My Wife's Lupus & Depression
Hello,
My wife was diagnosed with lupus and neural Sjögren's about eight years ago. She's been getting monthly Benlysta infusions for the past five years. They have helped her flare ups immensely. Although they tend to go in a wave:
One week of recovery from the infusion
Two weeks of feels somewhat normal
One week of the downturn before her infusion
But over the past 18 months or so she has been slipping into a bad depression. At first it was the typically Benlysta rush that left her weepy, and very much realizing how much her body hurt for the first few days. Now it's seems like it doesn't matter when it is in her infusion cycle.
The fatigue has definitely taken its toll. She doesn't feel like she has any energy at all. Her joints are hurting a little more than usual. Unfortunately, when this happens, her rheumatologist recommends increasing her infusion dose of Benlysta. But I definitely can tell that her depression gets worse when they increase the dosage.
Has anyone found a medication or therapy that helps with depression when undergoing Benlysta treatments? Or better yet, are there any other medications or clinic trials out there that would be better than Benlysta?
We have a trip planned for the Mayo Clinic in May. I'm hoping that we get a solid team of a rheumatologist and neurologist who can look at all her medical issues as a whole and come up with a cohesive treatment plan that doesn't bring on such a huge depressive state for her.
Any insight or direction is greatly appreciated.
Thanks
lupus is so difficult to deal with and having infusions can make it even more difficult. I have had to seek counseling before and have had to learn coping skills to deal with it all. I found that working out helped as well as hydration and changing my diet.
Sometimes it's a conglomerate of things that can cause the depression and weepiness. Having lupus itself can do it. I would suggest talking to the doctor and exolainj g exactly what you said here. They would be able to direct you better.
In the meantime if she isn't part of a support group that may help to know she's not alone. I'm holding space for her to find some relief. It's a hard to deal with that difficult space. We are here if she needs support. ~Racquel~ lupus.net team member
