Major pain

I have been dealing with lupus for almost a year now. I would like to know what medication most of you are taking to keep the disease from flaring. I also have crohns disease. I'm on remicade infusions every 6 weeks. But my lupus flares up every 4 to 5 weeks. I'm in severe pain til next infussion. My pain is in my hands neck elbows shoulders throat jaw and feet. Most days I have a migraine. I'm interested in knowing how this disease affects others. My pain is making a devastating impact on daily living and sleeping. My next appt with rheumatologist is Jan 19 2023. Right now I'm on the way to ER to get some pain relief

Hi Bucko, sorry to read that you are doing so poorly. I think if I were in your shoes I would be looking for a new rheumatologist, yours does not appear to be doing you any good. I don't understand why you haven't been put on a DMARD. In addition, I'm not sure at all as to how effective Remicade is for Lupus. I will do a forum search & see what I can find.

Please don't get upset over the 10 views, anyone can read the posts here at Healing Well without being a member, only a member can post here.

Give me a few minutes to check the archives.

I did a search in the archives & found a lot of members with crohns & UC that were diagnosed with Lupus in additional to their IBD, developed what was called "serum sickness" from Remicade. Have you had your antibodies levels checked recently, if not request your dr do a test before your next infusion.

In all honesty you can take Plaquenil with Remicade, it's a DMARD. I took it when I got drug induced Lupus. I was responding to well to Remicade for my crohns, both my gi & rheumatologist agreed to adding it to the mix. I stayed on it for a year & ended up going off of both medications. Granted, my situation was different from yours, but you need help.

Bucko,

When you posted earlier this year about Remicade, I advised you that it is NOT a lupus treatment -- it is known to CAUSE lupus symptoms. Have you ever addressed that with your rheumatologist? I am unclear which Dr is prescribing it, but I think you need to investigate this more fully.

https://www.medicalnewstoday.com/articles/remicade#for-professionals

Have you been tested against the checklist of 11 symptoms used for diagnosing Lupus? I ask because the pain you describe isn't a typical Lupus flare, and you haven't mentioned other Lupus symptoms.

Typically, four or more of the following eleven criteria must be present to make a diagnosis of Systemic Lupus.

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (non-erosive) in two or more joints, along with tenderness, swelling, or effusion. With non-erosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurological disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.

And extreme fatigue brain fog

Well I was seen in three ER last night. My blood pressure was high so they did an EKG. I guess results were ok cause dr never commented on them. I was given prednisone and dilaudid. I feel some better today. I guess more days of pred should help.