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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
August 2
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Answer Summary

Many community members related to the question about balance issues, with most agreeing that falls and poor coordination are often... Read more

Many community members related to the question about balance issues, with most agreeing that falls and poor coordination are often lupus-related or connected to conditions like strokes, neuropathy, or long COVID rather than medications alone. Several members strongly encouraged bringing a spouse to doctor appointments, seeing a neurologist, and never stopping medications without medical guidance, with one member sharing a serious stroke episode after her Hydroxychloroquine was stopped. A recurring theme was using assistive devices like walkers and rollators, pursuing physical therapy, and leaning on determination and community support to stay safe and keep moving forward.

A MyLupusTeam Member

Are you journaling these instances to perhaps locate a pattern? It could be a myriad of things. Please check with your care team before making any medication change decisions.

August 2
A MyLupusTeam Member

I was having balance issues as well, so I went to a neurologist. He did a nerve conduction study and found out that I have neuropathy. It was during that appointment that he sent me for additional lab work which showed I had lupus. May I suggest that you see a neurologist especially one that focuses on movement disorders?

August 5
A MyLupusTeam Member

I have balance issues myself, i dont believe its caused from my meds either i believe its lupus related or from my strokes

August 2
A MyLupusTeam Member

I would talk with your rheumatologist first and take your husband with you so he can
be there to hear what the doctor wants you to do

August 2
A MyLupusTeam Member

I agree with @A MyLupusTeam Member. A thorough neurologic examination is important, and your internist and/or rheumatologist can do it; an evaluation by a neurologist can be helpful, too. It's definitely dangerous to stop our meds without speaking with your doctor.

Please keep us posted.

August 2

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