How fast does improvement take on Immunoglobulin?

[Sing]

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?

 

[Aerose91]

Is what you described here the same as IVIG? I'm also interested to know the answer

 

[Sing]

Is what you described here the same as IVIG? I'm also interested to know the answer

Yes. IVIG is the intravenous form and SCIG is the subcutaneous, which the body absorbs slowly over several days. Same medication.

 

[Aerose91]

Thank you, Sing. I'm curious as to how this works out. I'm keeping you in my thoughts

 

[ebethc]

@Sing

how are you doing on SCIG? have the side effects subsided? Hope you are seeing benefits

 

[Sing]

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.

 

[katarina]

I saw improvements on Hizentra in the first couple of months

 

[Sing]

I saw improvements on Hizentra in the first couple of months

Would you be willing to share what kinds of improvements you hd?

 

[katarina]

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]

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]

@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]

@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]

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.