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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.

Has anyone else had problems with Myopathy? Ive had this disease for 20+ years but the severe leg pain, weakness, and swelling is new to me

A MyLupusTeam Member asked a question 💭
June 8, 2025
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A MyLupusTeam Member

An update: It turns out the most severe aspects of the myopathy were caused by an unusual reaction to Omeprazole. 95% of the swelling and pain were resolved with cessation of the Omeprazole. There is still some pain, weakness and inability to improve muscle tone, which may be related to the Prednisone according to my GP, but I will have to deal with that until I can wean off of the steroid. Fingers crossed. At least I can walk again. I do maintain a minimum of time on the treadmill which seems to help but, as stated above, I am unable to build muscle tone or endurance.
Lupus is a frustrating challenge and sometimes it is difficult to determine what is caused by the disease. Perhaps the reaction to the drug itself was caused by the disease. Who knows.

September 24, 2025
MyLupusTeam

Many MyLupusTeam members experience muscle weakness and leg pain as part of their lupus journey. One member shared they have such severe leg pain they can barely walk during flares. Another described experiencing horrible pressure and pain when trying to kneel.

These symptoms can be particularly frustrating, especially when Show Full Answer

Many MyLupusTeam members experience muscle weakness and leg pain as part of their lupus journey. One member shared they have such severe leg pain they can barely walk during flares. Another described experiencing horrible pressure and pain when trying to kneel.

These symptoms can be particularly frustrating, especially when they appear after years of living with lupus. Pain and weakness can vary in intensity and location throughout the body. If you're experiencing new or worsening muscle weakness and pain, it's important to contact your rheumatologist right away. They may need to adjust your treatment plan. Avoiding using muscles due to pain can actually worsen muscle weakness, so working with your healthcare provider to develop an appropriate activity plan is essential.

Treatment options may include NSAIDs or corticosteroids to help manage symptoms. However, never stop or start any medications without consulting your doctor first.

June 8, 2025

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