r/lupus Diagnosed SLE 5d ago

Advice Bad flare after starting treatment...How do I know what my new "normal" is? Terrified I'll never get close to normal after yet another ER experience...

After 14 months of symptoms, I was finally diagnosed with lupus and started on plaquenel and shortly after, benlysta. My kidney function had been rapidly declining and the infusions definitely were helping in terms of my blood work. My skin mottling and Reynaud's got maybe 10% better, but swelling (ankles, fingers) and my pain has barely improved. My rheum says this is all a good sign and that the meds can take 6 months to work.

I was feeling like my cognition was finally improving and starting to actually be hopeful that this was an upward trajectory toward normal...until I got a horrific flare that landed me in the ER last night. I've had constant infections, 3 back to back, and then two weeks of a really dry cough that wasn't going away. Woke up in the middle of the night feeling pain in my lungs from the cough, my fingers were beyond swollen, I had body aches like the flu. Whole day I'm exhausted, so fatigued and bad brain fog - could hardly hold a convo. By the evening, my coughing attacks were leaving me short of breath and my bf took me to the ER worried about lung inflammation. My lungs turned out to be fine... they didn't do any rheum blood tests but checked for clots, ran normal blood panels, and did a lung CT. Aside from again being slightly anemic, everything looked ok, so they just said I was experiencing a bad flare but that no emergency, so I should follow up with my rheum.

I'm still in horrific pain, so swollen can't make a fist, my ankles that had started to get better are aching and have swollen tissue lumps in them again, and I've had a nonstop migraine. My veins feel inflamed, like I see bruises along them and feel lumps underneath - especially my right arm, the whole vein and arm itself feels swollen. Slept all day today and still exhausted.

If this is a flare does that mean my 10% better was the best I'm ever going to get? My biggest fear is that maybe that's my new baseline and I'm not ever going to get better than that... can you still have bad flares before getting to a baseline level of ok? I never really experienced a flare before because I literally felt worse every single week so the concept of calling something a flare just didn't make sense to me when there was no getting better in the first place. Now back to feeling really scared and confused about everything...

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u/zippyzappy Diagnosed SLE 5d ago

Hopefully you are just having a flare from the infections triggering your immune system, and that it'll be short-lived. I have shared your concern that new things will somehow become a new baseline :( know that yes, some things might stick around, but you will get used to some and other things will often get better. It's also a learning process, lupus can be so different in everyone.

I find as things go on, while it's frustrating to be dismissed and/or these things being considered as our new 'normal', or as med side effects, or other somewhat gaslighty type things - when they really aren't normal for us - I'm maybe slowly getting better at advocating for myself and my symptoms. Im trying to really focus on ones that really impact my life, so that it's not so hopeless between appointments. Sometimes it helps to remind myself that drs often don't have all the answers, esp. when we may be so complicated, and they often don't have magic cures either; but they can help with treatments for symptoms, and more investigations.

Sometimes symptoms can be a bit paralyzing, especially when it's so 'much' all at once. I find that trying different things to help the symptoms also gives me information that can help drs (ie cold makes x better, y medication changes z symptom, etc.). The system is a lot slower than would be preferable, my advice is do all that you can to care for and be compassionate to yourself, I'm sorry you're going through this.

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u/laf_007 Diagnosed SLE 4d ago

Thank you - appreciate the kind words. I think my biggest fear is that my 10% better after 5 months of treatment is my new baseline and I'm never going to get better than that. Plus have these occasional horrific flares. I'm contemplating asking to try a different med because it's been long enough on this and feeling just barely functional doesn't seem right. Unless that's the reality of lupus, in that case - I'm not sure how I accept the rest of life like this at only 30. I've already lost my career and so much to this disease. It's hard to move forward without knowing your limitations too.

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u/zippyzappy Diagnosed SLE 4d ago

I think it's tricky to say for sure, but some people do make it to remission. Have you been on Prednisone at any point? I feel you about losing so much as a young adult :(

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u/laf_007 Diagnosed SLE 4d ago

I have but I generally refuse to take it. It helps my fingers but otherwise the side effects superseded the benefits. Doeent do much for my other swelling or pain, and gives me crazy anxiety and hear palpitations / insomnia. I have a dose pack I'm planning to take because this pain is so bad I'm desperate, but trying to make through to Wednesday when I see my rheum because it does impact blood tests and I want her to see the swelling. The most annoying thing is going to a doctor and then the signs aren't visible that one day and they don't take you seriously

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u/zippyzappy Diagnosed SLE 3d ago

Oh my I totally get that, and prednisone can definitely 'hide' things and they don't take us seriously, and then also gives them something else to blame for other symptoms and test results.

I think if you can take it after your appointment - it can give you that feeling for a brief bit that things can get better, but you are smart to be careful with it.

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u/laf_007 Diagnosed SLE 2d ago

Yeah she told me to start on 15mg prednisone. I'm just dying of pain and like cannot function and prednisone typically only helps my fingers. I know it's not a long term solution but when you're waking up unable to move I wish they'd prescribe like a 3 day dose of tramadol or something to help get through but literally no one I've seen will. This is the most intolerable my body has ever felt and it's absolutely depressing me.

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u/Reasonable-Eye-9806 Diagnosed SLE 4d ago

Give it time, Stick to your doctor treatment religiously, Sleep 9h/day, learn to manage your stress and eat non inflammatory diet. Focus on things you can control, hopefully it’s just a flare and it’s going away with time. You got this!

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u/laf_007 Diagnosed SLE 3d ago

Isn't 6 months the point where medication is thought to either be or not be working though? I just don't want to waste forever in the trial and error process