Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 Hi everyone, Thanks for the bit of advice. It makes sense not to take Glucosamine blah blah blah. Last thing I want to do is feed the damn RP. Is anyone out there taking Vioxx? I take it 2x a day and it isn't giving me any problems. Celebrex wasn't any help at all. I've heard that it takes methotrexate about 6 wks to start working and I'm starting on week 6 tomorrow. When it does start working, what is it supposed to do? Am I supposed to start breathing easier (therefore no need for a stent), have less pain? I too don't get much sleep. I often wake up around 3 or 4am. But I'm able to get back to sleep with no problem, thank God. For the past two wks it was because my mouth was sooooo dry and felt cottony, I felt the need to moisten as well as wash out the dryness and icky taste in my mouth. (Using a humidifier hasn't helped me.) Since I've been having breathing problems, I've started to snore big time, which causes a problem with my husband and he loses sleep over it. Poor thing. About 1-2 months ago, I was having sleeping problems similar to above, but instead of having the dry mouth and snoring, I would wake up desperate for breath. I'd sit up, gulp for air, wait for things to calm down a bit and then go back to sleep. I know that at times my dreams cause me to lose breath. This would happen about 2-3x every morning. Now that I snore and breathe with my mouth open, I don't wake up desperate for air. Weird compromise. I wanted to ask the group: do you test regularly for your sed rate levels? I do, at least every 6 wks when I see my rheum. I don't see any correlation to high sed rates and the way I'm feeling that week. Sometimes my levels are high but I'm feeling pretty good that week, and then vice versa. What are your thoughts on this? Just thought of another thing too: how many of you developed diabetes because of the Prednisone? It sucks. Add more needles to the mix of lab tests and such. Doesn't help that I already have a predisposition to diabetes because of my mother. Of course you all know too well how it's just one thing after another with this disease. I console myself with the fact that of all the autoimmune diseases I could have come down with, RP isn't as bad as lupus, schleroderma, or MS. It doesn't lessen the pain or suffering from RP but I think of the people having a worse time of it than me and I thank my lucky stars and God. It still sucks to be me, but not so much. :-) Hope all is well. I'm feeling better and made it across the parking lot to the train station today without any problems. I will attempt to go to the gym tomorrow. PS: I was supposed to fly to Ireland for a 2wk trip (friend getting married there) tomorrow, but because I showed up at the dr's office with difficulty breathing (worst time ever...I thought I was going to die) he discouraged me from going. So I'm feeling really bummed. I may just do what some of you have done and take a short trip to the coast or up north. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 In a message dated 8/6/01 11:09:08 PM Pacific Daylight Time, hiacynth1@... writes: << About 1-2 months ago, I was having sleeping problems similar to above, but instead of having the dry mouth and snoring, I would wake up desperate for breath. I'd sit up, gulp for air, >> ....my husband had these same symptoms.... He had a sleep study done and it was sleep apnea.... He would quit breathing over 50 time an hour.... and he never even knew it.. Might be something to check into... hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 Hi , pcp gave me Vioxx but can't take it, I kept it with a note saying don't take. Damn can't remember why. Celebrex is normally used for osteoarthritis, I think we're more susceptable to rheumatoid arthritis. Diane, please tell me if I'm wrong. Plus I'm allergic to sulfa which Celebrex has. My sleeping also hasn't been great. Go to bed really early 8:30-9:00 and am awake at 2:30. Then kind of nap until 5:00. I also snore very bad. For some reason if I sleep on my left side I don't but right side I roar. Sed rates are very different, mine is always high but alot of people in a flare have low rates. So maybe not a good determination. I have Type II diabetes causes by a flare but not caused by the Pred. Feel bad about your trip, you have to go while the goings good but just take medical records with you and figure out how you feel....Best Wishes...Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 I laughed because the hospital in the town we used to live in did a major remodel on their hospital...Please remember most people who are in hospitals are the elderly who get elderly visitors. Granted alot of visitors are young people but talk about walking! Its freakin miles from the lot or ramp, down long halls, up elevators, to get where your going. Who in the world is designing these places? Of course the new hospital where I go in Green Bay is just as bad but they have attendants who will put you in a wheel chair if you feel you can't walk that far and take you whereever you need to go....not a bad deal....Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 , My hubby had the sleep apnea surgery done, and the surgeon told him that everyone doesn't necessarily improve. My husband decided to have the surgery because he ended up being on oxygen at night, as he stopped breathing so much. He said it wasn't as bad as he thought.. he felt bad for about 3 days, and then he went back to work.. mind you he can be a workaholic! How are you doing? you post seems so much more " happy " than your first post. Isn't the group amazing? you can get all this " stuff " off your chest and get on with life! That is great about walking to the train station. I remember when I first lost breath, I was visiting someone in the hospital, who was having heart problems. I had to park almost a 1/2 mile away, and his room was on the 5th floor, and at the other end of the hospital. by the time I got to his room, I thought I was going to pass out. He laughed so hard.. he said I looked worse then he did. Oh well.. at least he cheered up alot.. haha.. I had to stay for 2 hrs to catch my breath.. but at least I was in a hospital LOL... le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 Hi , My sed rate is always normal even during a bad flare. I also have Diabetes due to long term Pred. use. Sandy Hi everyone, Thanks for the bit of advice. It makes sense notto take Glucosamine blah blah blah. Last thing Iwant to do is feed the damn RP. Is anyone out there taking Vioxx? I take it 2x aday and it isn't giving me any problems. Celebrexwasn't any help at all.I've heard that it takes methotrexate about 6 wksto start working and I'm starting on week 6tomorrow. When it does start working, what is itsupposed to do? Am I supposed to start breathingeasier (therefore no need for a stent), have lesspain?I too don't get much sleep. I often wake uparound 3 or 4am. But I'm able to get back tosleep with no problem, thank God. For the pasttwo wks it was because my mouth was sooooo dryand felt cottony, I felt the need to moisten aswell as wash out the dryness and icky taste in mymouth. (Using a humidifier hasn't helped me.)Since I've been having breathing problems, I'vestarted to snore big time, which causes a problemwith my husband and he loses sleep over it. Poorthing.About 1-2 months ago, I was having sleepingproblems similar to above, but instead of havingthe dry mouth and snoring, I would wake updesperate for breath. I'd sit up, gulp for air,wait for things to calm down a bit and then goback to sleep. I know that at times my dreamscause me to lose breath. This would happen about2-3x every morning. Now that I snore and breathewith my mouth open, I don't wake up desperate forair. Weird compromise.I wanted to ask the group: do you test regularlyfor your sed rate levels? I do, at least every 6wks when I see my rheum. I don't see anycorrelation to high sed rates and the way I'mfeeling that week. Sometimes my levels are highbut I'm feeling pretty good that week, and thenvice versa. What are your thoughts on this?Just thought of another thing too: how many ofyou developed diabetes because of the Prednisone?It sucks. Add more needles to the mix of labtests and such. Doesn't help that I already havea predisposition to diabetes because of mymother.Of course you all know too well how it's just onething after another with this disease.I console myself with the fact that of all theautoimmune diseases I could have come down with,RP isn't as bad as lupus, schleroderma, or MS. Itdoesn't lessen the pain or suffering from RP butI think of the people having a worse time of itthan me and I thank my lucky stars and God.It still sucks to be me, but not so much. :-)Hope all is well. I'm feeling better and made itacross the parking lot to the train station todaywithout any problems. I will attempt to go to thegym tomorrow.PS: I was supposed to fly to Ireland for a 2wktrip (friend getting married there) tomorrow, butbecause I showed up at the dr's office withdifficulty breathing (worst time ever...I thoughtI was going to die) he discouraged me from going.So I'm feeling really bummed. I may just do whatsome of you have done and take a short trip tothe coast or up north.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 In a message dated 8/7/01 11:04:58 PM Pacific Daylight Time, hiacynth1@... writes: << Another question. I remember seeing somewhere that if you're taking pred it would be a good idea to get a medicalert bracelet and have it mention you're on pred. The problem with that is we change our dosages and meds so often, it doesn't make sense to have it at all. Does it make sense to have it say R. Polychondritis on the bracelet? Not too many drs even know about it--would the ER docs know what to do with us? >> , Yes it does make sense to have a medic alert bracelet... The people at MA are very helpful.. When i called them I told them all that I had ( I have alot of med problems lol ) and they figured out what I should have put on it.. The first thing was RP... The nurse at MA looked up RP and found out the it might be dangerous to intubate me.. Also very important to say you are on steroids or metho etc. They don't list all your medication on the bracelet just the most important info, then they have a list on file... Whenever a medic or dr calls them, they explain what RP is and what meds and you are on... Also very important to keep them updated on any new meds or dx. Please consider it... It could save your life... With breathing problems you don't want to do any damage by someone just sticking a tube down your throat without knowing what could happen... I do support this association and feel they do a wonderful job.... Just call and you will see how helpful they are... They also have pretty bracelets now......put it on a birthday or Christmas list. LOL If i have to wear it all the time, I want the pretty one.. LOL Also another hint... I had to have some links taken out of mine.. it was too big, kept catching on things and I'd cut myself... If you have it sized...keep the links... If you gain weight from the pred or whatever, you can just have them added. Hope this helps.. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 I think I asked this question before so excuse me for the duplication: Has anyone here had a stent put in? I was wondering what problems people have, if they have it. It sounds like a great solution if you're having breathing problems, but are there any disadvantages to having a stent? Another question. I remember seeing somewhere that if you're taking pred it would be a good idea to get a medicalert bracelet and have it mention you're on pred. The problem with that is we change our dosages and meds so often, it doesn't make sense to have it at all. Does it make sense to have it say R. Polychondritis on the bracelet? Not too many drs even know about it--would the ER docs know what to do with us? Dawn's ER story is a case in point. I hope I never have to go through what she went through. I told my husband about Dawn's experience and he said he'd scream bloody murder if they treated us like that. Having broken bones and bruising...that's just another thing to think about with RP.... ===== When choosing the lesser of two evils, I always like the one I haven't tried. -- Mae West __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Isa, What is meatoplasty surgery? ==================== Date: Mon, 06 Aug 2001 17:59:31 -0400 Subject: Re: stents, alternative meds,etc...'--cynthia. HI CYNTHIA, MY EARS WERE SWOLLEN SHUT AND I HAD MEATOPLASTY SURGERY ON BOTH EARS, THE SURGEON DISCOURAGE SURGERY ON MY NOSE BECAUSE OF A POSSIBLE REJECTION..... ISA ===== When choosing the lesser of two evils, I always like the one I haven't tried. -- Mae West __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 It is funny that I wrote about addictions. I now have to write about my addiction because the scale told me so. I have always abused crunchy, salty carbs. So of course I started to kid myself about popcorn. I started to eat the plain healthy choice popcorn and now am up to two bags a day and craving more. Along with this I have become too tired to exercise (that is what happens with those rotten carbs). Well, cold turkey today. I think for my own mental health I might report in many times the first few days to help me keep on track. Fay Bayuk 300/181 10/23/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 In a message dated 1/6/2003 8:23:25 AM Eastern Standard Time, divequeen2002@... writes: > Just got way to cocky for my own good I > guess. T You bet, I am sure that what it was for me. So far today: two eggs, 1 slice cheese, 1/2 pat butter, 2 tsps salsa. MMM good. Fay Bayuk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 Had a wonderful mid morning protein shake. Still not craving, but the day has just begun. Fay Bayuk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 You go girl...like VitaLady said " we CAN do this " ....I am on day two of defeating that awful carb monster.........I think I will go upstairs and workout....that always helps shut him up for a while!!!!!! GOOD LUCK!!!!! P. Re: Digest Number 1892 > It is funny that I wrote about addictions. I now have to write about my > addiction because the scale told me so. I have always abused crunchy, salty > carbs. So of course I started to kid myself about popcorn. I started to eat > the plain healthy choice popcorn and now am up to two bags a day and craving > more. Along with this I have become too tired to exercise (that is what > happens with those rotten carbs). > > Well, cold turkey today. > > I think for my own mental health I might report in many times the first few > days to help me keep on track. > > Fay Bayuk > 300/181 10/23/01 > > > Quote Link to comment Share on other sites More sharing options...
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