Unsure if I have Hughes or not - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Unsure if I have Hughes or not

Shaddix29
Shaddix29

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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KellyInTexas
KellyInTexasAdministrator

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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