Re: Fw: Welcome to Rpolychondritis

[Guest guest]

Dear Sharon, Welcome to the group. There are alot of wonderful people here who are very knowledgeable and have been a great help and resource for me. My name is Sue Park and I was diagnosed 8 years ago. I found what you had to say about your life at the time of your flare to be similiar to what happened to me. My brother died suddenly and we were in the middle of trying to sell our home before the bank foreclosed when my ear became suddenly very red, painful and all but the earlobe was full of fluid. I had had joint pain for years prior to that and all the blood tests came back negative, I also had facial rashes that they were sure was a Lupus rash. That also was negative according to the lab results. When my ear flared up I happen to be working for a wonderful internist who was known for being an excellent diagnostician. He at first thought it was cellulitis of the ear and put me on antibiotics. He also sent me to a surgeon next door who aspirated ( removed ) fluid from my swollen ear and sent it for culture. It didn't grow any bacteria and was done before I started the antibiotic. This dear doctor called me at home at about 9:30 that night and said he thought he knew what was wrong with me after reviewing my chart and looking at my lab results from that day. My white blood cell count was very high, as was my sed rate and I was also anemic. He had spent hours going through his rheumatology books and felt I had relapsing polychondritis. He had already talked to a rheumatologist friend who worked me in the next day for an office visit. The rheumatologist felt it was definitely classic relapsing polychondritis. I was put on a high dose of prednisone right away. The very next day my ear was practically normal. Later I was put on other medications so they could reduce the prednisone safely without me flaring again. Currently I am on Prednisone, Plaquinil, Arava, Methotrexate, and Colchecine for the relapsing polychondritis. I'm doing well I think. I have the smoldering type where I always have some joint pain etc. However I don't fully flare like before. Stress definitely causes me to flare. I also am just about guarenteed a flare whenever I get an infection. We just readjust the meds as soon as a flare starts and it usually gets under control quickly. If it wasn't for that dear internal medicine doctor I think they would still be trying to figure out what was wrong with me today! You mentioned a gout drug but not the name. They have found that colchecine which is a gout drug is very helpful in controlling joint pain especially, in relapsing polychondritis. I hope this helps a little. I know it's over whelming and the more you read about it the scareyer it is at first. I thought I would be dead in no time! I just had to learn how to accept it and pace myself and pray alot! Please write me anytime you want and I as well as everyone in the group will help you any way we can. Love Sue Park

Re: Welcome to Rpolychondritis

My name is Sharon and I have just been dx with Rpolychondritis 3 days ago. I am in a lot of pain in my left ear. I also have Sjogren's Syndrome, Fibromyalgia, Raynauds--the list goes on. Today my ear is a lot more painful. I am afraid. The doctor put me on some gout medication which I haven't taken yet. I went to ER on Sat. and that doc said I had (after giving him my opinion) bacterial dermatitis. I saw the ENT doc on Mon morning and he dx me and said I had to see my Rheumy. I saw him on the same morning and told me to continue to take the Augmentin that the ER doc prescribed for me and then to start on the gout meds. Why gout meds? Do a lot of you have this much pain? I just had surgery on March 11th for an endometrial ablation and that seemed to aggravate the situation. I remember the first time I woke up with my left ear all swollen and hot and painful--I thought I had an infection from an earring since I am so sensitive to certain types of earrings. Silly me, it couldn't be that simple:( Also I just lost my dad who went through a terrible death on the 1st of Jan. and lost my mom 13 months before to cancer. I don't know how much this new disease is caused from being a nervous wreck because I am and I don't know how much is caused from--being the disease. I thought the Sjogrens and the other autoimmune diseases were a lot to deal with, and they are--I Iive at doctor's offices. Please, can you share some of your information with me--how you were dx, what meds help, how bad this can get etc etc. I am really, really having a hard time right now. Thank You, Sharon 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

[Guest guest]

Sue, sounds like my internist. He, too, was the one to dx the RP from the swollen, hot, red incredibly painful ears! The first thing I read, too, was the articles from Dr. T, which scared me to death. Now, I just take it one day at a time, and try not to overdo or get overly tired. So long as I behave, I do OK. It's wonderful to be free of that ear pain, I know. I still have a problem with them getting very hot and red, but so long as they don't hurt, I can deal with it. Love, Judy O Re: Welcome to Rpolychondritis My name is Sharon and I have just been dx with Rpolychondritis 3 days ago. I am in a lot of pain in my left ear. I also have Sjogren's Syndrome, Fibromyalgia, Raynauds--the list goes on. Today my ear is a lot more painful. I am afraid. The doctor put me on some gout medication which I haven't taken yet. I went to ER on Sat. and that doc said I had (after giving him my opinion) bacterial dermatitis. I saw the ENT doc on Mon morning and he dx me and said I had to see my Rheumy. I saw him on the same morning and told me to continue to take the Augmentin that the ER doc prescribed for me and then to start on the gout meds. Why gout meds? Do a lot of you have this much pain? I just had surgery on March 11th for an endometrial ablation and that seemed to aggravate the situation. I remember the first time I woke up with my left ear all swollen and hot and painful--I thought I had an infection from an earring since I am so sensitive to certain types of earrings. Silly me, it couldn't be that simple:( Also I just lost my dad who went through a terrible death on the 1st of Jan. and lost my mom 13 months before to cancer. I don't know how much this new disease is caused from being a nervous wreck because I am and I don't know how much is caused from--being the disease. I thought the Sjogrens and the other autoimmune diseases were a lot to deal with, and they are--I Iive at doctor's offices. Please, can you share some of your information with me--how you were dx, what meds help, how bad this can get etc etc. I am really, really having a hard time right now. Thank You, Sharon 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