Hello. I live in California, USA and tested positive for Hughes after years of chronic symptoms including muscle/joint pain, headaches, brain fog, GI issues, fatigue, etc. I have never had a clot/stroke.
My rheumatologist recommended that I start baby aspirin as a preventative but didn't think Hughes was the cause of any of my issues.
I also see a Naturopath who is more open minded. She started me on high dose Omega 3 as a blood thinner and also Nattokinaise which is a natural supplement that has fibrinolytic properties.
I felt an immediate response to aspirin alone, but then relapsed. I added the omega 3 and the Natto and things seemed to get much better for a few months.
This past week the fatigue/headaches/fog have come back and I am just so frustrated. I feel like I'm coming down with a cold, but it never actually turns into a cold. This is how I felt before the Hughes diagnosis.
I know that blood "thinness" can fluctuate with Coumadin, but I didn't know if any of you have to titrate your meds based on physical symptoms like mine.
I appreciate any advice and/or support.
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ehc918
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Hi, a medical consultant will normally set your INR and encourage you to stay in range, there are quite a few people on here from the USA and some have found Hughes Syndrome/APS specialists who can help them. Also many of us choose to go gluten free which greatly helps with the gut issues. MaryF
Yes it can fluctuate. Earlier in the course of the disease I only needed plavix (aspirin never did anything for me). Now I need apixaban (previously lovenox) and
Plavix. At times i have needed twice daily lovenox but other times I could get by with once daily lovenox. The symptoms you describe are all common in APS and headache and brain fog often improve or even resolve on the right Anti platelet and/or anticoagulant tx
I also live in California. Hughes syndrome has affected my neurological system. I was diagnosised with APS/Hughes 20 years ago after 2 positive blood test. Then after my daughter was born I tested negative. All my Drs. said it went away even though I had many symptoms & a strong history. They kept telling me they didn't know what was going on or that I had MS. I finally was fed up because no dr. Would help me I went to London to see prof Khasmashta. He told me it never goes away & I should have been on blood thinners. A few months ago I saw Prof. Hughes. The best advice he gave me was to pay attention to your body & symptoms.
I am on Clexane injections 2x a day & my blood still gets thick & I can feel it. The headaches, muscle stiffness, cold extremities, etc....
Pay very close attention to what you eat & how you feel. Foods high in vitamin K make your blood thicker. I notice if I eat lettuce my body starts to cramp up & I feel like my legs are going a sleep.
Doctors here in the US do not know a lot about the Hughes Syndrome & they do not like to put you on blood thinners. My opinion is that if you are having this many problems you should be on warfarin or something to keep your blood thinner. You probably need to find another doctor.
I get my medication from London, so I go there every year to see prof. Hughes. He gives a letter I give my physicians here & they follow his orders.
Here's an alternative view from someone like yourself who was diagnosed 6 years ago after blood tests, but haven't had a clot or stroke. I too noticed the benefit of aspirin. I no longer need a nap in the afternoon, my toes look normal again, my fingers don't go white in the cold and hair grows on my legs again. I think you were very sensible to see a naturopath. I have seen a herbalist and taken herbal medicines and teas, and I choose to take supplements like pycnogenol (pine bark extract) and grape seed extract. I need a mug of strong coffee in the morning to energise me and yes, I do wish I had more energy! but I don't think we should take medicines like warfarin unless it is absolutely necessary. And of course it is a life saver for many people. All drugs have side effects, and many people with autoimmune conditions like ourselves are sensitive to drugs.
I have had discussions with the rheumatology and neurology consultants I see every 6 months at my local hospital about the potential benefits if I were to take warfarin and have received no encouragement and I am not going to pursue it.
It's always best to seek advice from a trained medical professional. The clotting effect of the blood can change for many reasons eg
• the weather/temperature
• diet (eating foods high in iron etc, can thicken the blood)
• drink (having enough fluids, and drinking the right fluids)
• viruses
• injuries The list goes on...............
If your not happy with what one doctor says, then it's within your rights to ask for a second opinion.
My INR fluctuates all the time, but some people find theirs pretty stable, once they are given the right medications, at the right doses.
Hope you find something that works for you soon x x
I had the same symptoms...4 years ago....I am fortunate I did not have a stroke......4 baby Aspirins
AND 200mg/Plaquenil 2x day have resulted in my feel great ....going on 4 years.....
My Rheumatologist tests my blood every 90 days.....to make sure my "sticky blood" disorder (Hughes in the UK....Primary Antiphospholipid Disorder in the US).....
I also felt better with the Aspirin for about 5 months...and then my MD added the Plaquenil + an additional
Thanks so much for the reply! So you have never had a clot/stroke/miscarriage either?
I am curious as to what your dr tests you for every 90 days...
My symptoms seemed controlled for a few months but have been back to the same old exhaustion/brain fog/groggy/dizzy and I'm trying to decide my next course of action. My naturopath is willing to prescribe Plaquenil...
Having blood tests to monitor my blood thickness would be ideal!
Thanks,
Elke
addition...felt great for 5 months on Aspirin/and then symptoms re-ocurred...THEN my MD added the Plaquenil..and I have been feeling well since then
That is so great!!! I don't know of an APS specialist near me. I have a rheumatologist but he totally blows off this diagnosis and says I have fibromyalgia and that there is no cure. I told him about my positive response to aspirin and he blew it off as the "waxing/waning" nature of fibro. Pffft!!!
I have a naturopath who is much more open minded but is not overly familiar with this disease, but she helps me a lot and is willing to add the Plaquenil if need be.
Might I ask what blood tests do they do to check the "stickiness" of your blood? I tested positive for the cardiolipin antibody but haven't had any tests since.
I am curious to know what labs would be appropriate for monitoring purposes...all the clotting factors? Can they test fibrin levels? Viscosity?
I recommend finding another MD....look on the
APSFA.ORG WEBSITE AND FIND AN MD...lots of ignorance re: APS...MD
hello, if your rheumatologist thinks that pain/headache/brain fog/fatigue are not related to APS, then your rheumatologist is not familiar with APS, because these are common symptoms. I live in CA too, and I spent many years bouncing from Dr to Dr and not being helped. I had decided to stop seeing doctors and let nature take it's course, because fighting for adequate medical care was just too much for me. I was too sick to do it. Then by accident I discovered Dr Neuwelt in San Leandro. He is a professor at UCSF and is researching APS and trying some new things. He is also kind and a good listener. He will never doubt you or dismiss you. He will not 'discount' your symptoms, as many Drs do.
If you still have symptoms while on aspirin, then I think you should ask a Dr about coumadin or heparin. Blood thinners are not just for people who have had blood clots. If your symptoms are affecting the quality of your life, and blood thinners can control your symptoms, then a good Dr should be willing to discuss the risks and benefits with you, so that YOU can decide if you want to try it.
Good luck.
gratefully APS was diagnosed BEFORE stroke, clot,miscarrage
Thought I had Lyme Disease....and found DR. Gaito ...known to be "Lyme Literate"...
great info.....Lyme epidemic reaches to CA.
Not sure what tests are what so I am copying Laboratory bill.(some are related to Lyme tested 1X/year)) I am scheduled to see Dr. Gaito in a few weeks....if you need info I can ask.
"Comp Metabolic Panel--CBC (includes DIF-PLT) --
-ESR Westergren
Anachoice(TM) Cascading Reflex
ANA Titer
C-Reactive Protein
Cardiolipin Antibody
DNA(DS)ABS
Lyme Disease AB W/RFX IGG IGM
best of luck
LYME DISEASE INFO.......Dr. says if we are "genetically" inclined to have APS a serious infection/illness can
"turn on" the autoimmune process ie APS or other Autoimmune Disorders
As awful as I feel lately since this relapse, I am trying to be grateful that I haven't thrown a clot. But it's still hard. These past few months have given me a glimpse of physical health that i haven't had in years. And to have it go away and not know why is devastating.
As I sit here I am SO woozy/groggy/dizzy/tired/foggy. Ugh.
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