1. Before I was diagnosed with Lupus, I felt like I was sick all the time. I had pneumonia 2 years in a row. Any type of illness kept on for weeks. In the 5 years I have been on Plaquenil, I have only been sick twice—the first sickness lasted 2 days (I think I had Covid), and the other time it was just a cough that lasted a few days. I am a nurse and continued doing direct patient care throughout the pandemic. I feel like being on Plaquenil has helped me not to get sick.

  2. I use it too! My dermatologist also ordered spironolactone and my hair is coming back like it was before I ever had Lupus. I don’t care if I will be taking these meds forever, it is worth it to have my hair back.

  3. I’m a dialysis nurse with Lupus. I get it. Every day, my job shows me what can happen-and makes me more and more determined to do everything in my power to make sure this doesn’t happen to me. I hope you find peace in the middle of your hard days.

  4. Agree with SoftwareOk5910. Most of us spent years getting an accurate diagnosis. I’ve never heard nor read of anyone being diagnosed quickly. SLE is usually a diagnosis of exclusion and rarely the first thing a rheumatologist considers. For peace of mind I’d seek a second opinion if I were you.

  5. I went to the ER with chest pain, and the ER doctor told me “I think you have Lupus.” She ordered all the appropriate Lupus labs and admitted me with pericarditis. The labs came back positive, and a few days later I saw my rheumy and was diagnosed with SLE. I never occurred to me that there was something wrong with me.

  6. I was diagnosed my first visit with my rheumatologist. I was referred after I was hospitalized for pericarditis. I had a positive ANA and anti DsDNA. I did not have joint pain—it took a year or so for me to experience a lot of the typical Lupus symptoms.

  7. Please see a dermatologist. I lost a lot of hair when I got sick with Lupus. I just accepted that it was part of Lupus and dealt with it. About 6 months ago, I got fed up with my scalp getting sunburned, and went to a dermatologist. Turns out I have AGA (totally unrelated to Lupus.) She prescribed Minoxidil topically and spironolactone. You would not believe how much new hair I have coming in. I wish I had gone to the dermatologist 5 years ago. My hair is going to be better than ever once these short hairs get longer. I can’t say the same thing will happen to everyone, but it’s worth a shot to see if there is something to help your situation. Your hair loss might have a cause that is not Lupus.

  8. Mine is in a spray bottle. I prefer that to the dropper or mousse.

  9. I buy it that way from Amazon. It is Elevate brand. They mail you a free bottle with every purchase.

  10. My fatigue has decreased with treatment, but it is always there. Maybe I have just gotten used to it. I agree with making sure she gets some exercise. My fatigue is actually less on days that I work. Coffee helps me get through the day, and getting enough sleep.

  11. So the Spiro stops the loss of hair and the min helps grow new hairs, is that right? I just started 50mg Spiro and a lot of people suggested I also use min but I don't have the money to buy it, the Spiro is covered by insurance.

  12. I believe that is correct. I use the Elevate brand from Amazon, and they send a free bottle with each purchase if you text them your order number.

  13. They do not have to approve it, but I believe they do have to offer you an alternate position. I asked for an accommodation (which was denied), and they informed me that I would be moved to a different position (with awful hours and a large pay cut). I had to withdraw my request in order to keep my job.

  14. Yes. I have this. I had a thorough work up with cardiology and they couldn’t find a cause. They started me on metoprolol which slows my heart rate but hasn’t affected my blood pressure. I always thought it was part of my Lupus but my rheumy said it wasn’t.

  15. I have commented maybe once on this sub, but I read it every day—and have noticed how rude/mean some people are. I have crocheted for 50 years, and would not be comfortable making a post and asking for help. Thank you for saying this. I feel bad for the new members who ask for help and get shot down.

  16. Are you sure it was mold? I have seen many feeding tubes turn dark from medications. Liquid iron is the worst, it stains the tubes permanently.

  17. I often have to push myself just to make it through my work day. I’m a nurse, so I’m on my feet for my 12 hour shifts. A couple of cups of coffee get me through the day. Pushing myself hasn’t hurt me yet. I refuse to let this stupid illness rob me of a career I love.

  18. I have had SLE for 5 years, and I have never taken a steroid (even when I had terrible pericarditis).

  19. Nurse here. In my 37 years I’d nursing, I guarantee no one has EVER heard me talking about a patient (or their family) in a derogatory manner. It isn’t right. We are better than that. Our patients trust us to keep what happens while they are in our care in strictest confidence, and we are legally bound to it.

  20. My Lupus is controlled with medication (Plaquenil and Benlysta), but I feel a whole lot better when I avoid processed foods, sugar, cured meats, dairy, most grains. I feel great when I eat fresh meat and fish, fruits, vegetables and rice. I can’t completely give up grains and dairy, but I try to limit how much I eat. No diet will cure your Lupus, but you might want to try an elimination diet to determine what foods might cause issues for you.

  21. I have the same meds I started keto for vanity sake mostly not health but I saw similar results when I cut just the sugars

  22. I wish I could do keto. I was on a keto diet for 3 months last summer (vanity reasons) and I lost weight, felt great. My hair started falling out and my cholesterol went through the roof so my rheumy asked me very nicely to stop the keto.

  23. I started topical Minoxidil and oral spironolactone in Sept. I had zero dread shed. My dermatologist said some people don’t get it. I have had terrific success growing my hair back. You might be one of the lucky ones.

  24. I’m also a nurse, I work 12 hour shifts (direct patient care) and even work overtime when it is available. I do absolutely everything I ever did before I got Lupus (except for activities that would expose me to the mid day sun). I am married with adult sons. I have pets that I take care of. I keep my house clean. I cook and bake. I go on vacation, I take walks and kayak like I have always done…. and I am 58 years old.

  25. You shower with your 7 year old son? No wonder she tries to interfere. That’s messed up.

  26. Maybe try keeping a food diary. I did the whole 30 program (recommended by my rheumy) and realized that I had a lot more pain and stiffness the day or two after eating/drinking certain things. If I eat cured meats (like ham, bacon, sausage) lots of sugar or drink soda I know I’m gonna pay for it the next day.

  27. Thank you. I'll have to look into that. I do eat a lot of sugar. Never crossed my mine it could affect my pain like that

  28. What I eat really affects how I feel. I still eat things I shouldn’t (oops) but it helps knowing there is an actual reason I feel like crap. For me, its kind of like having a hangover from pizza and Coke Zero instead of alcohol.

  29. Another vote for Hokas. My first pair seemed to lose support after about a year (but I am a nurse and wear them for 12 hour days 3-4 days/week.) I recently bought 2 more pairs.

  30. My younger son is in his 20s and tells me he loves me and gives me a hug EVERY time he says goodbye. If I see him several times in a day, then he tells me he loves me several times that day. My older son lives in another state and tells me he loves me every time I talk to him. I frequently get random “I love you mom” texts for no apparent reason. Absolutely nothing wrong with it. NTA, but your husband is.

  31. I requested one simple accommodation several years ago. Not only was it denied, HRs response was offering me a totally different job with less pay and terrible hours. The only way I prevented it from happening was to formally withdraw my request for accommodation. I tried to appeal it but was told by the “Reasonable accommodation manager” that my request would put an unreasonable burden on my workplace and that I could not appeal. I stayed with that job for a couple more years and then transferred out.

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