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Autoimmune vs auto inflammatory disease
I am 52 years old and I started my initial testing after having pneumonia 8 months ago. I started having night sweats (had complete hysterectomy at age 41 on estrogen since no night sweats) spiking fever every afternoon temp ranging from 101-102. Fatigue and body aches. This was 2 weeks after completing initial antibiotics and prednisone. Primary care provider did another round of antibiotics for questionable atypical pneumonia and no improvement. Negative blood cultures and normal CBC. We did autoimmune testing Ana 1:640 rnp 1.5. After starting plaquenil, failing colchine, methotrexate starting leuflonimide and eventually simlandi my joint pain is better. Some testing was done for auto inflammatory and 1 gene was positive of unknown significance. I did see a rheumatologist at mayo recently he ordered labs and x-rays also an emg to be done in my home state. One lab in a cytokine panel showed high il-18 596. I will have follow up on this in a few weeks.
I feel frustrated and anxious. Is this the typical wait for response to hear results at follow up appointments only? Has anyone else had results like this and what are your diagnosis?
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Not sure I follow all your having done. But as a simple answer all lab results have a portal page for results. I never wait for my results. Discussing with the Dr can take months. Mayo, Sonora Quest, Lab Corp, Simon Med, Banner all post the results online. You can access by setting up an account.
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4 ReactionsHello @llwilliams73, Welcome to Connect. Waiting for responses for test results can be frustrating and definitely tends to make me anxious. Hoping you hear back soon. I did find some research that may help you learn a little more about the high IL-18 while you wait for members with experience to respond.
-- Pathogenic roles and diagnostic utility of interleukin-18 in autoinflammatory diseases:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2022.951535/full
You mentioned seeing a Mayo rheumatologist and he ordered the labs and tests to be done in your home state. Mayo Clinic patients normally have access to their patient portals which show the test results and may have additional information to explain the tests. If you haven't already setup your patient portal, here are the details on how to setup your portal -- https://www.mayoclinichealthsystem.org/hometown-health/featured-topic/connect-to-the-care-you-need-with-patient-online-services.
Are you able to send a message to your Mayo rheumatologist or care team using the patient portal?
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5 ReactionsThank you I have a follow up Jan 9th and did hear that I will get results at that time.
I appreciate the article it had some good information in it.
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1 Reaction@johnbishop Thank you for the article it had some good information
I have a follow up on the 9th and did get a message that results will be discussed at that time. I had my labs and x-rays done at Mayo but unfortunately the EMG was unavailable while in Minnesota.
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2 Reactions@tuckerp the results came back on the portal. I was surprised that results are not reviewed by MD and message sent to patients.
Yeah. I agree. It takes me 3-6months to see a specialist and family PA now takes 30-45 days. I am guessing here but to take time to go over everyones labs is probably not a priority. I get my lab results same day or sometimes up to a couple of days and then google my results. Sometimes the wording is a bit difficult to understand if its a review of a scan or xray. I then set up appointments and push for a discussion. At Mayo I will send a message on the portal. I think you have to press for your own well being. Good luck.
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