I’ve been on Azathioprine for years and recently this year got put on Cellcept, but now my doctor is recommending as my only option left that I start benlysta. The most frustrating thing is that this is the first flare up I’ve had in years and my doctor is so quick to putting me on the most aggressive and highest commission based medicine. In the last 2 years I’ve gotten hospitalized three times (pneumonia, sepsis, meningitis) and in the last 3 months I’ve gotten the stomach flu, Covid and some viral flu that morphed into a lupus flare. I’m not even getting sick with my lupus. It’s like other ..read more

I’m having such a hard time. My joint pain hasn’t been too bad, not as much as it usually is. But my elbows and hands are hot and inflamed and painful. I have a constant headache, and I’m SO TIRED that I’m in bed all day. My face skin is almost constantly feverish, and I feel like I have the flu most of the day. I’m just so tired. The longer I’m in the light, the worse the headaches get. My eyes are so dry and blurry. My head is so foggy I feel like nothing is real. I’m heading into my finals week at school. I have class from 9:30-1:50 tomorrow, with nearly an hour drive through a horrendous ..read more

I don’t know if I need to put trigger warnings for posts because I am new to the forum and newly diagnosed, but I am mentioning suicidal thoughts here, so please be advised on reading. This is just to vent, and anyone who might relate can read this. I posted about a week ago on this forum that I finally have my SLE diagnosis after two years. I’m now on a bunch of medication, including 60mg of prednisone a day to fight off the lupus active in my kidneys and skin. But, what I went through this weekend felt like just pure hell. I started having “innocent” hallucinations and dreams. I was lucid d ..read more

Today, in the House of Commons, Tony Van Bynen talked about lupus, bringing much needed attention! He also shouted out Lupus Canada, which (at least for me) has been a wonderful resource. He also declared that the government has provided over $100,000 to Lupus Canada to continue supporting their mission. Here is the link to the streaming of the House of Commons! Timestamp: 14:08:16. https://parlvu.parl.gc.ca/Harmony/en/PowerBrowser/PowerBrowserV2/20231204/-1/40478?Language=English&Stream=Video Just wanted to spread the news. It cheered me up, so I hope it cheers all you up too! ​ submitt ..read more

Has anyone else experienced the allergic(?) reactions to prednisone other than the long term side effects? My rheumatologist prescribed it for the first time to calm down my symptoms, but each time I took the pills, I got more hives than the day before. On top of being jittery the whole day I was not able to sleep the entire night, and my whole body was on fire the morning after. Though I am not sure if it's because of the medication or the lack of sleep, since I usually get those when I don't have a full night's sleep at night. So after the second day, I called the rheum, and he told me to s ..read more

Apologies if this is a little venty, I’m mostly looking for advice so that’s what I tagged it. I’ve tried a few over the counter NSAIDs, but all either barely helped or gave me horrid side effects. I’m holding out hope that the rheumatologist I’m seeing soon will be able to give me something that can help long term, but for now, I’m relying on rest, exercise, and the occasional epsom salt bath to help me cope with my symptoms. Even with those, I’m having a really hard time with the fatigue. The muscle and joint pain are much worse than they used to be, but I’ve been dealing with them in one f ..read more

I just want to vent my frustrations because I’m so sick this week and I’m so tired of it. I’ve been sick for about 3 months now, really severely. The joint pain has been what I’ve been focusing on most with my doctor, as it’s been so severe that I am sometimes bedbound, have lost most of my muscle strength, and have difficulty walking and standing. I’ve been on methotrexate for about 5 weeks now, and steroids and high dose NSAIDs for longer. I’ve had a few pretty good joint pain days. By “pretty good”- it’s good for me. I’m still in pain, I hobble around, have trouble with the stairs, and my ..read more

Hi everyone just got back from an appointment and am a little bummed. My symptoms have improved a lot since I continued MTX but after an assessment my rheum discovered fluid in my left knee. This along with other joint symptoms (albeit mild and occasional) she deduced I was not in remission. She wants me to consider a biologic. She suggested Actemra as she doesn’t think TNF meds would be a good idea even though chances are relatively low it could trigger positive ANA and she is still trying to observe the natural process of my disease. Does anyone have any experience on Actemra? Or with infus ..read more

Don’t you just love when your internal furnace is broken and your body can’t regulate its own temp?!? What are your favorite ways to keep warm besides turning the heat up, using heated blankets, adding layers of clothing. submitted by /u/AnybodyGlum8748 [visit reddit] [comments ..read more

Title says it all. Fuck. It was a 3 month wait to get into this one and I'd JUST started trusting her. Wtf. submitted by /u/andra-moi-ennepe [visit reddit] [comments ..read more