Hi! Can anyone tell me how quickly IVIG is supposed to work and how long the effects should last? I know everyone is different, but I'd just like some frame of reference.
I had my last of 5 IVIG infusions, last week (Thursday), and today I am having to use a cane just to get around. Not sure if the effects have worn off that quickly, or if I'm not even supposed to have the effects, yet.
Any advice you could offer would be greatly appreciated. My wife has been an INCREDIBLE support for me, but she's as lost as I am when it comes to understanding this disorder and what to expect.
I've been having IVIG infusions for at least 18 months now every three weeks, and I'm in approximately the same space you are. I just had another EMG last week and the good part of this is my condition hasn't gotten any worse. After 8 years I seem to have reached a plateau, not remission but at a point that I can ALMOST handle. Gary
Everyone responds so different. IVIG will stay in your system for 3 weeks. The first year I had it once a week. Now, 4.5 years later it's once every 3 weeks. I've heard it can be as long as 3 months for some to show improvement. When are you scheduled for your next infusion?
I`ve had 10 infusions in the month of october,still no change.I was in the hospital for most of that time,had stomach surgery during that time.MY doctor told me that because of the surgery that it set back the IVIG treatments.For me its a little disheartng †hat I see no improvement.I can`t give up hope I just can`t.
My brother finished the first of his 5 infusions on the 7th. His girlfriend said he was so excited to be able to walk...this was for Sat and Sun...then Monday and Tuesday he said he had the worst days ever. I am hoping this is because he over did it on Sat and Sun. He is 29.
I see my neuro on Monday, and I'm not yet scheduled for another infusion. Today has been my worst day since my last infusion. The further out I go from it, the worse I seem to be getting. Didn't realize how much better I was feeling from them. Hoping he schedules me for more, as it seemed to help. Thanks, everyone, for your responses. I'm so glad I found this group!
I have 900mg(4 1/2 bottles) a day over 5 days every three months finish my latest course tomorrow seems to give me about 8 weeks of improvement (not full recovery) before it starts to wear off
I've had 5 infusions, get my 6th tomorrow. I get them once a week. And honestly, I don't feel any better physically. I have some pretty awful days. But I have noticed that some days, my mind is clearer. I have memory loss, confusion, just feeling downright stupid days. I've heard it can take 3 weeks to feel the effects, but I sure haven't felt any physically. I pray that as time goes on, I will.
My question Jordan is, do you feel worse? I'll join you in the memory loss and confusion department at least three times per week. I pray for your sake it doesn't get any worse physically. Gary
I did my latest infusion, today. Wore me out...could be the I.V. Bendadryl (LOL). I feel some better, already. The effects seem to come on pretty quickly, but don't last very long. I am scheduled to go back in two weeks, but the neuro wants to know if I notice rapid decline sooner so that he can get me scheduled every week, if need be. Here's to fingers crossed that I can make it the full two weeks!
IVIG just wipes me out. I can walk a little better right after the infusion, but it doesn't last long. But the unwell feeling never goes away. I feel horrible, almost like having flu symptoms all the time. I don't know what is causing it. I've told my neuro and primary that I just don't feel right. They run tests, they come back normal. There is something going on with me, but no one can figure it out.
springmang said:
My question Jordan is, do you feel worse? I'll join you in the memory loss and confusion department at least three times per week. I pray for your sake it doesn't get any worse physically. Gary
Well, I had my latest infusion on Thursday, and on Friday I was feeling SO MUCH better. I was still shaky, but able to get around and with little peripheral neuropathy.
Today, different story. Seems this morning it has returned with a vengeance. I don't know if I over did it, yesterday, because I was feeling so much better, or what. But it was so hard NOT to just do what I wanted, because it's been so long since I could.
So, my IVIG started working, quickly, and lasted all of a day...*sigh*
I'm not scheduled for another infusion for 2 weeks. Should I call my doc and let him know how temporary the relief is, or give it more time?
Just wanted to add my experience with IVIG. I have infusions every three weeks for two consecutive days - 20 gms/200 total. Not sure if this is a high or low dose. Does anyone know?
I can usually feel the effects of the infusions wearing off a couple of days before next one is due. Then it takes two or three days to feel a good sense of balance again.
Physical therapy for balance, strength and aerobic conditioning along with IVIG have been mostly successful but one without the other will not work for me. Hove had PT for eight months and now have joined the PT facility as a gym. The personnel are will trained to deal with CIDP and and its effects and they have the right equipment for my needs.
It seems that everyone's response to IVIG is a little different. Wouldn't it be great if there was more predictability with this condition and the treatments?
Yes, it would! I don't know what is "normal" and what isn't when dealing with the symptoms, treatments, etc. I feel like I'm bothering my neuro's office because I call them and ask, "Is ______________ normal?" They have been awesome, and very understanding, though. But, I just don't know what else to do but call them when I don't understand something, or think what I'm experiencing may be out of the ordinary for those with CIDP, ya know?