PG Update

[Guest guest]

Hi , Jeff, and group:

I have been away from the site for several weeks simply because I

needed a break from all of the medical 'stuff.' Things, like my

emotions, have calmed down now, so I thought I would check in.

After getting out of the hospital in February, the Stanford team took

me off of IVIG treatments, as they thought it stopped working. The

wounds were getting worse on my leg and even morphing into one huge

wound from the top of my calf all the way down to my heal. They were

deep, bleeding, and extremely painful. I was even back in the

wheelchair and a walker on 'good' days.

Not to stretch this out too much, but the Prednisone was elevated to

60 mgs., and I began Remicade infusions (again). This new regimine

started to work, but I have recently suffered ramifications of the

Remicade. To that end, I lost some strength in my hands and started

to have tremors in my hands. I also got a red bump on my arm, which

ended up turning into seven painful pumps up and down my arm in an

almost straight line.

The doctors were perplexed, which is typical for me, and thought that

I was suffering from the Remicade. Those are neurological problems,

infection, or lymphoma. They wanted to do a biopsy, but they decided

not to since my PG is finally getting better. The answer was to

treat for infection with Bacatrim antibiotic, of which I have been on

for two weeks.

I saw the doctors last week, and the bumps keep changing in size,

shape, and level of pain. One doctor said that it could be EN. At

this point, they are still working on infection, but EN is the next

thing to look into. The bumps are still there and are looking more

like bruises now instead of red welts.

I don't know if or when this will ever end, but I continue to

struggle through it. Thankfully, the wounds are getting better, and

I am walking on my own. The wound care doctor is optomistic that the

wounds may be healed by July, but I keep having reservations. I just

keep plugging along and doing my best to the many curve balls that

keep being thrown my way :-)

Love,

Elaine

PG/RA (and who knows what else!)