Sticky Blood-Hughes Syndrome Support
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Looking to see if anyone else lives in Boston/Providence Area?

Is there anyone on this forum who happens to live in Boston area or Providence area? I would love to know what they are doing to treat APS and who they see for doctors....I had a fabulous Rheumatologist who left medicine and now I'm pretty much fending for myself. I keep asking myself why I can't seem to find anyone knowledgeable enough about our illness....

5 Replies

Its always upsetting when you lose a well trusted medical advisor, especially if they have treated you for years. Its a shame that your Rheumatologist didn't recommend you to someone else before they left as normally like minded people attract the same types. Is there any way you can contact the old office and see if they left any recommendations for their patients?


Thanks for your reply. My rheumatologist seemed to be the only one around who really knew about APS. Unfortunately, he honestly could not recommend anyone who he really felt confident about. He gave me a name, and I went to see the new rheumatologist, who told me that I should go and have my APS followed by a hematologist....Thru my primary care doctor, I am on a Coumadin Clinic who takes orders from my Primary Care doctor, who spoke to my rheumatologist and recommended I be between 3-4. Problem is that when I'm at 3.5 and above, the clinic lowers my dose and then I end up having to go have a blood withdraw every week....and if I go on a lower dose, it drops below 3....which makes me ill.....the woman at the Coumadin clinic is working with me as best as she can but she doesn't really understand APS. I just ordered the Sticky Blood book so I told her I'd give it to her so she can hopefully have a better understanding. In the meantime, my primary care doc left and now I'm waiting for a new one...which will be tough because I'll have to educate the new doc, and now I don't have a rheumy who will back me up for the range of 3-4. I am so frustrated...You'd think living in Boston, a city known for some of the best hospitals, there would be an APS specialist around, but I am not having luck finding one. Prior to all of this, I home tested, which created more issues, using a finger stick was inaccurate and my INR fell way too low. So now I go and have a regular blood draw for accuracy. My prior primary care doctor refused to follow my rheumatologist's recommendations so even though I home tested, she would ask me to reduce my dose and told me if I did not, she would not prescribe me Coumadin any longer....'


Oh dear it is when I read stories like yours that I'm so glad we have the NHS. It may be almost bankrupt but the system is so much better than yours especially your Dr's fear of being sued being greater than their love of treating their patients properly!

I do hope you find someone especially in Boston of all places. Sometimes I think they give out the name Dr to just too many people and wonder if they are actually proper medical Dr's with years and years of training or someone that has done a complimentary course which for some reason allows them to use that title - would not be allowed over here!

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See" luluspetals11" post about" Boston APS specialist" from three years ago. Write it in search box above right


So? How did you do with @luluspetals


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