The diagnosis didn’t come easy

My diagnosis was a slow, painful process. It is actually quite disappointing from a patients perspective. I have not written about for several reasons. One being that there is a medical ethical issue involved and the and it also brings many painful memories.

Here is how I was finally diagnosed.

I was sent home from the hospital after 10 days, as you have probably read in my blog, without a diagnosis. The following 3 months were the same if not worse than my actual hospital stay. I went to recover at my mother’s home since I was too weak to walk to the toilet by myself, or even bathe. I was down to 100 pounds from a healthy 129 Lbs. I was unable to stay alone while my husband was at work.

While at my mothers home. I would muster the strength once a day to bundle myself with quilts and to sit at the computer for 20 minutes and keep typing in the same symptoms over and over, praying for an illness would pop-up that matched my symptoms.

I know, doing something over and over and expecting change is the definition of insanity, but this one day, it worked after 12 weeks of doing this. The diagnosis of Adult Onset Stills Disease popped-up and matched my symptoms exactly.

I phoned a primary care physician. By now, I was so extremely weak, I could not hold my urine due to constant coughing and vomiting. I wore adult diaper briefs to catch my urine or huge maxi-pads to prevent urine from spilling out of me. I had lost control of my ability to hold my urine when I coughed so violently for hours on end. I was given an appointment to see him. This primary care MD was named, Dr O (full name not fully written). I brought the information that I downloaded and printed from the internet with me. I showed it to him. He said it was “impossible to have the disease” and the threw my downloaded papers in the trash can next to him. I left his office extremely disappointed.

The next day, I called, I begged the office for a referral to a rheumatologist. This was the only type of physician I could think of that would treat Adult Onset Stills Disease. He refused to refer me, his explanation again on the phone was, “this disease is so rare, it would impossible for you to have it”. But then he changed his mind. He said, come into the office. He asked me to take off all my clothing so he could inspect the rash on my body. Cold with chills. I sat still. I was so disgusted. He wrote the referral.

I didn’t tell my husband or my family. I was so ashamed. I was so deeply ashamed that I allowed this to happen. But mostly due to his persuasive way to get me do this when I needed the referral so badly. I hate to read this now, it repulses me as I type it.

After calling around to see who was open for new referrals, I was given an appointment. I arrived at Dr Paul Howard’s Rheumatologists office, he had 3 residents with him. He asked me not to say the disease I had out loud so that his residents could try and figure out what I had
Of course, none of them had a clue, how could they? Many MD’s with extensive years in practice in the hospital didn’t even know what I had.

I am grateful that I found a reliable, caring and honest doctor. I hope others can find the medical support to help through this disease.

15 Comments Leave a comment

  1. Hello there, I am newly diagnosed with Stills Disease. I also have psoriasis and psoriatic arthritis. I had the awful rash and joint pain, joint swelling for 10 plus years before the fevers started. I have tried methotrexate, Humira, Enbrel, Plaquenil, leflunomide and prednisone. Prednisone always helped but not fully. Once I got diagnosed with Stills a few months ago I was started on kineret. It was life-changing, it started working within 12 hours. Almost all pain is gone. All my inflammatory markers are normal now except my ferritin is a little high.

    • I am so happy you finally got a diagnosis and found a Med that works. It is so interesting how some meds work amazing for one person, but not the next. I am so grateful you are feeling better!! Medrol and MTX have always been useful when I flared. They found out very early I was allergic to the carrier in prednisone. Caused severe hallucinations.

      I have heard wonderful things about Kineret. Thank goodness it is working so well for you!! Keep doing well!

      Claudine 🙂

  2. Hello,
    Thank you so much for your blog. I’m wondering if anyone has found something to help with the rash? It doesn’t itch but it hurts terribly. Only on my ankle and calf so far. Thank God. Praying for us all.

    • Good morning Denise, I have always wondered the same question about the rash. I have not found any sure remedy except, as my flare would decrease, eventually the rash would too. I don’t usually have painful rashes, but a flare I had in January did have a rash that was a bit different and was painful. I did find out with this particular rash was a combination of a stress rash and the Stills rash. It was odd. I am hoping your symptoms go away soon. I am hoping you go into remission very soon. Thank you for writing to me. Keep me posted.

  3. Hello there. I was just diagnosed with Stills last December. Have you heard of the drug Embrel? My Dr. wants me to do the shots once a week (forever).
    I’ve only had two flares, in the same month. Steroids helped.

    • Hi Kathleen, I hope you are feeling better. I have heard of Embrel. I have heard many people have great success with it. When I flare, my MD puts me immediately on Medrol. I stay on medrol until my symptoms begin to leave and then I start Methotrexate injections. I usually stay on for a few months and then I am fine. The difficulty is my very weak immune system. I may have perfect labs, but extreme stress of infection or the flu can send me right back into a flare. Some people have chronic flares, others have a one time occurrence and other have chronic flares. This disease is unpredictable and awful.
      I hope you are in remission and feeling well.
      Wishing you good and lasting heath.

  4. My son is diagnosed AOSD since January 2017 and had flare up(pericardial effusion) in Nov 17, Feb 18 and Oct 19.
    He is under steroids predinosolone and methotroxate. We are in Hyderabad. India.
    Any suggestion to prevent flair ups?

    • I am so sorry that your son has AOSD. I am glad that his MD has him on steroids and Methotrexate. I am not sure if his doctor has explained that there are basically 3 types of AOSD. In plain words, there is a acute flare that never returns, there is chronic remitting and there is chronic. I seem to be the 2nd type. I went for 8 years between a flare, but then I have flared twice this year. However, I have noticed with my personal experience that stress and extreme fatigue play a HUGE part in my ability to stay flare-free. I do understand that there are biologic medications that can help with sufferers that flare repeatedly. So far, I am not a candidate for these due to once my flares are under control and I do not overwhelm my body with physical or emotional stress or get the flu, I seem to be fine. This disease is so odd. Perhaps you can discuss the medication infusions, Kineret and others that seem to work well for some patients? Of course you sons doctor knows his case and can advise if he is good candidate for the biologics. I have also found that staying away from all wheat products seems to help me. For some reason, and other people have written to me as well, saying that wheat inflames their bodies which makes getting out of a flare more difficult. Maybe worth a try.
      My thoughts are with your son that he find relief soon.
      Please keep me posted.
      Sending well wishes up now.
      Claudine .

  5. Hi Kimberly, sorry that it took so long for the diagnosis. In March my niece was admitted to the ER after fighting the flu for a week. She had been tested by an urgent care a few days before and they did confirm the flu. Unfortunately she developed an uncontrollable rash, itching everywhere, and high grade fevers. Then developed fluid outside the lung, but inside the lung sack and it began collapsing her lungs. She was put on oxygen and they did a thoracentesis to drain 1,200ml of fluid from the sack so that she could breathe again. They tested her for everything from Valley Fever to Malaria and over a nine-day period, gave her antibiotics, antivirals, and antifungals; guessing at what was wrong. With steroids (prednizone), she did recover, but kept relapsing. 9 days at Banner Thunderbird, 1 day a Mayo Clinic, then 4 days again at Mayo. Finally the Mayo infectious disease doctor ruled out all foreign bodies and she was transferred to Dr. Griffin in rheumatology. I had documented six weeks of fevers, rashes, exhausting, severe back pain, swelling in wrist and fingers, and had dates for each occurrence. Dr. Griffin very quickly narrowed it down to two auto immune diseases; either AOSD or spondylosis. A couple of more tests and spondylosis was ruled out.

    It was a relief to finally know what had gone wrong with her body, but it’s been a very difficult transition to the IF diet and she still has some days of rash and exhaustion, but nothing as bad as before she started the Anakinra injections. They are extremely painful and often make her cry, but, it keeps her out of the ER and she is functional, able to work.

    We were very lucky at getting a diagnosis after only six weeks. We had a bit of a head start as at 20-years-old, her brother was diagnosed with UC and has been on a strict diet for that. Auto-immune diseases run in families. Unfortunately, her brother’s diet for UC doesn’t always line up with the IF diet for AOSD, but many items overlap.

    She was diagnosed at the age of 21, just this March passed. Her brother is now 25. Both were incredibly healthy until they developed the disease; rarely catching a cold and my niece never had the flu until this year.

    Thank you greatly for creating this blog. There is such little information on Stills that it can really leave a family feeling isolated and hopeless. If you, or anyone else in Arizona with Stills, or a family member with Stills, would like to meet up and talk shop, I’d love to meet.

    • Thank you so much for your comment and your nieces’ progress with this complicated diagnosis. It is truly a very difficult disease to diagnose. I am so glad your niece is doing better with the injections. I have often thought of starting a meet-up group with family and people with AOSD. It could help to have others who have been there and are feeling isolated. It’s a strange thing that I can feel very well for weeks sometimes even months, but the dragon will send up a notice that it still lurks when I become over fatigued. Wishing continued progress with better health for your niece.
      Stay healthy friend.

      • I was diagnosed in July 2018. I don’t know how long I had the illness before but I. July the fever and rash became more obvious and I was admitted to hospital a after lots of. Blood tests the ferritin levels were really high which apparently is a sign of Stills. During the next year I took methotrexate and prednisolone with hydroxychloroquinine. Things improved a bit but my joints, especially wrists and ankles still hurt and my energy levels were low, no fever though, I was put on Tocilizumab IV in September 2019 a IV every four weeks and kept the other medicines going, things did improve but the symptoms would come back about a week before the next IV was due so they changed me to self administer subcutaneous Tocilizumab at home, My depression improved and I st last managed to reduce the prednisolone dose. Things were going well all but my knees had improved, tried Sulphasalazine which is not recommende with Stills and also Leflunomide which both seemed to make things worse again, finally back to just Tocilizumab and prep with hydroxychloroquinine. But big flare two weeks ago with pandemic worry. I’m sure things will improve again once this virus has been resolved. Biologics for me seemed to be the way to go, Hope this helps someone

      • Claire you have been though so much with your medicine trials! I am truly hoping that the biologics keep working for you. I understand that many people have great success with them. I feel that many who read about your success with them can try them if they are not having any luck with their current meds. So far, thank heavens, I have found that Medrol and methotrexate injections when I flare are what gets the flare under control and helps me. I still end up having the whole flare even if I catch it early. I end up I looking like a puffer fish very quickly. It is awful. . I have learned my symptoms very well and when I notice things are unusual, I.e. sleeping a lot, feeling very cold, extreme fatigue etc, loss of appetite, chills, etc. I run to get labs and am never surprised that I know my body so well now. I am wishing you great success with your prescription!! I am wishing you a return to good health for a very long time.
        Stay healthy.

    • Hi I use kineret as well. What I do to avoid the pain of the shot is let it come to room temperature for one hour after it come out of the fridge. Then I inject very slowly so it’s not painful entering into my system. It takes time but it helps me not have a negative connection to the medicine that provides me with so much help.

  6. Thank you so much for this blog. I’ve had this rash, burn on my upper chest for 33 weeks now. I’ve been going to the doctor for various symptoms including laryngitis, for months. Each time having physicians say the rash on my chest was everything from sunburn, to allergies, to possibly lupus. I’ve been doing exactly what you did, researching on the internet. A few days ago my search stumbled upon the photo of your chest. I said that’s it! Now reading the other symptoms I know with no doubt. Fever. Going up to 103.3. Pain. Fatigue. The reoccurring laryngitis. Chest pain, my heart hurts like I’ve pulled a muscle. Swollen lymph nodes.
    With all you’ve been through it didn’t happen that way in vain. You’re helping us. Thank you for posting the pictures. Thank you for the lab work. That took such courage. I’ve saved them to my ipad and I will be showing my physician on Monday.
    I have an appointment on Monday with a physician who will be removing two swollen lymph nodes. If he doesn’t listen I will be driving to my family doctor, hoping he will listen. Someone is going to listen. Thank you.

    • Dear Kimberly, thank you for taking the time to write your comment to me. I am so sorry that it is taking such a long time to get a diagnosis, but I feel you have somebody here, me, who can completely understand. Please have your MD take labs to find out if your ferritin is elevated, this is usually a pretty good indicator along with other labs that must be ruled out, leaving only a few options left, one of which could very well be AOSD. It is very common for the rash to appear, more fiercly, at a certain time, my hour was 7am and 7pm, almost exactly on the minute. Please try and get a refferal to a rheumatologist. I also had so many swollen lymph nodes, my rheumy feared that I may have cancer, so he sent me urgently to an oncologist. I had hundreds of swollen nodes, the ones under my arms were as big as avocado pits. Fortnately, high steroids (medrol for me) and high dosage of methotrexate decreased the lymph nodes very quickly. I hope you can get the medication and diagnosis to help you. Sending you positive thoughts my friend.

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