Sticky Blood-Hughes Syndrome Support
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Rheumatologist Update

I've been trying to catch up IRL with everything that happened during my appointment and I wanted to thank all of you for your help and guidance.

Dr. Collins has started me on Hydroxychloroquine 200mg twice a day and written a recommendation as well as reasoning for my hematologist to raise my target INR to between 3.5 and 4. I took my first two doses the same day (after sticker shock at the price of a generic drug even with insurance) and can honestly say I didn't realize how much pain and soreness I was experiencing, until it started to go away. He suspects my ANA test did not reveal the fact that I have Lupus, which he strongly suspects and is beginning a process of elimination to confirm.

I have had to call my hematologist myself as my INR has dipped down below my therapeutic range (self tested last night), my dosage has been increased from 7.5 to 8 until Wed when I will have a venous draw done. I didn't think Hydroxychloroquine was supposed to effect those levels but it's been the only real change.

After looking at my family history he was shocked the number of clots and PE's in my family as well as the history of miscarriages and other autoimmune conditions were not noted in my records. He has said he is making calls to several of the groups he knows are conducting studies related to Hughes disease and has actually heard Dr. Hughes speak, knew of his work and was read up on the condition. It's a small office where he seems to reserve about an hour for each patient so.. I have hope.

In the in between I've decided to handle this the way I would a project at work and make sure all required parties have all required information.

I can only speak for the USA but our medical records are still far from portable from doctor to doctor with updates and histories coming over incomplete or not at all and it's so much to remember. So I'm making my own portable medical record I can send to physicians and that I can update with what I am told, when medications were changed, who changed them, why, family history, deaths related to clotting disorders. Everything including who they need to contact to confirm the information and get the lab results.

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Well Done on all issues. Your Doctor sounds like a keeper. Any that are prepared to learn with you are in my opinion. And what you are doing as far as your medical "CV" is exactly what I do, along with copying any letter that I get from one specialist to any other that is treating me. They all seem to like this and Ive had no complaints so far. Taking control of your illness is in my view part of how well you manage this condition. The more proactive you are, the better it is and in most cases you get nothing but respect from the Doctors that treat you. If any are intimidated and cant be changed then it tells me that perhaps they are not a correct fit for the "team".


Great visit and great job of putting your own medical history portfolio together!


Brilliant idea for anyone with a chronic condition or who has to see different specialists.


Such a great idea! Perhaps we could collaborate on a APS/Hughes template for folks to use in collecting all their medical info.

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This is something on the agenda but difficult to put on here because of the problems with uploading anything other than links.

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INR has a template they use if this helps anyone. Cindy in NJ


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