Started Back On 3 Years Of IVIG Today

20 Dec


IVIG (Gammagard) Infusion Today With New RN

After a short break I am now back on IVIG Gammagard infusions. I started my first round of a 3 year study program today with my new male nurse. I’m still on full dose 32g/300ml infused over 3-4 hours once per month. I may be going on a 4 infusions per month schedule or increasing my dose soon.

The new nurse is nice & strict, professional so I know everything is done per standards. I infuse at home in my chair while watching tv. We tried to infuse yesterday but I had a previous 24 hour cluster headache that wasn’t going away and the vein we used clotted so the line filled up with air bubbles. He pulled the line and we stopped. My vitals were not good so will called my doctor & she postponed it for a day. I explained to my RN I have MTHFR & I clot very easy or if I take a baby aspirin I bleed out easy.

Last time it took 11 collapsed or blown-out veins to get one good vein, I looked beat up or like a pin cushion. Today it only took 5 veins & one blew-out pretty good. My veins I’m told collapse & vasospasm or they roll. Nurses always have a hard time.

The nurse slowed the infusion rate to 5 hours (instead of the pervious 3 hours) and gave me an extra 500ml of saline afterwards (which the previous nurse never did). As always I took my precautionary meds (listed below) so I hope to avoid aseptic meningitis tonight or tomorrow night like I usually get. The meningitis and other symptoms from the infusion are horrible & if they lasted more than 3 days I think I would have to take my own life (it’s that painful in the brain). Last time I couldn’t move, talk, breathe, see…..& the hospital treated me like I was a liar. I have a high pain tolerance but this was bad. I hate going to the ER!

So I’m very exhausted and even fell asleep during the infusion so I am going to rest up. Just wanted to post this in case anything goes wrong later on. Staying positive.

List of pre-meds for 30g/300ml of Gammagard IVIG infusion:

Benadryl 50mg
Tylenol 1000mg
Caffeine (I drank a coke)
E-Lyte (electrolytes)
Plenty of water to hydrate veins
*These will hopefully help you with side effects & the brain swelling or common migraines

Stay strong Spoonie family. Happy Holidays.


4 Responses to “Started Back On 3 Years Of IVIG Today”

  1. Brenda Hardison December 22, 2014 at 6:28 am #

    I am sorry of your suffering. I know I have contracted Lymes after pulling a black legged tick out of my head, but what I get around here (Canada) is ignored, incorrect statements from specialists and my family doctor stating Yes, we can call this lymes and have been refused STD LTD, one tick has ruined my life, I am not the same person I was before and do not know how to deal with it. I hope these treatments help you and my prayers are with you.

    • 49er Bryan January 19, 2015 at 12:02 am #

      If you are close to the border I have heard many patients getting help and meds within a short drive into the US. Good luck and sorry

  2. Brian December 25, 2014 at 2:58 pm #

    Bryan, glad to hear you got accepted to program. Hope you feel better in the coming months.

    I am doing my weekly infusion right now, 100ml, takes a solid three & 1/2 hours using a freedom pump.

    Merry Christmas to all those who are chronically ill,


    • 49er Bryan January 19, 2015 at 12:02 am #

      Thank you, I hope your treatments are going well. So glad I got into this program it will save me tens of thousands. Hope you had a good Christmas

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