[Laura]

Hello all...I am sorry to leave everyone hanging....I made myself update my site tonight...but feel so crummy I am going to be lazy and copy and paste here...but I will give you guys the real update that I can't post on my page because I have to be careful about Mayo there (basically the juicy details)....hopefully tomorrow?

Laura


I am sorry for the delay. And this will probably not be as updated as it should be either as I feel pretty crummy.

So basically this is the short version of the story.

Remember the drop in platelets? Well that was just the start...

So my platelets crashed down and I was started on high dose Prednisone (which the crash in platelets is most likely from the graft versus host disease too). A few days later I started noticing this weird skin rash that was very, very mild and wouldn't last long. A few days after I returned from Boston in June, after having been outside (sunscreen, shade the majority of the time, pants, hat, etc), I came in and my skin was very red and swollen. After a few hours it went away. Then because my platelets had gone up to the 100,000 range my Prednisone was dropped and things went out of control. The Prednisone was put back up to the highest level and then some on certain days but things continued to get out of control. It got to the point where basically any second of sun/uva light from lightbulbs/heat--including talking on phone for a minute, showers, cat sitting by me, etc would immediately swell up my skin and make me look like I had third degree sunburns minus the peeling and blistering. The longer the trigger, the worse it was and the longer it took to go away. My knees would swell and be so red, it was so painful I couldn't walk. Then my mouth started to go....my mouth became so incredibly dry, sore/painful, red/white spots...it hurt so bad I couldn't eat/drink/talk. However, SURPRISE!!!!!! My gut is basically normal since being on high dose Prednisone, which the theory is that it was from GVHD all this time. And my musculoskeletal symptoms have also greatly improved since being on Prednisone too, which the theory is that too was from GVHD all this time also!! And originally my fatigue was much better on Prednisone too, but when my skin went out of control so did my fatigue, so the theory is that my fatigue was because my body has been fighting GHVD this past year or so and anyhow....

There are a few other suspected areas of my body that also were being affected by GVHD too...

So what to do?

Well let me just say what happened. I went back to Boston a few weeks or so ago. I got started on Sirolimus. An immunosuppressant drug. Basically my donor's immune system has decided it doesn't like my body. The immune system is what recognizes what is foreign and destroys it...ie..you have a cold, it attacks the cold germs. Well my immune system got replaced with someone else's. And it has decided it doesn't recognize my body and so in order to protect itself it has decided to attack my body. The Sirolimus will suppress the immune system in hopes to suppress the attacking. Usually the first line of treatment for graft versus host disease (GVHD) is high dose Prednisone. And most of the time that is enough to take care of the problem and you can get weaned off it. However, I am on week six of high dose Prednisone and I was only getting worse by the day. So that is why the Sirolimus was added. I also was given Decadron (steroid) mouth rinse for every 6 hours to help the mouth. My skin is so much better. I still have issues but it is mild compared to where I was. And only after two weeks on the Sirolimus. My mouth is still pretty dry, but it isn't as sore and there are just a few areas left to heal.

From my understanding the plan is to continue on the medications until my symptoms go away and then remain on the medications for xyz (??) time frame. Then try and wean off the Prednisone alone. Prednisone is a nasty drug and the sooner I get off it, the better. (Already having to take Norvasc for high BP, watch my blood sugars and give insulin at times, etc because of the Prednisone. And not to mention I already have low bone density and the Prednisone could suck my bones even dryer and the risk of avascular necrosis.) Now here is where it will be tricky. The weaning process. If you go too fast, it could cause the GVHD to flare all over again, etc, etc. So the goal would be to wean the Prednisone carefully. And then down the road the Sirolimus.


Sadly about a week ago I caught bronchitis. I was started on the Z Pack, but the past few days I have gotten worse with wheezing, severe cough, congestion, possible sinus something or another going on, etc. So I feel pretty crummy. I am off to my primary tomorrow for a check. So that is why this is still a short update.

I am so thankful to Dana Farber in Boston and the medical staff there for basically stepping in and saving my life. I am so blessed they are willing to work with me. My physician at Dana Farber is actually chief of the program. He is also a pretty good leading authority on aplastic anemia status post bone marrow transplant and chronic graft versus host disease...sounds like me, huh? I can't help but wonder if God had it all planned out...he knew I would need this doctor...and he set the path in motion to allow me to have this doctor on my side...maybe that is why my gut was bad for so long? Because if it wasn't then I never would have gone to Dana Farber in June...and never would have connected with this doctor...so I wouldn't have had him in my back pocket to call on a few weeks ago when I so desperately needed his help.