Hairball01 & Promacta

I had a set-back with a 2 1/2 week hospital stay. During the time the Promacta program was aborted. It may be several weeks before I re-start the Promacta. I haven't abandoned the PDSA web site but I hope to provide updates when the program resumes. One thing for sure, I intend to start Promacta at the 25mg level. Earlier at the initial 50mg starting level, my count shot to 595k after just two weeks into the program. We know Promacta works but we don't have it completely under control.

What happened?

in case you didn't "hear" Sandi What happened? How come 2 &1/2 week hospital stay?

Spinal cord inflmation resulting in lower body paralysis. I've regained about 75% of normality but still need a walker. Hoping to get to a single crutch with out-patient therapy. Thanks for asking....

I'm sorry for the setback. My husband has transverse myelitis (9 yrs ago in April). Transverse Myelitis is a condition where your antibodies attack your myelin surounding the spinal cord resulting in inflamation and lesions. He was immediately paralyzed and has not recovered, so I'm so glad you're recovering. Are they treating you with steroids to reduce the inflamation?

donswife: I got the exact same diagnosis but was not ready to diclose it. Apparently there are several different pathogens that can cause the problem....some more severe than others. I very much sympathize with you and your husband. As for steroids... immediatly after the initial diagnosis I got 1000mg/day MethylPred for 4 days then 60mg/day Pred. I am now at 50mg/day tapering-off 10mg weekly.

Sorry to hear that, Hairball. That is scary.

Oh boy hairball.....that's a tough one. I"ll be praying for recovery for you. and your hubby donswife.

Hairball01, it sounds like it might be time for the good news bad news speach. The bad news is a diagnosis of TM, the good news is that TM is usually a one time episode, and after it hits, it doesn't return. You're left with the problems that goes with it, but it sounds like your in the top thirty percent that recover. You faced the scary part, (you know being paralyzed) and are recovering. When you feel like it, please feel free to ask questions. If you haven't already found it, try www.myelitis.org They have a good forum and lots of friendly people (just like PDSA.org). It's really interesting, Don's hemo doc says there's no connection between autoimmune disorders, but someone on this site said it best when they commented that when your immune system is suseptible, you are open to other immune disorders. I can't wait till you gain more mobility and can start back on Promacta again. You were doing so good on it.

I'll be praying for you both.... speedy recovery Hairball!

Donswife: Thanks for your thoughtfull consideration. I will check-out the myelitis web site. One of the problems is trying to explain the TM to my friends/family. Everyone seems to want exact black & white explantions.......and the answers arn't there. And sometimes the concept of total paralysis is really difficult for some to accept. As for Promacta... It might be late August before my Hemo Doc 'cautiously' re-starts the program. We've got to sorta overlap the Prednisone taper with the start of the Promacta.