Medications and Sweets Syndrome

[sweets2010]

My wife has become my advocate after the last episode in hospital back in May. It was just to be a 4 hr stay. I was given heparin to before the procedure to prevent clotting as one had formed where the hole in the heart was being repaired. Unfortunetly the heparin caused the Sweets to rear its ugly head and as my platlets plummeted I got worse. When this happens the doctors freak because it mimmicks leaukimia. I have had 3 bone marrow tests. I get riggers and feel so cold that I end up with so many blankets The only way to get my Sweets under control is to increase my prednisone to 50 -80 mg depending. I ended up stayin in for 4 more days and then recovery time at home. It is a scary thing to go thru. Has anybody had any similar thing happen to them.

[Shell567 Administrator Sweet's Syndrome UK]

There are no cases of SS being triggered by heparin in medical literature, and I can't recall a member of any Sweet's Syndrome UK group mentioning this. That said, cases of SS being triggered by medication are often just one off cases. In your case, a reaction to heparin and dramatic fall in platelets (heparin-induced thrombocytopenia) may have led to some kind of immune response that triggered SS. Unfortunately, there is no information available relating to this.

"I have had 3 bone marrow tests." If SS is triggered by blood cancer, this is normally detectable within 6 months of SS diagnosis.

Rigors don't tend to be associated with SS, but it can happen.

What you experienced sounds terrifying. If anyone has experienced anything similar, hopefully they'll get back to you.

If I come across anything that's relevant to your situation, I'll let you know.

Michelle.

[sweets2010 in reply to Shell567]

Hello. I saw the hematologist yesterday and she isn't sure if the heparin was the root cause of the flareup. Today I am going to our local university UBC vancouver. They have a program thru the teaching and research Pharmaceuical building. They help people like me with complex medical conditions. The specialist gave me a note to pass on to them about heparin. I am very curious as to what or how they can help me.

[Shell567 Administrator Sweet's Syndrome UK in reply to sweets2010]

Thanks for the update, sweets2010. I hope they can give you some answers.

[sweets2010 in reply to Shell567]

Thank you for all the info. I now have added heparin as an allergy on my medicalert bracelet. My hematologist suggest this and also alternatives to heparin. She also said we should add to the medicalert TO PROCEED WITH CAUTION.

[Shell567 Administrator Sweet's Syndrome UK in reply to sweets2010]

Glad to hear that you finally have an answer, sweets2010. Once again, thank you for the update.