Thanks, they gave me gammagard. Any idea how that rates?
kathie

Kathie 3 weeks ago now I had a 5 day series of Gammaguard and had a bad reaction as well, I ended up in the hospital having blood transfusions. The dark urine is the key, you are most likely having a reaction called hemolysis. I had similar blood work results and what's happing is you are sensitive to one of the antibodies in that batch of IVIG.

The antibodies that you are sensitive to are attacking your red blood cells killing them off, thats why your urine is dark, your bilirubin is up and hematocrit is low. I am shocked with these results that they are giving you just antibiotics. The main issue is your losing red blood cells at a rapid rate and going into hemolytic anemia which results in weakness, tiredness etc. I could hardly stand for about a week and needed 2 transfusions to keep from going into shock.

What is your hemoglobin at? It should be greater than 14.2 that will be an important number, mine went as low as 7.

I would ask the doctor you are able to talk to about hemolysis due to the IVIG it does happen...

Joe, thanks for responding so quickly. I am calling the neuro now.

kathie

Thanks Joe, I was hoping you'd chime in. Interesting about the GammaGard. I've not heard a lot of good things about that one in general. :(

Kathie, I would ask for a haptaglobin and reticulicyte rate, the haptaglobin is a measure of how many 'scavenger' molecules are needed to remove the damaged blood cells, the reticulicyte rate measures how fast you need to regenerate the lost red blood cells.

The haptaglobin rate is key as its a measure of how fast the body needs to clean up dying red blood cells and would be a key indicator of hemolysis.

Joe

JoeNH, :Tip-Hat:

I agree with the others - Brand is Key... I was on one brand (can't remember the name) and had all the bad reactions.. once they switched to Gammunex I have been SOOO much better.. The infusion nurses basically say some of the brands are "dirtier"/ have more by products that can cause ill effects, while the Gammunex is "cleaner".. and causes fewer reactions.. How are you feeling? what did the neuro say?

I just had two days of Ivig on Wednesday and Thursday. From what I was told, I had a hefty dose of gammagard at 70 grams per day. I did okay the first day, but woke up with a headache the next day. As the day wore on, the headache got more severe, so they slowed the rate of infusion. Through the night and all day yesterday, I had a severe headache, and when I moved my head it would intensify. When I tried to touch chin to chest my neck would hurt down my spine to the level of my shoulder blades. Had numerous body aches and had to take narcotic pain reliever to dull it. Had a temp of 99.9, but considering my normal temp is 96.7, that was significant for me. I was told to drink Gatorade and hydrate as much as possible and continue Benadryl and pain meds. The doctor said if i went to the ER, they would only give me fluids and pain meds, and he didnt want to put me in the hospital unless he had to. Glad I stuck it out. This morning, I am not in pain and feel much better.
Now to wait for the good effects. I was told by the pharmacist that gammagard does not contain sucrose, which can be damaging to the kidneys.

I am at home and resting. I still feel very weak, I have a bad headache and a lot of muscle pain. Urine color is lighter but still tea colored.

Attending of substitute neuro called late yesterday. She only had a verbal read on the abdominal ultrasound. There were abnormalities of the liver and pancreas. He did not have a read on the spleen. Blood work will not be back until Monday. So I am sitting tight, resting until Monday. I ordered a combo oxygen, blood pressure, pulse meter online so I can monitor myself. I can tell my heart rate is fast with occasional chest discomfort but not as bad as it was, so I think I am improving. I am just concerned at how low my hematocrit has gone.

I don't think I will go through IVIG again. I am pushing for a Thymectomy as soon as possible. They upped my pregnisone to 30mg a day until I see the neuro in 2 weeks.

Thanks everyone with getting back so quickly. I was pinning all my hopes on IVIG since my MG has gotten worse, so I am very down right now.
kathie

Have you tried plasmapheresis yet? The only reason I went back to Ivig was that I was having such difficulty with everyone getting on the same page so I could get it started back. My neuro ordered it, but the nephrologist staff people do not want to be bothered with me as they have plenty of kidney patients to keep them busy.
Plasmapheresis made me much better, it's just being able to get it is the problem for me.