aps positive and feeling like an old man I am 37

hi all I had a stroke 3 years ago and I was tested several times over a period of months and I tested positive for anti phospholipid antibodies on each occasion but did not test positive for anti cardiolipin but do have the syndrome I was put on warfarin for life but lately I have been getting very tired sometimes sleeping more than 12-13hrs a day I have also been getting joint pain in various parts of my body but mainly in my knuckles and fingers and pins and needles when sitting down for a while also headaches which come and go in a couple of minutes and dizzy spells and just feel weak as a kitten most of the time . my inr is within target range but still I have these symptoms I have visited my doctors and he was dismissive of my symptoms I don't know where to turn I really need help when I had the stroke I had a different doc and he also was dismissive and both of them didn't have a clue what hughes syndrome was I cant cope anymore could it be the warfarin that is doing me in or is it the syndrome and if so what can I do about it am I going to be like this forever because if I am the I will take myself to the knackers yard myself lol

16 Replies

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  • Your story is not unusual! What is your INR? Most people here on Warfarin are 3-3.5 to control symptoms. Some doctors are reluctant to up the dose to be in therapeutic range for APS. Where are you from? The Admin on here can point you in the best direction as far as having an APS specialist to look after you.

    Don't go to the knackers yard just yet!! There is help available but you need the right doctor to look after you.

  • I tend to be much more tired , and have more brain fogs and fatigue when my inr is not in range. It is possible that your therapeutic range is too low. You should talk with your hematologist or you APS specialist about it.

    Another thing is that I receive Provigil which is a drug used against fatigue. In my case it helps a lot

  • Feel exactley the same . Could sleep 12 hours every night no problem . Aches and pains come and go making life miserable . On hydrochlorquinne but not much have changed

  • Morning I know that feeling, hope your GP asked you to have some blood tests, I know when I am anaemic I feel more like than than I usually do also as Mary says you will need to be tested for other things too

  • Hi you need to check your vitamin d vitamin b12 folate and iron levels. If any of those are low you will feel lousy. My vitamin d was very low now it great since I supplemented. I live in New York so not a lot of sunshine in winter. Make sure you get blood tested for deficiencies before you supplement. Hope you feel better soon.

  • Hi, Hughes syndrome can go hand in hand with an autoimmune disorder, mine partnered up with Behçet's disease. It might be worth being referred to a rheumatologist. Before you ask for a referral or see a rheumatologist write down all your symptoms no matter how unconnected you feel they might be, if you do have an autoimmune disease they are difficult to diagnose so a full list of symptoms is helpful, things like dry eyes, ulcers, rashes, digestive tract issues, irritable bowel, cartilage pain, hair loss, numbness, weakness can all point a doctor in the right direction.

    If you live in the Midlands or nearby I can recommend the team at City Hospital Birmingham, Prof Gordon who runs the team also has an interest in Hughes. Good luck

  • Hello Colin and welcome.

    What you are going through is similar to many of us on this forum. I too have aches and pains, in muscles and joints, wrist, fingers etc, that come and go, sometimes changing over a few hours.

    If you have two positive tests, 12 weeks apart, then that is considered a positive diagnosis of APS/Hughes Syndrome. Please familiarise yourself with the charity's web site:

    hughes-syndrome.org

    May I please ask you where you are from, as this will help others on here to help you?

    If you are in the UK then please have a look at this section of the charity's web site, where you will find a directory of APS specialists in the UK:

    hughes-syndrome.org/self-he...

    As one of our members has also said, many people with APS/Hughes Syndrome, who are on Warfarin, need to have a higher INR than is common with patients taking Warfarin for other conditions. When I was on Warfarin I needed an INR around 4.0 to feel reasonably well. I am now on Frgamin, which does not require INR testing as it works in a different way.

    Let us know how you get on but please do push to get an APS specialist consultant to manage your condition.

    Best wishes.

    Dave

  • Hi and welcome to our friendly site!

    I agree with what Dave has told you already.

    You need to get a Specialist of this illness! Read about APS as much as you can Knowledge is power for us!

    Best wishes from Kerstin in Stockholm

  • Hello, Gina here from the States. Protecting the body against invaders is, of course, a high priority bodily fuction and so, when the immune systems goes on the attack it can consume vast amounts of a body's energy. In the case of autoimmunity when our immune systems are bonkers, we often feel hyper-exhausted all the time until we find the diagnoses and treatments to quiet immune activity.

    Your post certainly resonates with me as I too went from a quiet active hiker, cyclist and reader to sleeping over 12 hours a day and nodding off every time I picked up a book.

    But my doctors dismissed my symptoms. My INR was at the 2-3 level they thought was therapeutic and so they explained that my constant exhaustion - and joint pain - must be mental.

    But Hughes is still misunderstood by most docs - even most hematologists and rheumatologists. A high INR scares them because they dont realize that treating sticky Blood requires more aggression then just treating for a sticky spot, such as a heart valve, in the circulatory system. In my case, the exhaustion and hyper high antibody test levels was due to gluten sensitivity. I was eating something I was allergic to several times a day! I went gluten free and my energy returned, i can read books again, my thinking is sharper and ( after a hip replacement) i can manage other joint pain with exercise and physical therapy. I hiked most of The West Higjland Way earlier this month ( I dont handle heat well and so I had to shorten some days due to Scotland's heat wave.) 6 weeks after going gluten free my IgG antibodies fell from sky high to near normal. my IgM and IgA fell from moderatly high to normal. and even though my gluten tolerance test was negative, every doctor who saw the dramatic blood test changes congratulated me on trying the diet and added, " I dont care whar the gluten tolerance tests show --stay on the diet! Your body doesnt like gluten!)

    I share my story not to say you too are gluten sensitive - though you may be?-- but to illustrate to you how convoluted our immune systems can be and how frustrating finding answers can be. Do read the charity web site and you might find more hints in the books by Dr Hughes as well as Thackery's "Sticky Blood Explained."

    Good luck as you continue your search. Do check back as we all benefit my sharing the clues from our own diagnostic and treatment detective stories.

  • Hi Gina,

    Why do you not write a book yourself - till then we can be glad to have you on our site!

    Glad you are back!

    Kerstin

  • Well said Gina.

    Dave x

  • I feel the same way all the time. I don't get as much joint pain in ky hands and wrists. My pains are in my ankles and toes, knees, hips, lower back and neck. Shoulder too. Lol, pretty much everywhere. I take pain medication that helps. I am on a bunch of medication, as I have other health issues as well, ptsd is a big one. I hope you find a dr that knows more about APS.

  • thank you for the replies guys and gals I am from Liverpool uk I do have another condition which is factor v hetregonsyus (spelling is wrong its a bugger to get right lol) which is hereditary I think I may try the gluten free diet it cant hurt to try

  • HI you do need to be under a specialist for your Hughes Syndrome/APS Here are some from your area;

    Professor Imelda Bates Consultant Haematologists, Royal Liverpool Hospital

    and a Rheumatologist in the North West: Dr Rachel Gorodkin Consultant Rheumatologist, Department of Rheumatology, Manchester Royal Infirmary.

    I hope you get some answers

    MaryF

  • Just to say it's not all over yet! I too have aps. Could sleep 24 hrs if left. But I have a job and run around 6/8 hrs every day. It's just to let you know been there done that. 2 strokes and I have the most energy of all the other staff. But it's taken an awful long time 3 yrs to be exact.a few changes of different anti cogulants am now on xeralto no weekly visits to docs not a clue about inr anymore as its not tested. But somethings going right. My doc is fantastic he googles everything on his computer. And interested about things he's unsure of. Change your doc. Wishing you well and offering you lots of hope and goodwill it does get better x

  • Little to add to the expertise already expressed, except to say that when I was first diagnosed (15 years ago) warfarin alone wasn't working for me either. Dr. Hughes suggested adding a 81mg. aspirin/day and adjusting the warfarin accordingly. Every single case seems to be different, but that helped me a lot. Good luck.

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