I got a diagnosis today after trying to figure out what’s wrong with me for twenty years. My grandmother died at a relatively young age of lupus complications and she had to end her whole career at 36 because she was so sick. I’m 27, and I am terrified I’m going to end up like her. Her quality of life was absolutely awful for the entire time I knew her. I don’t want that for myself.
First things first, treatment is way way better than when your grandmother was diagnosed. We have lots of off label meds and even now have an on label lupus medication. I was diagnosed at just before my 22nd birthday, I’m 38 now and I’m doing great. You can get through this. It gets better.
One thing you are going to have to learn is your new limits. Chances are you’ve already experienced what it’s like to exceed them, but now you know why. Stay out of the sun, take vitamin D, when your body demands rest, listen. Get a consistent sleep schedule and stick to it. If you are not already off alcohol it’s worth considering but not necessary (depending on your meds.) Cannabis is also worth considering, but again between you and your doctor(s).
Listen to your doctor(s). Make sure you keep up with your Rheumatologist and your GP. You may have to add in an opthalmologist depending on your meds as well (don’t worry about that, eye complications are rare). It may take time to find the medications that work for you, be patient. It’s probably not going to be just one medication, most people do best on combinations. Be sure to get off Prednisone as soon as you can tolerate, it’s only meant to be temporary and it can have long lasting effects. Find a local support group, the lupus society has them all over. https://www.lupus.org/
Feel free to DM me or add me as a friend. This isn’t the end of your life, but it is the start of a big change.
This is all less medical advice than it is lessons I learned the hard way.
My sister-in-law was diagnosed a couple of years ago. It has only improved the quality of her life by allowing her to work with her doctor on a treatment plan that has mitigated the health issues she used to struggle with.
She is currently looking at going for a PhD in the field of her chosen career.
My grandmother died at a relatively young age of lupus complications and she had to end her whole career at 36 because she was so sick. I’m 27, and I am terrified I’m going to end up like her. Her quality of life was absolutely awful for the entire time I knew her. I don’t want that for myself.
Selena Gomez has lupus and Only Murders in the Building, entirely made after her diagnosis, is the best thing she’s done in her career, IMO.
The world has changed. Stay strong, you can do this!
I actually found out she had it by watching that show. I was looking at her thinking, “she’s got the moon face.” Something that happens to us especially when we’re forced to take corticosteroids during a bad flair. And then I looked it up and was right. Lady Gaga also has lupus and is obviously still an international superstar. So I think OP will be fine as long as they don’t do an extremely rough physical job or work outside.
First off, your rheumatologist is the most important doctor you will be dealing with. For some reason the field collects some odd ones with poor people skills. You may get lucky and find a good one right off the bat. However if the doctor seems to not be listening to you, understanding and explaining your symptoms, go for a second opinion or a third or a fourth opinion. It took my wife 5 different ones to finally find a good one. It’s a 3 hour one waytrip to see him but it’s worth it. We will likely be moving up closer to him in a few years.
Second be patient with the meds. It will likely take several tries to find something that works. However not too patient, waiting too long can make the disease progress further. However once the right cocktail is found you’ll feel a bunch better, until you don’t. Changing meds is common and normal no matter how long you have it.
Last, if your in the U.S. and have to deal with our shitty system, get ready to fight insurance. It will be a constant battle if you geton one of the criminally prices drugs. Just don’t give up and eventually you will win. One drug refill took my 2 months of twice weekly calls to push it through.
