Sticky Blood-Hughes Syndrome Support
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Unsure if I have Hughes or not

I saw my rheumatologist in September last year, I haven't seen him since and my appointment for a next month has been cancelled (and no other appointment arranged as yet).

But I have gotten some of my blood test results finally. There were quite a few pages of results, but I think the only one relating to Hughes that was positive was for the lupus anticoagulant (think that was the name).

But I'm unsure if this means I have Hughes or not and I am not getting any help/information from anywhere.

I currently take Clopidogrel (changed from aspirin) and I've been told to start hydroxychloroquine, is this a treatment for Hughes?

Does anyone else have experience of hydroxychloroquine? I'm quite nervous about starting it.

Thank you for reading this.

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Well, it looks like you do have this syndrome ( with a complicated caveat depending on which specialist you ask, but in reality- if you are symptomatic, and you’ve tested positive- then for all reasonable purposes- yes. )

Plaquinil is an immuno modular. It is used by Rheumatoligists in treating both the symptoms of lupus and APS. It takes a while to feel the benefits from plaquinil. You may need to titration up the dose, and 200mg is the standard dose.

It’s used to treat symptoms of aches and pains, and my Rheumatoligist feels it can halt the progression of other auto immune diseases that like to ,” join in “ like sjogrins and thyroid disease by up to 10 years. It also halts the lupus like progressiveness of the APS towards to Lupus March forward in my case. Also, it can help in stroke prevention.

That address your specific questions very briefly while you wait for an administrator to come on with more targeted answers, and perhaps archived papers for you.

In the mean time please google GHIC.world for a more in-depth study. It’s the newly launched international charity that Professor Hughes himself endorsed and gives a brief educational presentation on in the fields of both Lupus and APS. It’s for physicians and patients alike, so please share with your physicians.

If you’ve clotted, you may need something stronger than clopidogrel. You will need to be evaluated by a hematologist now with experience in APS. A list is provided in the charity and in this forum.

Where are you located?

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Hi and welcome as I note this is the first time that you have posted on this forum.

I see from your other posts that you were suspected of having Lupus and told you had Bells Palsy. Did the Rheumatlogist change the dx from Lupus to Hughes or are you suspecting from these results that you have both?

As you may be aware, 1 in 5 Lupus patients do have APS but you should also be aware that Lupus Anticoagulant antibody test is nothing to do with Lupus. It is as you suggested one of the 3 APS antibodies. Can you see anticardiolipin IgG or antiB2GP1 on the test results anywhere?

If the LA is positive they will repeat it to make sure that it’s not just a odd result which can happen, although to be honest with your history, I’d doubt that.

HCA is often prescribed for both Lupus and Hughes, so you should start to take it. There can be a slow reaction, with some people not seeing results for some months, so be patient.

Clopidogrel is also used but I’m wondering if with your symptoms you may end up needing something stronger.

It’s dissapointing and frankly wrong that a) you have not been able to go back for over 6 months for the results of your tests and to get a proper dx and b) that they have cancelled the appointment that you have and not replaced it. If I were me I’d be on the phone demanding an immediate replacement and reminding them that they have a duty of care to you and you will hold them responsible for any deterioration in your health until you can be seen and properly treated. Having said that I probably would not hold my breath, so you need to see your GP and ask to be referred to one of the specialists on the list in your area, under the Pinned Post section of this page where there are both NHS and private consultants to choose from.

In the meantime, educate yourself as you will need to become an advocate. There is plenty of information here or on the GHIC website which again is on the Pinned Post section.

Please keep us informed of progress.

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