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.
 
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