Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Sharon, you might want to visit the RP Foundation site if you already haven't. It has information about RP there. It is at: www.polychondritis.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Sharon, my name is Judy Ostry and I have had RP for a couple of years now. Once my rheumy had a dx he started me on Methotrexate immediately (low dose chemo). Since I have been on the metho I have only had one subsequent flare (after the biggie that led to the dx), so it must be working. Flaring is horrible, I know. If I accidently touched my ear, I cried for hours from the pain. The hotter than hell red swollen ears are the pits. BUT there are meds that can help. Do you have a good rheumy? I was very lucky, my PCP dx the RP within three weeks, so I was on the chemo quickly. Mine started with a 2 - 3 degree sunburn, when the sunburn healed, my ears didn't. In fact they got worse. My PCP (who fortunately loves the challenges I present to him) looked it up and told me I had an autoimmune disease called RP. I thought it was a joke until I went on line and saw the treatise from Dr. Trentham which terrified me. I immediately made plane reservations to go to Boston to see him. In the meantime, my rheumy put me on the metho and so long as I take it religiously every Tuesday, I am OK. While this disease cannot be cured, it can be managed, but you MUST have a good rheumy who knows about RP. Fortunately, my rheumy has treated it before so knew what to do. Yes, it is terrifying to get the dx, but remember, it can be treated so the worst of the symptoms can be kept at bay. If you don't think the rheumy knows how to handle RP, get a knew one, he is the most important doctor you will have. I too have multiple medical problems (which I could happily do without), but I'm not terrified anymore. And while I pray for a cure, I also know to contact my rheumy the second symptoms start to reappear, avoiding a lot of extra pain. Hang in there. Go to the foundation site, and talk, as questions, kick, scream, swear, whatever it takes! And remember, we are all here for you, and we are truly the only ones who absolutely understand what you are going thru. We have all been there! Love, Judy O. I am new 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Hi Sharon, I don't know how I am going to keep up with all the Sharons and Sharyns lol. But welcome to the group. Please try not to be afraid, believe me we have all been there before. It will get better, but let me say one thing from everything you said, You have been thru a very stressful time. I think stress plays a big factor in this illness. We are here for you and we will try our best to answer you questions to help you not be afraid. You take care, LU 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 sen Quote Link to comment Share on other sites More sharing options...
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