i want to find out about treatments for hughes

[claireloliver]

hi i want know what meds people r on for hughes syndrome, as im on 300mg of asprin but my doctor keeps saying that is no longer working for me, but doesnt seem to want to try anything else, i havent been to st thomas but r treated at my local hospital instead, but im going to see my normal gp soon to review a recent mri so wanted to find out what treatments there r to help with it. i do suffer with lots of migraines, dizzyness, joint pains, and currently had memory problems as well, thank u xx

[christylee]

I am on Warfarin, but I have had a Pulmonary Embolism. Would love to switch to aspirin, but not sure if my stomach could handle it. I am in the US.

[jetjetjet in reply to christylee]

christy - where are you located in us - im from southern n.h.- jet

[christylee in reply to jetjetjet]

Jet, I am in NM

[jetjetjet]

hi ckaire- 1 st sounds like you have never been dia. with any type of the aps saga, thats the first step ,and it can be a big one , i say go to doc with info on the aps with any questions you have , it can be tough to get them to listen, be agressive and firm . know what it can be like. are you in the states, if so where, as there are people than might be near and can help in lots of ways ---let me know --- jet n.h. usa

[paddyandlin]

Hi Ckaire

This is a copy from the Hughes syndrome Foundations website i have copied just in case you cannot access the link below

I hope this helps

Paddy

hughes-syndrome.org/treatme...

How the disease is treated

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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.

Main types of treatment

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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.

Other drugs

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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.

How you can help yourself

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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.

[jetjetjet]

paddy - you did it again my friend, i was happy to read the plaquenil, this shines some light on my rheumy s choice of the hydroxychoroquine, as he said with me the warafrin ,icould still clot because of the 3 other blood disorders i have. i looked the hydroxy up it never said any thing about the mild mild anti-clotting agent-or other benefits, i wonder what they are- you got me going now?!?!?!--------jet

[paddyandlin in reply to jetjetjet]

Glad i am keep our grey matter going will see what i can dig up on the anti clotting idea?

[daisy11 in reply to jetjetjet]

read with interest as I suffer from other Haem problems and wonder what you are suffering from?

[claireloliver]

thank u, i was told about plaquenil by friend as i suffer from joint pain and fatigue but no doctor has ever spoken about it, i have been on clexane for 2 years but im now back on 300mg asprin but even my doctor at the hospital has said asprin is no longer working for me but she wont put me on anything else, so im going to try asking me own gp if they can help xx

[paddyandlin in reply to claireloliver]

I agree take this info to you GP seee if he can help claire

[Momamaness]

Hi, I was on 325 mg of aspirin following 1 year of coumadin after my first DVT..I was still on 325 mg when I had my 2nd DVT, so now I am on Coumadin for life...I printed out some of the info from the Hughes-Syndrome. org site and took it to my Dr. He was very open to learning about APS as he had never heard of it before I was diagnosed...hope this helps you..

[melissa96770]

i saw prof hughes last year and he gave me pavix as apposed to asprin, he also told me that they are trialing a heparin tablet and asked if if i would trial it and i said yes . they are trailing it on post op hip replacements at the moment so it all sounds good xx