Hi I found out today I have Hughes syndrome after having 3 different elevated IgM anticardiolipin antibodies. The levels were 22, 19 and 14 so I think I'm of pretty low level. However I've been really ill all year starting with daily migraines for 3 months then having a possible transverse myelitis attack in June leaving me numb from my waist down. I understand this is a pretty rare manifestation of Hughes syndrome I just hoped to hear from anyone who may be going through the same. I'm seeing a haematologist in January and still being investigated with neurology due to my worsening of symptoms and difficulty walking. All my MRI's are clear as is my lumbar puncture results so I may not even have transverse myelitis although my symptoms suggest this is what happened to me. I'm pretty scared I'll never get any better. I'm 24 and have lost my job over all this
Other possible none related symptoms I've been having is tinnitus, visual snow, purple/red blood like spots showing then disappearing on my body, and hair thinning. I've been tested for lupus and that came back negative. Any input greatly appreciated!
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miffy
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Hello and welcome, it can all be a bit much, when you first hear this sort of thing, but getting a diagnosis and some correct medical input is half the battle. A lot of the symptoms you describe are fairly typical. Other members on here will have had the same as you. Also many autoimmune disease do overlap. It is also no uncommon to have problems with the thyroid which can cause hair to thin, sometimes this does not show up straight away.
You will receive lots of information and support on here, not just about the clinics, but also personal stories, and diagnosis and in some cases no diagnosis.
Another thing to do is to read the personal blogs people have put on here. Do feel free to ask us all questions, and we will try and help you as much as possible. Please do not be daunted, the correct team and medication, will make all the difference.
thank you Mary I will look around the site. It seems like a lot of people have numbness affecting their extremities but mine is the whole lower half of my body affecting my bladder etc..!
Was also wondering what drugs (if any?) do people take for neurological symptoms? I don't know how much of the problems I'm having is due to the aps. So far I just take aspirin a day and amitriptyline for nerve pain. Aspirin has stopped migraines but no improvement with drugs otherwise.
I'm sorry to hear you have just been dagnosed with Hughes I remembe when I was first told,...I felt my world had fell to pieces. But it will get easier
We will all help where we can, I take warfarin, they like my inr at least 2.8, I take allergu tabs, antryptaline for possible fibro', plaquinil for the joint pains & sumatriptan & zomig for migraines.
It has improved with Heparin which I now take daily.
I also suffer from tinnitus, which a lot of people with Hughes seem to get.
Like you I get the purple and red spots on my skin, I also have shocking Levido.
Also I get problem with my eyes, somedays it is as though I am wearing the wrong glasses and I often remove them to check. Everything is blurry and somedays things just seem to jump about.
I hope that you will get the right medication for you.
Suzy you have been put on lots of meds! I shall ask about meds tomorrow with my neuro but don't see the hughes syndrome specialist till next month. Do I need abnormal coagulation blood tests to be put on these blood thinners? I think mine were normal but so far just been advised to take aspirin daily, I know it makes tinnitus worse so I don't really want to be taking that!
SueLovett did you find you had these spots from the beginning? Mine seem to have appeared a month or so after my attack of transverse myelitis. I hope I can find some medication that will help with the numbness I feel like I'm sitting on a numb bum all the time it's such a horrible feeling
Welcome to the group, i look forward to hearing from you i am sorry to hear you are havinga rough time but we have all been there please do look through the blogs there is a wealth of info but i have copied the below from the HSF site it helps with the basics and then we can all help fill in the questions you have
Due to the increased tendency to clot, the main aim of treatment is to 'thin' the blood, so that this tendency is reduced. This is usually achieved for most patients, by providing anticoagulant (literally anti-clotting) therapy based on the extent of the clotting.
There are currently three main medications – aspirin, heparin or warfarin. For many thousands of patients, one “junior” aspirin a day (approximately 75-80 mg, or one quarter of a regular aspirin) is all that is required. Its main action is to make the platelets of the blood less "sticky" and is sufficient to hold off clotting. It is the main medication used in pregnancy in Hughes Syndrome patients with previous miscarriage.
For those who have actually had a thrombosis, the choice is between heparin and warfarin. Heparin is a very useful anticoagulant but unfortunately is only available as an injection, and cannot be given long term because of an increased risk of osteoporosis. It is, however, used in some Hughes Syndrome pregnancies, as warfarin is potentially toxic to the developing fetus.
For most people with thrombosis, warfarin is the treatment of choice. Used for many decades warfarin is the 'gold standard' anticoagulant tablet and, provided that the anticoagulation dose is monitored carefully to test that the patients blood is thinning to the correct degree, it is an extremely safe drug. Those taking warfarin are monitored with a standard clotting test called the INR (International Normalized Ratio) - a procedure carried out either in GP's or hospital anticoagulant clinics, or, increasingly, by the patient themselves with self-testing INR machines.
For other symptoms, most patients are treated on a case-by-case basis, or ailment-by-ailment basis. Plaquenil is an effective treatment option for general symptoms such as rash, fatigue and pain.
Notes on the main three treatments
Aspirin
Low dose aspirin (‘junior aspirin’, ‘baby aspirin’) – at a dose of between 75mg to 100mg a day is known to be an effective anti-clotting agent, making the blood platelets less sticky.
Safe. Side effects are rare (indigestion; allergy especially in asthmatics)
Not sufficient treatment of those with major thrombosis or stroke
Heparin
Newer “low molecular weight” heparin (such as ‘Clexane’ or ‘Fragmin’) has replaced older preparations
Only available as injection
Useful as a ‘first line’ (immediate action) treatment in thrombosis, prior to warfarin use
Warfarin (Coumadin)
Despite being dismissed as ‘rat poison’ by some journalists, warfarin is an extremely safe and effective medicine. It has a good long track record having been around since 1950s
Side effects are rare – the only vital issue is to keep the dosage correct
The thinning of the blood achieved by warfarin is measured on an scale called ‘INR’ (International Normalized Ratio): normal’ is “1”; half thick blood is “2” and one third blood is “3” (think of it as ‘full cream’, half cream’, ‘skimmed milk’)
For most patients who have suffered a thrombosis, an INR of 2 is used. However, many patients with Hughes Syndrome – especially those with headaches require more intense blood thinning so an INR of 3 or more is maintained. For more information about living with anticoagulants, please visit Anticoagulation Europe.
Clopidogrel (PLAVIX) – This drug has a mechanism similar to aspirin in making platelets less ‘sticky’. Although expensive, there are real reasons for looking at Plavix. Firstly, Plavix does not have the irritant effects on the stomach which can occur with aspirin (fortunately rare with the low dose). Neither is it a problem in asthmatics, who may prove allergic to aspirin. Thirdly, huge studies in cardiology, where aspirin and Plavix have been compared in the prevention of heart attacks, have discovered some evidence that, under certain circumstances, Plavix may have the edge over aspirin.
Intravenous Immunoglobulin (IVIG) – This consists of an intravenous preparation of protein (globulin) pooled from a large number of donors. It is extremely expensive, and its action is short-lived. Some years ago, it was found to help in some cases of thrombocytopenia (low platelets) and has since been used in a variety of autoimmune diseases with mixed success. Despite its apparent limitations, it has a good safety record and is being tested in some patients with Hughes Syndrome, particularly those with low platelet counts.
Immunosuppressives – These drugs (most commonly azathioprine and methotrexate) are widely used in autoimmune diseases such as lupus and rheumatoid arthritis. They have proved disappointing in patients with primary APS. So also has plasma exchange – an attractive idea for removing antibodies, but with little convincing published success – as yet.
Antimalarials – hydroxychloroquine (Plaquenil) is an extremely useful drug in lupus and Sjögrens Syndrome. It is particularly effective in helping skin rashes, fatigue, and aches and pains. One of the additional actions of Plaquenil is as a (mild) anti-clotting agent – rather like junior aspirin. Thus, in lupus patients with Hughes Syndrome it might well have extra, hidden, benefits.
In theory, increasing the amount of essential fatty acids (EFAs) in your diet, particularly omega-3 EFAs found in oily fish, should help reduce the risk of thrombosis, but there are no clinical trials to suggest this is the case.
It is worth noting that fish oils also contain large amounts of vitamin A, which may be harmful in pregnancy.
No other 'alternative' treatments have been shown to help.
Patients can also reduce their risk of thrombosis from causes other than the Hughes Syndrome (APS) by making lifestyle changes. They should stop smoking, make sure they are a healthy weight, and take regular exercise.
The oral contraceptive pill increases the risk as does oxygen pressure changes such as high altitude flying or diving.
You should be aware of the signs and symptoms of Hughes Syndrome and report any of these to your doctor as soon as they occur.
thank you Paddy for that information I was holding off replying until I saw the haematologist which I did yesterday. He pretty much told me he isn't diagnosing Hughes as I have not had a clear thrombotic episode. My antibody level has steadily declined over the months and he seems to think it will probably just go. I'm not really happy with this and I went a bit mad at him as he wasn't even the specialist I was supposed to be seeing.
They can neither confirm or deny that the transverse myelitis was due to a blood clot somewhere as my MRI was clear so its now a waiting game to see if it happens again which I'm very uncomfortable with. I don't think I could go through all that again I've lost so much sensation from the first attack.
No doctor will acknowledge that the migraines I suffered for three months before transverse myelitis could be any link to Hughes even though they left me slurring my words and weak on one side of my body which I never used to get with migraines. Its so frustrating not to be listened to. I'm getting increasingly numb in my feet and finger tips which is worrying as these areas were not initially affected by the TM. I suppose what I'd like to know is do you have to have had a blood clot to get symptoms from this syndrome?
I never had a blood clot(but my brother had a major thrombotic stroke and also has IgM antibody) and also have low titer IgM anticardiolipin (I also have a secondary antibody called phosphatidylserine). I had migraines that became very severe, trouble thinking, intermittent numbness left hand, intermittent stuttering. I was able to get a trial of lovenox (as professor Hughes has written about) after first trying aspirin which did nothing for me). the lovenox completely aborted my migraines and other symptoms in 24 hrs. Sounds like you should get a new doctor. We're do you live?
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