Tumid Lupus with SLE Symptoms?

I was diagnosised with Tumid lupus and sjogerns syndrome last year. Recently I have been having bad arthritis symptoms in my hands and knees along with increased fatigue. My lab work is negative for all lupus markers. I was wondering if anyone else has experienced sle symptoms with tumid lupus.

Hello @jessicanpayne,

I moved your discussion and combined it with this existing discussion (as @johnbishop suggested), as it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

You mentioned that, "My lab work is negative for all lupus markers." and a few members have shared similar findings. @seesawer, who started this conversation, also noted, "that only 5-10% of tumid lupus patients have SLE symptoms (and almost none of those have positive ANA)."
May I ask if your doctor has offered an explanation for the arthritis, or prescribed any treatment?

I was put on meloxicam last month and see my doctor again monday for worsening arthritis symptoms.

I was diagnosed with Tumid Lupus about 12 years ago. No other issues at that time beyond a rash that would not go away. About 6 years ago I noticed I was always in pain and started seeing a Rheumatologist. She stated I have undifferentiated connective tissue disease but is not sure what it is. Have been on multiple meds over the years and am willing to try to help you. I also have fatigue, stomach issues, brain for and other annoying problems.

Thank you for the help.I have the fatigue also. Do they think any of it may be because of the tumid lupus or the mix connective?

Honestly they are not sure right now since my markers are also negative. The only lab result that is abnormal for me is my ESR or SED rate which is in the 50s to 60s.

I was diagnosed with tumid lupus in 2017; diagnosis confirmed via biopsy. I also have fibromyalgia and osteoarthritis which come with symptoms of fatigue, joint pain, muscle spasms/pain, brain fog, and nerve pain to name a few...all of which are also symptoms of SLE but my labs so far have been negative for SLE. However my labs for ESR tend to be slightly abnormal as well as labs for MPV, and Vitamin D (very low...taking 50K units of Vitamin D per week).

Hello @efreeman, welcome to Connect. Thank you for sharing. I have polymyalgia rheumatica (PMR) which is currently in remission and also have osteoarthritis and small fiber PN. I have had different Sed rate (erythrocyte sedimentation rate) labs and my doctor took the time to explain what the test numbers mean. Mayo Clinic website has some good information on the test here:

Sed rate (erythrocyte sedimentation rate)
-- https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797

There are some conditions listed under the Accuracy of test results section that list some of the complicating factors for test results.

Have you found anything that helps you? Has your doctor recommended any treatments?

John

I have had tumid lupus for 10 years. I have been evaluated by a local dermatologist, another from St. Elizabeth's hospital, UW hospital Madison, WI, and Mayo Clinic Rochester MN. All took biopsies and confirmed diagnosis. Took requested meds for first couple of years with nothing working. In last year I have been diagnosed with polymyalgia rheumatica. preparing for a mri I was given prednisone for allergic reaction the the die used. The prednisone relieved the muscle pain of polymyalgia rheumatica and initially removed the tumid lupus spots when I was taking 30 mg or 20 mg/day. I have been decreasing the prednisone 1 mg/day each month. When I reached 7 mg/day my muscle aches from the polymyalgia rheumatica came back. I was then told to add 12.5 mg methotrexate per week and went back up to 10 mg prednisone per day. I have since decreased by 1 mg/day and am back down to 7 mg/day with the methotrexate weekly and the muscle aches seem to be in control. Will continue the 1mg/month decrease of the prednisone to see if I can get off completely. I have blood draws monthly to check my sed rate markers and they have remained in the acceptable range for the last 3 months. Hope this helps you with your troubles.

@billjan, thank you for sharing your experience and treatments. It is really helpful for those with personal experience to share their story. Thanks again.

John