side effects of hughes syndrome

[dalalf]

is Hughes syndrome connected to other diseases, or will I get more as I grow older?

[MaryF Administrator]

Hi there - some of us do have other diseases... I have five in total, but not everybody. Although Professor Hughes talks often about the trio of Hughes, Sjogrens and Thyroid issues. I have had most of mine for many many years. I hope that my daughter that has two so far, due to being treated with plaquenil may calm her immune system down a little.

Mary F x

[dalalf in reply to MaryF]

Hi I appreciate your reply and me too I have Sjogrens and had to remove my Thyroid glands and recently was diagnosed with Polyglucosan presented with neuro-muscular disease in the digestive system. I tried plaquenil for 6 weeks but couldn't tolerate it.

I hope they will discover something to help your daughter.

Dalal x

[MaryF Administrator in reply to dalalf]

I had severe allergy to plaquenil, but daughter doing well on plaquenil and aspirin, or better than she was, and thanks. Mary F x

[Suzypawz]

Hi, I'm afraid our paths are unknown & can all be very different, I hope you dont develope any thing else .....but we never know.

Some have APS alone....which is enough!! & others have multiple diseases/disorders........

Sue x

[Skyllark]

Yes Hughes can be the backbone of other issues, can range of differnt internal organ clots, reactions of meds, long time use of some meds lead to issues with liver or kidneys, CHF, seisure disorders. if just having APS is your ownly issue - be glad... don't let the Doc's get you down... and do not let nothing stop you from getting the best treatments. Seek the best Doctors for there help... no matter where they are in the world.

[dalalf in reply to Skyllark]

Thanks for your in formation, but I have several other serious diseases, that's why I asked.

[KatyCaroline]

I have been diagnosed with Primary Biliary Cirrhosis which is another auto-immune disease. At this stage I only have the antibody's, but I consider myself fortunate when I read of other people's symptoms with both APS and PBC. I have so few symptoms, none of which affect my day to day life. However, I am aware that this can change so quickly.

[dalalf]

That's why I asked where does this disease lead as I'm accumulating more auto immune diseases, this year I had osteoarthritis and had to be operated on both shoulders and I'm still in pain. I want to thank you and this community for sharing and giving time and support to each other.

Dalal

[mickt]

Hi ive type 1 diabetes ,addisons disease,Vasculitis gca ,Now been put on warfarin as borderline hughes syndrome.Oh ive vitiligo too .Auto immune polyglandular failure,im ill health retired from work at 51.