Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 In a message dated 10/04/1999 2:50:05 PM Eastern Daylight Time, biglou5685@... writes: << feel like like I'm worse off. Can't go anywhere with my kids anymore because I don't have the energy. >> this has become a quality of life issue now. I am coming off the metho slowly cause it began to affect my kidneys they believe it is the metho anyway. I am not having any serious side affects from the drug besides the no energy thing and now maybe kidney. If I don't get back a quality of life not just an existence I am going to get very depressed as I am already really disguisted Love and Gentle Hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Angie and Group I'm now on 25 mg of pred. My ear is swollen and red. The pain isn't bad. I've decided not to go on the Meth, but cont to reduce my pred. I'm not telling my Rheumy. I want to know, what's the worst scenario that I could possible have by doing this? I know my ear can collapse. I know the pain can get severe. Tell what else could happen to me w/just nose and ear involvement. Waiting for all of your responses Thankyou Need this info ASAP. Love, Rene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Rene Well I am not sure but I can venture an educated from experience guess. death! your trachea can calliopes needing a tube and the rest of the horrible things RP does to us will probably happen Love and Gentle Hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Angie I'm going to go for it. I'll have to tell you guys what's going on. Take care Rene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Rene why are you going to put yourself in harm's way? makes no sense. Girl think this through don't be a fool. We love you and don't want you getting severely ill now I mean worse than you already are feeling please rethink this it is not a smart decision Love and Gentle Hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Angie I know this sounds crazy, but I just want to see if just maybe something miraculous would happen. Sure I don't want to get sicker than what I am. However, today I'm noticing many things that are happening to me. I don't want to be a complainer, but my upper part of my arm is swollen, my eyes are giving me a lot of problems. My hearing is impaired. I just started 25mgs on Sunday and today is just Monday. I have been in pain for years. Pain should be my middle name. I know you know what I'm feeling and talking about. I don't want anyone to think that I'm giving up, because I'm not. Have you ever had a bad feeling about a med that you're about to get on. My history tells me that the meth. will be a bad thing for me. I constantly get infections of some sort or another. I know I can't stay on the pred. I have been on 40mg since May. I'm not sure if the pred is causing my arm to swell, but I believe it is. What choices do I really have, but prayer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 In a message dated 10/04/1999 10:50:22 PM Eastern Daylight Time, susuw@... writes: << I don't believe I have to explain that one either. >> no just ask me that one. first MI at 38 Love and Gentle Hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Rene, Throat could collapse, no air, coma, death! Sorry girlfriend, you ask. Don't do anything like that. Especially if you're already in a flare. RP can also attack the heart. I don't believe I have to explain that one either. >>>>>>>>>>>>>>>>>>>>> I'm now on 25 mg of pred. My ear is swollen and red. The pain isn't bad. I've decided not to go on the Meth, but cont to reduce my pred. I'm not telling my Rheumy. I want to know, what's the worst scenario that I could possible have by doing this? I know my ear can collapse. I know the pain can get severe. Tell what else could happen to me w/just nose and ear involvement. Waiting for all of your responses Thankyou Need this info ASAP. Love, Rene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 Rene, Listen to Angie. My husband only has ear and nose involvement now but we are DESPARATE to get him on the correct meds so that it doesn't progress in the way it would if he wasn't on anything. Check out what your doctor has to say and make an educated decision for yourself. Take care. Burdick At 10:35 PM 10/4/1999 EDT, you wrote: >From: AngieCATW1@... > >Rene >why are you going to put yourself in harm's way? makes no sense. Girl think >this through don't be a fool. We love you and don't want you getting severely >ill now I mean worse than you already are feeling please rethink this it is >not a smart decision > > >Love and Gentle Hugs, >Angie > >http://members.tripod.com/lvngwell/Angiesplace2.htm >http://hometown.aol.com/RLR1999/HomeRP.html >http://members.tripod.com/~autoimmune > >>hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 In a message dated 10/6/99 8:54:24 AM Central Daylight Time, susan.burdick@... writes: << Burdick >> B., How is Brett doing? give us a update please. Love, P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 Hi and all. Brett is on 1500 miligrams of that motrim like med. He said his pain has lessened. However It still is very red and swollen in one ear, over the nose, and slightly in the other ear. We have a Dr. apt. on October 26th with the specialist. She should have all his blood work back by then. I hope that if she sees no change she will put him on something that will stop what's happening. To lighten our spirits - for my birthday in Nov. I booked a vac. on an island in the Carribean. I hope that w/ r & r we both will feel better. your news is so great ! B. At 09:56 AM 10/6/1999 EDT, you wrote: >From: Idigflower@... > >In a message dated 10/6/99 8:54:24 AM Central Daylight Time, >susan.burdick@... writes: > ><< Burdick >> > > B., How is Brett doing? give us a update please. > >Love, > P > >>hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 Welcome , Seems like you are getting great care. It was good you found this group. It is very informative and supportive. My husband was dx in April...but was in pain for the past 8 yrs. We are finally getting help from a rhuemotoligist where we live. Take care of yourself and hope that things get better soon. B. At 02:07 PM 10/5/1999 PDT, you wrote: > > >hi am brandy,I am 21 and I have been diagnosed with RP for about 4 years >know. It has been a horrible sickness with me. I have had lots >of problems and no answers to alot. I have lost the bridge of my nose and >losted hearing in my right ear. I have swollen ears and verious other >problems.Mainly problems with side effects, with meds. I am, of what I have >been told one of the youngest people to ever been diagnosed with RP.I have >been to the mayo clinic in Minn. and doctors are still in amazment with me. >None of the med. work except pred. this is not a good drug for me because my >age. I really would like to join in on this group to get info from people >that have stuggled with this because I am in my own struggle and would like >a little help. I have seen alot of the e-mail and can tell ya'll have alot >of good info for me and maybe I have a little for ya'll. > >hope to hear from soon, >brandy > >>hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 In a message dated 10/6/99 12:56:02 PM Central Daylight Time, susan.burdick@... writes: << I have lost the bridge of my nose and >losted hearing in my right ear. I have swollen ears and verious other >> , Can they fix the nose? I was wondering because I have nose problems also, but not severe. I had a CAT scan on Monday, I get the report tonight. I am on Enbrel right now and Pred, I have been on high doses of it scince Feb. I am doing great on the Enbrel and feel 100% better. Nice to meet you ! p.s. Sorry you have to go through this at such a young age. P. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 B way to go girl that is a sure enjoy the birthday kind of present. maybe just what the doc ordered. Nov ? is the BD Love and Gentle Hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Thanks Angie, Will do...have the web site open on my computer....Nov. 8th. Brett is finally getting excited too. B. At 10:11 PM 10/6/1999 EDT, you wrote: >From: AngieCATW1@... > > B >way to go girl that is a sure enjoy the birthday kind of present. maybe just >what the doc ordered. Nov ? is the BD > > >Love and Gentle Hugs, >Angie > >http://members.tripod.com/lvngwell/Angiesplace2.htm >http://hometown.aol.com/RLR1999/HomeRP.html >http://members.tripod.com/~autoimmune > >>hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 In a message dated 10/22/1999 11:58:50 AM Pacific Daylight Time, Evnarz@... writes: << What does paxil do? >> FROM MY UNDERSTANDING IT SUPPOSED TO CALM YOU DOWN. IT ALSO MAKES YOU SLEEPY. RENE' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 In a message dated 10/22/99 10:27:23 AM Central Daylight Time, Evnarz@... writes: << I've just had two days where I did nothing but sleeeeeeep - does anyone else have these days out of the blue where you can just not even WAKE UP? >> very rarely I do that , but usually I have more trouble going to sleep and staying asleep. You should tell your doc about this, he may need to look into it. Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 that happens to me, the tired as hell days but I am always bale to fight to get up. it is a struggle but I still can do it. Now I am not saying what time I get up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 In a message dated 10/22/1999 2:52:19 PM Eastern Daylight Time, RTI2264@... writes: << BY THE WAY I WAS WATCHING TV THIS MORNING AND THEY HAD A COMMERCIAL ON ABOUT PAXIL, THAT IT MAY DECREASE YOUR SEX DRIVE, I DID NOT KNOW THAT, DID YOU? >> I was on it for a while and it does decrease your libido A LOT ask Jerry! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 In a message dated 10/22/1999 3:17:05 PM Eastern Daylight Time, RTI2264@... writes: << FROM MY UNDERSTANDING IT SUPPOSED TO CALM YOU DOWN. IT ALSO MAKES YOU SLEEPY. >> it is a mood elevator and anti depressant Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 In a message dated 10/22/99 8:35:05 PM Central Daylight Time, AngieCATW1@... writes: << PAXIL, THAT IT MAY DECREASE YOUR SEX DRIVE, I DID NOT KNOW THAT, DID YOU? >> I was on it for a while and it does decrease your libido A LOT ask Jerry! >> well crap I better get off of it then.....I don't want that!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 In a message dated 10/22/1999 6:50:44 PM Pacific Daylight Time, Lu1953@... writes: << well crap I better get off of it then.....I don't want that!!!!!!! >> Did you ask Jerry? Maybe I need some of that stuff. Nah. : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 lisa, a couple of years ago after i had gained all the weight from the prednisone (u to 220 from 140, i developed a sleep disorder called sleep apnea where i woul stop breathing for more thantwo minutes a a tme, and als narcolepsy. wit narcolepsy i could bein te middle of a sentece, or be standin waiting for cofee in the kitchen and fall asleep always falling if i was standng our kitchen flor is ceramic. i culd not stop it. as a result of the poor sleep sometimes i ould go for three days without ANY sleep an when i crashed, i would slppe for almpst two days straight. it was craqymaking. because of poor sleep it affected my pain level andalso by the time i got into the hosital ii had s many broken bones from falling (bones very brittle (2.97 standard deviations from the mean) from the predinisne) all my ribs, frnt and back, my pelvis an mky shouler was broken in thre places and part of it according t he bne specialist was just disintgrated. needless to say i was in a lot of pain. while in he hospital, i was on a trach wh9le in a coma. and whe i got out because ofthe sleep disorder i sayedon the trah for 8 months. i was retested an snce i have lost so much weight since i ot off predinisone, te sleep apnea has seemd to have abated. i therefore sleep better and have very little trouble wiiht te narcolepsy. Sleepin is very important in my mangemet of pain. i personally take surmontl at bedtime which is a non addicting antidepressant wih sedative side effects whic help me sleep. i also talke valeian root complex which helps tremendoulsyt ith my seep (valerian root is an herbal formula) my doctors know andare oik with my taking it. this works for me. you will have o workit pout wit YOUR doctor what will workfo you. best of luck. denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 Roy how did I know you would have a smart reply? I wonder how I knew that. but all kidding aside I am not on it any more but NOT because of the libido but because I mistakenly thought I didn't need it anymore. Jerry still thinks he entered the priesthood Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 In a message dated 10/22/1999 9:56:10 PM Pacific Daylight Time, AngieCATW1@... writes: << Roy how did I know you would have a smart reply? >> Angie, Guess what. I am sorry. I thougth that was Lu who wrote that. I even wrote Jerry didnt I. I guess I was having a blonde moment. : ) Why is Lu fooling around with Jerry anyway? : ) Hey, I should tell you all. We are going to be off for the weekend. Going to take and her dad up north to visit her brothers. We should be back Sunday night. Roy Quote Link to comment Share on other sites More sharing options...
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