Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Your body is just getting use to your significant weight loss. When I hit those long plateaus, the nutritionist told me to add more fat and it worked. Stay calm-it will come off.Ellen(Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Your body is just getting use to your significant weight loss. When I hit those long plateaus, the nutritionist told me to add more fat and it worked. Stay calm-it will come off.Ellen(Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Your body is just getting use to your significant weight loss. When I hit those long plateaus, the nutritionist told me to add more fat and it worked. Stay calm-it will come off.Ellen(Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Your body is just getting use to your significant weight loss. When I hit those long plateaus, the nutritionist told me to add more fat and it worked. Stay calm-it will come off.Ellen(Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Glenda, I am currently taking Methotrexate 25mg every Friday and Prednisone 10mg every day. I just started the Methotrexate in June, when I was diagnosed. I am certain that we just haven't hit on the right combination of medications for me yet. I battled all of my symptoms-- with my primary symptom being severe hoarsness for 3.5 years and when I was finally diagnosed and put on medications in June, I thought I would finally start feeling better. Instead, I seem to be getting worse. I think my expectations may have been to high!!! My Dr.s are convinced that the reason I am not responding as well as I should be is because I am still working..... 2 weeks ago, I agreed to work part-time(20 hours per week) for 6 weeks to see if this made any difference. I am at the end of my second week and I feel no better. I don't really know what the answer is for me but I will keep looking. Based on several of the posts that I have read since I joined this group 2 weeks ago, it seems like it takes quite some time to get meds. adjusted so I am just hanging in there for now. Any suggestions anyone????? Thanks, Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Re: Kathi >Date: Thu, 6 Sep 2001 18:58:16 -0700 > >Kathi >What meds are you taking? I hope more than just pred when you flare. You >should be on some type of a maintenance drug to control the flares! > >You are welcome for any info. I can give you. I don't know much but there >are those in the group that do and that is what we are all here for to help >each other. Keep posting you will get the answers you need! >Lots of Love >Glenda > > It surprised me when I had a hearing test done in July > and was found to have hearing loss of the high and low tones >specifically in > my right ear-- which is the ear I have the most problem with. I have no > idea when this occured where my ear started breaking down around the top > portion-- what I described earlier as it looks like someone has cut >small > chunks out of my ear. It wasn't painful while it was occuring. Thanks >for > your input!! > Kathi > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Glenda, I am currently taking Methotrexate 25mg every Friday and Prednisone 10mg every day. I just started the Methotrexate in June, when I was diagnosed. I am certain that we just haven't hit on the right combination of medications for me yet. I battled all of my symptoms-- with my primary symptom being severe hoarsness for 3.5 years and when I was finally diagnosed and put on medications in June, I thought I would finally start feeling better. Instead, I seem to be getting worse. I think my expectations may have been to high!!! My Dr.s are convinced that the reason I am not responding as well as I should be is because I am still working..... 2 weeks ago, I agreed to work part-time(20 hours per week) for 6 weeks to see if this made any difference. I am at the end of my second week and I feel no better. I don't really know what the answer is for me but I will keep looking. Based on several of the posts that I have read since I joined this group 2 weeks ago, it seems like it takes quite some time to get meds. adjusted so I am just hanging in there for now. Any suggestions anyone????? Thanks, Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Re: Kathi >Date: Thu, 6 Sep 2001 18:58:16 -0700 > >Kathi >What meds are you taking? I hope more than just pred when you flare. You >should be on some type of a maintenance drug to control the flares! > >You are welcome for any info. I can give you. I don't know much but there >are those in the group that do and that is what we are all here for to help >each other. Keep posting you will get the answers you need! >Lots of Love >Glenda > > It surprised me when I had a hearing test done in July > and was found to have hearing loss of the high and low tones >specifically in > my right ear-- which is the ear I have the most problem with. I have no > idea when this occured where my ear started breaking down around the top > portion-- what I described earlier as it looks like someone has cut >small > chunks out of my ear. It wasn't painful while it was occuring. Thanks >for > your input!! > Kathi > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp 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 9:00:51 PM Central Daylight Time, angelhearts61@... writes: << ar pain that feels like someone is jabbing the inside of my ear with an ice pick. This only lasts a few seconds at a time. It surprised me when I had a hearing test done in July >> Kathi, my two cents is that it's from the RP. I had an episode this summer where I went to bed perfectly fine and woke up totally deaf in my left ear (and since I am already deaf in my right ear, that really got my attenton). Went to PCP, he had no idea what could cause this, sent me directly to the ENT. He said it was from the RP. Put me right back on pred (20 mg) and slowly my hearing came back (did lose some low tones - high tones in tact) Get to the ENT. Get to the ENT to make sure you're not losing any more of your hearing Love, Judy O 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 9:00:51 PM Central Daylight Time, angelhearts61@... writes: << ar pain that feels like someone is jabbing the inside of my ear with an ice pick. This only lasts a few seconds at a time. It surprised me when I had a hearing test done in July >> Kathi, my two cents is that it's from the RP. I had an episode this summer where I went to bed perfectly fine and woke up totally deaf in my left ear (and since I am already deaf in my right ear, that really got my attenton). Went to PCP, he had no idea what could cause this, sent me directly to the ENT. He said it was from the RP. Put me right back on pred (20 mg) and slowly my hearing came back (did lose some low tones - high tones in tact) Get to the ENT. Get to the ENT to make sure you're not losing any more of your hearing Love, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Kathi You are right about getting the right combination of meds. Maybe the metho is the right med for you. I don't know that much about it or how long it takes to work. I know that some have had some rough going when they first start it but have done better latter on. Hang in there and feel free to post any time. Vent if you like that is what we are here for. The hard part for all of us is that no two people are alike. If we were the med thing would be a lot easier. I will be sending good thoughts and prayers your way that is for sure. Lots of Love Glenda Glenda,I am currently taking Methotrexate 25mg every Friday and Prednisone 10mg every day. I just started the Methotrexate in June, when I was diagnosed. I am certain that we just haven't hit on the right combination of medications for me yet. I battled all of my symptoms-- with my primary symptom being severe hoarsness for 3.5 years and when I was finally diagnosed and put on medications in June, I thought I would finally start feeling better. Instead, I seem to be getting worse. I think my expectations may have been to high!!! My Dr.s are convinced that the reason I am not responding as well as I should be is because I am still working..... 2 weeks ago, I agreed to work part-time(20 hours per week) for 6 weeks to see if this made any difference. I am at the end of my second week and I feel no better. I don't really know what the answer is for me but I will keep looking. Based on several of the posts that I have read since I joined this group 2 weeks ago, it seems like it takes quite some time to get meds. adjusted so I am just hanging in there for now. Any suggestions anyone?????Thanks, Kathi ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Kathi You are right about getting the right combination of meds. Maybe the metho is the right med for you. I don't know that much about it or how long it takes to work. I know that some have had some rough going when they first start it but have done better latter on. Hang in there and feel free to post any time. Vent if you like that is what we are here for. The hard part for all of us is that no two people are alike. If we were the med thing would be a lot easier. I will be sending good thoughts and prayers your way that is for sure. Lots of Love Glenda Glenda,I am currently taking Methotrexate 25mg every Friday and Prednisone 10mg every day. I just started the Methotrexate in June, when I was diagnosed. I am certain that we just haven't hit on the right combination of medications for me yet. I battled all of my symptoms-- with my primary symptom being severe hoarsness for 3.5 years and when I was finally diagnosed and put on medications in June, I thought I would finally start feeling better. Instead, I seem to be getting worse. I think my expectations may have been to high!!! My Dr.s are convinced that the reason I am not responding as well as I should be is because I am still working..... 2 weeks ago, I agreed to work part-time(20 hours per week) for 6 weeks to see if this made any difference. I am at the end of my second week and I feel no better. I don't really know what the answer is for me but I will keep looking. Based on several of the posts that I have read since I joined this group 2 weeks ago, it seems like it takes quite some time to get meds. adjusted so I am just hanging in there for now. Any suggestions anyone?????Thanks, Kathi ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Dear Glenda, I'm in the same boat, Can you give us the names of the maintenance drugs...Thanks Sue Marth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Dear Glenda, I'm in the same boat, Can you give us the names of the maintenance drugs...Thanks Sue Marth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hi Kathi again, Have you ever been tested for Srojgen's disease? I know I spelled it wrong, but the symptoms of it is dry eyes and dry mouth. W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hi Kathi again, Have you ever been tested for Srojgen's disease? I know I spelled it wrong, but the symptoms of it is dry eyes and dry mouth. W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hi , Yes, I was tested for Sjogren's and the tests were inconclusive, but it is felt very strongly by the Dr.'s that I do have this. Not only do I have the Dry eyes but I also have the dry mouth. With a little luck, in time, with the Prednisone and Methotrexate this will also clear up. I guess that only time will tell. Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Re: Kathi >Date: Sat, 8 Sep 2001 16:34:33 -0400 > >Hi Kathi again, >Have you ever been tested for Srojgen's disease? I know I spelled it >wrong, but the symptoms of it is dry eyes and dry mouth. > W > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hi , Yes, I was tested for Sjogren's and the tests were inconclusive, but it is felt very strongly by the Dr.'s that I do have this. Not only do I have the Dry eyes but I also have the dry mouth. With a little luck, in time, with the Prednisone and Methotrexate this will also clear up. I guess that only time will tell. Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Re: Kathi >Date: Sat, 8 Sep 2001 16:34:33 -0400 > >Hi Kathi again, >Have you ever been tested for Srojgen's disease? I know I spelled it >wrong, but the symptoms of it is dry eyes and dry mouth. > W > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 , I am not sure what people mean when they ask me if I am on a maintenance drug for RP. I am on Methotrexate and Prednisone. As for my eyes, The only thing I am using for them right now is Hypo-tears and Celluvisc. The only time that I have been to the eye Dr. was in February before I was Dx. I woke up one morning and the vision in my right eye was so severely blurred that I had no vision. After about 15 minutes my vision began coming back but it was very blurred through out that whole day. I also had a lot of pain in my eye and a major headache on the right side of my head. The next day when I saw the Dr. she was extremely concerned and told me that if someone didn't figure out what was wrong with me, on top of having no voice that I was going to be blind. She put me on a regiment of drops for the next 7 days -- 3 different types-- that I had to use every 30 minutes during waking hours and every hour in the night. A week later she re ran all of the tests and said that I had had about a 50% improvement. I did pretty well with my eyes after that until about 2 weeks ago and now I am having all of the problems again. I am trying to get an appt. with her again, but have to wait on the military to give me their blessing to make the appt. I would love to have a copy of the article that you have. It would probably be helpful for me to take to the Dr.. There is no Dr. in my area who has ever treated RP. My only saving grace at this point is that I am an RN and can do a lot of research and provide them with the information they need. Any information you can provide me with that I can take to her would be so helpful. Thanks again-- to you and EVERYONE in this group!! Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Kathi >Date: Sat, 8 Sep 2001 16:28:00 -0400 > >Hi Kathi, >In case I haven't welcomed you to our group WELCOME!!!! >Forgive me if someone has already ask this before, but are you on a >maintenance drug for your RP? If so what? If not, you sound like you need >to be something right away. >RP actually destroys the cartilage in your body, so without it, your ears >can go completely floppy and not stand up like a normal person's does. >I'm sure someone has helped you with the eye pain. If not, let me know and >I will send you a good article on RP and the eyes. >Ask any questions that you have. You have a wealth of knowledge here, use >it please! >Again, welcome!! > W > >>>>>>>>>>>>>>>>>>> >Does this sound like what other people feel??? >Thanks again for all of your help!! I hope that everyone had a great day! >Kathi > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 , I am not sure what people mean when they ask me if I am on a maintenance drug for RP. I am on Methotrexate and Prednisone. As for my eyes, The only thing I am using for them right now is Hypo-tears and Celluvisc. The only time that I have been to the eye Dr. was in February before I was Dx. I woke up one morning and the vision in my right eye was so severely blurred that I had no vision. After about 15 minutes my vision began coming back but it was very blurred through out that whole day. I also had a lot of pain in my eye and a major headache on the right side of my head. The next day when I saw the Dr. she was extremely concerned and told me that if someone didn't figure out what was wrong with me, on top of having no voice that I was going to be blind. She put me on a regiment of drops for the next 7 days -- 3 different types-- that I had to use every 30 minutes during waking hours and every hour in the night. A week later she re ran all of the tests and said that I had had about a 50% improvement. I did pretty well with my eyes after that until about 2 weeks ago and now I am having all of the problems again. I am trying to get an appt. with her again, but have to wait on the military to give me their blessing to make the appt. I would love to have a copy of the article that you have. It would probably be helpful for me to take to the Dr.. There is no Dr. in my area who has ever treated RP. My only saving grace at this point is that I am an RN and can do a lot of research and provide them with the information they need. Any information you can provide me with that I can take to her would be so helpful. Thanks again-- to you and EVERYONE in this group!! Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Kathi >Date: Sat, 8 Sep 2001 16:28:00 -0400 > >Hi Kathi, >In case I haven't welcomed you to our group WELCOME!!!! >Forgive me if someone has already ask this before, but are you on a >maintenance drug for your RP? If so what? If not, you sound like you need >to be something right away. >RP actually destroys the cartilage in your body, so without it, your ears >can go completely floppy and not stand up like a normal person's does. >I'm sure someone has helped you with the eye pain. If not, let me know and >I will send you a good article on RP and the eyes. >Ask any questions that you have. You have a wealth of knowledge here, use >it please! >Again, welcome!! > W > >>>>>>>>>>>>>>>>>>> >Does this sound like what other people feel??? >Thanks again for all of your help!! I hope that everyone had a great day! >Kathi > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Kathi, A maintenance drug is one you use to keep whatever is wrong with you in check. In other words, with RP, if you find a drug and dose that works and keeps your RP from flaring, you stay on the drug for a long time, (maybe forever), since it is doing it's job and keeping the RP under control. I take several maintenance drugs for different problems I have. Also, I sent you a post from a wonderful member of our group about RP and the eyes. Hope it helps. W >>>>>>>>>>>>>>>>>>>>>>>> ,I am not sure what people mean when they ask me if I am on a maintenance drug for RP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Kathi, A maintenance drug is one you use to keep whatever is wrong with you in check. In other words, with RP, if you find a drug and dose that works and keeps your RP from flaring, you stay on the drug for a long time, (maybe forever), since it is doing it's job and keeping the RP under control. I take several maintenance drugs for different problems I have. Also, I sent you a post from a wonderful member of our group about RP and the eyes. Hope it helps. W >>>>>>>>>>>>>>>>>>>>>>>> ,I am not sure what people mean when they ask me if I am on a maintenance drug for RP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 , Thanks for clarifying what you mean by maintenance drug. That is exactly how I know the meaning of the word but I think in my case, I am not that far into it yet. We haven't even hit on the right doseage of medications for me yet. I just keep telling myself to be patient-- which is not one of my greater virtues. I just want to feel better, RIGHT NOW, and that isn't happening. Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Re: Kathi >Date: Sun, 9 Sep 2001 09:22:27 -0400 > >Kathi, >A maintenance drug is one you use to keep whatever is wrong with you in >check. In other words, with RP, if you find a drug and dose that works and >keeps your RP from flaring, you stay on the drug for a long time, (maybe >forever), since it is doing it's job and keeping the RP under control. >I take several maintenance drugs for different problems I have. >Also, I sent you a post from a wonderful member of our group about RP and >the eyes. Hope it helps. > W > >>>>>>>>>>>>>>>>>>>>>>>> >, >I am not sure what people mean when they ask me if I am on a maintenance >drug for RP. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 , Thanks for clarifying what you mean by maintenance drug. That is exactly how I know the meaning of the word but I think in my case, I am not that far into it yet. We haven't even hit on the right doseage of medications for me yet. I just keep telling myself to be patient-- which is not one of my greater virtues. I just want to feel better, RIGHT NOW, and that isn't happening. Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Re: Kathi >Date: Sun, 9 Sep 2001 09:22:27 -0400 > >Kathi, >A maintenance drug is one you use to keep whatever is wrong with you in >check. In other words, with RP, if you find a drug and dose that works and >keeps your RP from flaring, you stay on the drug for a long time, (maybe >forever), since it is doing it's job and keeping the RP under control. >I take several maintenance drugs for different problems I have. >Also, I sent you a post from a wonderful member of our group about RP and >the eyes. Hope it helps. > W > >>>>>>>>>>>>>>>>>>>>>>>> >, >I am not sure what people mean when they ask me if I am on a maintenance >drug for RP. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 In a message dated 9/6/01 7:00:51 PM Pacific Daylight Time, angelhearts61@... writes: << I also have the things with my eyes that you described. My eyes are always red because they are so severly dry all of the time and they also feel like there is something in them. I often times have to blink because it feels that something is in them and they get blurry >> Kathi, my eyes feel like this too... I was dx with sjorgens just a few weeks ago... but after listening to Angie, it might be RP related... Don't know... My inner ears also feel like a hot pocker is jabbing them....ENT looks in them and says they are fine... It happens more often now than it did before... hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 In a message dated 9/6/01 7:00:51 PM Pacific Daylight Time, angelhearts61@... writes: << I also have the things with my eyes that you described. My eyes are always red because they are so severly dry all of the time and they also feel like there is something in them. I often times have to blink because it feels that something is in them and they get blurry >> Kathi, my eyes feel like this too... I was dx with sjorgens just a few weeks ago... but after listening to Angie, it might be RP related... Don't know... My inner ears also feel like a hot pocker is jabbing them....ENT looks in them and says they are fine... It happens more often now than it did before... hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 In a message dated 9/7/01 11:18:48 AM Pacific Daylight Time, angelhearts61@... writes: << just started the Methotrexate in June, when I was diagnosed. I am certain that we just haven't hit on the right combination of medications for me yet. >> Kathi, I think all of our expectations are always high.... I was told the the metho takes a good 3 months to start working... I took it for a year and was never able to decrease my pred, so it just didn't work for me... Don't give up yet... Ask your dr and see what he thinks... I waited too long to change to something else...I kept having to raise my pred and it made it worse for me in the long run... Give the metho a good try, but if you feel it isn't doing the job, talk to your dr and see if another drug might work better for you... Remember, it is your body and you are in charge of your health... Hope you feel better soon.. My thoughts and prayerss are with you. hugs Quote Link to comment Share on other sites More sharing options...
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