I've been getting IVIG for about 4 years now. Everything was going so wonderful in the past but for the last few months something has changed for some reason. I am now noticing that I get a burning sensation on the skin of both arms after the IVIG's and was wondering if anyone else has that happen to them?

I take benedryl and a small dose of steroid before each IVIG treatment so I am confused as to why my skin feels like it is burning. It doesn't happen right after the IVIG but usually 3 to 4 days after the infusion. I've been getting quite a bit of IVIG's over the last few months because for some reason my MG is acting very weird. I used to get one IVIG every 5-6 weeks but over the last four months I have been in getting multiple IVIGs in the hospital and at home. Could it be that my system is overwhelmed with them?

Anybody know what could be going on? These IVIG's used to work like magic for me and I am just so frustrated that things are going all crazy on me for some reason now

I am seeing a MG specialist on Wednesday and am so nervous. After 15 years of living with this disease I have been able to keep it under control, almost to the point of forgetting that I have it but now it's a different story. I am just wondering if I have something else going on.

Hey Shari,

I don't get IVIG, so I can't help you with that. I just wanted to tell you I'm sorry you're having these new problems. Good luck with seeing your new neuro. Maybe he/she would know what's causing it. Was it by chance a new brand/maker? Just a thought. Good luck and take care.

Hugs,
Pat

I don't take IV IG so I don't know. You say you have been taking it 4 years now and lately your MG is acting up, is it possible you are going into remission and your MG is acting up because you don't need as much medication? I know that is how I figured out I went into remission, as my MG started getting worse, so the Dr. and I agreed to wean off the meds and bam it turned out I was in remission and had to much meds.

So talk to your Dr. and good luck!

Really? Well, I never thought about that because for the past 4 years while on IVIG, Mestinon and Cellcept I have been symptom free and then 4 months ago I started to feel weakness again. I actually went to a MG specialist today because my Neuro wanted another opinion on my treatment plan because he too is a little confused as to why after doing so well for so long, I started having symptoms again.

She actually suggested that maybe I should go back to having my IVIG every three weeks instead of every 4 weeks. Now I am not so sure what to do. I see my Neuro next week to discuss her suggestions.

I do know that in addition to being weak, I keep having periods of just feeling overall yucky. Not like a cold or fever or anything but its a feeling that is hard to explain.

I'm just so weird sometimes.

Any chance you have been using a different brand of IVIG?

I assume different brands of IVIG use different preservatives or fillers, like any other med?

Jenna

Acutally, it was a different brand so that has to be the reason why it made me feel so bad. I never had side effects like that from my usual IVIG brand. I didn't realize there was such a difference but now I know which one I should stay away from in the future.

Sometimes we just have to find these things out the hard way don't we?

I have had the problem you are talking about. I've been having IVIG treatments for 3 years now. Last year, I began having the problem with burning skin after the treatment and even more so, burning on my tongue. It turned out my IVIG brand had been changed to the powder that has to be mixed before treatment. Once they went back to the original brand (not a powder), the problem went completely away.

I also started getting a lot worse at the beginning of the year - or maybe more accurately, I finally noticed I was getting worse. In hindsight, it was a slow downhill process that I was trying my best to ignore. Anyway, I kept thinking it was because I had too many IVIG treatments over the past 3 years, so I started cutting back (in the form of missing appts and rescheduling). Then, I crashed pretty bad. At this point, my neuro increased my treatments to 2 each week over 3 weeks and then 1 per week ever since then (with occasional 2 treatments per week on bad weeks). It has kept me from getting worse and definitely helped get me over the worst part of not being able to get up at all , breathe, or have any voice, although not strong enough to go back to work.

Hope this helps shed some light on your situation right now with MG and I hope you get better soon!

Thanks SharS,
I was just thinking about all the IVIG's I've had over the past 5 months and was wondering if I may have had too many but now realize that I need them to calm down the MG again. I have one coming up this Saturday but not sure if I want it right now because I just got out of the hospital a couple of weeks ago and had a round of them there.

I love my home health Nurse. She is sweet as candy. I told her about my reactions to the other Brand that I received that last couple of times and she was quick to tell me that she would take care of everything and make sure to come here with my old faithful brand of IVIG.


It's been crazy the last 5 months but I am determined to see the light at the end of the tunnel!