• 8 months ago

    Lupus - a trigger - before and after diagnosis?

    For as long as I can remember, I have been plagued with sinus infections. Starting at age 17 I began having Migraines with Auras which continue. I had a complete hysterectomy at 30 and developed Bells Palsy at 38. I was diagnosed with Lupus at the age of 43. I began taking low levels of Plaquenil and remarkably it reduced the symptoms & I returned to work after a 2-year layoff. I modified my diet, stress levels and workload and except for flu and sinus infections (which usually lasted 10x longer) I survived with the love and attention of my family and coworkers who constantly reminded me to take care of myself. I developed severe chemical allergies to the point that I had to retire because of the perfume and chemicals in our office. Throughout all of this the only symptoms that I consistently displayed in medical tests were low white blood cell counts (25 - 35). At age 65 I began having problems with my right eye (the right side of my face was the one damaged by the Bells Palsy) but over a three-year period my ophthalmologist indicated that it was the optic nerve which was inflamed and it would go away. I should have sought a second option. This year at age 68 I lost vision in my right eye and it has been diagnosed as Non-Arteritic Anterior Isochemic Optic Neuropathy (the optic nerve is permanently damaged). Doctors assure me this was not caused by the Plaquenil; however, realizing there is a slight chance of damage from the drug, I have stopped taking it as I certainly can't afford to lose sight in my left eye. I am posting this because I believe my own experience with Lupus has shown me that the disease causes significantly more damage to my system than is obvious and that it shows up in non-standard ways, probably long before it is diagnosed. I think that because Lupus is usually not outwardly visible, we and our doctors fail to understand its possible detrimental effects on other illnesses or diseases. As Lupus patients we need to watch all symptoms and illnesses and assume the worst. That way we delve deeper, question more, and take charge of ourselves. If we're not satisfied with what our caregiver is saying we need to seek other opinions. We must advocate and make sure everyone around us understands the significance of the disease and its possible deadly consequences. That includes our family, colleagues and medical team.

Responses

  • 7 months ago

    RE: Lupus - a trigger - before and after diagnosis?

    Very similar medical history. I am having extreme finger pain so will keep this short. Also if anyone knows of a dictating program that will type for me please let me know! You didn't say what type of lupus. I have the kind mostly in my joints I may also have RA. I have Shoegren's and Raynard's too. My dentist recently diagnosed me with Burning Mouth Syndrome. This is due to years of dry mouth. My teeth became soft and I am loosing them. Partly from ten years on Prednisone. Just curious what meds you take. I take 3 Vicodin a day and am getting very little relief that's it along with OTC Aleve. Drop me a message, Debi
  • 7 months ago

    RE: Lupus - a trigger - before and after diagnosis?

    I'm sorry to hear of your continuing issues. I took Plaquenil for 20 years but just stopped it because of the loss of my sight in my right eye although the retinal specialist assured me that the damage to my optic nerve was not caused by the drug. The reason I stopped is because I can't afford to take any chances with my other eye, even if the possibility of its being damage from the Plaquenil is remote. I take a baby aspirin every day and avoid all other drugs with the exception of ibuprofen occasionally or Sumatratripan for really severe migraines. I found that Aleve offers little to no relief for me which is strange because it is very effective for my husband's occasional pain. I try to stay as active as possible no matter how much I hurt - swimming, weights, stationary bike. I'm about to start yoga because since I stopped taking the Plaquenil my possible really aches. Hope this helps. Peg