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New member Marcia + Jo

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Hello New Member Marcia + Jo !!!!

I like to willkomm you to the best RP Group there is. I am happy you found us and Posting

My name is Heidi and I am the nosey one in the Group. LOL It is my Husband that has this darn RP. Right now he is doing great with it.

Next month it be 1 year that he has been off the prednison !!!!!!! Now aint that great ??

Ok since I am nosey I got a few ? for you.

Would you please be kind and tell us a little

about your self and where you at ???? What kind of Meds are you on ??? And how did you find us ???? In this Group you can and Hope you will ask all the ? you have. Just remember there is NO such thing as a stupid ? ever. We are here to help each other. There is always someone willing to give you a answer or stir you to a website for more Information. Just hang in there and learn with us. Ok Hope to hear from you guys soon bye for now.

Hugs from Okla.

Heidi

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Welcome Marcia and JO and the rest of the newbies that I don't have a name for. You have found the greatest support group ever. Please ask all the questions you want. We all learn from each other and believe me, I learn something new every day.

I'm looking foward to gettting to know you all better.

I live in Calif, am 51,married with 3 daughters and a grandaughter. I have had RP since 1998, but feel I have had it longer. It started with a ear flare that was diagnosed as cellulitus. I was treated with antibiotics orally and injections every day for almost 2 weeks. It finally went away. What a painful 2 weeks. I didn't have another flare until a year later. Same ear, same thing. Dr. treated me the same way and after a week of daily injs. I INSISTED to being sent to and ENT. Luckily the ENT had seen a case in med school and knew what it was. Put me on pred but didn't know how to treat it otherwise. Told me to go home and look on the computer. LOL I didn't have one at the time. I came home thinking how bad can a red ear be. LOL I continured to have flares every 6 weeks after a pred dose. So when I got a computer and looked it up, boy was I scared with what I read. I found somehow.. ( thank you girlfriend) and she signed me up to this group. What a life saver. I literally mean it. Without the knowledge of this group, I think I would have been in worse shape. RP mainly affects my ears,nose ribs and now my throat. Oh.. it did affect my heart valve too. I had to have it replaced in July. I'm waiting on a letter from my heart surgeon explaining what he found so it will be available to the group.

It silent! I never knew my heart was being damaged.

I'm on pred and Plaquenil now and am in the process of lowering the pred. I was down to 7 mg before the surgery and am now at 17mg.

For anyone who hasn't been to the RP Foundation site, it is at

www.polychondritis.org

You will find RP articles there. If you go to " Links" and click on Emedicine, you will find Dr. Karin Harp's article there. Under research, Dr. Jane Buckner's info is there.

If you have any questions, Please just ask.. you will get the info you need or where to go to find it.

Sorry this was so long. Promise to keep the rest shorter.

hugs

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