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Re: sweet's syndrome

Re: sweet's syndrome

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Posted by PK on August 18, 2000 at 19:45:13:

In Reply to: Re: sweet's syndrome posted by Annamarie on December 31, 1999 at 20:18:45:

: I wasn't dx with spider bites, but I have heard of others who have from Onelist notes on Sweet's. I've had lots of blood tests, but not marrow "yet". Can't get sweet's under control with Pred yet., We'll try something new next week. I've had Sweet's diagnosis for 3 months now, that's all. Happy New Year
: : Please help on some info for me: Were any of you first
: : diagnosed as having been bitten by a Brown Recluse
: : Spider? And found out sometime latter (after many
: : supposed bites) it was Sweet's Syndrome?

: : Also, any had bone marrow procedure to help? And if so, any good results?
: : Please help. very confused.
: : thanks, Cathey A.

Reply
Dear Cathey A.
I have never spoken to anyone else with Sweets.
I asked my hematologist just a couple of weeks
ago if he knew or had any patients with Sweets.
He said, "yes, four or five, ...............
but they're all dead!
Not so encouraging but he sees all with leukemia
except me :o).
He was doing a bone marrow biopsy as he spoke
these words.
I have had Sweets for about 12? years.
I take dapsone and potassium iodide daily.
The addition of the potassium iodide helped the
most and brought the lesions and accompanying migraine headaches pretty much under control.
The Dr. always tried to give me prednisone but it
did not help much and I gained about 20 pounds
with every cycle of it.
I'd like to hear how you are doing!?
It took 4 years and several dermatological symposiums for mine to be diagnosed.(at UW hospital) There was VERY little information availible, even in the medical library.
I found this site today as I am trying to ecucate
my new primary care physician and it has good accurate information. See link below.




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