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.
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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.
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.
Not medically trained or experiencing any illnesses, but keep this in mind:
In just a few years, the medical world made huge steps in treating a lot of things using RNA techniques.
Don’t compare a situation 10 or 20 years ago with the possibilities today.
Sorry to hear this.
An internet forum like Lemmy is not the best place for medical advice. Most diseases can vary significantly from person to person. Lupus comes in multiple forms. The musician Seal has a form of lupus, and he’s 61. Autoimmune disorders are very complicated, because the immune system is very complicated.
Your doctor should be able to give you guidance and “what to expect” type information. If there is a patient portal or email you can use, be proactive and reach out to your doctor with your questions. If you’re in the USA, patients very much have to actively navigate this stuff, and advocate for themselves. Your doctor might give you a pamphlet or booklet. Read it.
My doctor has given me all sorts of info on it. I was looking for more first hand account kinds of things.
I have a friend whos wife has had it for decades. She takes Hydroxychloroquine and has almost no symptoms except unwanted weight loss. I helped her get some Cannabis gummies and now she maintains a good average weight and she was able to keep her job. Its better to know you have and and take it on then to wonder what’s the matter.
I was put on hydroxychloroquine a few months ago and it’s great, but having a formal diagnosis now is making it scary.
I’ve been on hydroxochloroquine for over a decade. Other than having to increase the frequency of opthalmologist appointments the longer I’m on it, it’s done nothing but improve my life.
Sorry for the misunderstanding.
You’re good. I appreciate the advice. :)
Oh I didn’t know Seal had lupus, but he’s awesome!
But did you know, that when it snows, my eyes become large and the light that you shine can’t be seen?
Sorry, couldn’t resist. I like him, too.
BAYBAY!
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.
I have a friend that was diagnosed with lupus as a young kid. When they were a teenager, their father was able to give them a kidney. This improved their situation drastically, and now they are a parent.
Lupus Nephritis is not as common. Thankfully we don’t all have to worry about our kidneys. Glad your friend is doing well now.
Can’t speak first hand but someone I know has it. Medication and some lifestyle changes keep it manageable for them. I don’t mean to lighten the weight of it too much, but I wish you the best.
As someone with Lupus I can echo this. Now that you know and can get tailored treatment it’s the start of getting better not worse.
