Rea,
Are the docs monitoring your magnesium levels? Cyclosporine in known to decrease your magnesium levels. This can be the reason for the migraines. I know of people who have very good success preventing the migraines by taking hefty doses of magnesium.

Oh thanks for checking! Yea I had the magnesium problem too, last year I was on 1,000mg, 3x a day and it barely got me to the bottom level. Also, I have an intolerance to the IV mag so that really wasn't an option for me.

My magnesium level is doing much better now and only take 250/day. I'm not on a normal therapeutic dose of cyclosporine anymore, a bit lower. Because of the migraines and that I haven't experienced GVHD so far.

I've had several MRIs to check for blood clots (bc of the PNH pre-transplant) and PRES- all negative!

I had a nice stretch that was migraine free, but they've popped up again the last few weeks. Much milder though, without the vomiting and severity they were before.

PS another note about Migraines, for me personally sometimes they were an effect of a "hemolytic" (not a technical usage) event...I would get a migraine and then we'd find out my hemoglobin had dropped a couple of grahams within hours - so the migraine was an effect of the heavy hemolysis from the PNH.

I also had my transplant done at the ohio state james cancer hospital in columbus. every doctor and nurse truely had my best interest in mind. my transplant was on june 7 of this year and im going once a month now.

@rea- 100% At Day 29? thats amazing. im almost there. was 94% last visit :)

@summerdrake - awesome! I agree, OSU definitely has one's best interest in mind, and they really listen. No matter how crazy the prednisone made me : )

Glad you are doing well!

Hi Rea, I am trying to figure out how to private message you and failing. I am going to OSU James hemotology center so I wanted to contact you about it.

Thanks!

Shana

Click on Rea's name and an option will come up to send a private message.

Hi Shana,
I'd be happy to answer any questions. I tried to send a private message as well, but it looks like you have that disabled at the moment. Here's how to turn them on:
> My settings (first menu item in the horizontal gray bar, on any page)
> Edit options (a menu item on the left side)
> Check Enable Private Messaging (scroll down, under Messaging & Notifications)

And that should do it!

Dear Chreehill, my son has to get a haplo from MDA, soon...any advise
 

Dear Creehill
my son has to get a haplo from his mother in august from M D Anderson.
we are really scared and have contemplated to forgo the transplant.
could you please give us some advise.

Hi. I have been perusing these forums for a while, but haven't posted as my situation is a lot different from most. However I feel like I can maybe offer an experience and some information that can help.

I had kidney failure and needed a kidney transplant. I live in Baltimore, so of course I went to Hopkins. Anyways, long story short, I ended up in a trial that combined a mini (non-myleoblative) halpo BMT with a kidney transplant. Both the kidney and the marrow were from my wonderful mother. The idea behind it is I will hopefully not need life-long immunosuppressants for the kidney, since my new immune system will recognize the kidney as self.

I had the double transplant on Feb 4th 2014. I did get acute grade II skin GVHD that was successfully treated with high dose prednisone. For the haplo transplants they use high dose cytoxan on day 3 and 4 post to limit the effects of GVHD, and have had good results with it.

I also saw someone mention Prochymal for the treatment of GVHD. I actually happen to work for the company that developed it. It is only approved in Canada, but has been fast tracked by the FDA in the US. It is available in the US to children right now as a last resort. At the end of 2013 my company sold Prochymal to Mesoblast. It has been successful at treating GVHD, but it is not a miracle drug and doesn't work for everyone.

GVHD after PNH trans
 

I had an allo mud mini trans 2.5 yrs ago for PNH. No AA or any other disease. My GVHD has not been very severe compared to some pics that I've seen. I was told by the trans co-ord nurse that my match was as good as they were going to get. But I've also been told that GVHD is hit or miss regardless. Obviously having good med ppl treating you helps as well. Some peeps have basically no GVH, and I've been told that most dr's actually like to see a little bit of GVHD. I have some minor skin rash, dry eyes, a few slightly more severe rash spots that left small scars, but nothing too severe. It beats the alternative!!! I had some episodes b4 I was diagnosed where I shld have been hosp, so I was all abt getting treated/cured asap. Good luck to evryone