Life With Lupus

Symptom free anyone here?

Im just curious if anyone here is almost symptom free, as in pain? If you could share your stories I’d like to hear… wondering if the meds are worth it or you feel like you get completely immune to them eventually. I can’t find any med success stories online???

Hi. I have not had any pain related to lupus. Thank goodness (lucky me?). My lupus is mainly causing havoc in the kidneys and the heart. My flare ups have been with rashes all over the body. Currently I’m on Plaquenil and Coumadin as I have both SLE and lupus antiphospholipid.

thanks God bless hopefully he keeps you running😎

Hi Janelle,
I feel I’m almost symptom free. I have SLE & Raynauds Phenomenon. My flare lasted from April to early August. I had bad time with Prednisone, higher dose 60mg caused me to have a stroke so it was imperative to me to get off of it and I won’t try it again. So I’ve needed to find an alternate healing option. I had very painful ulcers under my fingernail beds. My doctor suggested Rituximaub infusion, although it is not approved for Lupus, it is for what my doctor put down as my diagnosis. I had two infusions, two weeks apart from each other. After the second infusion I noticed improvement in my fingers and within two weeks - ulcers were gone, THANK GOD! It also helped with arthritis pain for 3 months. It is an extremely expensive procedure, however. If I had not had my Health Savings Account type insurance, I would not have been able to get it. 80/20 insurance would have broken my piggy bank.
Aside from that, I try to keep myself as stress free as possible. I’ve changed my position at work from management to pencil pusher too.
Good luck to you!
Mamma Bear

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Wow that’s amazing how quickly that worked for you on a scale one to ten whats your pain level?

I am on Gabapentin for a variety of my symptoms, but it was first prescribed simply for my fibromyalgia pain. It has been the best thing I’ve been put on as far as effectiveness goes.
My lupus has developed into NPSLE so my symptoms during flares are mostly neurologic.

I am also on Plaquenil, CellCept, and Benlysta. Unfortunately my lupus is seeming to be more active no matter what drugs we throw at it. I’m looking into a wheelchair for when I’m in a flare.

Wow thanks for sharing. God bless you. How has cellcept helped you on a scale one to ten?

Only symptoms ive had was thinning hair. Achey joints and rashes. But plaqunil helped all that. Hair is still thinning though. Dont know if its meds or disease. Latest Dr appt blood tests showed no signs of any autoimmune disease. Im puzzled as well as Dr. is.Going to see rheumatologist soon. No symptoms hardly ever and i was diagnosed almost 15 years ago.

I was just recently diagnosed with lupus so i don’t really know what “limitations” or “disabilities” i will have later on when I have a flare up. The first time when i was diagnosed, i was immediately put into induced coma because of heart, brain and lung problems :confused: i underwent chemotherapy too. currently taking seizure medicines, steroids… that’s all i know, my mom handle my medicines

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Thanks for telling me how are u doing now?