Sticky Blood-Hughes Syndrome Support
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Help At Last

Hello good people

I thought I would post today, instead of lurking as I usually do. I have sero negative APS, but have had trouble with doctors believing in the diagnosis. Meanwhile, in the almost 3 years since I had Pulmonary embolisms, I have collected a myriad of symptoms and diagnoses. I have been on Xarelto since early 2015 with no improvement, only more and more manifestation of the APS.

I went to my pc Dr. about 5 weeks ago out of sheer desperation - I hardly left the house as I could not walk or stand for more than 5 minutes at a time. I was in constant pain, even being woken at night with it and was having 2 - 3 migraines EVERY week. He completely surprised my hubby and I by suggesting a two week trial of comaudin.

I had an instant improvement with the migraines, I had one about a week after starting warfarin and NONE since that one! Why didn't someone tell me about that 35 years ago. I have had chronic migraine all my adult life. My doctor said he would aim for an INR of about 2.5. I said "3.5". I keep pushing him and he now agrees to an INR of 3.5, I was at 2.9 at my blood test last week.

My migraines are gone, a lot of fatigue has gone, brain fog is not as bad, but the joint pains are still horrendous. I have developed RA in both hips and both knees. My dr now really believes in my APS status and is very encouraged by my improvement and will keep me on the comaudin.

At last, I see some light at the end of the tunnel.

Keep well everyone.

Di.

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Happy you have found some relief, hope it will continue to get better and better. I’m glad you have come out of the lurk position, welcome out, Cindy

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Hello fellow lurker!

I sometimes post but not often though I avidly read everyone’s comments.

Really glad you are experiencing some relief, brilliant when there is a breakthrough. I despair at how long it can take for a correct diagnosis, so many, including myself, share similar stories.

Insisting on an INR of 3.5 was very brave and absolutely right (I had a PE when kept at 2.5) so I wanted to say well done you. I only wish I had that information at the time.

All best wishes

Julie

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Hi suntap!

Wonderful that one more of us feel quite better on Warfarin! Do not ever let any Doctor take you off that drug without other competible anticoagulation. I think that Warfarin is your drug.

I have experienced that also 6 years ago and I now selftest and have an INR of 4.0.

Hope your Doctor who sounds nice and proactive understands autoimmun illnesses otherwise I think you should try to find a Specialist as we always say on this site. We know how important that Specialist is for our well-being.

Try to keep your bloodpressure controlled as you have had Pulmonary Embolies.

Best wishes from Kerstin in Stockholm

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My Dr is only in general practice and whilst he knew of ApS, he is no way a specialist. I have given him lots of information I have picked up from this forum, as well as taking him articles I have printed out. That is why he and other doctors i have seen have been reluctant to change me to warfarin & resists the need for a high INR.

Thanks for the tip about the blood pressure.

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Wow! I’m surprised doc didn’t trial you LMWH first. That’s the norm- but no matter- this is working!!!!!

I hope you feel you will ,” get your life back.”

I hope you will perhaps read my last post on plavix addition in addition to my warfarin ( Coumadin) not that it applies to you, but Kerstin, Kelly ( Yllek from England) and myself were discussing keeping INR steady with greens/ diet/ and lodging notes about diet, etc. - toward end of lengthy threads. The post was maybe 4 days ago. This particular post wound up having a lot of unexpected discussion in it the title of post would not have alerted you to.

I’m glad you’ve been “ lurking” . I’m sure you’ve learned a lot.

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Yes, learning a lot from all you good people. I look forward to the email in my inbox every day.

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I am very happy for you. Many doctors are tied to the "physical evidence" tests and reject "sero-negative." Your GPis to be commended.

With good wishes,

Ros

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Hi, your story is sadly familiar - good on you for escaping and finding a way to educate your GP, while not affending!

Your GP although cautious has looked outside the box and listened to you - amazing, high praise to him!!

Hopefully now you can improve and get some control and qualilty in your life. Big hug xxx

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Hi there, I was sero negative for years for both Lupus and Hughes Syndrome/APS. These days I regularly pass the tests. Make sure your very useful sounding doctor checks your vitamin D, B12 and Iron plus your Thyroid as if any of these are out of range, you will feel considerably worse.

MaryF

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It is always so gratifying to read an example of how this site, and especially our administrators, can make such positive impact in the world! Glad you’ve been able to reach your life preserver! Hooray for you!

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