New here, have "mild" APS?

Hello. I'm not sure if this is the right place for me. I have been dealing with chronic fatigue issues since 2006. Fatigue, brain fog, muscle and joint pain, etc. It started as pain, but has progressed and I am now on medical leave.

August 4th had a visit with the rheumatologist who did a complete work up looking for lupus or RA. I tested positive for APS and he told me to take a baby aspirin. He also told me I have "fibromyalgia" which to me isn't a diagnosis but rather a collection of symptoms.

Anyway. Soon after diagnosis I went online and learned a little about APS. I found the site in the UK which described "mild" symptoms that fit me to a "T". I have never had a major thromboembolic event. I've never been pregnant and don't plan to be.

I started taking 325mg aspirin (just to jump start things) and within a few days my headaches were gone and my thinking felt clear. After a week I decreased to the recommended 81mg. I then relapsed. Increased back to 325 last Friday and still feel like garbage.

I have had THE most thorough work up over the years. Neuro, cardio, GI, food intolerance, stool testing, micronutrient testing, tons of specialty labs, genetic screens, viral, rheumatology, you name it.

I guess my question is...is there anybody else here with a similar story?

43 Replies

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  • Hi, I am glad you have had a diagnosis, but please be aware that often with Hughes Syndrome, Thyroid issues come along, and often get passed off as 'Fibro' due to how narrow the banding of the tests are and how unreliable they are. Also some of us have other autoimmune diseases and often Sjogrens Disease. Professor Hughes often writes about the trio of disease, Hughes Syndrome, Sjogrens Disease and Thyroid problems. Please familiarize yourself with our charity website: hughes-syndrome.org/

    Through the charity you can purchase some pretty useful books which can help a lot, many of us have read them and found this to be beneficial.

    Out of interest where are you located?

    MaryF

  • Hi and welcome.

    You are in the right place here.

    I second what my colleague Mary has said already.

    Dave

  • I live in the US (California) and have had super in depth thyroid testing which has been ruled out (my naturopathic dr specializes in this- t3, t4, free t3/4, reverse t3, autoantibodies, adrenal) as well as screenings for all other autoimmune issues. I have immune dysfunction with relation to a chronic, persistent viral infection (CMV- mono type virus) that maybe is what stirred all of this up? I don't know. I am taking Valcyte for this.

    I have read through some of these posts and I hear talk of Hughes specialists...I don't think we have those here in the states. Wouldn't a rheumatologist handle this disease?

    I truly think my rheumatologist thinks this was an incidental finding and put me on aspirin just in case. But from the Hughes Syndrome website, the "mild" form fits my symptoms so exact, and the theory of hypo perfusion due to "sticky blood" makes so much sense for my cognitive issues (as well as joint pain w/o swelling).

    Thank you two for your replies and I look forward to any other confirmed cases of "mild" forms of this disease.

  • Glad to hear your Thyroid has been so well checked. Others on here from USA will give you some more local information with various doctors/consultants they see, and also there are some contacts on here: apsaction.org/

    MaryF

  • Yes!!!! My daughter is 21. At 14 she started getting viral symptoms, migraine and severe fatigue - this progressed to dizziness, brain fog, nausea and vomiting, horrendous nerve pain, joint pain etc etc. I dragged her from one doctor to another, collecting diagnoses of 'lazy teenager", functional neuropathy, CFS, fibromyalgia, ehlers- danlos, P.O.T.S, etc but she was 'atypical' and none explained all of her symptoms. Finally realised they had forgotten to test her for Lupus so Hadham blood test in Feb this year - negative, but positive for this "weird" anticoagulant.... ;-) Went to the Lupus centre in London and was re-tested - another positive, but for a different APS test this timetable . Disappointedly the doctor we saw said at the time it probably wasn't significant, to have another test and if it was also positive to take Aspirin. Had 3rd test - negative - GP said definitely not APS. Luckily I am stubborn and with the support of those here made an appointment to see Prof Hughes. He made a quick and unequivocal diagnosis of APS and Sjorens - no question, no fuss, clear cut - explains ALL her symptoms, even the weird ones we didn't mention. She doesn't tolerate aspirin so has been put on plain and plaquinel (? Sorry if misspelt!). So in answer to your question: yes, we have and from what Prof Hughes said so have many many others. A key sign is migraine - can't remember if you mentioned this, but also fibromyalgia. It is hard and a long wait to see Prof Hughes, and I guess there are other good APS doctor's out there but if, like us, you have been fobbed off or told to "learn to live with it", or simply good doctors who couldn't help, then opting to go and see and put your health and sanity in the hands of yet another is a very scary prospect - and we found Prof Hughes amazing, patient, kind... And importantly, he said - it helps to have a positive test but is not essential, and ONE POSITIVE TEST IS enough for a diagnosis and treatment. Sorry this is so long but please take heart, find out all you can, stay on here because these guys are fantastic, and if there is any way you can, I would thoroughly recommend taking a trip to see Prof. Hughes. Good luck and take care x

  • Hi Floss. At age 12 I had the first of 7 diagnosed cases of mono. If you search my recent posts you will find that I recapped my endless mono adventure last week. APS wasnt described in 1967, and though my physician Father was sure he had, and treated himself for, lupus, he himself had had his symptoms fobbed off so often that he saw no point in trying yet another doctor when he could treat himself. (. By the way, lupus was not acknowledged in the States as a real for sure, non-" hysterical" disease until 1952.)

    Sympathies, but it seems your daughter is on the right track.

  • Is butterfly your daughter or are these just 2 super similar cases?

    Cytomegalovirus (CMV) has been implicated in cases of mono. This is the virus I keep testing positive for, which is abnormal as it's supposed to be a "once and done" like chicken pox.

    I just tested IgM positive at a low level for cardiolipin antibodies, but my dr says that's enough for an autoimmune diagnosis.

    How long free treatment did your daughter feel better? I had a few good days initially after starting, but then I "lost it". All told it's probably been 3 weeks on aspirin and I just started another blood thinner yesterday.

    My heart goes out to you for the battle you have fought, but it also applauds you for the same! Your belief in and love for your daughter is clear.

  • No, I'm not her daughter! Haha obviously just similar cases! Heparin made me feel great after 5 days, I had a bit of a relapse when I stopped those to go on clopidogrel and plaquenil, and still unsure whether the dose is right as it's a bit up and down

  • I'm glad you aren't her daughter solely based on the fact that it makes me feel better knowing there are more cases like mine!!!

  • Hi there

    I had a lady in my support group who had never had a thrombotic event, but had APS. She did really well on aspirin only.

    Good luck.

  • I take a baby aspirin 75mg every day and have been told by my rheumatology consultant that taking a stronger dose would not benefit me or make me feel better. 75mg is the recommended dose for Hughes Syndrome and taking a larger dose would risk irritating your stomach and causing internal bleeding.

  • Thank you so much for your reply. I am taking 81mg baby aspirin along with a natural blood thinner.

    I am so impatient I just want to feel better!

  • Hi there,

    I also think this is the right place for you.

    I guess several on here have started their APS like I did but anyway I tell you my story;

    I had a TIA and started 75 mg baby-Aspirin (I am from Sweden). I was without symptoms for 4 years. Had an operation for Hyperparatyreodos. Got worse and the symptoms returned. They tried with the double dose 160 mg. No change. In 2011 I agreed to start warfarin. I did not think it could help me. Almost at once most of the neurological symptoms disappeared.

    It is a very short time you have been on Aspirin (with the changes). The double dose did not have any effect on me. I can tell you that.

    Best wishes from Kerstin

  • Thank you so much for sharing your story.

    Feeling good for a few days and then losing it was devastating. Made me think it was all in my head or a placebo effect, or that maybe this APS diagnosis was an incidental finding and not actually causing symptoms.

    Could you describe your neurological symptoms?

    I get headaches, lightheaded/dizzy, memory, brain fog. These are probably my worst symptoms along with anxiety and depression.

    Elke

  • I will try. First of all you must know that these symptoms you feel are real not in your imagination. We have all got through that feelings.

    It started in 96 with "eyemigraine" with Aura. In 2000 after a flight to Mexico I fell forward without able to reach out my hands. Hurt my face. Another time when driving I felt numb on the right side of the mouth. Happened also in hands and arms. I have sold my car.

    In 2002 Could not feel the right side of my arm, face even the right side of the tongue. That was a TIA. I got 75 mg of Baby-Aspirin and the symptoms disappeared for 4 years. I got a sort of dizziness that started with the TIA. I had also got Tinnitus. Baby-Aspirin did not help these two symptoms.

    I have been tested positive for all antibodies there are. Also very high antibodies.

    I was then operated for Hyperparatyreodosis and after that the symtoms returned. Even the same day! The Aura returned. A sort of doublevision like looking in a kaleidioscope. When I walked in the park I god a very sudden Vertigo (Everything was spinning to the left). It took around 5 minutes. Very frightening. I had to hold on to something like a tree or something else.

    Then this thing with my right eye. The lower part of half of the Eye was quite grey. It took about 5 - 10 minutes perhaps and then I could see again. No headache. But I had sometimes stubbing headache on the right side of the head or at the back for a couple of minutes.

    When i got warfarin in 2011 all these symtoms disappeared. Tinnitus and the diffuclty to walk in a stright line I still have and I have started to have Auras sometimes.

    My memory was also awful before warfarin. I was not sure if my parents were dead. Took one hour. Everything was unreal.

    The last and second time it took half an hour and then i was not suré what occupation my youngest daughter had. At the same time I could take time and talk to a friend. Like two Worlds. Very frightening. This happened only twice. This is gone thank God.

    Hope you can understand my English!

    That was a long one.

    Kerstin

  • You did a great job and I understood everything!!!

    I'm glad you are better. Living with a chronic mystery illness, coupled with doctors telling us we are basically crazy, is just awful.

    I'm glad I found this forum, and even though it means others out there have suffered, it's good to know we aren't alone.

  • Yes, understanding we are not alone and not imaging things has to be told and we come from all countries!

    There are very good books available on Hughes Syndrome Foundation charity website. I prefer "Sticky Blood Explained" by Kay Thackray. You should read that book.

    Good luck with Everything.

    Kerstin

  • Hi I too have been experiencing the same symtoms , dizzy spells feel that iam going to fall forwards. I have been getting numb feeling in my tongue also tingling sensation d own leftside of my face and left hand and electric shock pain in my gum were I have no teeth as anyone experienced the electric shock pain in gums.

    Let me know.

  • Hi,

    I wonder what did your GP say? Did you have positive Beta2Glycoprotein1, Cardiolipins IgG, IgM or Lupus Anticoagulant? I

    I know you wrote last time that you had taken some more bloodsamples. It is very important that your GP treats you for the right illness! If you have got APS you should have an APS-Specialist who understands this illness.

    I know you are treated with Gabapentin and Transdermal patch buprenorphine at the moment. You told us that. How are you today?

    Best wishes from Kerstin in Stockholm

  • Hello again Kirsten I am due to see my heamatologist on the 10th of December I will keep in touch , many thanks.

  • Hallo Mojo55,

    Looking forward to that!

    I wish you Good Luck on December 10!

    Kerstin

  • Thanks Kirsten.

    I have just noticed somthing after recently having lots of muscle aches and pains in my legs and arms that the hairs on my arms have dissapeared and half way up the bottom of my legs have you had any thing like this Kirsten let me know

    Thanks.

  • i have got" pigmentpurpura" at the bottom of my legs. Yes I have lost the hair on my legs and arms. I have not thought of it but i am 70 and I am glad about it. I have a lot of hair on my head and I have noticed that my nails are growing fast nowadays like the hair on my head. I have also had" livedo reticularis" from time to time.

    I eat extra Calcium and vit D on doctors.

    Kerstin

  • Hi everyone!

    Floss, , I got diagnosed a few months ago (I'm 21) with APS due to terrible headaches, fatigue, brain fog and joint pain. As a child I suffered with severe headaches and prolonged and severe glandular fever.I had also been looking for a diagnosis for years, with doctors passing it off as a variety of different illnesses. Finally managed to see prof Hughes who did a blood test but came back negative. However he was adamant I had APS and started me on heparin injections to see how I responded. Within days I felt fantastic ! If you am get to see him, do, he was amazing. Not had a positive blood test but definitely have APS, it IS possible as apparently our tests aren't advanced enough to always show it. I'm now on aspirin and plaque nil and feel so much better, even if it did take years to get a diagnosis!

  • I am currently taking baby aspirin and a natural blood thinner called Nattokinase.

    I felt good for a few days on the 325mg aspirin but then relapsed. Due to GI issues I decreased to the 81mg.

    I am considering asking for an RX for lovenox (similar to heparin) and am curious how long you took it before changing to your current medication plan. Do you still take this?

  • I was originally due to take it for 2-3 weeks but ended up having the injections for about 6 weeks. I felt fantastic after about 5 days. I'm taking clopidogrel and plaque nil now and although I feel better than I did, the heparin was definitely more effective. I have noticed the muscles aches and tiredness more than when on heparin but still much better than on nothing. Considering making anther appointment in case he can do something with my doses or to go back on heparin. I'm not sure if it's allowed long term though?

  • I also wonder if there is a possibility that since heparin is so fast acting and the other meds take a while to take full effect maybe you will get there again!

    I have moderate IBS and I feel the aspirin has agitated it some, so maybe Plavix will be in the future for me.

    I guess I need to learn to be a little more patient but after losing almost a decade it's hard not to be!!! I'm turning 40 in a few months and still feel like a kid!

  • What a positive outcome for Butterfly212!

    You have tested positive for APS and reacted positive to Aspirin. I am not a doctor but perhaps you need something "stronger" than Aspirin today. If you only could see Professor Hughes like Butterfly 212 suggests. You can be content that you have not yet had any thromboses.

    Best of luck with what you decide. Stick to this site. Some very good books are available on Hughes Syndrome Foundation Charity website:

    I prefer "Sticky Blood explained" by Kay Thackray. That is very good.

    Kerstin

  • You might. Have a look at Kate Thackery's book, " Sticky Blood Explained.". Doctors in the States have a zeitgeist which is very resistent to acknowledging newly described autoimmune diseases.

    My Father, who I referenced above, had horrid vericose veins and DVTs. ( it was a wonder he survived WW2boot camp! The drill sgt became angry when he would pull his boots off before standing at attention so he could pour the blood out of them!) whenever the Army docs said he was a " cowardly neurotic" and that all of his vein problems, shortness of breath, chest pain, rashes-- especially when forced to stand in the sun for long periods,) and swollen spleens and liver were just unconsciouslyself-induced symptoms so he could get out of combat.

    When Father went to med school after the war he suspected he had lupus, but he was aware that med students regularly diagnose themselves with many new diseases they study. But those lupus symptoms did sould convincing . . . So, for the rest of his life, he basically, treated himself with steroids whenever a flare came. And then he heard about my endless " monos" ( my parents divorced and i had no contact with him since age 7.) arranged for me to go to Emory Clinic for a diagnosed work up. The blood work was equivocal and the treating doc said, " we don't know what you have, but you've got something because your presentation and blood work mirrors other patients we've seen. So I'm glad you're doing better," (not by much!) " but when you get sick again. Come back and we'll run more tests.". Well, my sick path of these years seemed all too familiar to Dad-minus the blood filled boots!-- so he talked to my GP back home. And THAT'S when I got the 19 day steroid treatment that finally - FINALLY!-- made me feel well.

    So yes, Dr Hughes is right when he said the patient's don't fail the test, the test fails the patients.

    Good luck!

  • How lucky for you Gina that he helped you with the steroids! I feel so sorry for the persons that have lived before us and APS was not known. In 50 years APS will be wellknown to all doctors around the World.

    I feel so sorry for my grandfather who was diagnosed with syphilis.There was a test that answered false positive for syphilis. He died in 1941 just before penicillin was introduced. But that had not helped him because he had APS and perhaps also Lupus. I have got his journal and read it, No one understood him. He did not understand himself. He died before I was born.

    Kerstin

  • Hi yes all of your story sounds a lot like a lot of people. Do you have Facebook if so there are great support groups on there. One is called "Antiphospholipid Syndrom/APS/lupus anticoagulant" I have learned a wealth of information on there along with some names of really good drs.

  • Oh my goodness oh my goodness. Then maybe I'm not crazy!!! Thank you all for your stories and your advice and your support, especially Floss and Butterfly as these stories seems so familiar.

    I cried myself to sleep last night with a horrible headache. I get them fairly frequently and even went to the ER a few weeks back they got so bad.

    Along with the physical symptoms, the psychological symptoms are equally devastating. Anxiety, depression, anger, guilt, frustration, embarassment...especially when things are still unknown.

    Unfortunately seeing professor hughes is not doable as I live in the USA and can barely afford to live. Maybe he would be willing to do a consult via email or phone or skype? I am not above knocking on anyone's door.

    Thank you also for the book references and Facebook references.

    Knowing that maybe I just need a little more time and maybe just need to change to heparin or plavix or Plaquenil...

    I feel better knowing that maybe this is the answer, or at least part of it.

    I would love to hear more about your journeys and trials and errors. I tend to be a bit impatient, so knowing I'm on the right track is good.

    As far as I've found there are no APS specialist per se near me. Having you guys as a resource is huge:

    Lots of love and light and peace and health to all of you, my new friends.

    Elke

  • Hello, I guess I have "mild" APS.....fortunate to be diagnosed before I had clots/stroke etc.... discovered

    when I went to a Rheumatologist who is also considered a "Lyme literate MD"....thought I had Lyme Disease

    ....she found I was negative for Lyme,.and b ased on my reported symptoms....bone weary fatigue, malaise.

    basically just felt rotten....she tested my for APS...and other Autoimmune Disorders....Despite feeling sick

    for years no MD ever considered testing me for Autoimmune Disorders...

    320 mg Aspirin made me feel better but a few months later I started to have symptoms again(milder)

    MD added 100 mg Plaqenil 2x/day....and 4 1/2 years later I feel great....she restored my life!

  • Oh my gosh that is so encouraging!!! My doctors have tossed around Lyme as well, but I was negative for that and all of the co infections.

    I had been tested for a bunch of auto immune in 2007 (not APS) and came back with a positive ANA IN 2008 but nothing ever came of it.

    I saw my ND yesterday and we will continue aspirin at 81mg, increased EFA fish oil to 2000mg twice daily, and added in Nattokinaise twice daily. We discussed Plaguenil and will consider that if these measures don't help.

    Stories like these give me hope that I will one day recover some semblance of my former self!!!

    Thanks you for sharing!!!

  • If you live anywhere near Basking Ridge New Jersey I highly recommend my RHeumatologist(and Internernal DIsease)

    Dr. Andrea Gaito...she is also on the Board of DIrectors for ILADS International Lyme and Associated Diseases Society.....she explained to me that I was probably predisposed genetically to developing an Autoimmune Disorder (I have APS and Unspecified Mixed

    Connective Tissue Disorder); and that my bout with Lyme Disease was a possible stressor that contributed to APS symptoms....

    She also said that many MDs do not test for Autoimmune DIsorders until there is a "crisis"...

    ie stroke.

  • You may like to know that Plaquenil is considered a standard treatment for Hughes /APS now and is given at St Thimas as a matter of course. Ask for it rather than the generic as it seems to work better and be prepared for a couple of months for it to kick in as it's a slow starter.

    Your story is not unusual but I think APS and possibly Sjogrens is a more likely outcome for you as I was also labelled with Fibro and ended up having a Stroke! Stick to your guns especially if your blood work is positive - even slightly!

  • I noticed that the UK website actually describes a "mild" APS, but the US doesn't seem to recognize it unless you have an event. Granted prof hughes lives/works in UK so his work probably hasn't trickled over here yet.

    Does he treat even non thromboembolic APS with Plaquenil?

    Thanks for your response!

    Elke

  • Yes he does :) I've never had a clot or anything but I'm on it!

  • My doctors in New York City know about Dr. Hughes work, they just don't accept it. Also, I guess it is scary to give blood thinners unless it is the standard treatment. However, many rheumatologists will give you plaquenil if there are indications of autoimmune disease even if it isn't certain what it is. My diagnosis at the moment is ?lupus, but this is my second round on plaquenil. The first time I used it, it was like a miracle. The problem is it is very slow to act. If you are positive for APS, and you ask your rheumy if you can try plaquenil, it's likely he/she will agree. It's considered a safe an effective drug.

    I have low titers of cardiolipin A?, but it is considered negative in the states. I have fairly serious neurological symptoms. I've been tested for MS twice, have a history of migraines and had a seizure, and other neuro symptoms, but I haven't had any clots or a TIA, so I'm using aspirin on my own. (Actually, two doctors suggested it in the past.) I feel I may benefit from stronger anti-coagulants and would very much like a heperin trial, but I'm afraid it is not possible here, unless Dr. Hughes and doctors in his camp persuade the specialists in the US that he is correct about "mild" APS and "seronegative" APS, or even to do trials. Like you, I can't possibly afford to go to the UK.

  • I am so sorry for your suffering, and I'm am hopeful that professor Hughes work with mild/sero negative APS will make it's way across to us here.

    Do you have access to naturopathic drs where you are? They are more likely to think outside the box and try alternative treatment. There are many powerful blood thinning supplements and herbs that could be considered.

    My heart goes out to you...

  • annNY there are Drs in and around NY that are accepting of Prof Hughes and Khamashtas work you may just have to find them. Write to them at London Bridge via email and ask them to recommend someone to you.

    As I have said many times you have to find a Dr you can work with and if they are disbelieving naysayers then you have to find someone else.

    Also for those of you suffering IBS or other stomach problems, prof Hughes always advocates that we should all not be eating Gluten. Gluten is a toxin and an inflammatory agent that will affect all systems of your body including your brain. The Dr who first ran the test for Celiac Disease which made it a Gastro Disease ran them from the gut however had they bothered to go into the brain first it may have been labeled a Neurological Disease. Gluten causes neurological symptoms so if you treat all of the other symptoms of APS and you still are not symptom free cut out Gluten for a few weeks and see what happens, you may well be pleasantly surprised because apart from your IBS symptoms improving you may well find that your migraines do too.

  • IBS and Hughes? I have terrible IBS (bloating, distended abdomen, loose stools, bubble guts). I've tried several supplements and elimination diets but nothing has really made that significant of a difference.

  • Where are you from and who is treating your APS? I would cut out Gluten as a first line attack and then see where things go.

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