new member with questions
 

Hello Everyone,

People can have various reactions to IVIG, some of them serious, and you had a large dose. What type of reaction did you have? Did the doctors do anything about it?

If you needed a one-time transfusion due to blood loss then that wouldn't require a bone marrow biopsy. Given your angiohemophilia doctors may have been reluctant to do any more invasive testing than necessary, even though acquired angiohemophilia is often seen in conjunction with other bone marrow failures.

In any case, you've had a BMB since then, so you know that your cellularity is low but not extremely low. Is your doctor recommending any treatment for you now?

Hello,

Your symptoms from IVIG sound pretty awful but on the scale of possible side effects they are actually on the less-dangerous side. If you absolutely had to have IVIG again, they might control the side effects symptomatically and perhaps forestall them with a slow-paced infusion. However, if you need surgery in the future they may have better choices to offer you than they did 5 years ago.

I should mention that I'm a caregiver for my wife, not someone with medical training, so I'm not speaking with authority. Instead I'm telling you what I know from what I read and from our own experience with IVIG.

Your general practitioner should certainly know your full medical history, and I think that you should have a hematologist you see routinely too because of your AVWS. However, unless routine tests or symptoms show that you might have an ongoing blood or marrow problem other than AVWS they may not see the need for a bone marrow biopsy or other non-routine tests.

Thanks for your help.