Hello--I'm a newbie

Hello, It's nice to find a site for APS! I've had APS since my late 20's and I'm now 54. I really had a lot of problems finding a diagnosis in the late 80's. Once I had found out what it was, my 30's and 40's were ok as I was on Warfarin, and I had relatively little problems with my health except a few times that my INR dropped below 2.0. I think I have had several problems, which began when I turned 50!! My primary care doctor had left the practice and a new one came in. She was not very good at listening and had a very hard time accepting that my INR had to be between 3.0 and 4.0. Well it only took awhile before I started to have symptoms. She sent me to this hematologist, who in my opinion didn't know anything in depth about APS and he would not tell her to raise my INR range. Her exact words were that it was too dangerous and she could lose her license.....really?? Next thing I know I am not able to exercise or do yoga without being in pain. My joints ached, I couldn't climb a flight of stairs without being winded, I was exhausted beyond belief....my feet hurt, my joints ached, etc.... I finally found a rheumatologist on APLS website and went to see him....I told him that the primary care doctor would not let my INR go higher than 2.5....he agreed with me that it should be at least 3.0 to 4.0. The funny thing I do remember him saying was that the way I felt would not be affected by my INR.....really?? I really dislike it when doctors tell me that it doesn't make a difference!!! Maybe not to them as they are not feeling what I feel....doesn't it make sense that if your blood is too thick that it wouldn't get to the parts of the body that need it?? Common sense, right? Anyway, it turns out that the rheumatologist ran a bunch of tests and it turns out my complement (c3 and c4) were low....which he said was due to immune complex deposits in my kidneys....of course that rheumatologist is now gone (moved to another state) and I'm waiting to see a new rheumy. Has anyone else had problems with their kidneys? What are you doing for treatment? Has anyone found any natural treatment therapies that are working? I started Plaquinel about 2 years ago, and I do have to say it's made a difference in my tiredness but I'm still exhausted and need to rest at least one day (a whole day in bed) on the weekend in order to function.....

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  • Hi and a warm welcome. Kidneys are affected by APS. I am attaching some papers which you may find useful to take to your Dr.

    ndt.oxfordjournals.org/cont...

    bmcmedicine.biomedcentral.c...

  • Good and informative thanks for sharing.

  • Hi and a warm welcome.

    Where are you from?

    Dave

  • I'm sorry, I forgot to mention that I live in US. I live in Massachusetts but work in Rhode Island. It's very difficult to find doctors here that are informed on Antiphospholipid Antibody Syndrome. It's easier for me to say that it's like Lupus....which my ex-rheumatologist said it's pretty much like it...I'm just ANA negative.....but our symptoms are pretty much same....

  • HI, you will find quite a few from the USA on here, and people are only to willing too swap information about decent doctors who for instance understand the INR with patients who have Hughes Syndrome/APS. Welcome by the way. MaryF

  • Thank you! I hope I can meet some people who are helpful leading me to find answers....I am pretty fed up with our healthcare in this country. I am trying to seek alternatives to the drugs we are put on. I'd love it if someone could tell me about a doctor who know APS and is open minded using alternative and traditional methods....

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