Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Welcome to our group Isa!!! Ask any questions that you have. There is a wealth of knowledge here. Again, WELCOME!!! W >>>>>>>>>>>>>>>>>>>>>>> hi everyone, my name is Isa and I am a new member, I write to you from Puerto Rico and I will write to shortly. Prayers to all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 In a message dated 7/11/01 4:03:59 AM Pacific Daylight Time, sherry_24230_2000@... writes: << >HELLO TO EVERYONE, THIS IS ISA FROM PUERTO RICO, IT IS HARD FOR ME TO >COMMUNICATE, EVERY DAY I GET ONE STEP CLOSER, I WANT TO TELL YOU ABOUT MY >EXPERIENCE WITH RP. GREAT DAY TO ALL...GOD BLESS....ISA Isa, you are doing great... Love to hear from you. We have a member who lives in NY and is from Columbia. Maybe you could post to her. If you want her to write you I will let her know. hugs _____________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 HELLO TO EVERYONE, THIS IS ISA FROM PUERTO RICO, IT IS HARD FOR ME TO >COMMUNICATE, EVERY DAY I GET ONE STEP CLOSER, I WANT TO TELL YOU ABOUT MY >EXPERIENCE WITH RP. GREAT DAY TO ALL...GOD BLESS....ISA Hi Isa, This is Lu, I have another friend from Puerto Rico that has RP. I will try to reach him so that you might be able to talk with him. He is doing so much better now with his RP. Would this be helpful to you? Please let me know. Take care, Love Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Hi Isa, Yes, I get the blotches and the leg cramps when I cut down on the pred. I never miss a dose, but I since I started on the metho 5 weeks ago I thought maybe I could start cutting back on the pred. Isn't going to be easy. My doctor had told me to take the full dose one day and then the next day to take 1/2 a dose. Well, that didn't work at all. Had leg cramps so bad I thought I would scream. Now I plan to just take the full dose one day then one mg. lower the next day. Maybe that will work better. Love, marilyn , I JUST WANTED TO LET YOU KNOW THAT I TOO GET PURPLE BLOTCHES AND > LEG CRAMPS WHEN I TRY CUTTING DOWN ON MY PRED. OR IF I MISS A DOSE. > ....ISA > > > >From: godave4@c... > >Reply-To: Rpolychondritis@y... > >To: Rpolychondritis@y... > >Subject: Liz, > >Date: Sun, 05 Aug 2001 20:40:30 -0000 > > > >Oh, you are so lucky not to have to do laundry!! I do pretty good at > >keeping up with that, but ironing is a totally different story. > > > >Good to hear from you. How are things going in your life? Are you > >still getting the pred. down? I have tried cutting back, but it's > >really hard. Think I will wait till the metho is doing it's job > >better before I try to cut back anymore. When ever I cut back on the > >pred I get these purple blotches on my hands and arms. I thought > >that was caused from taking the pred. You'd think I wouldn't get them > >cutting back on the stuff. > > > >Hot here this afternoon. I tried doing some more weeding but will > >have to wait till it's cool, maybe this evening. > > > >My cats had me up at 2:30 this AM so to me it feels like bedtime now. > >Love, Marilyn > > > > > > > > > > > _________________________________________________________________ > 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 August 5, 2001 Report Share Posted August 5, 2001 HI, I AM WONDERING COULD THE LEG CRAMPS BE BLOOD CIRCULATION, I HAD A CRAMP ON SATURDAY MORNING, AND ALL DAY I WAS LIMPING, TIL TODAY SUNDAY I CAN STAND AND WALK WITH LESS PAIN.....ISA >From: godave4@... >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: Isa >Date: Sun, 05 Aug 2001 23:32:27 -0000 > > >Hi Isa, > >Yes, I get the blotches and the leg cramps when I cut down on the >pred. I never miss a dose, but I since I started on the metho 5 >weeks ago I thought maybe I could start cutting back on the pred. >Isn't going to be easy. My doctor had told me to take the full dose >one day and then the next day to take 1/2 a dose. Well, that didn't >work at all. Had leg cramps so bad I thought I would scream. >Now I plan to just take the full dose one day then one mg. lower the >next day. Maybe that will work better. Love, marilyn > >, I JUST WANTED TO LET YOU KNOW THAT I TOO GET PURPLE BLOTCHES AND > > LEG CRAMPS WHEN I TRY CUTTING DOWN ON MY PRED. OR IF I MISS A DOSE. > > ....ISA > > > > > > >From: godave4@c... > > >Reply-To: Rpolychondritis@y... > > >To: Rpolychondritis@y... > > >Subject: Liz, > > >Date: Sun, 05 Aug 2001 20:40:30 -0000 > > > > > >Oh, you are so lucky not to have to do laundry!! I do pretty good >at > > >keeping up with that, but ironing is a totally different story. > > > > > >Good to hear from you. How are things going in your life? Are you > > >still getting the pred. down? I have tried cutting back, but it's > > >really hard. Think I will wait till the metho is doing it's job > > >better before I try to cut back anymore. When ever I cut back on >the > > >pred I get these purple blotches on my hands and arms. I thought > > >that was caused from taking the pred. You'd think I wouldn't get >them > > >cutting back on the stuff. > > > > > >Hot here this afternoon. I tried doing some more weeding but will > > >have to wait till it's cool, maybe this evening. > > > > > >My cats had me up at 2:30 this AM so to me it feels like bedtime >now. > > >Love, Marilyn > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at >http://explorer.msn.com/intl.asp > _________________________________________________________________ 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 August 6, 2001 Report Share Posted August 6, 2001 Hi Isa and Marilyn, I am new to the group and am reading everyone's posts. I don't have blotches like you two do,but I get leg cramps. Like bad charlie horses when I was growing up. they got so bad you wake right up in sleep rocking back and forth yelling ouch. the next day I limp and am sore. My dr. gave me flexeril. Muscle relaxer. It helps big time and also helps with face pain from RP. It takes a little while to work. I came off it for a while the leg cramps came back so I went back on. just make sure you take it with a little food. i take it at night because it could make you a little sleepy. I can use all the help I need to get to asleep.LOL Hope this helps you. Lang godave4@... wrote: > > Hi Isa, > > Yes, I get the blotches and the leg cramps when I cut down on the > pred. I never miss a dose, but I since I started on the metho 5 > weeks ago I thought maybe I could start cutting back on the pred. > Isn't going to be easy. My doctor had told me to take the full dose > one day and then the next day to take 1/2 a dose. Well, that didn't > work at all. Had leg cramps so bad I thought I would scream. > Now I plan to just take the full dose one day then one mg. lower the > next day. Maybe that will work better. Love, marilyn > > , I JUST WANTED TO LET YOU KNOW THAT I TOO GET PURPLE BLOTCHES AND > > LEG CRAMPS WHEN I TRY CUTTING DOWN ON MY PRED. OR IF I MISS A DOSE. > > ....ISA > > > > > > >From: godave4@c... > > >Reply-To: Rpolychondritis@y... > > >To: Rpolychondritis@y... > > >Subject: Liz, > > >Date: Sun, 05 Aug 2001 20:40:30 -0000 > > > > > >Oh, you are so lucky not to have to do laundry!! I do pretty good > at > > >keeping up with that, but ironing is a totally different story. > > > > > >Good to hear from you. How are things going in your life? Are you > > >still getting the pred. down? I have tried cutting back, but it's > > >really hard. Think I will wait till the metho is doing it's job > > >better before I try to cut back anymore. When ever I cut back on > the > > >pred I get these purple blotches on my hands and arms. I thought > > >that was caused from taking the pred. You'd think I wouldn't get > them > > >cutting back on the stuff. > > > > > >Hot here this afternoon. I tried doing some more weeding but will > > >have to wait till it's cool, maybe this evening. > > > > > >My cats had me up at 2:30 this AM so to me it feels like bedtime > now. > > >Love, Marilyn > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at > http://explorer.msn.com/intl.asp > > > 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...
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