Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 In a message dated 2/4/00 3:28:01 PM Central Standard Time, moose@... writes: << I'm on Prednisone and Methotrexate. I also take pain killers. Is there anything else that helps. Thanks, /Moose >> , You need to call your Doctor about the Nose Pain! asap. How long have you been on the Metho? and what MG? Metho normally kicks in around the 4th to 8th Week (sometimes longer). With this disorder Pain is in a way good because we know from the pain we need more meds to stop the flair, so please remember if you are having bad pain then Damage is occurring in that area and requires attention. When my nose or ears (inner) get very painful I have to up my Prednisone, its the only thing that helps me. I was aleric to the Metho and now on Enbrel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 Dear , Thanks for the response and information. I have been on Methotrexate again for about six weeks. It's a smaller dose than I took two years ago. My Prednisone dose is only 10mg. and Methotrexate 7.5. These seem awfully small to me. I have anew doctor in a rural area. I was originally diagnosed at Wake Forest Medical School in N.C. while living in ville,N.C. I moved back to Va. four years ago and started to go UVA medical. To my shock, they didn't know doodley about RP. At the time I was in remission and convinced myself that it didn't matter because I would stay in remission forever!! So I didn't persue looking for a new doctor. Now I live in the sticks and even though I really like my doctor here,she knows very little about RP except what she has read in a medical book. She has tried to re-link me with my old doctor in N.C. but, everytime I get an appointment it has been canceled due to bad weather. I can't get another appointment until March 8th. Because of the pain and discomfort in my nose, neck, and throat. I'm afraid Ican't make it that long. The doctor here doesn't understand,and says that the nose and chest pain are coming from tension. I'm going to get tense if I don't find help soon!!!!!!!! I am really afraid. I would appreciate any input. Re: nose imflamation > From: Idigflower@... > > In a message dated 2/4/00 3:28:01 PM Central Standard Time, moose@... > writes: > > << I'm on Prednisone and Methotrexate. I also take pain killers. Is there > anything else that helps. > > Thanks, > > /Moose >> > > > , You need to call your Doctor about the Nose Pain! asap. How long > have you been on the Metho? and what MG? Metho normally kicks in around the > 4th to 8th Week (sometimes longer). With this disorder Pain is in a way good > because we know from the pain we need more meds to stop the flair, so please > remember if you are having bad pain then Damage is occurring in that area and > requires attention. > > When my nose or ears (inner) get very painful I have to up my Prednisone, its > the only thing that helps me. I was aleric to the Metho and now on Enbrel. > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 what part of VA are you from? we have some one here from that state that maybe could guide you to a doc with some knowledge. Is your doc a rheumatologist? I hate to tell you what to do I can only tell you what I would do, if it were me and I was having problems with my throat and nose I would increase me pred until I could get into the doctors 10mgs is low if your flaring. I have total control over my pred now, my doctors agree nly I know when I am flaring and how bad it is and they also know I won't stay on a high dose if I don't have to. I also know how to ween down from it. That is my suggestion but damage has to be acoided since it can't be reversed Love and Gentle Hugs, Angie Yesterday will fade and tomorrow will take care of itself. Lord, help me today http://www.geocities.com/acenneno_1999 http://rpolychondritis.tripod.com/index.html http://disabilities-us.com/shad/ You don't stop laughing because you grow old, you grow old because you stopped laughing. Just click on the link below, and sign up for an account at X.com. It takes less than two minutes, and we'll put $20 cash into your account to get you started. So click on this link right now, and come get your $20! https://www.x.com/new_account.asp?Referrer=angiecatw1aol ********************************************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2000 Report Share Posted February 5, 2000 Angie, Thank you for your advice. I've upped my pred. by 5mg. I don't know how much that will help but, maybe. My doctor here is not a rheumtologist but, has been trying to hook me up with one in N.C. The appointments keep getting canceled by them. I can't remeber how long it takes to see a a change in a upped dosage. Can you tell me? Or maybe 5mg. isn't enough. I'm pretty much on my own right now until I can see a rheumatologist. I am from Halifax, VA. Where are you from? Re: nose imflamation > From: AngieCATW1@... > > > what part of VA are you from? we have some one here from that state that > maybe could guide you to a doc with some knowledge. Is your doc a > rheumatologist? > I hate to tell you what to do I can only tell you what I would do, if it were > me and I was having problems with my throat and nose I would increase me pred > until I could get into the doctors 10mgs is low if your flaring. I have total > control over my pred now, my doctors agree nly I know when I am flaring and > how bad it is and they also know I won't stay on a high dose if I don't have > to. I also know how to ween down from it. That is my suggestion but damage > has to be acoided since it can't be reversed > Love and Gentle Hugs, > Angie > Yesterday will fade and tomorrow will take care of itself. Lord, help me > today > http://www.geocities.com/acenneno_1999 > http://rpolychondritis.tripod.com/index.html > http://disabilities-us.com/shad/ > You don't stop laughing because you grow old, you grow old > because you stopped laughing. > > Just click on the link below, and sign up for an account at X.com. It > takes less than two minutes, and we'll put $20 cash into your account to > get you started. > So click on this link right now, and come get your $20! > https://www.x.com/new_account.asp?Referrer=angiecatw1aol > > ********************************************************************** > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2000 Report Share Posted February 6, 2000 Hi , Nancie here..... I ewas taking the Metho but it upset my stomach now I take Arava it works better for me at least. I'm also on 40mg Pred a day. Anyway for the nost, when mine gets real bad as it has many times I put warm washrag on it, don't know what that does but it seems to temporarly ease the pain. My nose is now the color purple (fortunately a pale purple) due to the inflamations and it's just a waiting game to see how long it collapse. What makes it worse for me is I wear glasses and the pressure of them on my nose and ears is real bad sometimes. My head will swell so much by the time I get home from work sometimes I have to " pop " the glasses out of my head! Good luck and God Bless to you Nancie --- Bruce Riley wrote: > Dear , > Thanks for the response and information. I have > been on Methotrexate again > for about six weeks. It's a smaller dose than I took > two years ago. My > Prednisone dose is only 10mg. and Methotrexate 7.5. > These seem awfully small > to me. I have anew doctor in a rural area. I was > originally diagnosed at > Wake Forest Medical School in N.C. while living in > ville,N.C. > I moved back to Va. four years ago and started to > go UVA medical. To my > shock, they didn't know doodley about RP. At the > time I was in remission and > convinced myself that it didn't matter because I > would stay in remission > forever!! So I didn't persue looking for a new > doctor. Now I live in the > sticks and even though I really like my doctor > here,she knows very little > about RP except what she has read in a medical book. > She has tried to > re-link me with my old doctor in N.C. but, everytime > I get an appointment it > has been canceled due to bad weather. I can't get > another appointment until > March 8th. Because of the pain and discomfort in my > nose, neck, and throat. > I'm afraid Ican't make it that long. The doctor here > doesn't understand,and > says that the nose and chest pain are coming from > tension. I'm going to get > tense if I don't find help soon!!!!!!!! I am really > afraid. I would > appreciate any input. > > > > Re: nose imflamation > > > > From: Idigflower@... > > > > In a message dated 2/4/00 3:28:01 PM Central > Standard Time, > moose@... > > writes: > > > > << I'm on Prednisone and Methotrexate. I also take > pain killers. Is there > > anything else that helps. > > > > Thanks, > > > > /Moose >> > > > > > > , You need to call your Doctor about the Nose > Pain! asap. How long > > have you been on the Metho? and what MG? Metho > normally kicks in around > the > > 4th to 8th Week (sometimes longer). With this > disorder Pain is in a way > good > > because we know from the pain we need more meds to > stop the flair, so > please > > remember if you are having bad pain then Damage is > occurring in that area > and > > requires attention. > > > > When my nose or ears (inner) get very painful I > have to up my Prednisone, > its > > the only thing that helps me. I was aleric to the > Metho and now on Enbrel. > > > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 Hi , Nancie here, I can't remember if I got back to you or not????? I'm a new member of this group also and I'll tell you these people are awesome. I have learned sooooo much since I've been here. I started out with RP in my face, specifically in the nose. It has swollen so much that there has not been any differnce in the depth of my face. Meaning it's all one round orb. I hope I'm making myself clear. Besides the meds and pain meds I also put hot compresses on my face. It does help to ease it some. My nose now has had so many flare ups that it is purple and constantly aches. Wearing glasses doesn't help either! It is just a matter of time my doc says that it will start to collapse - yippeeee. I hope I didn't scare you, but this isn't the place to not come right to the point. As far as we can figure I had had RP since about 1985 or so. At first I was diagnosed with everything from cellulitis to HIV until they finally got it. Well until I finally went to a rheumy doc of which my md kept telling me to go to! anyway God Bless you and I will pray for you. nancie --- Bruce Riley wrote: > From: moose@... (Bruce Riley) > > I was wondering if anyone in the group has had > deteriation of the nose cartilage, and if so, what > were the first symptoms? Being a new member I don't > know much about the people in the group. For weeks > my nose and chest pain have been unbearable. I'm on > Prednisone and Methotrexate. I also take pain > killers. Is there anything else that helps. > > Thanks, > > /Moose > > hi and welcome. maybe we can come up with answers > that our doctors can't > ===== Lord, so far today, I am doing o.k. I have not gossiped, lost my temper, been greedy, grumpy, nasty, selfish or overindulgent. However, I am going to get out of bed in a few minutes and I will need a lot more help after that! Thank You __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 In a message dated 02/08/2000 6:05:34 PM Eastern Standard Time, suiska@... writes: << I was wondering if anyone in the group has had > deteriation of the nose cartilage, and if so, what > were the first symptoms? Being a new member I don't > know much about the people in the group. For weeks > my nose and chest pain have been unbearable. I'm on > Prednisone and Methotrexate. I also take pain > killers. Is there anything else that helps. > >> I don't remember if I answered this but when my nose flares, and it does quite often I switch between hot and cold compreses to find some relief. along with the pred and methotrexate, now I am also on a medicine commonly used for gout and I can't for the life of me think how to spell it. my nose has been somewhat better but not much and it too aches most of the time and is ALWAYS stuffy Love and Gentle Hugs, Angie Yesterday will fade and tomorrow will take care of itself. Lord, help me today http://www.geocities.com/acenneno_1999 http://rpolychondritis.tripod.com/index.html http://disabilities-us.com/shad/ You don't stop laughing because you grow old, you grow old because you stopped laughing. Just click on the link below, and sign up for an account at X.com. It takes less than two minutes, and we'll put $20 cash into your account to get you started. So click on this link right now, and come get your $20! https://www.x.com/new_account.asp?Referrer=angiecatw1aol ********************************************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 Nancie, I am on the same medications. However, I have a steroid cream that I put in my nose and it does help. May not take all of the nose pain away, but it seems to numb the pain and helps. You might want to ask your doctor. My Rheumy gives me most of the medication. My ENT prescribed the steroid cream and the Rheumy gave her approval, too. I am fortunate that the ENT and Rheumy phone each other on my behalf. It actually was the ENT who thought I might have RP and did the ear biopsy and recommended the Rheumy to me. I don't remember the name of the Steroid cream, but will look and tell you if you or anyone else wants to know. Love and God Bless, Ronnie << For weeks > my nose and chest pain have been unbearable. I'm on > Prednisone and Methotrexate. I also take pain > killers. Is there anything else that helps. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 Nancie, the name of the cream and the dosage I have is SYNALAR 0.025% CREAM 15GM - (FLUOCINOLONE ACETONIDE). Hope this may be of some help. Love and God Bless, Ronnie In a message dated 2/9/2000 6:44:10 PM Pacific Standard Time, suiska@... writes: << Ronnie, That would be great to put in my " go to see the doc file " . When you have time thanks so much nancie >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 Ronnie, That would be great to put in my " go to see the doc file " . When you have time thanks so much nancie --- Ronniegrl@... wrote: > Nancie, I am on the same medications. However, I > have a steroid cream that I > put in my nose and it does help. May not take all > of the nose pain away, but > it seems to numb the pain and helps. You might want > to ask your doctor. My > Rheumy gives me most of the medication. My ENT > prescribed the steroid cream > and the Rheumy gave her approval, too. I am > fortunate that the ENT and > Rheumy phone each other on my behalf. It actually > was the ENT who thought I > might have RP and did the ear biopsy and recommended > the Rheumy to me. I > don't remember the name of the Steroid cream, but > will look and tell you if > you or anyone else wants to know. Love and God > Bless, Ronnie > << For weeks > > my nose and chest pain have been unbearable. I'm > on > > Prednisone and Methotrexate. I also take pain > > killers. Is there anything else that helps. >> > ===== Lord, so far today, I am doing o.k. I have not gossiped, lost my temper, been greedy, grumpy, nasty, selfish or overindulgent. However, I am going to get out of bed in a few minutes and I will need a lot more help after that! Thank You __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2000 Report Share Posted February 10, 2000 Ronnie, Thanks much for the info. I'll print it off and take it with me next time go to doc. nancie --- Ronniegrl@... wrote: > Nancie, the name of the cream and the dosage I have > is SYNALAR 0.025% CREAM > 15GM - (FLUOCINOLONE ACETONIDE). Hope this may be > of some help. Love and > God Bless, Ronnie > > In a message dated 2/9/2000 6:44:10 PM Pacific > Standard Time, > suiska@... writes: > > << Ronnie, > That would be great to put in my " go to see the doc > file " . When you have time thanks so much > nancie > >> > ===== Lord, so far today, I am doing o.k. I have not gossiped, lost my temper, been greedy, grumpy, nasty, selfish or overindulgent. However, I am going to get out of bed in a few minutes and I will need a lot more help after that! Thank You __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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