I have Sle and Hughes syndrome

[Luppiegirl]

I first was diagnosed December 25th 2014 with SLE Lupus about six weeks later after blood work i was told I have Hughes . I am only being treated with low dose aspirin 81 mg. Ifor the hughes. Is this normal treatment ? I see s0 many on warfarin or lovenox shots?

[Manofmendip]

Hello and welcome.

The criteria in the UK seems to be that low dose Aspirin (75mg in the UK) seems to be the first treatment of choice unless someone has had a clotting incident or, as in my case, the Aspirin did not provide adequate symptomatic relief.

Who is managing your treatment?

Where are you from?

Best wishes.

Dave

[Luppiegirl in reply to Manofmendip]

Hello Dave,

I am from The United States, I live in Michigan ( The Mitten State ). My care is being followed by a Rheumatologist by the name Dr. Behrensen. I haven't had any clotting issues as of yet. I do however have terrible headaches and intermittent dizzy spells. Not sure if they are related to the SLE or Hughes? I am yet to figure it all out. I mostly spend my days very exhausted and overall feeling bad. I am currently taking 200 mg Hydroxychloroquine and 15 mg of Prednisone for the SLE. I was told it would take about 3 months for the Hydroxychloroquine to help.

Thank you for sharing your knowledge with me I appreciate it very much!

Sincerely,

Julie

[Manofmendip in reply to Luppiegirl]

Thanks Julie

Headaches and dizzy spells are certainly symptoms of APS/Hughes and you should be tested for it.

The tests are described here:

hughes-syndrome.org/about-h...

Keep in touch.

Best wishes.

Dave

[MaryF Administrator in reply to Luppiegirl]

HI there and welcome, please do look at our charity website which might also be of interest to your Rheumatologist:

hughes-syndrome.org/

MaryF

[Gorgeous]

I have APS (Hughes ), SLE, epilepsy (post stroke) fribomyaliga postrual hypotension. With in my cocktail of meds I am on warfarin because I have had a vascular event (stroke July 2010 aged 39) I cannot trial any my drugs because it's too risky. On warfarin for life I self test and dose.

I visit St Thomas hospital very six weeks seeing Pro Hunt and Paul Holmes (neurologist).

If they are treating you with asprin and it helps relieve symptoms I would feel that was a positive step. warfarin for me as its own side effects it makes me feel awful.

[diane1428]

I to have APS and SLE. Originally my rheumy kept me on 75mg of asprin. (I had put myself on it 8 months previous before diagnosis as that was the only thing that helped). However, within 3 months I was taking 5 times the dose because I wasnt getting enough relief. If you find that asprin helps you great as to be honest warfarin is a pain in the a*** with all the blood tests. If you find it really isnt helping and you are still feeling bad then ask for a trial of warfarin. You may find they give you injection of heparin first. Though it helped me a bit I felt so awful on it I had to stop but it was enough to show I needed the warfarin.

Dont just go by your rheumy take the matter into your hands and if you dont feel well bang on his desk and say asprin just isnt working. I found that in the end I felt as if I had slugs in my veins and I could feel the lumps passing up neck YUK warfarin has stopped that. Warfarin does have other side effect but hey what doesnt but if you can stay off it try for as long as possible as once on it your on it for life.

Best of luck and incidentally I love this forum it makes you feel that you are not going mad.

[Butterflywings]

I have Lupus and APS (hughes) for the APS Im only on daily asprin as no previous clots but one muscarriage. Told that once I have a postive pregnancu test (hopefully soon) I would also start Heparin . All the best x