Same News, Same Reaction :-(

So I had my first consultation with the new Rheumy today, Dr. C. It took 2 1/2 hours. I felt like he didn’t really believe I had AOSD. He read through my documents from my original Rheumy, Dr H. the one I’ve seen for past 5 years. The new Rheumy, Dr C. read all of the documents from the 10 day hospitalization, previous MD documents, etc. He questioned me, and re-questioned me. He and the Nurse practitioner asked me to verbalize the onset symptoms, the relapses, over and over. I felt interrogated. I felt as if he was trying to see if I would change my reply. Ultimately, he said he would not follow me as a patient unless I stopped all medication. I showed him my blog. I showed him my photos of my body in flare. All he said was, “Well, how old are these photos??” I said since my last flare. I’m quite stable on the meds. I don’t flare every week doctor”
He told me to stop all the medication. I said, “Well that’s why I’m here. My other doctor wants me to stop all medication”. This new MD said that he needs to see for himself if I TRULY have AOSD. He asked, what if I really have a whole different disease? I asked, “What disease would that be doctor????? He said, “I have no idea, I couldn’t tell you”
My original doctor wants me to stop the meds to see if I really can do without the meds. NOT to see me flare. After all, what if I really don’t need medication anymore?? This would be awesome! I love the idea! I hate those stupid pills each week!
So, on the way home, I phoned my original doctor, Dr H. I told the office that I will stop the pills. The day I take my MTX is always Monday so I said, “we will know in 6 weeks, since in the past, I seem to relapse right about 6 weeks.” When I look back through this blog/personal journal, it always seems to be just at 6 weeks. I told the office please be ready to call in Medrol Rx as I will know when it begins, and I do no want to suffer. My fear is that since the holidays are approaching, I didn’t want to hear my MD was out if town in Italy or Greece.
It was slightly disappointing consultation with the new MD. Also, he reported that he has only seen a couple AOSD cases in 20 years. So when I asked him, what are the chances of me being able to finally stay off the MTX, he said, “I really dont know, but I NEED to see how you look when you relapse”.
I thought to myself, well isn’t that lovely, let me suffer through hell for your enjoyment of seeing this. My original MD, Dr H. has a different reason and he knows my flares, how I handle Medrol, what dose to give right away, etc. I will stick with him.
So, here goes…Next Monday I will not take my MTX. I pray that I pass 6 weeks, 7 weeks, 12 weeks, 3 years, 20 years and never need MTX again!! Please keep me in your thoughts. I will keep you updated….
Stay healthy my friends.

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.

2 Comments Leave a comment

  1. I am so sorry!! I have felt my doctor doesn’t really “get it” because there are so many aspects of the disease that just doesn’t make sense. I tried to step down off the MTX over the summer and that is when the chills/fever and joint pain in my knees and hand came back. I am so sorry to hear you have to go through this! I will pray for the best for you!

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