Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Here is my story. Thought I better get at it before Heidi decided to come after me with her pain medicine. I have no idea how to start but I guess here goes. I work in a Security type job and I worked evenings and nights out in the weather. Plus I am a pretty rough and tumble type person. Never sick much in my life and never went to the Doctor except to have my two kids. I had my first flare in 1991. At least that is what I am thinking. I think it was in my right elbow to start with. Yes that sounds weird but I did a lot of driving and had a stick shift. Didn't think much of it except it stayed sore for a long time or it seemed like it. It was a year or so and then I had an ear flare. The first one I ignored as far as going to the Dr. that is. Then I had another one a few months later and I finally went to the Dr. thinking that I had an infection of some type. The Dr. gave me anti-biotic and it went away and about 3 or so months later it happened again. Same treatment and it went away again. Well the third one was a charm it was a full blown flare and really hurting to the point I thought I was going to go crazy if it didn't stop.(Cold weather didn't help it none either) This time I went to an urgent care unit and they advised me that they didn't think it was an infection. Dr. on call (young just out of school) advised me that he thought it was something else and he wanted me to see a Dermatologist. He didn't want to say what he thought it was but thought it was important that I see the other Dr. The next day I went to the Dermatologist. He wanted to do some test and he put me on pred. a mega dose I don't even remember what the dose was maybe 80 mg. but it threw me for a loop. I was sicker than a dog. I returned to his office doing a lot better but still not feeling well. He told me I had RP wrote the word on a chalkboard and said this is what you have and what you see on the chalkboard is how much is known about it. He said the reason that he put me on such a high dose of pred was to prove to me that it worked. He gave me that awful information out of the medical journals, told me he would see me the next time my ears were hurting me and that was it. No info, no nothing just told me to read the paperwork. I left his office scared to death. I read the paperwork and then I thought I was going to die and was even more scared. Well I am not one to give up or let something get the better of me so I decide I was going to fight whatever it was that I had. I called the dermatologist back..which I thought was a real jerk, and asked him if he could recommend a good Dr. for me to see other than him. He recommended that I see Dr. W. Dr. W. was not available because he wasn't taking any new patients. He is a very highly recommended Dr. and a specials in Rheumetology in this area. When I called and couldn't get in I asked if there was another Rheumy I could see and they referred me to Dr. B. He was my life saver! Dr. B. took one look at me and knew the diagnoses was correct and that I need help. He told me that the dermo was a friend of his and was a little abrupt at times. He sit down and explained it all to me and told me to leave my care in his hands and he would get me straightened out. I did and he did! He put me on 200 mg. of Imuran along with 60 mg of pred. but this time we worked our way up to this dose. After about 6 mo. or so things started to settle down and I was allowed to taper down on the pred. After about a year I tapered down on the Imuran to 150mg. a day. In between this time I tried numerous other meds. for depression, hormonal, and sleep problems. I think it was all cause by the pred. now that I think back on it. When I was first diagnose in 1993 I was having female problems too. I was told that RP could be brought on by a virus, change in your body or stress. All of which were going on in my life at the time. After struggling with flares and female problems for 2 years. I finally had a hysterectomy in December of 1995. This is when things started to turn around for me. It took awhile but I was feeling better. It was like the meds that I was having to take were fighting with each other. I got to feeling so much better that I was able to go completely off the Pred.(except for flares) and the Imuran was/is down to 100 mg. a day. This was done by the end of 1996. When I think back on all of this I remember how miserable I really was and wonder how I made it through each day. I was awful sick but I was not going to let RP win and I was not going to be sick. I never missed a day of work and I was able to care for my Dad, and a new born baby. Maybe not the greatest of care but I did the best I knew how. My Dr. told me more than once that I didn't know how to be sick. I am glad because I don't want to be sick. Dr. B retired 3 or so years ago and I sure hated to see him go. He saved my life as far as I am concerned. He was there when I needed him day or night or whenever. He knew I wouldn't call unless I was really sick. Dr. H. took over his practice and we never hit it off. I decided to see if I could get into Dr. W's practice after a year with Dr. H. Dr. W wasn't taking new patients but...I was lucky I had an in and didn't even know it. Dr. W.'s nurses were Dr. B's. They put in a good word and having RP doesn't hurt and he now sees me. He is great too but not like Dr. B. My appt. lasts 30 to 45 min. with him. I only go now every 3 mo. which is a great plus. Compared to the once a mo. it used to be. Well that is a condensed version of my story. I have had flares in ears, nose, tailbone, wrists, ribs. So far so good the flares have been in the exterior cartilage and have been minor compared to what they were before I was diagnosed. Besides the extra weight that I can't seem to get rid of to look at me you would not know I was even an RP'r. So see there is hope and a light to the end of the tunnel. Lots of Love Glenda ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Hi Glenda, Tell me about your tailbone flares. I have constant pain in my tailbone and when I tell the docs they look at me like I'm from Mars! Elaine in pain Glenda's Story Here is my story. Thought I better get at it before Heidi decided to come after me with her pain medicine. I have no idea how to start but I guess here goes. I work in a Security type job and I worked evenings and nights out in the weather. Plus I am a pretty rough and tumble type person. Never sick much in my life and never went to the Doctor except to have my two kids. I had my first flare in 1991. At least that is what I am thinking. I think it was in my right elbow to start with. Yes that sounds weird but I did a lot of driving and had a stick shift. Didn't think much of it except it stayed sore for a long time or it seemed like it. It was a year or so and then I had an ear flare. The first one I ignored as far as going to the Dr. that is. Then I had another one a few months later and I finally went to the Dr. thinking that I had an infection of some type. The Dr. gave me anti-biotic and it went away and about 3 or so months later it happened again. Same treatment and it went away again. Well the third one was a charm it was a full blown flare and really hurting to the point I thought I was going to go crazy if it didn't stop.(Cold weather didn't help it none either) This time I went to an urgent care unit and they advised me that they didn't think it was an infection. Dr. on call (young just out of school) advised me that he thought it was something else and he wanted me to see a Dermatologist. He didn't want to say what he thought it was but thought it was important that I see the other Dr. The next day I went to the Dermatologist. He wanted to do some test and he put me on pred. a mega dose I don't even remember what the dose was maybe 80 mg. but it threw me for a loop. I was sicker than a dog. I returned to his office doing a lot better but still not feeling well. He told me I had RP wrote the word on a chalkboard and said this is what you have and what you see on the chalkboard is how much is known about it. He said the reason that he put me on such a high dose of pred was to prove to me that it worked. He gave me that awful information out of the medical journals, told me he would see me the next time my ears were hurting me and that was it. No info, no nothing just told me to read the paperwork. I left his office scared to death. I read the paperwork and then I thought I was going to die and was even more scared. Well I am not one to give up or let something get the better of me so I decide I was going to fight whatever it was that I had. I called the dermatologist back..which I thought was a real jerk, and asked him if he could recommend a good Dr. for me to see other than him. He recommended that I see Dr. W. Dr. W. was not available because he wasn't taking any new patients. He is a very highly recommended Dr. and a specials in Rheumetology in this area. When I called and couldn't get in I asked if there was another Rheumy I could see and they referred me to Dr. B. He was my life saver! Dr. B. took one look at me and knew the diagnoses was correct and that I need help. He told me that the dermo was a friend of his and was a little abrupt at times. He sit down and explained it all to me and told me to leave my care in his hands and he would get me straightened out. I did and he did! He put me on 200 mg. of Imuran along with 60 mg of pred. but this time we worked our way up to this dose. After about 6 mo. or so things started to settle down and I was allowed to taper down on the pred. After about a year I tapered down on the Imuran to 150mg. a day. In between this time I tried numerous other meds. for depression, hormonal, and sleep problems. I think it was all cause by the pred. now that I think back on it. When I was first diagnose in 1993 I was having female problems too. I was told that RP could be brought on by a virus, change in your body or stress. All of which were going on in my life at the time. After struggling with flares and female problems for 2 years. I finally had a hysterectomy in December of 1995. This is when things started to turn around for me. It took awhile but I was feeling better. It was like the meds that I was having to take were fighting with each other. I got to feeling so much better that I was able to go completely off the Pred.(except for flares) and the Imuran was/is down to 100 mg. a day. This was done by the end of 1996. When I think back on all of this I remember how miserable I really was and wonder how I made it through each day. I was awful sick but I was not going to let RP win and I was not going to be sick. I never missed a day of work and I was able to care for my Dad, and a new born baby. Maybe not the greatest of care but I did the best I knew how. My Dr. told me more than once that I didn't know how to be sick. I am glad because I don't want to be sick. Dr. B retired 3 or so years ago and I sure hated to see him go. He saved my life as far as I am concerned. He was there when I needed him day or night or whenever. He knew I wouldn't call unless I was really sick. Dr. H. took over his practice and we never hit it off. I decided to see if I could get into Dr. W's practice after a year with Dr. H. Dr. W wasn't taking new patients but...I was lucky I had an in and didn't even know it. Dr. W.'s nurses were Dr. B's. They put in a good word and having RP doesn't hurt and he now sees me. He is great too but not like Dr. B. My appt. lasts 30 to 45 min. with him. I only go now every 3 mo. which is a great plus. Compared to the once a mo. it used to be. Well that is a condensed version of my story. I have had flares in ears, nose, tailbone, wrists, ribs. So far so good the flares have been in the exterior cartilage and have been minor compared to what they were before I was diagnosed. Besides the extra weight that I can't seem to get rid of to look at me you would not know I was even an RP'r. So see there is hope and a light to the end of the tunnel. Lots of Love Glenda ____________________________________________________ IncrediMail - Email has finally evolved - Click Here 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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