My IVIG schedule got off a little and at four days late I have crashed I haven’t been able to get out of bed and I am making mistakes on when to tak meds . I am crashing…
Sorry to hear this, Robert. I hope you can get your IVIG back on schedule soon.
Aloha Robert,
Crashing, me also!
Get a by-the-day pill organizer. I keep my pain meds separate from my "old guy" meds, which are: lisinapro, statis, Imuran, D & B vitamins, multi-vits, aspirin 84@mg... well, the rest I've forgotten.
I'm 64. No matter debilitated I am during "the crash" I always find a way to exercise: Joe Wider weight machine for arms, stationary bike for legs, walking with small weights or swimming for anaerobic conditioning. Lawn mowing on a lawn tractor for a good tan.
I will use a cane, a walker, or a wheel chair to get to the pool. My wife helps me when I ask her. Talking to people at the pool (even if I can only float around like a wet noodle), I find this most important part of dealing with this disease; getting out and talking with fellow swimmers, talking story, finding courage. Listening to their problems sometimes produces an empathy reaction in me that seems to flood my body with pain relief. Some of them have far worse conditions than mine.
One young guy fell out of a second-story window, on to his neck, he's now paralyzed from the waist down. Damage was at cervical spine - C2, through C7... go figure! He has a Norwegian gal named, Brita, who turns every head at the pool... Truth, I go to get a glimpse of her in her tiny bikini!! Kidding! My God, she swims like a seal and smiles like Anita Ekberg... Dolce Vita!
Hang in there my friend!
The rescue hours, when the IvIg begins working... well it is like sex (a bit of hyperbole here), it is a religious moment, even a Fred Astair moment if I'm lucky. LOL
I got my IVIG Friday and it’s straightened out. What a difference .
From feeling bad to treatments and getting on top of the world to crashing what a roller coaster ride.
I am now on my way to hospital for my 78th IVIG- every 4 weeks.It lasts about 24 days and then gradually wears off so my weakness comes back.I can just about lift a milk carton to put in my tea so I just rest-there's no point in over exercising because I pay for it afterwards in pain.I always like to accompany this period,compliment it,if you will,with top quality plant material to keep me going.
I am in need of today's treatment.
All the best to all struggling along.
Speaking of treatment—GAMUNEX-C @ 5% (40 grams/day, x3 days, every 15 days = 240 gr/month) OR GAMMAGARD 10% (also 40 grams/day, etc.)
One of these works for me... the other one, iffy.
Anyone here have an experience with these two IgG antibody infusions?
Thanks = E
I used to have 40mgs VIAGAM but for the last 4 months have switched to GAMMAPLEX.The main benefit is the lack of general malaise after treatment and it also only takes 4 hours to work through instead of 7 with the VIAGAM,a win-win for both the good old UK NHS and me.I sometimes took a couple of days recovery time with the VIAGAM but feel great after's today's GAMMAPLEX.
Another patient today came out with a hell of a rash really quickly so they stopped the treatment.My neurologist says an allergic reaction is always possible even if your body has tolerated the IVIG for years.
As I told him,it hasn't happened so far.If it happens,it happens.
I have started developing blisters and a itch on my shoulders and neck after two infusions at a rate higher than 150 and had to slow the last one down . The rash isn’t gone but has improved .