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How fast does improvement take on Immunoglobulin?

Sing

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I have recently started sub-c infusions of Hizentra at 25 gms per week and wonder about how long it will be before I can expect improvement? So I am asking about your experience.

So far my side effects include increased tiredness/sleepiness. Of course a slower mind and motivation to do anything go with this. It seems to come in waves of a few hours, off and on. Now I feel compelled to take a nap—in fact some days, I want to take a second—when before I got through the day without napping. The first two days I had diarrhea too but that has stopped.

When did you first start to notice glimmers of improvement—or better?
 

Sing

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Only been at it for 2 ½ months and not sure I am seeing improvements yet. Have been told that 6 months is a good trial. As for side effects, I am still sleepier and more brain fogged than I was before starting, so I can’t say yet that it is helping, but I still have more of a fair trial to go.
 
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Would you be willing to share what kinds of improvements you hd?
I talked about them more here:
https://forums.phoenixrising.me/threads/what-happens-with-ivig-therapy.78117/#post-2240732

https://forums.phoenixrising.me/conversations/questions-about-scig.72207/

I also had a lot of more minor and random symptom improvements that I didn't get into since the list would be very long and I do not have the energy to get into it. But it has definitely helped me. I'm nowhere near cured and I'm still severe/very severe, but not getting worse at the scary rate like I was before.
 

Avena

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Only been at it for 2 ½ months and not sure I am seeing improvements yet. Have been told that 6 months is a good trial. As for side effects, I am still sleepier and more brain fogged than I was before starting, so I can’t say yet that it is helping, but I still have more of a fair trial to go.
When I started (sc) I was told at least 4 months to se if I had any effect at all. A year for final conclusion. (My insomnia and hypotension got so much worse that I stopped after 4 months).

In my experience, “sleepier” is a good sign that my body has entered a rest mode that can facilitate improvement. Hope it is a good sign for you as well!
 

Sing

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@Avena I am sorry it didn’t work for you. The sleepier side effect for me is accompanied by more stupidity, hypotension and weakness. This is not so extreme I want to stop this trial of immunoglobulin, but if it turns out not to give me help by 6 months, I also won’t be very regretful to give it up.
 

Avena

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@Avena The sleepier side effect for me is accompanied by more stupidity, hypotension and weakness.
Sorry to hear that. I remember the weakness as well. A kind of “overload” feeling, right?

Have you discussed with your Doctor if it is possible to target the hypotension? I regret not adding Florinef before I had to stop. A drug I now know always is right for me when the hypotension get worse. I also did not know then how much a simple thing like electrolytes could have helped.
 

Sing

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My doctor and I have been working on the hypotension and I do take Florinef, but these meds don’t resolve the hypotension or the symptoms from immunoglobulin. They probably help my symptoms, just don’t fix all the issues.