I said, WHAT! Are You Serious!!!??

Things have been going well. I have not had any full relapses. But In the last 7 months I have had a few episodes of rash coming on directly after feeling very cold and chilled. Today i experienced a rash episode. I had quite a few errands to accomplish which is not unusual on my days off from work. But something seemed different about the way I felt this morning. I had a slight stomach ache, which I rarely get. I carried out my tasks as normal, grocery shopping, hair cut, post office, etc, then I went to the gym. After I worked out I felt very cold, chilled. I looked at my neck and chest and abdomen area in the mirror and noticed a faint rash. Somehow I knew it before I even checked. I always feel different when the rash begins. So I went into the steam room to get warm. When I get this cold it so difficult to warm up.

Here’s the weird thing. I had my 1/2 yearly check up with my rheumatologist. He reviews my liver panel and labs due to the MTX. As usual, He asks about rashes, flares, chills fevers, etc. I told him I get them when I’m over tired or get a cold or the flu or if I have a tremendous lack of sleep.

Then he says, ” I think we should try to wean you off the methotrexate” I said, “WHAT!!! why would even consider this when I still get rashes???!!! If I still get rashes then I will ABSOLUTELY relapse into a FULL FLARE!! Just like I have done the last 4 times!!”

But he was persistent. His reasoning was my labs are good. I kept telling him I get rashes and chills about every 12 weeks. Not daily and not even weekly, but they still appear. Eventually I said ” yeah, yeah, whatever”. I paid my bill and left and now I’m ready to find a new doctor.

Daily Update

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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.

9 Comments Leave a comment

  1. Hi! My name is Jennie and I have just recently found your blog. I was diagnosed with AOSD 7 years ago. I have been having bad chills since the end of July, which hasn’t happened to me for several years now. I put my heating blanket on my bed and it is still on there to help keep the chills away at night so I can sleep. My doctor never thinks the chills are related to Stills and always wants to check my thyroid ): I have tried to tell her I had these same debilitating chills at the onset of Stills, but she doesn’t really get it. You are the first person I have found that shares this same symptom with me! What a relief!! I just got a new doctor and I am hoping he will listen more to me. I have lots of trouble with my knees and my right wrist and the rash that starts on my chest–how I hate taking off my shirt and seeing that at night–which only happens every few weeks. I am still on 8 MTX a week. I tried to reduce it over the summer and I am sure that combined with a great deal of stress is what started the problems with the chills and trouble walking. I have 4 children at home, my youngest has Down syndrome and several other challenges that make it very difficult for me to manage my stress well and get enough sleep. I guess that is why I can’t seem to step down on my MTX. Thank you so much for writing your blog! I haven’t read through all your entries yet, but I plan to. It has helped me not feel so alone (: BTW, I do have a fabulous husband by my side. He takes good care of me and regularly tells me I do to much and should rest more. There is just a lot to do with a family our size (:

    • Hi Jenny, I am so glad you found my site! I am so sorry that you are having ongoing chills and rash. Just as yourself, I seem to get it when I am overly fatigued, poor eating habit, stressed or poor sleep. When rest and a super strict anti-inflamatory diet do not help and my rash gets worse, I have to resort to steroids to get things under control. For some reason I do not tolerate Prednisone I use non-generic Medrol (much more expensive but works well for me and then my dose of methotrexate starts off high then I taper down to 2 pills (5mg) a week. This is where i am right now. Except, if you read my latest post about 30 mins ago, I may have to increase my MTX to avoid going back on steroids 😦 I hate taking the steroids, but it sometimes is the only way. I am wondering if you need to change doctors?? Just a suggestion. Your MD should be aware that the salmon colored rash is one of the hallmarks of this disease. Just a suggestion, im no doctor, Im just a AOSD sufferer who has been around and around and around the AOSD block. I am so glad you have a supportive spouse. My husband also tells me I do too much! But there is so much to do! having a spouse that has the best intentions is so helpful. Please keep me posted on your progress. Wishing you better health!

      • I did start with a new doctor in September. My old doctor knew the rash well but was not familiar with the chills as a symptom of Stills–she thought it was my thyroid. My new doctor offered me prednisone but I just can’t stand the side effects of it. I am trying to reduce my stress and rest better in hopes of avoiding getting more meds. Here is an off the wall question for you–do you remember your ferritin level when you were diagnosed with AOSD? It took 4 months to diagnose me and finally when I was in the ER, a rhuematologist found that my spleen was enlarged and ran a blood test looking for the ferritin level. The ferritin level and the enlarged spleen (in addition to the swollen joints, severe rash, fever they couldn’t get to go down, etc.) was the key to diagnosis. I wanted to kiss the doctor who could now help put me out of my misery!!

      • I am so glad that you will be seeing a new doctor. Your previous one sounds like he/she was not thoroughly aware of the 5 classic symptoms. Regarding your question, it is not odd at all. Infact, I have posted the actual labs drawn during all of the days in the hospital in my blog. you can find my actual labs I have scanned in. I did this because a physician contacted me and asked if I could provide additional information. My ferritin level was 14,000. The entire 10 days in the hospital, not 1 single doctor put the 5 classic symptoms together to form a diagnosis. I have posted about how I was diagnosed in mu blog in another section. It is a tragic, horrible story of how I was diagnosed, butI want other women to know they are not alone if this has happened to them in their weakest, most vulnerable time. Perhaps it can happen to men. But I am a woman and it happened to me. I am SO HAPPY that the MD recognized your symptoms!!!
        Best health to you, my friend

      • I couldn’t make out your labs–my computer is being so slow! I used to track my labs religiously praying for improvements. It took about a year for everything to get back into a normal range. My ferritin was 20,000 when I was finally diagnosed and my Sed rate was 85. I am so sorry to read about how you were finally able to get a diagnosis after that terrible incident with your doctor to get a referral. What an awful thing to go through when you were already suffering. Here’s to better days!!

      • I will try and rescan my labs into my blog. There were several labs I wanted to show the values on. As we are aware, Stills, most always affects one major organ, since my liver was affected, I wanted to show those values. My ferritin level was 17,000. My SED rate was also sky high. The labs that I scanned in were from the initial hospital stay. Unfortuanely, if you notice, the infectious disease doctor at the hospital at discharge still felt the rash was from medication. This was so disappointing after 10 days in the hospital and they were searching for an infectious disease! I have pages and pages of labs, but scanning them all in would bore everybody to death. What I might do later is scan in the labs from the MD where I finally received the diagnosis confirmation of what I eventually I diagnosed myself. I knew I had to keep searching or die. I am so thankful I had that bit of energy each day to keep trying to find what was wrong with me. The sadness is of people who never find out and suffer. This pains me so much 😦

  2. I’m really glad you are feeling good! I get really small rashes mostly on my arms. They are very small, and I am the only one who ever notices. I never have chills with them, but I have started working again and notice they are coming out more. Either that or I never noticed them before. The rash always freaks me out because it’s a reminder. If he wants to take you off of MTX, maybe try something else if you have a flare. Are you on any steroids?I have heard some good responses to Humira and some biologics like Kineret or Actemra which I am on. Hope you continue doing well. Sending you some really big well wishes 🙂

    • Thank you for the well wishes Jackie! I do very very well on MTX. It has been fine for me for 2 years now. My rash/chills/fever only comes about when I over exhaust myself. I know exactly how far I am able to push myself, but sometimes I feel like superwoman. My MD is not paying attention lately I noticed. He gets wrapped up with his medical interns and does not review my chart completely, before I come (although one would think he would?). Anyways, he obviously, completely forgot, that he and I have repeatedly discussed that I stay on this ultra-low dose of MTX since it is working so well for me. I am able to go to spin cycle class 3 times a week and take 2 hot yogas classes a week. I work a few days a week. And the AOSD stays in control. I thank the heavens daily that I have not had a full flare in a few years now. And I am determined to never flare again with this low dose.My husband and I have decided to switch MD’s. I hope you continue to do well Jackie! Keep your stress low as possible! I too know that the rash is like a flare gun in the dark to signal us to SLOW the heck down!!!!Take care! 🙂

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