Sticky Blood-Hughes Syndrome Support
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Promising Appt w/GP

I feel hopeful tonight after today's appointment with my GP. He seemed very open to learning about APS and was willing to not just listen to my research based suggestions regarding treatment, but implement a couple of them today. One being to increase my warfarin to get me into a therapeutic range sooner (at only 105 pounds he's been VERY cautious with my dosing but it's time to stop monkeying around) and the other being to draw blood to compare the lab results with the Coagucheck XS they normally check my INR with. He was also surprisingky open to me testing at home and said he already has one patient who does so (we'll look into this more in a couple months to see if insurance will help).

Since my appointment was limited to 20 minutes, I left him with a couple fact sheets from the hughes syndrome website along with a detailed history of my past and current conditions/symptoms. I will see him again in a couple weeks.

It was nice to feel like he actually heard me and is willing to work together to improve my quality of life. Dealing with both the clotting and neurological symptoms now instead of waiting for my rheumatologist to just tell him what to do in three months. All in all- quite a relief as I was beginning to think I needed to switch docs but did NOT want to.

I can't thanj you all enough for your support. This forum and the website have helped immensely in having the information and courage needed to push for what I feel I need. Speaking up for my kids' or even husbands' needs is much easier than doing so for myself.

12 Replies

Nice to have some good news, sounds like a really good Doctor

Really pleased for you


Great news.

Where are you from?



Montana state in the U.S.


Congratulations! It is wonderful when you have a GP who listens and works with you. I had one wonderful GP -- and then she was in a car accident and, after recovery (Thank God!) she had to move into the regular hours of hospitology. Then, years later, I found another wonderful GP. And then she had (so happy for her!) a second child and moved, again, to hospitology so she would have time to be the mom she wanted to be.

So, I can totally relate to your wish to stick with a GP who cares and listens! -- in fact, I'm a bit jealous.

Happy new year!


Thanks all! Happy New Year!


This condition means that you do unfortunately have to become your own advocate and if you can learn about the condition and work with someone it will be in your interest in the long run. Its the balance of diplomatically suggesting but at the same time being quite firm! So glad things are looking up for you.

Happy New Year to you too. x

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A positive post on which to end the year on. Great result.

Let's hope in 2015 we see more doctors acknowledging that many Hughes patients do actually know a great deal about their condition and its vagiaries, (formally recognised and documented or not), and are willing to learn with their patients.

Happy New Year one and all.


Turns out having my INR tested by veinous blood draw was worthwhile. According to the blood run at the lab my INR was 1.5 while the Coagucheck XS the clinic normally uses said it was 2.0 on the same day (done within 5 minutes of one another).

As a side note, I either have cellulitis or a severe cellulitis-like reaction after receiving my 3rd dose of pneumococal vaccine. Nurse practitioner put me on antibiotics today. She said it is cellulitis but I still wonder if it isn't just an extreme reaction since this was my 3rd time getting it. Since my spleen doesn't function (shrivelled up and "died" due to lack of blood flow -likely from arterial clot), the doctors here reccomend pneumonia vaccine every five years. Since I've had this reaction I looked up the research and it doesn't look like more than 2 doses are reccomended. Does anyone have experience with cellulitis after vaccination or having 3+ pneumonia vaccines?


I selftest with a Coagucheck XS since more than two years now.

I have Lupus Anticoagulant and it was said that I can not use selftesting but i do and my doctors and coagulation clinic knows about it and help me.

At the start I had to doublecheque my blood within 2 -3 hours at the lab and with the machine. I did that for several months and we discovered that when I had a high INR Reading the discrepence was more between the two figures. If I had a low reading for ex 2.8 at the lab, I had 0,7 - 0.8 higher on the machine.

If I had a high reading at the lab, for ex 4.1, I had 5.5 at the machine. I have made notes of all my Readings and I read from the book now. So a high INR-reading gives a higher difference between the two figures.

Now I cheques my blood every second day and only go to the lab and clinic every second or third month.

Are you Lupus Anticoagulant? I do not know it it is a discrepence between the two without LA. I guess not.

I feel fine when my INR is around 4.3 - 4.7 on the machine. It is then 3.1 - 3.5 at the lab. Hope you understand me. It is important the the clinic knows about this.

Best from Kerstin in Stockholm


I must add that it may be individual but you say that it is a discrepence with 0,5 when you have that very low reading. That is why I thought that you are Lupus Anticoagulant.

Take care.



That's exactly right Kerstin. I am positive for LA. Will be talking with my doc about continuing to do veinous blood tests along with the coagucheck for the next 2-3 months, as far asbi can tell the recommendations are to check both simultaneously fir the first 3 months and then every 3 months after that so that we know what the difference is.


Good, very good! It would be interesting to hear how it goes for you. My Hematologist gives me enough strips which is important in my case. Hope your doc will continue to be so cooperative.



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