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BlueBelle!
Very important! I was really low on energy even though my AIHA was under control. I was exhausted, had muscle twitches, felt like I was in a fog. TOld my hema, she looked at my chart and my B12 levels were like 247. She said they just changed the standards for what is considered low. I started getting B12 shots every other week in addition to sublingual B12, and my B12 levels shot up above 700 - and most of the symptoms disappeared. She basically said that because I had a AIHA episode, essentially my red cells were exploding, so what little B12 was in my system wasn't being used properly. IT can get very serious.

Push for the shots. My insurance, (the company that denied me IVIG recently, but we fought it and won) paid for the shots, so that wasn't an issue. The big thing is that the standards have changed, meaning they are now recognizing the problems B12 levels below 400 can cause. She also said that many of her AIHA patients have to get B12 shots. It takes awhile to get back to normal.

Does Rituxan help you? How does it wipe you out? I just had two days of infusion of IVIG and it raised my counts, but the 20mg of Decadron they gave me via IV really killed me for the next few days. Dizziness, stomach pain, headaches, joint pain. Sheesh. They did it so I wouldn't react to the IVIG, but it seems like there should be something else. 20mg of Decadron is equal to 80mg of Pred, so you can imagine doing that for two days and then going cold turkey.


I'm interesting in hearing your experiences with Rituxan, because I bet someday that will be an option for me.

Best,
Jill





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