Day 100!

[maryotaber]

Hello everyone!

I've been a lurker here for 4+ years now when I was diagnosed with SAA in my junior year of college and can not thank you all enough for all the information/perspective I've gotten from reading everyone's posts. I had my BMT at Dana-Farber this past March and am so happy to have gotten to Day 100 so successfully (helloo salads!). I had my second Hickman removed last week and if my magnesium level would finally come up I'd feel like a new woman!

Anyone else have a hard time getting their Mg level to come up post trasplant? I've also developed horrible tinnitus in my right ear, which after having a bunch of tests done, seeing an ENT & neurologist, and trying zillions of meds, I'm just hoping it's either meds-related or random and will go away with time. But if on the off chance anyone else has experienced this, I'd love to hear stories!

Many thanks and well wishes to all!

[evansmom]

Hi there,

Glad to read you are doing so well! Congratulations on reaching Day+100, that really is something to celebrate! When my son had his BMT for AA, he needed night time IV hydration for around four months. He was discharged home around Day+36 and continued on the IV until around Day+112. In that IV bag each night, I had to add a very large dose of magnesium as his level was very low. After the hydration was stopped, Evan had to continue on oral Mg for another few months after that. Fortunately, he tolerated the Mg well without the diarrhea that is often seen with the high doses.
Cyclosporin and the sister drug tacrolimus list low Mg as a side effect and that holds true for many people. Once the drug is tapered out, the Mg recovers with normal dietary intake.

Hope this helps.

Keep well,

[evansmom]

And the tinnitus could be related to the low Mg level. Get the level up and the ringing may stop.

[mausmish]

Congratulations on day 100, an important milestone for you. I've heard nothing but great things about Dana Farber.

[maryotaber]

@evansmom Geez, it seems like low Mg is the cause of evvverything, haha. Your son is so lucky he tolerated the oral dose! They had me on 1200mg 3x a day for a little while, but it was so hard on my GI tract, it was thankfully cut down. Thanks for all the info!

@mausmish Thank you! I do love Dana Farber. They've been so good to me.

[squirrellypoo]

Congratulations! Day 100 is such a big milestone to get to!

[Hopeful]

Hi Mary,

I use to live near Syracuse! Go Orangemen!

I also have low Mg, but it's from cyclosporine (no transplant).

Initially, my doctor had me taking magnesium oxide, but my GI tract could not handle it. Now I'm taking Slow-Mag which is a delayed release magnesium chloride that is so much easier on my gut. Supposedly, this form is more easily absorbed so that you don't have to take as much of it. My Mg is still below normal, but at least it has stopped dropping.