We are new to this site and hope to fi... - Sweet's Syndrome UK

Sweet's Syndrome UK

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We are new to this site and hope to find some answers thru researching. My husband was diagnosed in 2010 after extensive testing.

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We live in British Columbia, Canada and at this point in time have heard of only 1 other case here. At our local Hospital he is "N of 1". There is no expert and it just keeps getting worse. I believe it was triggered by a very bad cold/flu in March 2010. At first it looked like the measles and it didn't help that there was a measles epidemic at the time. We had been down in Arizona where they have "Arizona Valley Fever" which has similarities. I am sure it started before we left on the trip. He has been put through the wringer. Everybody wants to try something different. The only drug that has been effected is Prednisone. Unfortunately the side effects haven't been so good. His reactions have been mild with spots and reactions to needles (big red welts) to severe - some have put him in the hospital ie. flu shot - took 5 days to get it under control, longest stay was 5 weeks. We are finding his organs are being effected, roof of his mouth, his eyes, it just doesn't end. In May he had a procedure done to close a PFO hole) in his heart. It seemed to trigger his Sweets and became very ill and had a 5 day stay before he was stabilized. Heparin was the culprit. It presents itself as mimicking Leukemia. That's when I His WIFE decided it was time to take control. He has 9 specialists that are actively dealing with him. He is too complicated for our family doctor to handle so the Hematologist has agreed to be the team captain I am the researcher. Thanks to info on your site regarding medications that have triggered Sweet's syndrome we are meeting with the Pharmacy at University of BC Vancouver. He currently takes Gabapentin, Clindamycin, Ranitidine. He now needs hip surgery. Caused by Sweets?? We need to figure his medications out before any surgery is performed,

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Shell567AdministratorSweet's Syndrome UK

Hi sweets2010,

I'm sorry to hear your husband has been having such a tough time.

There are numerous triggers for SS, including respiratory infection, e.g. cold or flu. Heparin can cause skin lesions, but there are no formerly reported cases of heparin triggering SS. On very rare occasions, gabapentin and clindamycin can trigger SS (you probably already know this): helpforsweetssyndromeuk.wor...

Cancer needs to be ruled out in all SS patients, particularly a group of blood disorders called myelodysplastic syndromes (your husband's haematologist has probably already been monitoring for this): helpforsweetssyndromeuk.wor...

Prednisone is the main form of treatment, but there are many others: helpforsweetssyndromeuk.wor...

" reactions to needles" - this sounds like pathergy. When the skin is damaged it can sometimes trigger the development of new skin lesions: helpforsweetssyndromeuk.wor...

SS can cause a number of different symptoms, and can sometimes affect internal organs. It's highly unlikely that your husband would need hip surgery as a result of SS: helpforsweetssyndromeuk.wor...

There is a variant of SS called histiocytoid Sweet's syndrome that can look like leukaemia cutis (infiltration of the skin with leukaemia cells): helpforsweetssyndromeuk.wor...

Hope you get some answers soon and all the best with the meeting. If you have any more questions, just ask.

Michelle. x

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