High Dosage IVIG Experience
 

Hi everyone,
I am a new member from UK with recent diagnosis of generalised autoimmune myasthenia gravis.
At moment all standard treatments are contraindicated and I am meant to be having high dosage IVIG for second time at rate of 2 grams /kg body weight over 5 days in hospital- I also have damaged immune system with IgA deficiency and anti IgA antibodies.
Does anyone have experience of being given high doses of IVIG over shorter time as my local non-secialist hospital is trying to give the full course as an outpatient over 3 days.
Many thanks,
Magister.

I can't say how much I got in the hospital over the 3 day period (my initial loading dose of IVIG).. but now I get 50g every 2 weeks (and I weigh 60kg).. so that's almost 1mg/kg during just one day... not sure if this qualifies as high dosage or not.. Other people at the infusion center get 100g in only a few hours .... I have to go at a slow rate or else I get side effects- chest pain, headaches and aseptic meningitis.. so I can't go above 100mg/hour .... I drink TONS of water the night before and up until 24 hours afterwards or so... that also helps!!
Good luck!!

(interesting about the IgA deficiency.. how did they diagnose or find that? They have wondered if I had that, but didn't check it till after I was on IVIG.. I have never mounted antibodies/titers to vaccines or illnesses that I have had.. they would check and it would be negative, and we would have to re vaccinate me etc.. my father has the same issue.. )

high dose igg
 

I have been given up to 400 cc (?) an hour in the hospital. @ the time, I was very, very sick and felt it IMMEDIATELY..in a god way, tho.

Now I get it @ 115 per hour, b/c I have had some side effects - nothing extreme - just a headache, etc.

I still love igg, just don'tget the "rush" I used to get years ago!

Hope this helps!
Erin:hug:

Erin- so do you feel that IVIG used to work better than it does after youve been on it a while??
The first several infusions it was AMAZING!!!!! I hadn't been able to move my face or smile for months and months.. and after that 2nd infusion I don't think I stopped smiling for weeks! I RAN around with my kids.. i felt 100% normal.. but since then I have never felt as good,. it DOES still work for sure.. and I feel it, but never ever like those first several times.. is that normal?
I am always wondering what I can do to get back to that normal- it was great!!!:D

Hi bny806!!!!!
 

FIRST OFF, LET ME APOLOGIZE FOR ALL CAPS....FINGERS R GIVING ME GRIEF.....:o

SECOND, I THINK WE WERE SOOOOOOO SICK THAT ANYTHING WAS AN IMPROVEMENT! LOL! I CAN TOTALLY RELATE TO YOU SMILING ALL THE TIME....DID THAT TOO! JUST FELT SO DARN GOOD TO BE ABLE TO MOVE MY FACE:D!

GRANTED, I DONT GET THE RUSH I USED TO, BUT I CERTAINLY FEEL IT WHEN I DON'T HAVE IGG........

SOME PEOPLE STILL GET THAT "RUSH" -I PRAY YOU ARE ONE OF THEM!

BIG HUGS!
ERIN:hug:

Yea, it's more noticable when I don't get it sometimes that when I do... I get all floppy fingered and cant move my face, hips shoulders etc..

Sometimes I wonder if the reason the first several rounds of IVIG felt like they worked so well, was because i was SOOO sick and weak that the dramatic improvement or difference between hardly being able to move and the improvement it gave me was such a difference.. now I function doing so much that the improvement isn't as big of a difference as it was before.. it's usually not until I go a while without that I realize.. oh wow, it really does do something!

To bny80
 

I totally agree! I forget sometimes how very weak I was.....WAS! :eek:
It was truly terrifying! After my "go-go" juice was given to me, I couldn't stop smiling....I was called "Mrs. smiley" @ the hospital....used to have to go in every few weeks to get igg.......I was so happy to be alive that I had no fear or inhibitions......I talked to everyone and prayed for them. :D
Big hugs!
Erin

Yes, It's hard to remember.. Everytime I hit milestones (thanksgiving, my kids bdays etc).. i think about one year ago and how i was unable to do anything .. i couldn'dt hold silverware, couldn't hold the kiddos, couldn't bathe them or ANYTHING... i couldn't be alone with them, and barely alone by myself, as I could only walk a few steps before melting on the floor and having to lie there for a long time before trying to move forward..
I saw a video of myself with the family - about one year ago now... last Thanksgiving.. and I was absolutely shocked when I saw my face- I told my husband.. it looks as though my face melted off my skull.. I coudlnt' believe i was walking around looking that way... people I worked with noticed.. but man.. it is crazy to think back about it all!
I have never been so thankful as the day I realized IVIG was working!

I'm on 1 mg/kg of body weight and get a dose every 2 weeks. I understand this is considered a fairly large dosage to have at one time. I used to get .40/kg daily for 5 days, but the 1 mg/kg works better for me. I get a better boost and can do it in 2 days/month instead of 5 days/month. The total monthly dosage is the same, just given in a different way.

Hi, Magister. I just wanted to say welcome to the forum. Erin has given you some good information. I hope the IVIG continues to go well.

Annie

Magister
Please speak with your doctors about receiving IVIG and having IgA deficency. I know there can be a increased risk of allergic reaction. You can google about it.I think they can give it without the IgA in it but please speak to your doctors about it.Just a heads up for you so please discuss this with your doctors.

Many thanks everyone
 

many thanks everyone for support. Yes anti iga antibodies are one of the main concerns about my treatment. Seeing various doctors and possibly ivig next week.
Regards
magister

Maybe I am a bit confused here, but wouldn't IVIG help if you have low antibodies? Isn't adding in good antibody that is not contaminated with myesthenia garbage the whole idea behind IVIG?

Immunoglobulin = antibody. Isn't that right?

I hope that I am right and that it will help. Somebody? Ideas here?

Celeste, These articles might explain it better. Someone can have a deficiency of IgA but also have anti-IgA antibodies, meaning that the body would mount an attack against incoming IgA. Make sense?

They can filter out IgA in IVIG but it's such a "rare" situation that unless you ask, Magister, they might not do it. The reaction could be an anaphylactic reaction or nothing or somewhere in between.

http://www.uscnk.com/directory/anti-...ibody-3023.htm

http://primaryimmune.org/about-prima...iga-deficiency

Magister, I hope your docs know what they're doing! They had better try IVIG in a hospital setting. This is nothing to mess with.

Annie

That makes sense. Thanks for clearing that up.

Good News IVIG
 

Hi Everyone,
Good News.
Had 2 days of high dosage IVIG at local hospital. Total of 160 grams low IGA IVIG as out paitient. Went well despite chaotic organisation and waiting for pharmacy for 3 hours to provide prescription on first day. On first day I had quite strong MG kickbacks. Today I had much less and completed course at 20 grams per hour instead of previous inpatient treatment at 4 gms per hour.
Careful monitoring plus slow and gradual increase and hydrocortisone plus antisickness seemed to work well with no sign of anti-IgA antibody reaction.
MANY THANKS EVERYONE FOR SUPPORT.
MAGISTER