible reaction and crash I'm still dealing with. But I did one gram at a fairly fast infusion rate.
 
skronen said:
Would highly recommend against. I did my first infusion recently and had a horrible reaction and crash I'm still dealing with. But I did one gram at a fairly fast infusion rate.
Click to expand...
Normally, we start at 0.5 or even 0.25... An acquaintance was hospitalized for 5 days for IVIG, starting at 0.25 the first day and then 0.40 for 4 days. Using monitoring and very slow titration.

I read a study by Carmen Scheibenbogen on home subcutaneous IVIG ("Tolerability and Efficacy of s.c. IgG Self-Treatment in ME/CFS Patients with IgG/IgG Subclass Deficiency: A Proof-of-Concept Study" 2021) and she starts at 0.20 per kilogram for the first month and then 0.40 for the second month, 0.80 for 10 months after that.

I think I would only accept this under these conditions. But it's impossible in Europe. Yet many of us have been bedridden for years. This should be an emergency.
 
neophyte32 said:
Hello,
so if I understand correctly, you're advising me against doing Ivig... I have an appointment in a few days at the hospital for my first session and I'm still hesitating to cancel.

Between the logistics, which will exhaust me and make things worse (3 hours in an ambulance), and the fact that the doctor doesn't want to share the protocol... I read that you have to start very low, at 0.25 grams per kilo for moderate and severe cases.
What a dilemma... I'm fed up with having no solution to get better except staying bedridden.

The last time I tried something, it was a stellate ganglion block, and I went from severe to very severe. I think I'll listen to you more. Thank you for the advice dear forum.
Click to expand...
I’m afraid none of us can advise you what to do, although I do relate very much to your situation.

From what I’ve read on this forum, the evidence that exists does not seem to show a benefit of IVIG in ME/CFS.

Right now, my physical state (primarily housebound) would also make me pretty concerned about the health cost of trialing an experimental drug that required trips to the hospital and big expenditure of energy.
 
My immunologist and the one that oversees my Dara prescribed me IVIG for immunodeficiency so insurance can cover.

It helps with joint and muscle pain, pots, twitching, but not fatigue or brainfog.

I noticed this when all my non fatigue symptoms went away after starting IVIG in September last year. I didn’t need to take beta blockers for POTS etc. Heart no longer spikes when waking up or eating. You don’t notice it until it comes back, then you realize.

This makes sense as it neutralizes bad aabs

I am hoping to take it once every 3 months. So it reduces my ME to just fatigue.
 
There is a screening process for donors, and then the samples are pooled so that you get an average of what the donors had.

I can find some explanations about various steps that are taken to filter out non IgG-parts, destroy common viruses and such, but nothing about removing certain antibodies. I haven’t looked that far, though.
 
ryanc97 said:
Think with Akikos study , Tyler’s work and the Dara study it’s not hard to put 2 and 2 together
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It's always easy to put 2 and 2 together, but sometimes people get 3, or 5.
I don't see anything convincing here yet. I am very sceptical about suggestions of neuronal antibodies being responsible for cognitive symptoms.
 
Jonathan Edwards said:
It's always easy to put 2 and 2 together, but sometimes people get 3, or 5.
I don't see anything convincing here yet. I am very sceptical about suggestions of neuronal antibodies being responsible for cognitive symptoms.
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I mean, it’s simple common sense. We have studies showing AABs causing symptoms, we have studies showing removing the source of the AABs cures you, etc etc

You don’t need to be a scientist to connect the dots
 
ryanc97 said:
We have studies showing AABs causing symptoms, we have studies showing removing the source of the AABs cures you,
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Actually we have neither. That is why we have this forum, because it is all too easy to report a result that turns out to be a fluke or a misreading of data or something worse.

Anyone can join dots, but we want to join the right dots.
 
Jonathan Edwards said:
The key factor for monoclonals, which have similar issues with reactions involving complement activation or mast cell responses, is that with IV you can stop input the second you get a reaction. In general reactions occur in the first 30 minutes, after which time you can gradually increase input rate without worries. If you give a dose sub cut the patient may have a catastrophic reaction when they get home three hours later as enough drug has been absorbed into the circulation. This was something we predicted when sub cut was mooted for rituximab and for another antibody (I think an anti-CD22) it proved to be exactly that. Sub cut doses were followed by serious reactions later in the day.

For Ig the reactions are usually milder but they can get worse over repeated doses. For monoclonals the first dose is usually the problem unless there is a long gap and the person has become sensitised by a previous course.

I have no idea why Ig in whatever form should help ME/CFS. I suspect it doesn't.
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Is it not more likely that there is a subgroup of pwME that IgG might help?

For example, those who have recurent opportunistic infections and low IgG subgroups.

Scheibenbogen's group:

Tolerability and Efficacy of s.c. IgG Self-Treatment in ME/CFS Patients with IgG/IgG Subclass Deficiency: A Proof-of-Concept Study

Tolerability and Efficacy of s.c. IgG Self-Treatment in ME/CFS Patients with IgG/IgG Subclass Deficiency: A Proof-of-Concept Study - PMC

Background: Chronic fatigue syndrome (ME/CFS) is a complex disease frequently triggered by infections. IgG substitution may have therapeutic effect both by ameliorating susceptibility to infections and due to immunomodulatory effects. Methods: We ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov

Or do you think these patients are more likely misdiagnosed Common Variable Immune Deficiency (CVID( patients? Or something else?
 
Joan Crawford said:
For example, those who have recurent opportunistic infections and low IgG subgroups.

Scheibenbogen's group:
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That is an uncontrolled trial with a subject Chalder endpoint. I don't think it tells us anything meaningful. It is as bad as as PACE. Five out of 17 had adverse outcomes, which is pretty high.

People with ME/CFS do not have a significant incidence of opportunistic infection as far as we know. The idea that they are immunodeficient is, I think, a hang over from the speculation in the 1990s that it might have something in common with AIDS. That has never been substantiated.

And treating low Ig levels is quite different from treating ME/CFS. This just seems to be a confusion to me. Ig levels vary quite widely in normals, with no great significance. Treating low IgG normally is justified by a vvery low level and evidence of genuine opportunistic infection.
 
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