trying to learn
Hi everyone. My wife was recently diagnosed with SLE. She is 51and just starting to see drs. to get treatment and care sorted out. For our "empty nest" hobby we started touring on a motorcycle. She is now taking xarelto. I am afraid to ride with her now but she said she's not going to let this stop her! We reconnected on this bike but now it scares me. Any advice? (And yes, I know motorcycles are dangerous) lol. Thanks
Hello and Welcome to our family;
I applaud you for wanting to learn about this disease in order to help your wife. I agree with her, she should not let this diagnosis stop her from doing those things that she loves to do. Such as riding on the back of your motorcycle with you in her arms.
I would suggest a few precautions, however, so that she can enjoy this as much as possible. Please be aware that the sun (UV/UVA rays) are one of the worst enemies of Lupus Patients. So, we should try to avoid exposure as much as we can. I would suggest that your wife wear sunscreen (minimum 50 SPF) all over her entire body. Also, that she wear sunglasses that block UV/UVA rays and a hat. I don't know if you are she are wearing riding leathers or not, but in any case, she should wear clothing that protects her body from sun exposure. Perhaps you can limit the amount of hours that you are riding during the day. Take a lot of rest periods where she can sit and recuperate (make sure that she does not get overly fatigued) and keep her hydrated.
You mentioned that she is taking Xarelto. Does she have venous thrombosis? Is she on any other medications for her Lupus?
I am glad that you joined our family and please know that we are here to help you in any way that we can. I wish you and your wife many happy hours of the road!
Peace and Blessings
Thank you for the response. We have been trying to find out why she has been feeling so bad for a couple of years. We even had one Dr. smugly ask what she wanted him to treat first! In September she had a vein ablation in her leg. She developed a clot in another vein, staff infection at the sight, and lots of pain. Her family Dr. noticed a marker for lupus in her blood work but could not test until the coummodin was discontinued. I went to every Dr. visit but the most important one so I'm not sure what this is called, but it is something with the blood and systemic lupus. Her leg still has a lot of swelling almost 6 mos. after the vein ablation. She has headaches but said the xarelto seems to help. I'm just afraid of an accident while taking this. I have way more questions than answers so I'll probably be on here a lot. Thanks again for the response.