Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 This is mostly to all our old timers. Hi there !!! Well I wonder where most of you gentle Mans and Ladies are ??? We have not heart from so many of you and it sure would be nice to hear from each of you. Yes we do need you all !!!! Remember how it was when you first found this group ??? How hungry you all where for Information on RP ??? Gee it would be so nice to hear from you all at least once every two weeks. Yes all our newsiest members really need your input. Yup, you all got so much information the new ones could use now. So please be Kind and do it. I promise it wont hurt you but will make you feel better knowing you are helping all the new ones here now. Yes Gentle mans that includes you do.!!!! I also would like to ask for everyone in this group including the new members to do something we done at our get-together here in Okieland. That was a eye opener for many and very interesting. Please tell us how long you had RP and all the problems you had at the beginning . What Medicine you tried and did not work and what you all taking now. You do not have to write a book just a short general post will do. Then in two weeks. We would like to know how the Family deals with your RP> then after that we would like to hear the spouses side to leaving with RP. So what you all think about that.??? Please do it. you will learn a lot from this not only about your self but how everyone has been dealing with it. Are you all game for it ??? Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 This is mostly to all our old timers. Hi there !!! Well I wonder where most of you gentle Mans and Ladies are ??? We have not heart from so many of you and it sure would be nice to hear from each of you. Yes we do need you all !!!! Remember how it was when you first found this group ??? How hungry you all where for Information on RP ??? Gee it would be so nice to hear from you all at least once every two weeks. Yes all our newsiest members really need your input. Yup, you all got so much information the new ones could use now. So please be Kind and do it. I promise it wont hurt you but will make you feel better knowing you are helping all the new ones here now. Yes Gentle mans that includes you do.!!!! I also would like to ask for everyone in this group including the new members to do something we done at our get-together here in Okieland. That was a eye opener for many and very interesting. Please tell us how long you had RP and all the problems you had at the beginning . What Medicine you tried and did not work and what you all taking now. You do not have to write a book just a short general post will do. Then in two weeks. We would like to know how the Family deals with your RP> then after that we would like to hear the spouses side to leaving with RP. So what you all think about that.??? Please do it. you will learn a lot from this not only about your self but how everyone has been dealing with it. Are you all game for it ??? Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Hi Heidi, I am here, just not posting a lot. I have been doing real good and see that there are others in the group that need to post and hear from others who can make helpful suggestions for them. I am reading and keeping up with others and keeping them in my prayers. Hope Don is doing well and you too! I love you all and don't ever think that when you don't hear from "Lulu" that I have forgotten a single one of you folks. How can anyone forget such a great group of people who have meant the world to them? I will close for now. Love and Prayers, Lucy -- Where are you all ??? This is mostly to all our old timers. Hi there !!! Well I wonder where most of you gentle Mans and Ladies are ??? We have not heart from so many of you and it sure would be nice to hear from each of you. Yes we do need you all !!!! Remember how it was when you first found this group ??? How hungry you all where for Information on RP ??? Gee it would be so nice to hear from you all at least once every two weeks. Yes all our newsiest members really need your input. Yup, you all got so much information the new ones could use now. So please be Kind and do it. I promise it wont hurt you but will make you feel better knowing you are helping all the new ones here now. Yes Gentle mans that includes you do.!!!! I also would like to ask for everyone in this group including the new members to do something we done at our get-together here in Okieland. That was a eye opener for many and very interesting. Please tell us how long you had RP and all the problems you had at the beginning . What Medicine you tried and did not work and what you all taking now. You do not have to write a book just a short general post will do. Then in two weeks. We would like to know how the Family deals with your RP> then after that we would like to hear the spouses side to leaving with RP. So what you all think about that.??? Please do it. you will learn a lot from this not only about your self but how everyone has been dealing with it. Are you all game for it ??? 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...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Hi Heidi, I am here, just not posting a lot. I have been doing real good and see that there are others in the group that need to post and hear from others who can make helpful suggestions for them. I am reading and keeping up with others and keeping them in my prayers. Hope Don is doing well and you too! I love you all and don't ever think that when you don't hear from "Lulu" that I have forgotten a single one of you folks. How can anyone forget such a great group of people who have meant the world to them? I will close for now. Love and Prayers, Lucy -- Where are you all ??? This is mostly to all our old timers. Hi there !!! Well I wonder where most of you gentle Mans and Ladies are ??? We have not heart from so many of you and it sure would be nice to hear from each of you. Yes we do need you all !!!! Remember how it was when you first found this group ??? How hungry you all where for Information on RP ??? Gee it would be so nice to hear from you all at least once every two weeks. Yes all our newsiest members really need your input. Yup, you all got so much information the new ones could use now. So please be Kind and do it. I promise it wont hurt you but will make you feel better knowing you are helping all the new ones here now. Yes Gentle mans that includes you do.!!!! I also would like to ask for everyone in this group including the new members to do something we done at our get-together here in Okieland. That was a eye opener for many and very interesting. Please tell us how long you had RP and all the problems you had at the beginning . What Medicine you tried and did not work and what you all taking now. You do not have to write a book just a short general post will do. Then in two weeks. We would like to know how the Family deals with your RP> then after that we would like to hear the spouses side to leaving with RP. So what you all think about that.??? Please do it. you will learn a lot from this not only about your self but how everyone has been dealing with it. Are you all game for it ??? 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...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Heidi, that sounds like a wonderful idea... I'm all for it.. You can never have enough information... We will also be using personal stories in our newletter each month. So if we get the members permission, maybe we could post it. Also use posts about how the family is dealing with it... YOU just come up with everything!! I love you girl! Do you want to hear from all of us who whine and complain everyday too??? LOL What would we ever do without you??? I want to bring you home with me. hugs Speaking of not posting.......PATTY B......where are you.... are you reading your date book????? We miss you!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Heidi, that sounds like a wonderful idea... I'm all for it.. You can never have enough information... We will also be using personal stories in our newletter each month. So if we get the members permission, maybe we could post it. Also use posts about how the family is dealing with it... YOU just come up with everything!! I love you girl! Do you want to hear from all of us who whine and complain everyday too??? LOL What would we ever do without you??? I want to bring you home with me. hugs Speaking of not posting.......PATTY B......where are you.... are you reading your date book????? We miss you!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Speaking of not posting.......PATTY B......where are you.... are you reading your date book????? We miss you!!! , I thought the same thing? Patty where are you? We miss you ! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Speaking of not posting.......PATTY B......where are you.... are you reading your date book????? We miss you!!! , I thought the same thing? Patty where are you? We miss you ! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 Okay Sharon.... I will be second.. LOL I had my first flare with my ear in 1998. (Think I had rib flares and such much earlier). Was dx as cellulitus. Was put on antibiotics. Didn't do any good. Went daily for inject. of anitbiotics and after 3 weeks it finally cleared up. Had my second flare a year later. Again treated with antibiotics.. No help... Was put on Pred and sent to an ENT. He dx me immediately, but didn't know how to treat it. Tried to find a rheumy who would see me and finally found one two hours away. He started me on vioxx with the pred. It was no longer controling the RP>(was on 80mg of pred) He made me go off the vioxx and started me on Methotrexate. I was sent to Medical Center where it was confirmed as RP. Had a biopsy of my ear, but didn't really prove RP. That rheumy couldn't handle me any more so found one 3 hors away. He kept me on metho, but was more concerned about my fibro. He felt that I wasn't flaring unless I had a red ear and I had a high sed rate or C-reactive protein. Well after a year, and no decrease in the pred, I told him I wanted off the metho and to try something else. He put me on Imuran and it made me deathly sick... I stopped it and tried it again in a few weeks and the same thing happened. Went on antibiotic therapy. Was put on Biactin, 250mg a day. Have been on it for 4 months and have gotten down to 8mg of pred. I have just started on Plaquenil. Hope to continute decreasing pred after the first of the year. I am now going to Stanford Medical Center and have found a great team of doctors who are interested in RP. I have a cardiologist ( I have heart valve damage from RP), a ENT, a Pulmonologist, and a Rheumy there. They are in the process of running baseline tests. So far I have had a echocardiogram, EKG, High resolution CT for my chest, Pulmonary Function Test, Fiber optic scope on my vocal cords, and am scheduled for a hearing test and a bone density test. They are giving me the works. So far everything looks fine... That is wonderful news. I am fairly flare free. Occasionally I have a rib flare or start of an ear flare but I raise my pred (with my dr. ok) and come back down when it has subsided. I am lowering my Pred slowly, 1mg a month. I am currently taking 8mg pred, 250 mg Biaxin, and 400mg plaquenil for RP. Also zesteril for my heart valves. I feel I am doing great and can't complain... I think if we get a good team of drs that is the first step to a great treatment. Oh.. and I also have an opthomologist. See him every 3 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 Okay Sharon.... I will be second.. LOL I had my first flare with my ear in 1998. (Think I had rib flares and such much earlier). Was dx as cellulitus. Was put on antibiotics. Didn't do any good. Went daily for inject. of anitbiotics and after 3 weeks it finally cleared up. Had my second flare a year later. Again treated with antibiotics.. No help... Was put on Pred and sent to an ENT. He dx me immediately, but didn't know how to treat it. Tried to find a rheumy who would see me and finally found one two hours away. He started me on vioxx with the pred. It was no longer controling the RP>(was on 80mg of pred) He made me go off the vioxx and started me on Methotrexate. I was sent to Medical Center where it was confirmed as RP. Had a biopsy of my ear, but didn't really prove RP. That rheumy couldn't handle me any more so found one 3 hors away. He kept me on metho, but was more concerned about my fibro. He felt that I wasn't flaring unless I had a red ear and I had a high sed rate or C-reactive protein. Well after a year, and no decrease in the pred, I told him I wanted off the metho and to try something else. He put me on Imuran and it made me deathly sick... I stopped it and tried it again in a few weeks and the same thing happened. Went on antibiotic therapy. Was put on Biactin, 250mg a day. Have been on it for 4 months and have gotten down to 8mg of pred. I have just started on Plaquenil. Hope to continute decreasing pred after the first of the year. I am now going to Stanford Medical Center and have found a great team of doctors who are interested in RP. I have a cardiologist ( I have heart valve damage from RP), a ENT, a Pulmonologist, and a Rheumy there. They are in the process of running baseline tests. So far I have had a echocardiogram, EKG, High resolution CT for my chest, Pulmonary Function Test, Fiber optic scope on my vocal cords, and am scheduled for a hearing test and a bone density test. They are giving me the works. So far everything looks fine... That is wonderful news. I am fairly flare free. Occasionally I have a rib flare or start of an ear flare but I raise my pred (with my dr. ok) and come back down when it has subsided. I am lowering my Pred slowly, 1mg a month. I am currently taking 8mg pred, 250 mg Biaxin, and 400mg plaquenil for RP. Also zesteril for my heart valves. I feel I am doing great and can't complain... I think if we get a good team of drs that is the first step to a great treatment. Oh.. and I also have an opthomologist. See him every 3 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 --- Heidi Main wrote: > This is mostly to all our old timers. I also would like to ask > for everyone in this group including the new members > to do something we done at our get-together here in > Okieland. That was a eye opener for many and very > interesting. Please tell us how long you had RP and > all the problems you had at the beginning . What > Medicine you tried and did not work and what you all > taking now. Hi Heidi and all, Well, I haven't seen anyone do this yet, so I'll go first. I have been diagnosed with RP only since May of 2001, but I think I had it for several years before I was diagnosed. Problems at the beginning were joint pain, ear flares, vertigo. Medicines tried that did not work were: Sulfasalazine, Plaquenil, Methotrexate What I am taking now: (for RP only) Enbrel, Prednisone, Arava, Imuran Hope someone else participates. Love, Sharon > > > > > > > > > > > > > > > > > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 --- Heidi Main wrote: > This is mostly to all our old timers. I also would like to ask > for everyone in this group including the new members > to do something we done at our get-together here in > Okieland. That was a eye opener for many and very > interesting. Please tell us how long you had RP and > all the problems you had at the beginning . What > Medicine you tried and did not work and what you all > taking now. Hi Heidi and all, Well, I haven't seen anyone do this yet, so I'll go first. I have been diagnosed with RP only since May of 2001, but I think I had it for several years before I was diagnosed. Problems at the beginning were joint pain, ear flares, vertigo. Medicines tried that did not work were: Sulfasalazine, Plaquenil, Methotrexate What I am taking now: (for RP only) Enbrel, Prednisone, Arava, Imuran Hope someone else participates. Love, Sharon > > > > > > > > > > > > > > > > > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 Okay, well I have had rp for about 5 yrs now,, at first they didn't know what was going on so they sent me to an ENT doc,, many times. He put me on double doses of pred twice a day for six months,, gained weight but didn't improve did more tests then decided to send me to a RHeumy who thought I had lupus and did bunches of tests lots of vials of blood). Then he came up with the rp thing. At first my nose was swelling and getting red, then my ears started burning, and the final straw was when I was driving home from taking kids to school I had to pull over thinking that I was having a major Heart Attack, little did I know it was in my rib cartilage. Put me on this one med ( I think it started with an M) cant remember name turned me into Dr Jekyyl and Mr. Hyde. Then put me on Dapsone built it up to 150 mg a day and my feet and hands were going numb so he scaled back. Have been on Dapsone ever since haven't seen a Rheumy in awhile, but the Docs say it is dormant, my strength went from being able to move furniture from one room to the other by myself to not even being able to move the bed by myself. Plus right now going through a lot of stress and praying nothing flares up. BJ Re: Where are you all ??? --- Heidi Main wrote:> This is mostly to all our old timers.I also would like to ask> for everyone in this group including the new members> to do something we done at our get-together here in> Okieland. That was a eye opener for many and very> interesting. Please tell us how long you had RP and> all the problems you had at the beginning . What> Medicine you tried and did not work and what you all> taking now.Hi Heidi and all,Well, I haven't seen anyone do this yet, so I'll gofirst. I have been diagnosed with RP only since Mayof 2001, but I think I had it for several years beforeI was diagnosed.Problems at the beginning were joint pain, ear flares,vertigo.Medicines tried that did not work were:Sulfasalazine, Plaquenil, MethotrexateWhat I am taking now: (for RP only) Enbrel,Prednisone, Arava, ImuranHope someone else participates. Love, Sharon>>>>>>>>>>>>>>>>>>=====__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 Okay, well I have had rp for about 5 yrs now,, at first they didn't know what was going on so they sent me to an ENT doc,, many times. He put me on double doses of pred twice a day for six months,, gained weight but didn't improve did more tests then decided to send me to a RHeumy who thought I had lupus and did bunches of tests lots of vials of blood). Then he came up with the rp thing. At first my nose was swelling and getting red, then my ears started burning, and the final straw was when I was driving home from taking kids to school I had to pull over thinking that I was having a major Heart Attack, little did I know it was in my rib cartilage. Put me on this one med ( I think it started with an M) cant remember name turned me into Dr Jekyyl and Mr. Hyde. Then put me on Dapsone built it up to 150 mg a day and my feet and hands were going numb so he scaled back. Have been on Dapsone ever since haven't seen a Rheumy in awhile, but the Docs say it is dormant, my strength went from being able to move furniture from one room to the other by myself to not even being able to move the bed by myself. Plus right now going through a lot of stress and praying nothing flares up. BJ Re: Where are you all ??? --- Heidi Main wrote:> This is mostly to all our old timers.I also would like to ask> for everyone in this group including the new members> to do something we done at our get-together here in> Okieland. That was a eye opener for many and very> interesting. Please tell us how long you had RP and> all the problems you had at the beginning . What> Medicine you tried and did not work and what you all> taking now.Hi Heidi and all,Well, I haven't seen anyone do this yet, so I'll gofirst. I have been diagnosed with RP only since Mayof 2001, but I think I had it for several years beforeI was diagnosed.Problems at the beginning were joint pain, ear flares,vertigo.Medicines tried that did not work were:Sulfasalazine, Plaquenil, MethotrexateWhat I am taking now: (for RP only) Enbrel,Prednisone, Arava, ImuranHope someone else participates. Love, Sharon>>>>>>>>>>>>>>>>>>=====__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.