Just Started Being Treated for Systemic Lupus.....Suggestions?

I had drug-induced lupus from 1985 to 1995; then it went into remission. I actually went to the Mayo Clinic at the time; I had been overmedicated by a neurologist,
Have you looked at HealthUnlocked.com? They do have an active Lupus group. I wish I could offer more info...but they can. My best💞

Grammy82, Thank you so much sweet lady. I will look up the Healthunlocked.com. I am so glad that you are in remission. Meds are a double edge sword aren't they? Hugs & Prayers.....

They sure are and that's what helps us all with forums like this. At least you know you are never alone. I hope you gather some great info!!💞

@covidstinks2023 I'm sorry to hear you are being treated for Systemic Lupus. It sure is a sneaky disease, definitely.

Back in 1988 I was diagnosed with Systemic Lupus, and have been monitored off and on since then. Of course, being an overachiever, my body wouldn't stop there, and so fibromyalgia, gout, arthritis, end stage kidney disease and blood cancer have all joined the carousel. The kidney disease was thought to be a manifestation of the lupus, until specific testing including a biopsy in 2015 ruled that out.

As for how I manage the lupus, aiming for as stress-free as possible is critical. As you know, lupus can manifest in so many ways. For me, it is joint pain and aches, plus hyper sensitivity to the sun. Sunscreen everyday, plus tinted windows on my car, help. Being mindful of watching what I eat, to not rile up any of my conditions, helps.

It seems to me, that many who have had active Covid, have developed health concerns. It may very well be that those concerns were already just lurking below the surface, and a suppressed immune system that happened with Covid, brought issues to an active phase.
Ginger

Thank you for your kind, realistic, encouraging words! Hugs & Prayers to you....

Ooooo, I know this one! It sounds an awful lot like you have fallen into the same category as me- undifferentiated connective tissue disease. It’s a nebulous term/condition that usually means that the person has a positive ANA and various symptoms of connective tissue diseases (lupus, scleroderma, Sjögren’s, dermatomyositis). But…. and here is the tricky part… the person doesn’t have enough symptoms or positive test results to say that it’s definitely one of those conditions I listed above. Sometimes it’s called “probable lupus” or “possible lupus”. With a positive dsDNA antibody though… that’s usually pretty good evidence to point to lupus.
The good news (I think) is that regardless whether you and your provider call it lupus, probable lupus, early lupus, or undifferentiated connective tissue disease- the treatments are all the same.

I started Plaquenil just about 2 months ago and I would say cautiously that I feel somewhat better. Mostly a decrease in amount of time I have joint pain and maybe(?) fewer days where I feel fatigued so much that it’s like I was hit by a truck.

As for COVID triggering your autoimmune dysfunction? Totally. Immune disorders are complex and there has to be some combination of genetic predisposition plus triggering events to set off the dysfunction. Looking back (hindsight is always helpful) I can point to 2 different times in 2019 that I think may have contributed to developing autoimmune dysfunction. One was a nasty GI bug that landed me in the ER (first time in my life!) with terrible cramping pain, and it turned out that my liver enzymes were elevated from it too. Then I also got pityriasis rosea that year - which is thought to maybe be viral related, maybe?

Suffice to say: yes, triggering events/infections are real.

Kudos on the autoimmune diet!! Let us know what your experience is. I am just not disciplined enough at this point in my life for that, so I am trying to muster the motivation to start small with cutting refined/processed foods first.

Take a gander at my post on undifferentiated connective tissue disease- I do not have a crystal ball, but I’m reviewing medical literature it seems like some people have symptoms resolve, some progress to a full diagnosis (like lupus), but most end up holding steady in a not-quite-lupus-but-definitely-autoimmune condition.

Your 'not-quite-but-definitely-autoimmune terminology is what I call.... picturesque speech!! It conjures up many images in my mind...ERs, doctor's offices, labs, and the inevitable head scratching.

Then we have that Ah-ha moment and a diagnosis that sometimes comes late...but can always be managed, though it may take some time.

Your attitude is awesome and I think our mental attitude is so vital for managing these types of diseases. The physical is so unpredictable, but by reinforcing each other and researching but verifying....we have some measure of control.

If I were a betting woman (can't afford to lose much $$ at 82yo) I feel confident in time, they will find the connection between Covid~ the covid vaccine ~and autoimmune illnesses. Right now, I think the labs are too busy to look back while they try to combat what may be next. Plus, let's hope a considerable amount of time is going into research and approval of new meds.

Great input, thanks. 💞

@covidstinks2023, you may also be interested in this related discussion:
- Anyone with lupus or SLE: How do you manage your condition?: https://connect.mayoclinic.org/discussion/sle/

Thank you Colleen so much! Hugs....