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Sally’s story of remission

I have been in remission now for over 1 year (YES!!!). That is complete remission with no symtpoms and no meds. I was diagnosed in 2004 and rode the roller coaster of varying doses of prednisone coupled with Cellcept at first and then Imuran. After many ups and downs, 4 years of meds, and a very slow taper of prednisone, I was able to go off of all meds and have been doing great for the past year. My treatment was with Dr. Anhalt, who I am extremely grateful to for his knowledge and compassion.

I have never done IVIG or Rituxan although these therapies were discussed as options had I not finally started doing well on the meds I was on. I do have to say, however, that I have never taken zinc or niacinamide, so I cannot owe my remission to that.

I think that it is wonderful that we have alternative therapies such as Rituxan and IVIG. My understanding is that most of the time, these treatments are used for those patients who do not respond well to traditional therapies. I know there are people in {the discussion)} group who have had tough battles and have not responded well to prednisone and immunosuppressive therapies. I think that is when these other treatments come into play.

I think using supplements can be very wonderful and if it works for some, then that is great. I don’t think, however, it’s always enough for everyone. And, I think with this disease, the treatment and journey is different for us all.

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The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.