Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 This post is for all our new Members that have joint the greatest support Group on Line. Please Read and Replay ASAP. Hallo all new members !!!! I would like to take the time to say to each of you " Herzlich Willkommen " to this fine group. I hope you all will post real soon so we do get to know each other a little better. I would like to tell you all about this group here. My name is Heidi also know as Mrs. Nosey. It is my Husband that has this darn RP. Right now he is doing great. He is down on his Prednison to 0 mg a day. He also takes 800mg of Ibuprofen 3 x a day. Then he takes 2 different stomach medicine to protect his stomach. The are Prilosec 2x a day and Cytotec 100mg 4 x a day. He also takes Vitamins : Multy Vat. 1 x day, E 1000mg in the morning E 400mg in the evening, B12, Calcium Citrate with Vitamin D.Plus Zinc 50 mg 2 x a day. Also a new colestrol Medicine. The most important thing is do take your Medicine and Vitamins ON TIME EVERYDAY LIKE YOU SHOULD !!!!!!! And never skip !!!!! Ja at times you might get to feel better and think O I am doing great today I wont need it today. WRONG !!!!!!! Most of the RP'ers need to take it all the time in order to keep it in a sleeping mood. Check with your DRs. OK Plus remember when you been on a high dose of Prednison and starting to cut down you need to do it very SLOW !!!!! The mayo clinic told us once you are down to 10 mg then go down only 1 mg a month. The Prednison does come in the 1 mg dose!!!! Don"s RP has been in sleeping mood for quit a few months now. But believe me he does NOT miss any Medicine or Vitamins. Now to the rest of the offers the group has. We have a address list of all our members here. If you would like to have one I be happy to send you one. Here is how you can get one. Yup, there is a catch too this LOL All you need to do is send me your Full name with home address ,Phone # , Birthday ( do not have to have the year ) your Email addy . I in turn will print you one and send it to you true slow snail mail. But the most important thing is you got to do is remember YOU MAY NOT GIVE OUT ANY OF THIS INFORMATION TO ANY ONE OUT SIDE THIS GROUP !!!!!!!!!! This is only Information for the group use. So here is my addy . heidi@... Believe me it is so nice to have you might even get a Phone call from our Phone Bandit here . LOL Ok I just hope and pray you all keep posting and ask all the ? you have. We talk about the whole person here not just RP. We cry and laugh together. Yup, we like jokes too. LOL Your Family member also can post if the like. Well that all from Mrs. Nosey right now. We also have a none Profit Foundation. And will tell you all about on how you can join this. So please let us hear from you soon. Yup, I told you am Nosey !!! LOL Sending you all a warm gentle Hug from Okie land. Heidi 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...
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