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I have Lupus SLE

July 3
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Answer Summary

Members rallied around a question about purple fingers, tingling, and swollen ankles in lupus, with many sharing that Raynaud's phenomenon is... Read more

Members rallied around a question about purple fingers, tingling, and swollen ankles in lupus, with many sharing that Raynaud's phenomenon is a common companion condition to lupus and other autoimmune diseases. Several members offered practical tips for managing Raynaud's, including wearing layers and gloves, using hand warmers and stress balls, avoiding cold air and stress triggers, and asking doctors about medication that opens up narrowed arteries. A recurring theme was the importance of monitoring kidney health, with members encouraging regular urinalysis and urine protein testing to watch for signs of lupus nephritis.

A MyLupusTeam Member

I have had lupus since age of 5, I have arthritis and raynauds at age of 24 and Sjögren’s disease because of it. It’s hell with all three but I made it through college sports. You gotta fight

July 3
A MyLupusTeam Member

I have Raynauds as well and heavy winter gloves/miits help a lot but what I found that helps even more (based only on the assumption there is not too much pain or lack of mobility involved), I use a stress ball and that gets blood circulating in my fingers quickly. On days where pain and stiffness in the hands and fingers was too much, I had to skip the stress ball and use the winter gloves. I hope you find something that works good for you.

July 6
A MyLupusTeam Member

@A MyLupusTeam Member
Lupus nephritis comes in stages. If protein levels are above a certain amount and with edema, stuff like blood in the urine or foamy urine, it could be an increase in activity, a higher stage. Unfortunately a lot of doctors don't really know much about the specifics of lupus nephritis and tend to dismiss proteinuria. Just keep an eye out for other stuff like high blood pressure and more water retention. Nephritis is usually diagnosed by biopsy, if criteria are met.
Sending hugs

July 9
A MyLupusTeam Member

Marie, I also have Raynaud's, like many of us. It's caused by constriction or narrowing of the arteries in the fingers (and sometimes the toes), leading to color changes and discomfort. Rarely, it can be severe, especially in smokers.

Staying warm and covering the entire body helps prevent it. In the winter, layers are important. If these measures don't work, medication is available that dilates (opens up) the arteries, preventing it. Most of us find that staying warm is adequate to keep it under control.

July 4
A MyLupusTeam Member

I have Raynauld's phenomenon and my fingers and toes do that. I have had Raynauds since I was a teenager and I am 63 now.
You get used to it.

July 3

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