IVIG Who has Benefited

[pogoman]

@Gingergrrl
Actually there are two antibody tests for it but not all that have this disease (NAM for short) will test positive.
They are the HMGCR and anti SRP antibody tests, I tested negative for both.
Some info on the HMGCR test, note that only about 20-25% with NAM will test positive.

http://www.wieslab.com/diagnostic-s...72&pageId=116&subId=89&langId=1&productId=353

As far as getting IVIG approved, once my neurologist believed I had something autoimmune he ordered IVIG treatment and that was the only approval needed.

Last month when I saw him he noted I was doing better than when I saw him in December, so he ordered another 4 months of IVIG.

However I did labs at the same time and my CPK level is at the highest its ever been.
So he emailed me that a different treatment may be needed but for now to continue with the IVIG.

But I have improved even more so on high dose B2 so I am hoping the CPK level will be lower.

 

[Justin30]

That is interesting and I wonder if it is b/c he has found less allergic reactions with this brand or another reason? Do you have a link on this @Justin30 so I can read more about it? No worries if you don't!

Cant remember where i saw it...done way too much reading ☺

 

[nevergivenup]

I had my one and only experience with ivig Nov 2015. Had the treatment done on a Thursday and the next day spent a week in the hospital. I got aseptic meningitis from ivig. This year 2016 I started the hyqvia infusions and haven't had any problems.

 

[Gingergrrl]

I had my one and only experience with ivig Nov 2015. Had the treatment done on a Thursday and the next day spent a week in the hospital. I got aseptic meningitis from ivig. This year 2016 I started the hyqvia infusions and haven't had any problems.

@nevergivenup which brand of IVIG were you using when you got the aseptic meningitis and what were the signs that you had it? Am glad you are recovered from that incident and able to try it again!

 

[nevergivenup]

@nevergivenup which brand of IVIG were you using when you got the aseptic meningitis and what were the signs that you had it? Am glad you are recovered from that incident and able to try it again!

 

[nevergivenup]

Gammagard manufacturers Baxter. The next day I got up with a slight headache. As my work day went home the headache got more intense. Then my neck got really stiff. And also when I would go from different levels,like from the ground up stairs or different elevations headache got worse. Blood pressure was up too. I went to the ER and was admitted. They did a lot of different test. But what confirmed aseptic meningitis with a lumbar puncture and the test of my spinal fluid.

 

[Gingergrrl]

@nevergivenup thanks for explaining that and how did the doctors end up treating your meningitis and decide that it was safe to try IVIG again?

I know this can be a side effect and the two I am looking at are Gamunex or Gammagard but this all still remains to be determined.

 

[RYO]

As mentioned in another thread, I tried Gammagard for 10 weeks. It's been over a month since I stopped SC infusions. It is unclear whether my recent relapse triggered by Gammagard, but I haven't felt this bad since I first got sick. Having difficulty walking to the bathroom...

 

[nevergivenup]

@nevergivenup thanks for explaining that and how did the doctors end up treating your meningitis and decide that it was safe to try IVIG again?

I know this can be a side effect and the two I am looking at are Gamunex or Gammagard but this all still remains to be determined.

For that week I spend in the hospital the doctors had me on the Dilaudid and Demerol for pain. And a antibiotic Levaquin with Zofran. Also some people that can handle ivig which goes right into blood stream can tolerate hiqvia infusions which is the same thing far as treatment goes. It's just absorbed through your tissue verses your veins. I do and did better with it because it's a slower process.