I was just admitted yesterday to the hospital and I need some advice. A few days ago I started getting achy and fatigued, which are my typical symptoms when I'm getting a flare. However, I also was getting a pretty bad headache, especially in the back of my head and down my neck which is new. On Thursday night I took my temp and it was 99.5 (which is also common for me when having a flare). By 11pm on Thursday I was in severe pain, horrible headache and neck pain, horrible joint pain everywhere, couldn't get comfortable. By Friday morning I was having really bad chills, could not get warm. Took my temp and it was 101. Took two Motrin and tried to sleep. Still had horrible chills. Took my temp and hour later and it was 102.8. Seriously felt like I was dying. Went to the ER. By this point I could barely respond. They took blood cultures, urine sample, ct of head and X-Rayy of chest to look for infection, all negative. Then they did a lumbar puncture to test for viral meningitis, also negative.
So, anyone have any idea if this could just be a bad lupus flare? The doctor here really don't know anything about lupus, and of course being the weekend can't call my rheumatologist. Any other tests that you can think of? I wish they would just give me some steroids to see if that takes care of everything.
Oh, one more question...I had started Imuran about 3 weeks ago. They are still trying to give me it in the hospital. My rheumatologist had told me before not to take it if I have a fever or infection. I am right in refusing to take it right now?
Just so frustrated! I wish they had rheumatologist in the hospital. Thanks for any advice!
I would continue the Imuran until you are able to contact your rheumatologist and I also agree that they should do a MRI that also includes a MRV, of your head, to rule out a possible blood clot. I had nearly the same symptoms for a month before they did this test and found the problem. But everyone is different and perhaps these tests will show what’s really going on. Sending prayers and good thoughts for a quick recovery, and remember you are never alone!
I am sorry this happened. This is probably far fetched but about 15 years ago i had a tick on me and removed it the next day i was in the hospital it was a reaction from the bite. I hope you get better soon and they can figure out what caused it. Most rhuemy doctors have some one on call have the hospital dr call your rhuemy even if they do not have hospital privilages most will still speak to another doctor.
I agree. They should DEFINITELY call your Rheumatologist. Did they do a CRP? This is more than a flare. Are you staying away fr5om immune boosting foods (like sprouts) and over the counter supplements like Vitamin C. They will cause a flare. Our system are basically hyperimmune that is why it attacks itself. They definitely need to call your Rheumatologist. With this high of a fever it is more than a flare.
I had an episode exactly like yours but fever went to 104. I have to blame it on lupus because no other test results were positive. It passed in a few days. Since you are not supposed to take Imuran with a fever or infection, I think you should refuse it. It makes your body unable to fight off an infection, so whatever you have could get worse.It could be an infection that they just have not been able to grow and ID in the lab. That takes a few days.I hope it passes as quickly as mine did. I think it was 4 days.
Could Imuran be causing this? Worth researching Imuran side effects online.
Are they looking at SED rate and CRP to check on inflammation? They don’t normally test for fungal infections but may be worth mentioning . So glad it looks like they have ruled out meningitis? Also lupus patients can have vasculitis that can apparently be associated with fever in addition to serositis. Not sure about how high a fever you can get with these but worth a question.
I am certainly not a medical dr. But maybe you could ask about some of these. Prayers and positive thoughts coming your way.
You can have an infectious disease specialist look over your case- they are also somewhat familiar with the autoimmune diseases in addition to the various infectious agents out there and they also deal with infections for people on immune suppressant therapy.
Doesn't your Rhuemy have a 24hour emergency call number? I would not take the Imuran right now, without talking to a specialist. But all the symptoms could just be flare related. Hopefully not a reaction to the Imuran. I was on Methotrexate for three weeks before my body decided it didn't like it, so I know bad reactions aren't always immediate. Good luck, and feel better.
Update: hospitalist came in, got a contact number for my rheumatologist, and tried to get a hold of her, no luck. Unfortunately rheumatologist in my area don't come to the hospital. My doctor did order a MRI and some prednisone and antibiotics. After he left I started feeling even worse. My temp started going up 0.5 degrees every 30 minutes despite being on Motrin and Tylenol. Once it hit 103 they ordered a cooling blanket. My temp is now 100.7. Dr. Also mentioned by hub was dropping, down to 10.9 now. There are was lymphocytes in my fluid from the lumbar puncture. My doctor did finally order a sed rate, results not back yet. I do have a neurologist following me now also. Thank you all for your suggestions and encouragement.
That's kind of baffling because even with an infection, sed rate rises. Yours is as mysterious as mine was, but yours could be side effect of Imuran. Mine wasn't.
And to respond to your symptoms. …the same thing happened to me months ago… they told me i had pneumonia. . Made me stay in hospital over night then sent me home. …having Lupus is draining… and unclear at times… bit we all will get through this… Together. Best of wishes…Tae…
I have to say it sounds exactly like the viral meningitis in had last year! The lumbar puncture I had came back with lymphocytes, as far as I’m aware it only tests positive for bacterial meningitis though? I was in hospital for a/week on iv antibiotics and morphine, honestly thought I was going to die. BTW I’m in theUK and my useless rheumatologist at the time also ccouldn’t be contacted. Needless to say I’ve changed rheumy now! Really wishing you better soon. I’d ask nthem again if it could be viral meningitis…
Hey Heidi! I’m sorry to hear your going through such a hard time right now. I was on imuran before and had to stop taking it. It gave me terrible side affects I can’t stand that stuff. I had headaches all over body and joint pain, sever fatigue, nausea, it also made a lot of my hair fall out and more. I think you are 100% correct by not taking it especially since you have a fever also. Lupus is so tricky and we have to try so many different meds until we find the right ones for use. In the mean time we feel like science experiments at least i do. I’m still trying to find out what works best for me and it’s been 5yrs. I was originally diagnosed with just Ra in 2006 so who knows how long I’ve really been dealing with lupus. Hang in there this is a long difficult journey but it’s so nice to have this support group and people that understand. Also there nothing wrong with getting a 2nd opinion on your treatment with another rheumatologist. You are in my prayers feel better soon and let us know how you are doing!