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Posts posted by Paula1025

  1. I did wean myself off all stills meds. Next cycle I will try with the meds to bust. Just was so unsure and at the moment the beast is way worse than my messed up body so all I can focus on was stopping the cycle at any cost. Today bust #2. And tomorrow I’m going back on the stills disease med regimen. I keep asking why me this week. Just got To keep swimming!! 

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  2. Yes I have O2 and sumatriptan injections. But the best way for me to beat the beast is through busting. But yes this makes some sense that the meds for stills would block effects of mm. Yes time to see the Dr. I think I will just need to taper off the prednisone over the next few days and try to dose next week again and until then I’ll fight like hell to win!!!!! Thanks , paula

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  3. Hello, I have a question?  I have CH and I also have AOSD ( adult onset stills disease) I take 10 mg prednisone daily, vit d2 50,000iu weekly, folic acid for 6 days because I take methotrexate once weekly. My question is I am a episodic CHer I have been in remission for 2 1/2 years thanks to DR. McGeeney for rescuing me back in 2009. I went to Boston neurology because it was my final hope to know what was wrong with me and as I was telling a young woman my symptoms he over heard me and walked right into my room and saw my droopy eye and and runny nose and said he would like to take my case and we talked for like a hour and since then I have been able to manage my attacks and cycles. Now that I have been diagnosed with this new disease on top of CH I don’t know if my medications will counter act the benefits from dosing to stop this cycle. I’ve have 9 attacks in 3 days and I just got my dose delivery but I’m afraid to take them and not know if my medication will affect me. Please if anyone knows about this I could use advice I tried to google it and there isn’t to much as mm are illegal and there are no studies of it mixed with methotrexate. Thanks Paula. 

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