:wave: Hi, I was just wondering if any of you have had B12 shots for your AIHA. The reason I ask is several years ago, before I was diagnosed with AIHA, a nurse friend gave me a couple of B12 shots. I felt so good and had so much energy. I'm doing fine with my AIHA right now, my counts are good and I am on 2.5 mgs of prednisone. The doctor wants me to do another round of rituxin and I know that will wipe me out for a few weeks. I would like to have that boost of energy. I asked the ARNP about it once, and she suggested the sublingual B12, it does not work like the shots. Would a doctor rx them without my being B12 deficient? Will it hurt you? Would he think I was crazy to ask?
Thanks.

I was just recently diagnosed with AIHA, and my hema prescribed Folic acid and Prednisone, not B12. I think everyone who gets B12 shots feels better, but what you are probably low on is hemoglobin. The way it was explained to me was that when my AIHA is active, it means I'm hemolyzing, destroying your red blood cells so I don't have enough hemoglobin - if you're like me, it affects your energy level.

The treatment I've heard for helping boost AIHA is the shot Procrit, which stimulates your bone marrow to make it produce more red blood cells - the theory being that if you make more, your body will have more left over, even though you're destroying them still. The only downside to the shot is that it is crazy expensive. I want to discuss this with my doctor next time my Hgb drops.

Did Rituxan raise your counts alot? Just curious, when your AIHA was active, did you have any fever with it?

I'd ask about Procit if I were you.


Jill

Just going throught the old posts and found this one. Still around Jill?

My counts did rise fast with the rituxan, a lot faster than the doctor thought they would. I had it a year ago this month. He wanted me to go another round but I opted not to at this time.

The first time I was dx'd, (7/98) I can't remember if I had a fever or not, I did have a killer sinus infection and thats what made me go tot the doctor, the nurse was the one who said I looked anemic. My second relapse my hct dropped to 29 and I didn't notice it at all, I was exercising and had a lot of energy. It was found on a routine blood test and I was shocked. Later my counts dropped again about 3 months after going off of the prednisone...I have opted to stay on the prednisone at a low dose, 2.5 mg rather than risk relapse and having to go on a higher dose.

My doctor has never mentioned procrit. I still haven't talked to him about the B-12 either.

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

The rituxan worked well, my hct jumped to 42 a few weeks after my last dose. I had 4 total. I felt OK- but it did wipe me out for a few months afterward. I couldn't get enough sleep. It took me awhile to figure out why. The doc said my B cells were being killed off. Also had the decadron push and benadryl.

I don't know what my B12 level is. I'll ask on my next appt. I don't know if he would give me a shot just because I'd like one.