I am allergic to the binder or something in Hydroxychloroquine. I take Plaquenil for SLE, brand name only as result.

I have been buying from an online Canadian pharmacy because insurance does not cover brand name Plaquenil and it is very expensive in the United States.

In the last month, the Canadian online pharmacy told me that it is not shipping to the United States because of tariffs and scarcity of supply.

My rheumatologist suggested either chloroquine or that I travel to Canada to purchase a 90- day supply of brand name Plaquenil.

Has anyone had this experience recently, and do you have a better solution? Traveling to Canada every three months seems like a lot and
very expensive.

These common side effects of chloroquine are daunting and I am already a chronic migraine sufferer, so anything to add to my headache burden is not acceptable. I’m worried about the gastrointestinal side effects as well as damage to the eyes, just to name a few. I have had no side effects on Plaquenil for 10 years.

Thank you for sharing your experience.

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i can’t help but have this bittersweet feeling towards my life and what it’s brought me. i’ve been diagnosed with lupus nephritis for about a year now and on top of that i also have anxiety and mild depression m. recently i’ve been having a lot of stomach issues and convinced that i have ibs as well. on top of that, my bf of a year and a half cheated on me after everything we have had together. he also reassured me and made me feel comforted and now he’s no longer in my life. thankfully i have a loving best friend and the mercy,grace and love of Jesus, but how can i not be a little deteriorated after all of this. I love who i am and i want to keep striving to be the best version which is why im still hopeful for my future, but i still can’t help but feel a sense of weight on me that nothing is ever going to be how i hope. just wanted to come and vent. any advice or encouragement would be lovely and appreciated. thank you for kind listening ears 😊

I posted a few months ago about experiencing pressure to stop my ADA accommodations at work, which have allowed me to have a hybrid work schedule as a university administrator battling multiple autoimmune diseases, including lupus.

I have an update.

After spending most of the summer in the office to try to please leadership, I am now being told I am being involuntarily transferred because my department cannot accommodate my schedule any longer. They did not go through the interactive process and try to give me other options. They just told me I’m being transferred to a different department to do a job that’s different than the field I was educated in or worked in for over a decade. They said it’s fair because it’s the same pay.

I am so heartbroken and upset. I have a history of only positive performance feedback. I am very passionate about my career, and I cared about this institution deeply, and I feel so disrespected and wronged. I have worked so hard to get to this specific position and they have no understanding of what that was like as a woman of color with multiple chronic conditions and organ involvement.

I have hired an attorney to help me navigate this. But I wanted to share with this group in case others have navigated disability discrimination at work.

Hi all,

I was diagnosed in March after struggling with symptoms for about 8 years. I was previously diagnosed with fibromyalgia and chronic fatigue syndrome, and also chronic migraines.

I was put in HCQ and azathioprine and it has been wonderful for most of my symptoms. It’s also been helpful for my migraines and stomach issues as well. But the one thing that has not stopped is the fatigue. I feel like most days I am just defeated bc I am so tired.

I also want to say that I am a PhD student in my last year so I have been stressed about my dissertation and applying for jobs and potentially moving, and I’ve been feeling better so I’ve been trying to work out and that sometimes causes flare ups for me.

Idk I just feel defeated right now and I am not sure what to do or feel. It’s been so hard talking about this with ppl that don’t have lupus bc they just don’t understand and I am tired of the “just be positive trope” because I am positive… but I’m just tired.

Any suggestions or advice is welcomed!

This is how I imagine my lupus (when it’s under control. flare-up lupus is a whole ass anime villain lol). I like how it turned out and thought to share it with yall :)

Hi lupus fam. 38 y/o female here. I recently had a BAD flare in July (Florida), and I’m trying to figure out everything that was a possible trigger. Two definite triggers were: heat exposure and sunlight / uv (general sunlight plus nail polish uv light exposure). I also believe that the red light therapy bed as well as topical estrogen cream may have also been triggers. I stopped red light therapy. However, I’m split on whether to try estrogen cream again, as I’d only been on it for 2 months (twice a week) before the flare, and it worked SO well (dryness relief) UNTIL the flare. Has anyone notificed worsening OR on the opposite spectrum, had relief from flares with topical estrogen cream?

Hey, so I was just diagnosed with lupus 2 weeks ago. The rheumatologist said I'm a "textbook case of lupus" and then told me to read up on it on the arthritis foundation website because I wouldn't remember a thing he said because all I would be thinking was "OMG, I have lupus, I'm going to die" which I hadn't been before he said that.

He started me on HCQ and I'm on Diclofenac for inflammation. My PCP commented that I'm on a really low dose of HCQ, so maybe that's why I don't feel any different? I bruise so easily, I look like a battered wife from the hips down.

I'm not sure what I'm asking for, for info and links, and advice, I guess. I'm overwhelmed. In one way, I'm really glad to finally have a diagnosis after 20+ years of this. At the same time, I have no idea where to go from here?

I have had this sore in my nose for at least 2 weeks now. I used my ear camera to get a picture, so the black that you see on the right is the tip of the ear scoop. Does this warrant a visit to my rheumatologist? ENT?

I’ve been on Sotyktu for over a month for cutaneous lupus. My skin is horrible! It’s gotten so much worse. Dr said to give it a chance. Now I have an upper respiratory thing which I understand is also a side effect. Anyone else in Sotyktu that can give any hope? TIA

Hi all!

Been treated for class 5 lupus in the kidneys I was on cellcept but switched to tacrolimus due to copping to many side effects and a 60mg steroid taper.

Next week I'll be down to maintenance dose of 7.5mg of prednisone, but I've had persistent pressure and puffiness around and behind the eyes every day its giving me constant fatigue and lethargic feeling! Anyone here who's had similar problem can give some insight on how long this lasts??

I've been to an optomistrist i am having a steroid reaction, but within acceptable limits...

i was diagnosed with UCTD two years ago but my latest testing shows my Chromatin antibodies are rising. I have anti-sm antibodies, but they have not risen. My homogeneous pattern changed to speckled..

Raynaud’s. some other stuff, but negative RNP and Anti-dsDNA.

i have two months before my next Rheumatologist appointment and I am having so much fear and anxiety and no way to ask what any of this means.

I know my 4th episode of mono triggered all this and that I have the genetic marker for EBV turning into SLE. That doesn’t mean it will.

This can all still fall into the wheelhouse of UCTD right? The chromatin rising, pattern changing and low AST on my hepatic panel have me SO SCARED.

what should i be doing???

just curious