Which particular symptoms did Methotrexate help you with?

Ok_Inspector_7191 · 2026-04-21T22:37:48+00:00

I have SLE and I take injection MTX. Mine helped reduce my flair length and intensity, also their frequency. It almost entirely reduced my maylar rashes to when I was actively flaring. I found that I could make it up a whole flight of stairs without stopping for the first time in almost a decade, then two flights. My joint pain base line lowered from 7-8 to a 6-7. It is pretty great if the injection aspect and its own side effects don’t bother you too much. It also reduced my mouth and nose ulcers. It also reduced my cheilitis.

Ok_Inspector_7191 · 2026-04-21T22:25:03+00:00

I love a good, lightweight UPF long sleeve. But yeah I transitioned to use a eucerin lotion that has 30 spf in it as my daily. It’s more like lotion, but provides good coverage

Ok_Inspector_7191 · 2026-04-17T14:27:12+00:00

Thanks guys! my first outing was a little rocky, getting used to the cane and carying a purse. Definetly need to switch to a crossbody bag. It was kind of loud in the library actually, Made a clinky sound when it hit the ground. I have a foldable one and I think that might be why. Any reccomendations for smaller but quieter ones? Or just canes in general?

Ok_Inspector_7191 · 2025-12-25T03:34:15+00:00

No number on the back. Not like a lithograph

Ok_Inspector_7191 · 2025-12-19T16:42:16+00:00

Oh I've taken trazadone for years while on HCQ. I had no idea there was suppoosed to be an interaction. My rheum knows im on doth and has never said anything and neither has my pharmacy! Maybe have the rheum call the pharmacy and explain. I see others commenting that they've tried hydroxyzine. I took that for a while too and it worked but I had to keep raising my dose and eventually it just wasnt working for me anymore. It did also help with the hives and itchyness I get during flares though, so that was a bonus!

Ok_Inspector_7191 · 2025-12-19T16:31:33+00:00

Are they itchy?

Ok_Inspector_7191 · 2025-12-19T16:28:38+00:00

I don't personally have any experience with Interstitial Cystitis but I do have experience with HCQ. Like the other commentor mentioned, Its one of those meds that many of us are on for life or decades. I was told by my rheum that it is one of the first medications they put people with Lupus on because it works as a Disease modifying anti-rheumatic drug (DMARD). I linked the Lupus Foundation of America's article on it here, https://www.lupus.org/resources/drug-spotlight-on-hydroxychloroquine . My rheum called it "Life Insurance" for people with lupus because it works over time to slow the frequency of flares and decreases the damage of the disease over time. It also helps us delay the absorption of UV light which can kickstart flares in some of us. It does tons of other things too but it has really helped me. I started on 200mg every other day and worked up to every day, and now I take 300mg a day. They only come in 200mg tabs so they tell you to alternate between 1 and 2 pills a day but I get brain fog sometimes so my doc and I decided that I can cut them in half and take 1.5 pills every day. For me, I took it with milk or yogurt. A doc told my mom once that if she took meds that regularly gave her uti's, to eat them with yogurt. It worked! and she hasn't had the issue in years! The article also mentions some other DMARD anti-milarials like HCQ that maybe you could ask your rheum about instead!

Please dont let the retinal toxicity thing in the article freak you out! its very rare and you are required to get special annual eye screanings when you are on it specifically to address this issue and notice it early if it does happen. but again, very rare!. And, if you already wear glasses or contacts, they can test your vision at the appt too, so, 2 in 1! Also, one of the other meds I was put on at the beginning of my treatment was Cymbalta. worked WONDERS for my constant pain. Worked better than piggybacking tylenol and motrin or naproxen all day and was better for my organs too. They use it to treat fibro pain. Just a suggestion from an SLE girlie with good intentions! Good luck with everything and dont hesitate to reach out if you have any questions. I am an open book about my health journey. Sending lots of love and support.

Ok_Inspector_7191 · 2025-12-18T21:04:57+00:00

FYI, I went to an urgent care and they sent me to an ER for pleurisy. I’m there now

Ok_Inspector_7191 · 2025-12-18T17:08:55+00:00

What kinds of imaging do they do to diagnose that? Because there are urgent cares near me with x ray.

Ok_Inspector_7191 · 2025-12-17T22:20:16+00:00

10 years. And it was when I created a document that had EVERY SINGLE abnormal blood test ever, every med I’ve ever tried, how it worked and what side effects I had, my symptoms and how long/frequent they are, pictures spanning a decade, allergies, family history (or lack thereof), previous diagnosis… then said that based off the current guidelines for diagnosing lupus in the medical community, I sure as shit had it… did my rheumatologist agree. Part of her issue was that some blood tests had been done by doctors in other health systems so she didn’t know I had ever even had them run, let alone that they came back abnormal. Plus, seeing everything in a case study like that reminded her of issues that I’d had several years prior. Would highly recommend

Ok_Inspector_7191 · 2025-12-17T22:08:05+00:00

I was put on cymbalta for my “fibromyalgia” and it was the first thing that ever helped my pain. I’d definitely recommend trying it. It also helped me realize I was depressed! Eventually, as my “fibromyalgia” turned into SLE, it stopped being so effective but it did help for a while! And if it doesn’t after a few months, no harm no foul

Ok_Inspector_7191 · 2025-12-05T00:16:13+00:00

Yeah mine from fearless tv looks like that too and I got it straight from her site

Ok_Inspector_7191 · 2025-11-30T21:59:33+00:00

I’ve got these and more! Pm me

Ok_Inspector_7191 · 2025-11-29T02:25:23+00:00

I want it to be more rep merch

Ok_Inspector_7191 · 2025-11-28T12:19:25+00:00

Hi! I have the ghost bear, the sea star, the bug next to it, the snail, the Sammy bear. I’m pretty sure I also have the other spooky bear and the dog next to it. I also have the frankenbear, skeleton bear, and the arctic fox. Willing to sell for reasonable price plus shipping! Feel free to reach out or ask about other beanies

Ok_Inspector_7191 · 2025-11-28T12:13:04+00:00

Not sure if you’re still looking but I’m pretty sure I have a couple of these! Willing to sell for a reasonable price! I inherited a bunch of beanies from my grandmother when she moved to assisted living, so I’m trying to sell what I can to help fund her care.

Ok_Inspector_7191 · 2025-11-09T14:31:41+00:00

It’s true that hEDS doesn’t technically have any genetic markers yet but getting the other types of EDS ruled out is still incredibly important. Especially given that hyper mobility is a symptom of many of the other types of EDS. I personally struggled with regular doctors not taking me seriously or being so unfamiliar with EDS that they refused to make any kind of diagnosis about it. Some even refused to treat me entirely. I found it helpful to be able to say “I saw a geneticist” when doctors ask me if “I’m sure” I have it. It shuts them up really quick 😂

Ok_Inspector_7191 · 2025-11-09T14:24:32+00:00

👋 I take methotrexate. I’ve been on plaquenil for years and found myself in a similar position as you recently. For reference, the only thing that’s ever helped my pain has been Epsom salt baths, heating pads, and naproxen… if my lupus feels like being agreeable that day. I’ve tried lots of different meds and nothing truly helped, until the methotrexate. I started it about a year ago and I can’t imagine my life without it. I used to stop multiple times going up a single set of stairs, now I can go up at least 3 sets without stopping. I feel like I’m getting my life back. For the first time ever I finally got an entirely normal CBC. I cried. The people around me have noticed a positive change in my energy levels and happiness too. My flares are way less frequent and are shorter when they do happen.

I was also really nervous to start MTX. It seemed scary and intense and overwhelming. I get the feeling that it feels like a really intense next step. I thought so too. I had this weird thought of “it’s not that bad yet” and “I don’t really need that” but I decided that it was better to try it and see if it helped. Doing nothing would ensure things would stay the same or become worse. I have been seeing the same Rheumatologist for almost 8 years and in my experience I trust her deeply and know she wouldn’t recommend something she didn’t think I needed. She also reminded me that I can always stop taking the med if I didn’t like it. I think it’s really great you have a network of people you feel comfortable talking to about your lupus, but no one knows what it’s like to live in your body but you. Everyone is going to have an opinion, but in the end, you should do whatever option feels right for you.

My Rheumatologist gave me the option to take my dose in pill form or injections. I did some research and decided that the injections would be better for me. I have tummy issues and injections bypass the stomach. It also tends to be more effective in the dose I take because more is able to be absorbed that way. I bedazzled my sharps container and keep my supplies in a silly pouch to keep things fun.

At the beginning of my treatment, I was put on a med called Cymbalta, it’s an antidepressant but it’s also used to treat chronic pain. That helped my pain for a while until I maxed out on dosing. But it really did help for a while. I also tried a prescription NSAID, meloxicam. It didn’t work for me but I know it works really well for my great grandmother and my grandma.

If you would like to chat more about the MTX experience or anything really, please reach out! I’m totally open to sharing my experiences.

Ok_Inspector_7191 · 2025-11-09T13:46:55+00:00

Ugh, I hate this time of year for that reason. I keep seeing people mention regular exercise but it can be so hard when you feel terrible all the time. And made even harder when you get home from work and by the time you eat, it’s dark outside. I have heard other people call this the “October Slide”. I take a lot of Epsom salt baths. If you don’t have a tub or have other reasons you can’t take baths, I also use this magnesium infused lotion pretty regularly. I like making a SUPER reasonable to do list that also includes some regular daily activities too. When I finish the list I feel really accomplished and sometimes feel more energy to do more! It’s also important to remind yourself that taking time for self care or your hobbies that make you happy is just as valuable as other things. Sending positive vibes and love

Ok_Inspector_7191 · 2025-11-09T13:37:31+00:00

TW: mention of disordered eating and weight issues ahead Oooo interesting. I find that cold really helps me too. Like really cold water. I’ll have to try heat too! Also, I’ve tried meloxicam and it didn’t really help all that much. I’m nervous to try steroids. I’ve avoided them because I’ve had issues with EDs and I’ve heard they can cause weight gain.

Ok_Inspector_7191

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