Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 , We aren't sure yet, but strongly suspect that my sister my have RP as well. She is still in the let's figure this out stage. Her symptoms are so similar to mine that I am -- sadly -- pretty sure she has it too. Her labs did come back different from mine though. I am always " normal " in my bloodwork (at least somewhere, right? LOL) and she had a very high ANA speckled pattern with increased monocytes. She hasn't heard back from our rheumy as to what she makes of that. We have appointments with the same rhuemy on consecutive days -- how wild is that? Anyway, when I hear more I will pass it on. She is so afraid that she will have to take pred as she has watched me become moon-faced and " fluffy. " So please say a prayer for her that she will accept whatever comes and not give up! Kathleen (Tx) Requave RPest > As I said in my last post, I have spoken with Bradley, Phd. > > He is really interested in people who have RP running in families. Close > family members. Marie Pia, he was especially interested you your children. > If all of you with other close family members who have RP or you think had RP > would write a brief page and send it to me, I will forward it on to him. > > He is so excited about our work. Lets help him out. > > Thank you > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 In a message dated 3/26/02 4:13:27 PM Pacific Standard Time, kath1@... writes: << She is so afraid that she will have to take pred as she has watched me become moon-faced and " fluffy. " So please say a prayer for her that she will accept whatever comes and not give up! >> Kathleen, I'm so sorry to hear about your sister. Please let me know what you find out. She sounds like my sister. she has seen what the pred has done to me and swears she won't ever go on it. Please know that you and your sister are in my prayers. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Kathleen, I can understand how she feels about Pred - I hate the stuff, but when some other part of me flares, it's the only thing that actually works. Every time I finally get off it, something else goes kaput and I'm back on it again. I'm finally down to 10 mgs, and can't wait to get off it again. I know it works, but I wonder what else it is doing to my body. The less time I spend on it, the better! Tell her that even if it is RP, it can be managed and doesn't have to be a death sentence. Hang in there! Love, Judy O Requave RPest> As I said in my last post, I have spoken with Bradley, Phd.>> He is really interested in people who have RP running in families. Close> family members. Marie Pia, he was especially interested you yourchildren.> If all of you with other close family members who have RP or you think hadRP> would write a brief page and send it to me, I will forward it on to him.>> He is so excited about our work. Lets help him out.>> Thank you> >>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT ISRECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTORBEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOURPHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT ANDTREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU>> Quote Link to comment Share on other sites More sharing options...
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