Sticky Blood-Hughes Syndrome Support

All kinds of advice....aspirin, management?

Hey there..... Was diagnoses in 2000..... Main symptom at the time was infertility. Had IVF and successfully gave birth with daily heparin. The following year developed random symptoms....and was put on hydrochloriquine. Within the year, I got cancer.

Parter chemo, I felt quite soured on doctors...esp rheumatologists so went without treatment for 7-8 years. Little by little random symptoms developed: ulcers in gum, purpura, skin lesions in ankles, bad IBS, GeRD, asthma. It was never all at NYC but rather "always something." Eventually retuned to rheumatologist who said it might also be full blown lupus but did not recommend anything other than aspirin. Should mention that occasional steroids were amazing w symptoms.

Relative to IBS, Gastro put me on a specific antibiotic that worked miracle. I added fiber to diet, vitamins....all helped tremendously. Prilosec for GeRd.....

Still, I have no ongoing care. Should I go to naturopath? Rheuma? What type of follow up should I be trying to drive?

Relative to baby aspirin, I've been taking half an Alka Seltzer......and not sure if that's ok. I will soon start exercising again.....keeping in mind that two years ago a workout out me in bed for two days. I've really come a long way......

Any advice is appreciated.

2 Replies

Hi, sorry you have had such a rough time. It may be time to try another set of drugs, The Plaquenil is a drug which works for most people, although slow to work. You certainly need help with all this, regarding IBS many people with autoimmune especially Hughes Syndrome find their symptoms are greatly relieved by going gluten free, many of us are so. I hope you get a good action plan soon with your Rheumatologist. Also other members on here from the USA can probably help with more detail regarding medical consultants they have seen. Please have a look at our charity pages, as there is a lot of information containe on them. Also there are books for sale, I have bought and read most of them, and then passed the on to doctors either looking after my or my children! MaryF


Where do you live?


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