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A MyLupusTeam Member asked a question πŸ’­
Culpeper, VA

Cutaneous lupus and mix connective tissue. Cant take nsaids, can't take prednisone, can't take methotrexate
Now they may have to take me off hydroxychloroquine, which helps joint pain. Is there anything else that will help pain. Tizanidine helps muscle pain but puts me to sleep. primary says get a rheumatologist but they only want sle patients. They just want to send me to the dermatologist who doesn't help the pain. Cutaneous lupus, Ulcerative colitis, hashimoto's thyroid, Raynauds,… read more

September 18
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A MyLupusTeam Member

Was on gabapentin for years it became ineffective. I guess this is the problem with old age.😒

September 19
A MyLupusTeam Member

Thanks for the hug, need all that i can get!😊

September 19
A MyLupusTeam Member

Carolyn, when my joints are swollen and painful, I find immersing them in cold/ice water very helpful. Have you tried that? I'm sorry you're so miserable and have so few options. You may also want to ask about gabapentin if you haven't tried it, too.😘

September 19
A MyLupusTeam Member

Tried all of these... I'd be good if I could just stay in a hot shower all day...but then my skin would erupt..

September 18
MyLupusTeam

Managing pain with so many limitations on medications is genuinely tough, and it's completely understandable to feel frustrated β€” especially when it feels like you're being passed around between specialists. With kidney disease stage 3, many common pain relievers aren't safe, which really does narrow things down. But there Show Full Answer

Managing pain with so many limitations on medications is genuinely tough, and it's completely understandable to feel frustrated β€” especially when it feels like you're being passed around between specialists. With kidney disease stage 3, many common pain relievers aren't safe, which really does narrow things down. But there are still some options worth exploring. Here are some pain management approaches that may still be available to you, but always check with your doctor first given your kidney disease and other conditions:

- Acetaminophen β€” often considered a safer alternative for people with kidney concerns when used occasionally
- Topical pain relief β€” creams, gels, or lidocaine patches applied directly to painful areas avoid systemic effects
- Immunosuppressants β€” medications like azathioprine (Imuran) or belimumab (Benlysta) may help control lupus activity and reduce pain at the source
- Physical therapy β€” helps strengthen muscles, reduce joint stress, and improve movement without medication
- Heat therapy β€” applying heat to painful joints at home can offer real relief during flares
- Low-impact exercise β€” swimming, tai chi, or gentle stretching when disease activity is low can reduce pain over time On the rheumatologist issue β€” it may be worth asking your primary care doctor for a referral specifically noting mixed connective tissue disease, as some rheumatologists do treat beyond SLE. Persistence really does matter here. A pain management specialist could also be a valuable addition to your care team, especially given how complex your situation is.

September 18

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