Guest guest Posted September 2, 2001 Report Share Posted September 2, 2001 barvey@... wrote: I've just finished 2 weekds prednisone, 2nd week coming down as per doc's instructions - finished Wednesday and by Sat. my ear flares are back just as bad! My doc and I thought we'd go straight into remission - I'm seeing him Wed. Just wonder how many people have gone thru this. This flareup has been going on for nearly 6 months and I dread this is the thin end of the wedge for ongoing pred.Any responses welcomeBig EarsYahoo! I've been on continuous prednisone for over 18 months. Right now I am trying to taper and my ears are going bonkers! I thought they would feel better if I could just slice them right off the sides of my head. As far as I know prednisone does not send you into a remission. It surely hasn't for me! I think we only achieve remission when our bodies do it on their own. What other meds are you on? Are you seeing a rheumatologist? Hope you get some answers on Wednesday. It can be a long and trying process to get the right medications. Right now I am waiting for my Enbrel to arrive so I can give that one a try. Good luck, Sharon __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2001 Report Share Posted September 2, 2001 barvey@... wrote: I've just finished 2 weekds prednisone, 2nd week coming down as per doc's instructions - finished Wednesday and by Sat. my ear flares are back just as bad! My doc and I thought we'd go straight into remission - I'm seeing him Wed. Just wonder how many people have gone thru this. This flareup has been going on for nearly 6 months and I dread this is the thin end of the wedge for ongoing pred.Any responses welcomeBig EarsYahoo! I've been on continuous prednisone for over 18 months. Right now I am trying to taper and my ears are going bonkers! I thought they would feel better if I could just slice them right off the sides of my head. As far as I know prednisone does not send you into a remission. It surely hasn't for me! I think we only achieve remission when our bodies do it on their own. What other meds are you on? Are you seeing a rheumatologist? Hope you get some answers on Wednesday. It can be a long and trying process to get the right medications. Right now I am waiting for my Enbrel to arrive so I can give that one a try. Good luck, Sharon __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2001 Report Share Posted September 2, 2001 Hi Big Ears, I only called you that cause that is how you signed off, but Lucy here, I can sympathize. My first and only major ear flare was what the Dr.'s diagnosed me with in Jan. 2000. I have not had a major flare of the ears since then, only the hot, red ears that would go away within the day or hour. Mine has been mostly nose and eyes. There were only a few time I would go to the ENT Clinic with red ears. My " big flare " lasted about three weeks. I can't imagine going through that pain for 6 months even if it is off and on. You take care and keep posting . Let us know how you are doing. By the way, have you tried Dapsone? That is all I am on at the present. I was on Prednisone and it just about did me in. I ended up with Diabetes, brought on my steroid use. As soon as I got off of the Prednisone, my sugar level went down and I got off of the insulin. On a pill now and sure was glad to see that I could stay off or the " P " word. Some meds can do you as much harm as they do good in other ways. I can speak for that fact. Anyway, I am blessed in that the Dapsone has been holding my RP " in place " for some time now. Love and Prayers, Lucy in North Carolina L10@... MOAN OF THE DAY > I've just finished 2 weekds prednisone, 2nd week coming down as per > doc's instructions - finished Wednesday and by Sat. my ear flares are > back just as bad! My doc and I thought we'd go straight into > remission - I'm seeing him Wed. Just wonder how many people have > gone thru this. This flareup has been going on for nearly 6 months > and I dread this is the thin end of the wedge for ongoing pred. > > Any responses welcome > > Big Ears > > > > 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 September 2, 2001 Report Share Posted September 2, 2001 Hi Big Ears, I only called you that cause that is how you signed off, but Lucy here, I can sympathize. My first and only major ear flare was what the Dr.'s diagnosed me with in Jan. 2000. I have not had a major flare of the ears since then, only the hot, red ears that would go away within the day or hour. Mine has been mostly nose and eyes. There were only a few time I would go to the ENT Clinic with red ears. My " big flare " lasted about three weeks. I can't imagine going through that pain for 6 months even if it is off and on. You take care and keep posting . Let us know how you are doing. By the way, have you tried Dapsone? That is all I am on at the present. I was on Prednisone and it just about did me in. I ended up with Diabetes, brought on my steroid use. As soon as I got off of the Prednisone, my sugar level went down and I got off of the insulin. On a pill now and sure was glad to see that I could stay off or the " P " word. Some meds can do you as much harm as they do good in other ways. I can speak for that fact. Anyway, I am blessed in that the Dapsone has been holding my RP " in place " for some time now. Love and Prayers, Lucy in North Carolina L10@... MOAN OF THE DAY > I've just finished 2 weekds prednisone, 2nd week coming down as per > doc's instructions - finished Wednesday and by Sat. my ear flares are > back just as bad! My doc and I thought we'd go straight into > remission - I'm seeing him Wed. Just wonder how many people have > gone thru this. This flareup has been going on for nearly 6 months > and I dread this is the thin end of the wedge for ongoing pred. > > Any responses welcome > > Big Ears > > > > 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 September 2, 2001 Report Share Posted September 2, 2001 Dear B. E., The docs could not get me of prednisone either. Every time the dose dropped to 30 mgs - Boom, big nose, big ears, eye pain like crazy. Then the pred went right back up. After about six months of that I was pretty frustrated and said "Hey, this isn't working." That's when they put me on methotrexate. It was hard to tolerate at first and I highly recommend taking folic acid (talk to the doc first) with it. That has been the only thing that has somewhat kept it under control. I am currently on 20 mgs of metho and 15 mgs of pred and doing fairly well. It has taken them 1 1/2 years to get it right. I am one of the chronic cases and will always be on the pred and metho, but getting the dosage correct for you is very important. Everyone is different with this disease and it does take time, but there is hope. If you haven't stopped flaring in six months the docs need to seriously look at other treatment along with the pred. If you are already on metho or another immunosuppressant then they need to look at the dosage. With this disease you need to be informed and NAG your doctors or you wont get proper treatment. You have to realise that most docs don't learn about it at school and don't even know what it is. With the work load of patients that doctors see today they don't even have time to read up on it. So the ball is in your court. You can't change the fact that you have the disease, but what you can change is the treatment you get. You must be aggressive. My former rheumy did little for my pain, just shrugged it off. Now I have a new rheumy and one with a connective tissue specialty. I have to travel 4 hours (two hours driving and two hour ferry trip) to see this guy but it's been worth it. If you hired a carpenter that didn't know how to use a hammer, wouldn't find another? Well, doctors are the same way. Find a PCP that is interested in your case and a rheumy that knows about RP even if it means you have to travel. It is in your best interest to do so. If you don't look after you, who will. I'm sorry for being so assertive but I feel very strongly about this and it has been the experience of most in the group that you need to be informed and assertive with your treatment. I hope that your flares get under control soon. And don't forget that we are all here for any questions even if they seem silly to you. You never know what might help someone else or what help you might find. Take care and be well, Elaine the pain! MOAN OF THE DAY I've just finished 2 weekds prednisone, 2nd week coming down as per doc's instructions - finished Wednesday and by Sat. my ear flares are back just as bad! My doc and I thought we'd go straight into remission - I'm seeing him Wed. Just wonder how many people have gone thru this. This flareup has been going on for nearly 6 months and I dread this is the thin end of the wedge for ongoing pred.Any responses welcomeBig EarsDISCLAIMER!!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 September 2, 2001 Report Share Posted September 2, 2001 Dear B. E., The docs could not get me of prednisone either. Every time the dose dropped to 30 mgs - Boom, big nose, big ears, eye pain like crazy. Then the pred went right back up. After about six months of that I was pretty frustrated and said "Hey, this isn't working." That's when they put me on methotrexate. It was hard to tolerate at first and I highly recommend taking folic acid (talk to the doc first) with it. That has been the only thing that has somewhat kept it under control. I am currently on 20 mgs of metho and 15 mgs of pred and doing fairly well. It has taken them 1 1/2 years to get it right. I am one of the chronic cases and will always be on the pred and metho, but getting the dosage correct for you is very important. Everyone is different with this disease and it does take time, but there is hope. If you haven't stopped flaring in six months the docs need to seriously look at other treatment along with the pred. If you are already on metho or another immunosuppressant then they need to look at the dosage. With this disease you need to be informed and NAG your doctors or you wont get proper treatment. You have to realise that most docs don't learn about it at school and don't even know what it is. With the work load of patients that doctors see today they don't even have time to read up on it. So the ball is in your court. You can't change the fact that you have the disease, but what you can change is the treatment you get. You must be aggressive. My former rheumy did little for my pain, just shrugged it off. Now I have a new rheumy and one with a connective tissue specialty. I have to travel 4 hours (two hours driving and two hour ferry trip) to see this guy but it's been worth it. If you hired a carpenter that didn't know how to use a hammer, wouldn't find another? Well, doctors are the same way. Find a PCP that is interested in your case and a rheumy that knows about RP even if it means you have to travel. It is in your best interest to do so. If you don't look after you, who will. I'm sorry for being so assertive but I feel very strongly about this and it has been the experience of most in the group that you need to be informed and assertive with your treatment. I hope that your flares get under control soon. And don't forget that we are all here for any questions even if they seem silly to you. You never know what might help someone else or what help you might find. Take care and be well, Elaine the pain! MOAN OF THE DAY I've just finished 2 weekds prednisone, 2nd week coming down as per doc's instructions - finished Wednesday and by Sat. my ear flares are back just as bad! My doc and I thought we'd go straight into remission - I'm seeing him Wed. Just wonder how many people have gone thru this. This flareup has been going on for nearly 6 months and I dread this is the thin end of the wedge for ongoing pred.Any responses welcomeBig EarsDISCLAIMER!!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 September 4, 2001 Report Share Posted September 4, 2001 Just wonder how many people have > gone thru this. This flareup has been going on for nearly 6 months > and I dread this is the thin end of the wedge for ongoing pred. > > Any responses welcome > > Big Ears Barb, I went through the same thing... My first flare cleared up just fine but the second one a year later stayed and stayed and stayed. LOL Guess it never went away... I have been on pred for 3 years straight... Unfortunately the metho nor the Imuran worked at getting the dose down... Please check with your dr.. You should not be flaring all the time.. Maybe metho or another drug will help you to get off the pred, but you should be on something to stop the flares.. Remember, with each flare damage can be done.. My goal is to get off the pred and am now at 9mg... YEAH!!! It comes to a point where the pred does more damage than good and you and your dr should be looking in other directions or a longer dose of pred.. Just my 2 cents. LOL Hope you are doing fine other wise... Been shopping lately??? LOL hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2001 Report Share Posted September 4, 2001 Just wonder how many people have > gone thru this. This flareup has been going on for nearly 6 months > and I dread this is the thin end of the wedge for ongoing pred. > > Any responses welcome > > Big Ears Barb, I went through the same thing... My first flare cleared up just fine but the second one a year later stayed and stayed and stayed. LOL Guess it never went away... I have been on pred for 3 years straight... Unfortunately the metho nor the Imuran worked at getting the dose down... Please check with your dr.. You should not be flaring all the time.. Maybe metho or another drug will help you to get off the pred, but you should be on something to stop the flares.. Remember, with each flare damage can be done.. My goal is to get off the pred and am now at 9mg... YEAH!!! It comes to a point where the pred does more damage than good and you and your dr should be looking in other directions or a longer dose of pred.. Just my 2 cents. LOL Hope you are doing fine other wise... Been shopping lately??? LOL hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Hello and I'm sorry to hear about your ongoing flare. I too suffer from these ongoing flares that return with the slightest drop in pred. It is all very frustrating!! My doctor has decided that just going up on the pred only to have the flare return in full force after a small drop in pred had made him decide to keep me at 80mgs. only I'm still flaring. We're trying some new things but to no avail. You may be at the place where you will have to stay on the pred. At least it helps but I know what a hard decsion it can be. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Hello and I'm sorry to hear about your ongoing flare. I too suffer from these ongoing flares that return with the slightest drop in pred. It is all very frustrating!! My doctor has decided that just going up on the pred only to have the flare return in full force after a small drop in pred had made him decide to keep me at 80mgs. only I'm still flaring. We're trying some new things but to no avail. You may be at the place where you will have to stay on the pred. At least it helps but I know what a hard decsion it can be. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 In a message dated 09/04/2001 11:57:16 PM Central Daylight Time, RCColloran@... writes: << My goal is to get off the pred and am now at 9mg. >> , just 9 months and you'll be off it! It was so absolutely wonderful getting to know you and Rich. This get together was just what the doctor ordered for me. Now you are so much more than just a name. You have a face and a personality and a heart and, and, and. I am so glad I met you. See, I guess this RP was good for something! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 In a message dated 09/04/2001 11:57:16 PM Central Daylight Time, RCColloran@... writes: << My goal is to get off the pred and am now at 9mg. >> , just 9 months and you'll be off it! It was so absolutely wonderful getting to know you and Rich. This get together was just what the doctor ordered for me. Now you are so much more than just a name. You have a face and a personality and a heart and, and, and. I am so glad I met you. See, I guess this RP was good for something! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 In a message dated 09/06/2001 4:56:08 PM Central Daylight Time, elecurrier79@... writes: << decide to keep me at 80mgs. only I'm still flaring. >> Ellen, are you on anything besides the pred? I worry about what that high a dose is doing to your body. Please let me know if you are on something besides the pred. Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 In a message dated 09/06/2001 4:56:08 PM Central Daylight Time, elecurrier79@... writes: << decide to keep me at 80mgs. only I'm still flaring. >> Ellen, are you on anything besides the pred? I worry about what that high a dose is doing to your body. Please let me know if you are on something besides the pred. Love, Judy 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.