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Autoimmune mystery
In mid September, my wife went to the doctor about a sore throat. Not so unusual,since she us a high school teacher and is exposed to a variety of things throughout the year. She was also running a low grade fever, usually in the afternoons, but wasn’t at the time of her visit to the doctor. She was given a short course of antibiotics. While she was there she was persuaded to take a flu and Prevnar 13 shot (she is 65). By the time she got home, a rash developed at the injection site. By the next day, her back was covered with a rash two feet wide by three feet long. It looked like a poison ivy reaction. She continued to work but got weaker by the day. She did not want to go back to the doctor. At the end of September, I took her to the ER because of her deteriorating condition and she was experiencing periodic double vision. They did a pretty full work up on her (including a head and neck cT scan, one with iodine and one without, and xrays). She has mild bronchiectasis and the doctor - focusing on her low grade temperature and white blood cell count concluded she had a mild case of pneumonia. Two powerful antibiotics were prescribed and she was sent home. My wife has never taken much medication, and after three days the antibiotics had pretty much destroyed her stomach. On day four she stopped taking them. She had Abdominal pain and nausea. Her appetite began to fade. The rash was still present a month after it first appeared. Back to the doctor. We were referred to a neurologist, a pulmonologist, a rheumatologist and she underwent extensive testing, including for west Nile, HIV, valley fever, lupus, Sjögren’s, RA, and myasthenia gravis. She tested positive for RA but showed no symptoms of it. Negative on everything else. She continued to decline. I took her back to the ER and they admitted her to the hospital. Her kidneys were beginning to fail. In the hospital, the tests Continued. She could not (and still cannot) tolerate solid food because of the intense nausea. At the hospital she was given three different anti nausea medications through iv. She was even throwing up water. After four days, kidney function improved and the nausea was alleviated by medication. She was sent home. That was three weeks ago. Since then, she has remained very weak and has nausea almost all the time. She ingests only Boost/Ensure and water and occasionally a few tablespoons of cream of wheat. Since this started, she has lost 12 lbs, and is to all intents an invalid. The weight loss has stopped. The rash is gone. Every other day she consumes about 800 -1400 calories. The rest of the time we are lucky if she takes in 300-400. At times, she has muscle pain in her jaws. She can walk only 10 feet unassisted. We are trying major league probiotics, CBC oil and drops, vitamins, and electrolyte supplements. In short, after innumerable visits to the doctor, numerous phone consultations, 74 vials of blood drawn for testing, CT/MRI/X-ray, four days in the hospital, we are no closer to an solution or explanation than we were when we started. The nausea renders her incapable of sleeping more than three hours at a time. She drinks copious amounts of water (dry mouth). Her temperature spikes every afternoon between 6 and 7 pm at 100.5-101.8. Tomorrow we have more blood tests to monitor kidney function, to test for infectious disease, and to do a CT scan of her stomach and abdomen. Needless to say, her career as an AP teacher and Academic Decathlon coach are over. At this point, the best diagnosis we have is a general severe autoimmune disorder. Has anyone experienced anything similar? Our HMO doctors seem to have no definitive answers.
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Yes, definitely sounds like PMR. My pain started with shoulders, just as you described. Has your doctor given you prednisone? If so, you may need a higher dose. If the pain disappears with 1-2 days once on prednisone that pretty much confirms PMR. Have you had blood tests called
CRP and SED rate. High levels of one or both are associated with PMR.
Not a nice condition. I have been battling for almost five years. I am finally in remission because of a wonder biologic called Actemra. Best wishes to you for relief.
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2 ReactionsThere is also a separate site just for PMR. Best wishes.
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1 ReactionA possible clue... There is a connection between this vaccine (Shingrix) and aggravation of an Epstein-Barr infection. EBV is the cause of MONONUCLEOSIS. After a bad reaction to the vaccine, y monocyte levels were though the roof. The ER doc, my primary care docs, and a Rheumatologist at a well respected hospital failed to address this, as well as other extreme reactions. As a matter of fact , I have yet to get a referral to any docs with immunological smarts.
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3 ReactionsWow! Thnx for sharing. I am due to have the Shingrix vaccine and something tells me I should put it off because of my auto immune system.
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3 ReactionsI’m so sorry your wife is suffering. I don’t know if this will help or not, I am not a Dr., but I was recently diagnosed with Hypothyroidism/Hashimoto’s (Hashimoto’s is an autoimmune disease) and didn’t see a mention above about a test for that. I would have her Thyroid tested, it’s a simple blood test and the test includes checking your TSH, T3 Free, T4 Free, Thyroglobulin Antibodies and Thyroperoxidase Antibodies. If these levels are off, it could explain why your wife is feeling the way she is. I didn’t experience her symptoms, but your Thyroid does control many things in your body, so I thought I would mention it. Good luck on your wife’s health journey.
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3 ReactionsYes please but 1 email a month. I received 2-4 emails from Mayo now, they are helpful. Too many you stop reading
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1 ReactionFirst, let me say how sorry I am that your wife is so sick with no clear diagnosis. The autoimmune diseases can be severe and evade identification for many reasons. It’s not uncommon for the symptoms to appear before any lab tests turn positive. The time between symptom onset and full lab evidence that results in a diagnosis can be months or years. There’s also a lot of overlap among the AI diseases, both in symptoms and lab results. It’s important for her symptoms to be treated to help her feel better and be able to function, even if minimally. The inflammation that accompanies most of the AI ailments causes severe fatigue. That inflammation is reflected by 2 blood tests, the sed rate and CRP. I would recommend you get copies of all test results that are done, and try to learn about them. The two of you will be able to understand and help the diagnostic process. The rheumatologist is going to be the main investigator for her case, and it’s appropriate to get a second opinion any time you feel the need. I would also recommend you keep a calendar of symptom changes, especially any new ones, and any meds, vaccines or concurrent illnesses such as infections. The inflammation usually responds well, sometimes dramatically to oral steroids like Prednisone, and sometimes patients are treated with steroids both as a diagnostic challenge and to relieve symptoms. This is done cautiously and after ruling out infection. Vaccines and infections can trigger AI reactions, so the calendar can help establish the temporal relationship of symptoms to other events. Some blood tests can be intermittently abnormal, so repeating tests can be helpful, especially the antibodies that help identify AI diseases, to try to “catch “ a positive result when it occurs.
On a positive note, AI diseases are generally treatable to control symptoms and prevent organ/ tissue damage. Once this ailment is diagnosed and treated, your wife may recover significantly and be able to resume her usual activities and career. Be prepared that this could take several months and a great deal of patience. I hope you get answers soon and she responds well to treatment. In the meantime, be assertive at asking for what you need and willing to accept help from others.
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4 Reactions@slkanowitz I see that you just recently joined MayoConnect and we’re certainly glad to have you! Your explanation of autoimmune disorders was very helpful! The delay between onset of symptoms and final diagnosis can be very difficult to understand. I know that some people wait years to get a proper diagnosis and that’s a real problem.
Do you have an AD? You certainly have an understanding of it all! Thank you!
Actually I have 4 AI diseases, systemic lupus, which took 10 years to diagnose, RA, relapsing polychondritis, and just this month have been diagnosed with CIDP (chronic inflammatory demyelinating polyneuropathy.) It is a rare one that causes peripheral neuropathy and muscle weakness. I have had symptoms of that for about 12 years but had an acute exacerbation of symptoms (Guillian Barre Syndrome) this July following a Coviid infection. It has been a very rough summer! Thanks for your comments and I will try to stay involved with MayoConnect.
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3 ReactionsAFTER writing that long dissertation, I saw your post about the serum sickness. This would actually be good news, as it is self limited and should resolve completely within a short period of time. Her symptoms are consistent with serum sickness, and that would have a much better prognosis than the chronic AI disorders. Let’s hope for a speedy recovery!
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