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[QUOTE=tooyoungtobeill;3651267]Hi everyone.

A little history:

Otherwise healthy 21 year old
Was diagnosed in Feb. with AIHA, coombs pos., hgb 8, hct 19, rbc way too low, liver functions through the roof with billirubin in the urine, etc.
Prednisone (began at 100mg and tapered down) until June

Prednisone brought my blood back to normal rather well but with terrible side effects. Now, about a month off the pred. my hgb teeters between 10.5 and 11.5, and my hct between 30 and 33 (I get my blood checked weekly).

I take folic acid and have begun b12 shots and iron infusions due to low iron from hemolysis. [B]I read that these can make your blood look like you're not hemolizying when you really are---has anyone else heard that?[/B]

Remain coombs positive almost 6 months later.

Thankfully my CT scans and bone marrows have come back with negative results and all other tests appear normal for now.
[B]
My hema. would like to start me on Rituxan infusions. [/B] I am hesitating though because my numbers are holding on their own (see above) and Rituxan is a serious, serious drug. My hema. says that because I am still Coombs positive that this is a chronic problem and I am likely to relapse with another hemolytic crisis soon. He believes that Rituxan now, will hopefully put the next crisis off for a while.
[B]
Has anyone had Rituxan while in a "remission"?

Any experiences or advice would be greatly appreciated. Thank you.
[/B][/QUOTE]
I know alot of you have had different treatments for AIHA. BUT IF YOU HAVEN'T had a Rituxan treatment please stop scaring people away from it. I have had this disease for 10 years. I know alot of you have read my story before but some new people haven't. I was first on Prenisone for over 2 years. Gave me the osteoporosis at 23. The Dr that was treating me said she only heard of it in dogs. Even last year when I came out of remission and took my dog to the vet when I was better she said she had never heard of it in a human. I had my spleen removed. It didn't help I now have to get a flu shot every year and a pneumovax shot every five years. Then I went to THE MOST BRILLIANT HEMO in the country and he gave me Rituxan. The reason I know he is the best in the country is because he was the first Dr. that started using Rituxan. I was the 9th person in the country. I had a four year old son at the time and was willing to be a trial patient just to get off steriods. It put me in remission for three years. Went through four more treatments and was in remission until last year. Again went through Rituxan treatments and I am proud to say I am in remission once again. The only thing that I take for my AIHA that I have to take for life is Folic Acid. No B-12 injections, no iron treatments. And no if your in remission you will not have a positive coombs test. Direct or indirect coombs. That is how they tell your hemolysing. And they tell by your retic count. Last year me and my hemo had a huge falling out. He switched hospitals and I followed him to this other hospital because of the fact that this man has saved my life 3 times. He has no bed side manner and he tells people how it is. But when it comes to his patients if things aren't in order and where he can find them he blows a gasket because he is that concerned about his patients. Last year my insurance company didn't want to pay for my treatments because it wasn't FDA approved yet. And he fought my insurance company and showed them article after article how it worked for this disease. If you don't feel comfortable with your hemo. YOU ARE THE PATIENT YOU HAVE THE RIGHT TO A SECOND, THIRD, AND FOURTH opinion. Until your satisfied. It is your life and your health take it into your hands or you will be the one lost. I always investigate my dr.'s before I go to a new one.





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