IV IG: Intravenous immunoglobulin infusions

[Mfairma]

Which type of groups are you in ?
Seasoned ME patients ?

Would be interesting how you summarize their experience.

Personally, I know some patients that benefit / benefited and also some patients that have crashed from IVIG
From SCIG I haven’t heard any crash story as of yet.
……………

Currently wrt data - as far as I can recollect - there were a few (inconclusive) small ME patient IVIG trials quite some time ago, one recent on low dosage SCIG, and there is one trial for Long Covid coming up in the US.
And than there is anecdotal experiences and lowest quality of online survey data available.

I relapsed on SCIG. Haven’t gained back that function in two years since. Apparent treatment harms just don’t have the legs apparent improvements do.

 

[neophyte32]

I tried IVIG despite my severe condition. It was hard getting to the hospital, but I did it twice—first at 0.20 and then at 0.40 per kilo. There was no particular benefit.
I had my first at-home session three days ago—SCIG this time—at 0.25 per kilo (twice a month); I felt very unwell afterwards and the next day. I felt okay yesterday, but today I’m feeling bad again. I can tell because my baseline tachycardia is worse on the days I’m not doing well...
Yesterday, my heart rate was between 75 and 90 while standing (I’ve been on a low dose of nebivolol for a year), whereas today it’s 95–105...

I’m going to continue for another two months, but if things get worse in 10 days after second SCIVIG, I’ll stop... im bedridden but i can speak and use my Phone...

 

[Mfairma]

I tried IVIG despite my severe condition. It was hard getting to the hospital, but I did it twice—first at 0.20 and then at 0.40 per kilo. There was no particular benefit.
I had my first at-home session three days ago—SCIG this time—at 0.25 per kilo (twice a month); I felt very unwell afterwards and the next day. I felt okay yesterday, but today I’m feeling bad again. I can tell because my baseline tachycardia is worse on the days I’m not doing well...
Yesterday, my heart rate was between 75 and 90 while standing (I’ve been on a low dose of nebivolol for a year), whereas today it’s 95–105...

I’m going to continue for another two months, but if things get worse in 10 days after second SCIVIG, I’ll stop... im bedridden but i can speak and use my Phone...

I found the sessions to be hard on my body as well. Administering the drug and sitting uncomfortably while it infused being part. But it also made my head feel very spacey in ways that made it hard to do much else on the day of.

 

[fst]

FWIW, being severe, I had an immuno absorption and 0.5 mg/kg IVIG. Obviously I can't tell which of these (if any) caused the effects.

I think it improved my PEM. After the whole endeavor I crashed for only 3 days (expecting multiple weeks). The PEM also felt less "bodily".

Also my heart rate got noticeably lower and my muscles stopped hurting for about 4 weeks.

What was left was debilitating fatigue and unchanged cognitive symptoms. Much like @ryanc97 said. Actually, I even felt more fatiqued than before, but I prefer it to being completely wired all the time.

Overall, it did not help or change my quality of life (or Bell Score) much, but it also did not hurt. Probably just a waste of money, but I felt that I had to try.

 

[ryanc97]

FWIW, being severe, I had an immuno absorption and 0.5 mg/kg IVIG. Obviously I can't tell which of these (if any) caused the effects.

I think it improved my PEM. After the whole endeavor I crashed for only 3 days (expecting multiple weeks). The PEM also felt less "bodily".

Also my heart rate got noticeably lower and my muscles stopped hurting for about 4 weeks.

What was left was debilitating fatigue and unchanged cognitive symptoms. Much like @ryanc97 said. Actually, I even felt more fatiqued than before, but I prefer it to being completely wired all the time.

Overall, it did not help or change my quality of life (or Bell Score) much, but it also did not hurt. Probably just a waste of money, but I felt that I had to try.

Yeah, I wish it helped w my fatigue.

I would trade being in mild pain and pots and muscle twitching if I could get road off the fatigue.

But at the same time, both is too much to handle, so I’m lucky it helps me in one aspect