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Re: sweet's syndrome

Re: sweet's syndrome

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Posted by Lyn Purcell on September 03, 2000 at 19:15:41:

In Reply to: Re: sweet's syndrome posted by PK on August 18, 2000 at 19:45:13:

: : 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.

My husband Graeme has Sweets he has been on the ususal medication, pred and dapsone, which are having no effect whatsoever, his body is slowly being taken over by this horrible disease, the problem is no body knows what causes it or what cures it, l have tried calamine, vinegar, iodine and body washes to try and help get rid of the itches and soreness, but nothing is working, Can anybody help us, my husband also has neuropathy but apparently this is not the cause.
thank you for your time
Lyn Purcell

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