Finished Ten Days IV Steroids, Intense PT...
Posted: Thu Jun 01, 2006 8:54 am
Well, I'm back from my two week hospital adventure, which included ten days of Solumedrol and five days of physical and occupational therapy. I started off in a local hospital, where they started the IV, and then transfered to the Helen Hayes Rehab Hospital in Rockland County, New York.
The effect has been remarkable. I was quite skeptical that the steroids would have much effect, as their reputation with PPMS is poor, but my improvement has been pretty dramatic. Pre-Steroids, I could barely move my right arm and leg. Now, both movement and strength have returned, to levels I haven't seen in at least a year. This is after three years of steady progression. I only hope I can hold onto my gains after the steroids wear off. I'm hopeful that the fact that I was able to regain ability indicates that my nerves still have some life in them, and have not suffered irreversible axonal death.
As for getting through the ten days of SM, it wasn't as bad as I anticipated. I felt very speedy, and am still having trouble sleeping, and have gained a bit of weight. But it wasn't the excruciating, emotional experience I was dreading. I'm now on the first week of a four week Prednisone taper, which also hasn't been as bad as expected.
Next step, according to doc, is to get through the thirty day taper, and then start on a drug to halt progression, either Cytoxan, Rituxan, or Daclamizab. I'm anxious to get started on this, as I want to hold onto the gains I've made.
The PT and OT were helpful, but 99% of the gains I attribute to the IVSM. I'll continue doing some outpatient PT, just to keep my muscles toned, but I don't think it would be much help without the boost provided by the steroids...
Keep fighting the fight, folks...
The effect has been remarkable. I was quite skeptical that the steroids would have much effect, as their reputation with PPMS is poor, but my improvement has been pretty dramatic. Pre-Steroids, I could barely move my right arm and leg. Now, both movement and strength have returned, to levels I haven't seen in at least a year. This is after three years of steady progression. I only hope I can hold onto my gains after the steroids wear off. I'm hopeful that the fact that I was able to regain ability indicates that my nerves still have some life in them, and have not suffered irreversible axonal death.
As for getting through the ten days of SM, it wasn't as bad as I anticipated. I felt very speedy, and am still having trouble sleeping, and have gained a bit of weight. But it wasn't the excruciating, emotional experience I was dreading. I'm now on the first week of a four week Prednisone taper, which also hasn't been as bad as expected.
Next step, according to doc, is to get through the thirty day taper, and then start on a drug to halt progression, either Cytoxan, Rituxan, or Daclamizab. I'm anxious to get started on this, as I want to hold onto the gains I've made.
The PT and OT were helpful, but 99% of the gains I attribute to the IVSM. I'll continue doing some outpatient PT, just to keep my muscles toned, but I don't think it would be much help without the boost provided by the steroids...
Keep fighting the fight, folks...