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Making an appointment with Mayo for Lupus.
Autoimmune Diseases | Last Active: May 4, 2021 | Replies (9)Comment receiving replies
Hello I’m 25 I’m from Houston. I was diagnosed three years ago with lupus and since then it’s been a down hill battle I’ve fought. I’ve tried what feels like so many medications and nothing has worked. Currently on the iv infusion of benlysta every three weeks and at first it worked. But now my numbers for labs are worse than before and I just feel terrible 24/7 I’m lost. I’m looking into becoming a patient with the Mayo Clinic. I travel with no issues because my parents work for the airlines which is a blessing. I’m just wanting to see if this is something they can help me figure out since my current doctor isn’t. How long would I need to plan to stay? Would they do everything they needed to while I was there? Meaning tests scans appointments etc. or would I have to be coming back every week like I do at my doctor here. I have a 4 year old son so it is alittle hard but willing to travel if it means getting answers I’ve longed for.
Replies to "Hello I’m 25 I’m from Houston. I was diagnosed three years ago with lupus and since..."
You are very wise to seek help with the best specialists you can find for Lupus. My sister went undiagnosed and misdiagnosed for a long time because she also has other autoimmune diseases whose symptoms overlay those of Lupus. When she finally was correctly diagnosed, she, nor I, really understood the seriousness of Lupus and how devastating it can be. This lack of knowledge caused her to reject treatment that was recommended, which was a course of chemotherapy, it just seemed too extreme to her. Because this treatment was not done, she nearly lost her life to Lupus and now has life-long disability caused by many strokes due to cerebral vasculitis. I understand that cerebral vasculitis is a rare occurrence in Lupus, more commonly it affects lungs and kidneys. She has since had the chemotherapy and her Lupus has stabilized. Please, when treatment is recommended, no matter how distasteful it seems, do your research so you understand the ramifications when making your decision. Best of luck.
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Hi @laurenavery22 and welcome to Mayo Clinic Connect. So glad you could join the group. feeling terrible 24/7 sounds unbearable. You will see that I moved your comment to a conversation where members are discussing lupus and getting an appointment at Mayo. I did this so you could connect with them and share your experiences. Every person's medical care is individualized at Mayo and it really depends on the specialties that you need to see and the department's availability. I would recommend a doctor's referral as Rheumatology tends to have a waiting list.
May I ask what your physician has offered for relief of your symptoms?