Hi Lisa,
I’m sorry to hear you’re so ill now (and your symptons now sound more specific to lupus with the ulcers…) It’s a shame Plaquenil didn’t work well for you, since it’s one of the only ones we have that doesn’t carry much scarier risks of complications and harmful side effects! I have been on it 3 months now and am just starting to see benefits, and it does also make me feel a bit ill, so I take it at night and sleep it off. Sometimes I still feel bad from it for the first few hours of my day, but it’s an improvement compared to uncontrolled lupus, since I usually do better the rest of the day after that! It can also contribute to hair loss, though, as I didn’t have any loss before it and now my hair is noticeably thinning out even though I don’t lose clumps. Maybe you can have them check on vitamin deficiencies to help (since hair health can indicate some things are missing), as well as your thyroid levels. I have anti-thyroid antibodies as well, which is common for autoimmune sufferers, and require a low level of thyroid supplementation. It helps with energy levels, and thyroid optimization also relates to hair loss (though too low and too high can both cause it, just-right seems to help!)
Whether it’s Plaquenil or anything else, something needs to stop your flare in its tracks for now, and steroids are great for that. My rheumy used low-dose METHYLprednisolone (which he told me is a more active form that doesn’t demand as much of the liver while working more effectively, brand name Medrol.) The low dose really had no side effects, but perhaps you’ll need a bit more I wasn’t having symptoms as severe as yours all at once. I’m actually having more ulcers now than before treatment, but much less body pain, fatigue, skin rashes, etc… The ulcers really are horrible, though, taking away your ability to speak and eat while leaving you in constant pain! I’m not sure if any of the meds available are known to really help with them, although they tend to be indicative of overall disease activity. Starting with new disease-modifying long-term management after a reset from steroids (or whatever else you and your doctors think will work quickly) may help prevent more rounds of them just by staving off lupus activity in general. Unfortunately for us, periods of remission are no guarantee of avoiding further decline at any time, so I see those as a time to use the least-invasive but known-to-be-effective treatment so you aren’t stuck escalating when it rears its ugly head again!
Even though methotrexate is a rough one, when I was working on autoimmunity clinical research before getting sick (ironic, but helpful!) I met many patients (mostly with RA) who found Plaquenil intolerable and do well on methotrexate. It’s just optimization for you as an individual, but it sounds like your work requires avoiding too much immune-suppression. As far as I know, Plaquenil is really the only lupus or RA option that modifies the disease severity itself (versus just treating symptoms, like pain relievers, etc.) that doesn’t cause outright immunosuppression (you were only missing one s for that spelling 
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As far as natural “alternatives”, I look at them as layung a groundwork for the best function and wellness possible for your body–while you still treat the disease, so not really alternatives but rather optimizers There are vitamins/minerals thought to support or even restore functions that are lost in lupus or perhaps even underlie it as causes, and a few herbs that may be helpful for maintenance of immune balance with similar actions to some of the pharma drugs (not enough research to say, though!) Still, it seems your disease right now needs more aggressive management with better evidence of working. Maybe that could get you back to the point of vitamin balancing and herbal anti-inflammatory and anti-coagulant turmeric and the like, but keep in mind that any herbal remedy that actually works is doing something to your body with a drug property of some kind (original drugs come from herbs, barks and fungus!), and the pharmaceutical ones are far more researched and regulated. I still advocate using the most naturally supportive option available: nutrition! I have been eating an anti-inflammatory (low sat fat, rich in omegas, tons of a variety of fruits/veggies) diet for about 5 years, with more recent intolerances (including to dairy) that have further limited it in the past 3 years (do still eat a fair amount of wheat, because I need it as a protein source and can’t eat the gluten-free alternatives due to corn intolerance… I subscribe more to the variety principle than the such-and-such is evil philosophy, eating a lot of rice, quinoa and other grains as well! Indontveat meat though, other than the occasional lean poultry, since I stopped all meat but fish 10 yrs ago as a teen.) When I first adopted a stricter whole foods approach 5 years back, just like when I went lacto-ovo-peacatarian before, I noticed a slight improvement in the pain and fatigue I was having at the time, but it wasn’t potent enough of a change to prevent me from sliding down to fully diagnosable lupus this year! I stick to it, and plan to do some further vitamin optimization and possibly add turmeric when my medications stabilize, but at this point those are all ways of supporting the best natural function I can have while I accept that my body still needs outside management from stronger drugs. It is a serious disease, not just a general wellness issue…
Many blame the modern diet or lifestyle for causing lupus, even claim that reversing it is as simple as correcting those threats and imbalances for the body to heal itself… But the fact remains that our bodis are actually attacking themselves, and before the drug treatments we now have, people often suffered much more and more frequently died from it (which of course, still occurs.) I find the best and only truly holistic approach is to use any tools available that help and do the least harm, preferably based on evidence and sound biological reasoning but also paying attention to your own instincts and self-awareness, tailoring it to your own needs and reaction to it. It may be that for you methotrexate does fit the bill, but it may be you want to try again with milder interventions (like diet, lifestyle and Plaquenil) after calming down the current flare. It’s tough to make these calls… Moreover, tough living with such an unpredictable chronic disease! Best of luck to you sorting out what works for you!
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