Do U Have Bad Headaches?

Head throbbing Tylenol want stop it

How Do You Manage Flares Between Appointments? I Don't Meet The New Rheumatologist For 11 More Days.

I just finished a course of steroids and I am allergic to NSAID. Tylenol is a cruel joke, at this point, and I feel like I might not make it 11 days. I feel awful.

What Has Been Your Experience With Benlysta?

My Dr had prescribed Benlysta as my condition has continued to deteriorate. I was wondering if others here have or are taking it and if it helps or not. If it did help how long did you take it b4 u saw results? Anyone experience side effects and if so what were they?

Pain Control

Can everyone tell me what they use for pain control? My kidneys aren’t good (so no NSAIDS 😭) and this leg, shoulder, and hand pain is starting to really get to me. Suggestions?

Eternally grateful,
Future Ghost

Has Anyone Tried Any Of The CBD Products?

I am taking plaquenil for the Lupus, Duloxetine for the fibromyalgia and Tylenol for the aches, but with this cold wet weather nothing is working very well. I have broken 4 bones in a 4-month period and diagnosed with osteopenia. Just wonder if anyone has had any luck with CBD?

I Had My Sixth Orencia Infusion Today. This Is The First Time That I Broke Out With A Red Rash At The Injection Site. Is This Normal?

Has Anyone Else Ever Had A Reaction To Benlysta Or COVID Vaccines Called Serum Sickness Or Serum Sickness Like Syndrome (SSLS)?

After having a bad reaction to my first COVID vaccine (and all of the subsequent boosters) I contacted the FDA and after a couple of years finally got a possible answer. Monoclonal antibodies (including the ones in Benlysta) can "very rarely" (don't know what that means) cause serum sickness in which the body created antibodies to attack the monoclonal antibodies (which isn't a new concept for lupus patients, our T and B cells hate us with a passion)
I was advised to get an antibody test to… read more

Anyone Having Headaches, Pretty Much All The Time?

I've been having near-constant headaches. Sometimes they're mild, other times I can barely stand it. Tylenol hardly touches them, and I can't take NSAIDs due to blood thinners for APS. I had a CT on Friday which was clear, thank goodness. Next f/u with neuro is only in March. Is anyone else dealing with constant mild-to-severe headaches?

Anyone Had Infusions Before? Any Advice 😭

How Does The Combination Of Plaquenil And Methotrexate Make You Feel?

After 8 weeks of methotrexate, I was hoping to feel relief from joint pain, fatigue. Have been on plaquenil for almost a year. Maybe I was just too hopeful?