Another failed treatment and new additions to my team!

So I’ve been on cyclosporine for almost 2 months now and I know for sure it’s not helping:/ any drug that has ever put even a little dent in my disease activity would help my breathing within the first week and that hasn’t happened … now I’m on oxygen almost 24/7 . I am starting Plavix tomorrow …been on baby asprin for 2 1/2 years but am always getting clumps of painful superficial blood clots in my left leg and my blood was as thick as honey when I was hospitalized a couple of weeks ago. My rhuemy thinks it might help my oxygenation too. I had my first of 4 sylasaic acid injections in my knee with my new pain management/anesthesiologist last Friday. It’s supposed to help rejuvenation the synovial fluid in my joint so we’ll see?? He’ll be overseeing my orthopedic injuries since im not a candidate for surgical repair. My primary is sending my to a new pulmonologist because my old one completely dropped the ball ! apparently he’s either hard of hearing or just lazy because hes the only one that can’t hear that my lungs are now chronically tight, cracking, weezing or just completed hyperventilated lol… fortunately my primary has picked up his slack and got me the oxygen I desperately needed because now my labs are reflecting im not oxygenating…My RBC, hemoglobin and hematocrit are all consistently abnormally low now. I used to NEVER look at my labs but now I look in hopes that they’ve become normal again but no such luck yet:/ I saw a new GI last week, he was super nice and smart:) I’ll have endoscopy early next month because im still suffering from nausea and throwing up bile after my gallbladder removal but on the positive it’s half as bad as before! I have a bilaterally shoulder MRI tomorrow and a lower body bone density scan next week so im staying busy but I always make time for so fun too!

You are a picture of an enduring spirit. I hope I can be as string as you. Thank you

Yes,all the details of the many lovely effects of this disease. The fun part, none of us know what we are going to get. Just wait n see. Staying positive can help n having a sense of humor. Day to day, just take it as it comes. Keep the Faith!!

So glad you are still able to have fun...Life is still a gift no matter how challenging. Sending healing images you way.

I can be in the middle of a flare-up with lupus flare on face neck breast and abdomen...and my Lab work will show normal.

Doctors are not suppose to treat the lab report but the patient. Hope you soon find what works best for you.

When my lungs were involved...they wanted to put me on a C pap machine. The tech that put it on me and then turned

it on. (The c pap manufacture told me you always turn it on and then put it on so no big backup of pressure all at once.) I felt a terrible stab in my chest. Turns out she blew the left lower lobe of my lung out. She tersely told me, "Well some people just can't use these machines."

Anyhow when I had lung issues I joined a community chorus a block from my house. There was no audition so I thought I could fake it when I could not keep up...I am NOT a singer. Anyhow, after about 2 weeks I was able to keep breathing got better...and I never looked back. Still have other issues...but this one eventually cleared.

Do any of you have a clue to what is causing Lupus? Have you ever heard an explanation? What do you think might be causing it? What do you think helps...besides meds? Thanks for all the info people share here. Dee