Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Hello Please keep us up to date with what's going on with you... Unfortunately when starting new meds it's a waiting game until we either see improvements or not.. I pray that you feel better soon, and that eventually the right combo of meds will work for you without the pred.. I myself am on 20 mg pred as of tomorrow... I will continue tapering off by 5 mg every 4 to 5 days or so... I just listen to my body and act accordingly.. so far, so good. I'm also taking Minocin and that seems to be going ok too... I have a question, is the lung/breathing problem RP for sure, or could it be sleep apnea, since you have more trouble breathing when lying down? just wondering... I also have a little trouble breathing when lying down (especially in the early morning hours), I'll be undergoing a sleep study in the new year. glad you hear your grandson is feeling better and at home now... take care and have a healthy and happy new year luv Carmela *********************** >From: Mlier325@... >Reply-To: Rpolychondritis (AT) e >To: Rpolychondritis (AT) e >Subject: Update >Date: Sun, 31 Dec 2000 12:32:11 EST > >Hi all. First, I hope everyone had a wonderful Christmas and will have a >blessed New Year! >Okay, I saw Trentham again back in August and he started me on the Enbrel. >He took me off the Methotrexate injections and 150 mg of Imuran at the same >time. >After the 90 days, I was still having major flaring and he suggested adding >Methotrexate orally. Since it made me ill, my rheumy here put me back on >Imuran instead, took me off the Vioxx and put me on Arthrotec to see if it >would help. >I'm still waiting............ I think in some ways I feel better, and in >others I feel worse. I am trying to get off the Pred -- it is doing as >much >or more harm as good, and I just went down to 8 mg. > >I know I've been having more trouble breathing, especially as the day goes >on, and when I lay down. Went to the doc Friday and he said there was >definitely a lot of rattling going on. Thought is could be bronchitis so >he >gave me Tequin (a new antibiotic) just in case it was bacterial -- hard to >tell since I'm on the immunosuppressant. > >Just before Christmas, our youngest grandson, 4 month old Jordan, ended up >in >the hospital with RSV. Of course we didn't know until he had been in for 2 >days that he had RSV -- poor little guy. It broke my heart to see him >laying there so helpless and having so much trouble breathing. I am >thankful >to say, that after being in for almost a week, he is home now. > >Wishing you all a painfree New Year -- >Hugs and smiles, > > >P.S. My sed rate has always been within the normal range. In fact, the >highest it has been is maybe 8. The lowest is 0. My doc freaked and >thought >there was something wrong. It is usually always under 5, averaging between >1 >and 3. >I almost forgot, I found out last week that another person here in the >Oklahoma City area was diagnosed with RP by her primary care doc a couple >of >months ago. She is under 25 and is seeing my rheumy in Norman. I am >hoping >she will join us soon. >Love to you all!! _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Hi Carmella, Be careful lowering the Pred 5mgs at a time. I know I went from 20 to 15, and ended up having to go back up. I did how ever go down to 17.5 for three weeks, then to 15 for a month. After that, it was 14 for two weeks, then 12 for about a month and a half. I was on 10 for two months, and now am on 8. There are times when I know I should probably raise it, but it has really taken its toll on me and I just want off of it! Good luck and be careful -- okay? As far as my trouble breathing, I had trouble with shortness of breath before I was diagnosed. Couldn't go up a flight of stairs without stopping half way to catch my breath. Anyway, for sometime now, I have noticed my chest aching when I breath. I also wheeze and have that nonproductive cough. My PFTs have been 85%, to 75%, to 90%. It has been about 7 or 8 months since I had one though. It would be interesting to find out if sleep apnea has anything to do with it. I know I have to sleep on two pillows -- when I don't, my husband tells me to do so because my breathing is different. Sorry for rambling. Take care and hope to talk to you soon! Hugs and smiles, :>) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 In a message dated 1/4/01 7:49:49 AM Pacific Standard Time, Mlier325@... writes: << Be careful lowering the Pred 5mgs at a time. >> Carmela, is right. When you get to about 15mg you should decrease very slowly (1mg every 2-4weeks) Heidi says Mayo Clinic says 1mg month. This is how Angie got in trouble. Please do this slowly. Don't want you in the hospital too. Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Hi I really appreciate your email, so don't worry about rambling, I like the rambling, we end up talking about so many more subjects and stuff... ) I'm thinking about going down to 17.5 of pred instead of 20 to 15... I'm at 20 mg now and planned to go down to 17.5 tomorrow, but I'm really anxious to get off it too, I can't stand the bloating and hunger and all the crap that comes with it... but for now I'll just have to listen to my body and see if I'm having any kind of bad reaction...I'm also on Minocin and my joints don't hurt very much as they did the last time I tapered off pred, this past summer... by the time I reached 20 mg, my joints and muscles were screaming bloody murder...LOL.. and this time I'm ok. My breathing is ok right now, even when brushing off the car in the cold, I have not had a wheezing attack, just slightly breathless, but once I'm in the car and take a few deep breaths, I'm ok... I'm also overweight so that doesn't help much either... however, I'm having a PFT on Monday so we'll see what that shows...and an appt with the sleep clinic doctor on Jan 17, I'll keep you all updated....I've been sleeping with 2 pillows for yrs now, all because of a bad sinus infection yrs ago... once I started, I couldn't go back to 1 pillow... anyway, that's all for now... take care and be well luv ya Carmela ************************** >From: Mlier325@... >Reply-To: Rpolychondritis (AT) e >To: Rpolychondritis (AT) e >Subject: Re: Update/ >Date: Thu, 4 Jan 2001 10:45:26 EST > >Hi Carmella, >Be careful lowering the Pred 5mgs at a time. I know I went from 20 to 15, >and ended up having to go back up. I did how ever go down to 17.5 for >three >weeks, then to 15 for a month. After that, it was 14 for two weeks, then >12 >for about a month and a half. I was on 10 for two months, and now am on 8. >There are times when I know I should probably raise it, but it has really >taken its toll on me and I just want off of it! Good luck and be careful >-- >okay? > >As far as my trouble breathing, I had trouble with shortness of breath >before >I was diagnosed. Couldn't go up a flight of stairs without stopping half >way >to catch my breath. Anyway, for sometime now, I have noticed my chest >aching >when I breath. I also wheeze and have that nonproductive cough. My PFTs >have been 85%, to 75%, to 90%. It has been about 7 or 8 months since I had >one though. It would be interesting to find out if sleep apnea has >anything >to do with it. I know I have to sleep on two pillows -- when I don't, my >husband tells me to do so because my breathing is different. > >Sorry for rambling. Take care and hope to talk to you soon! >Hugs and smiles, > :>) _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Hey all, it depends on how long you've been on the pred how slowly you need to taper off. If you've been on for ANY length of time (say slonger than 1-2 weeks) you should do some taper and not just stop. STudies showed that in "normal" adults a dose of pred for 2-3 weeks could be safely stopped ithout a taper. If you've been on a really long time, I'd start tapering and slow the taper at a higher dose than 15. If I were to taper myself now (been on high dose for 2 1/2 months, I'd probalby go down by about 5 mg a week until I got to 30 or 40 then go slower and defrinitedly down to 1 mg at a time when i got down to something like 15 or 20. No "perfect" answer but kind of a ballpark..... Carolyn Re: Update/ << Be careful lowering the Pred 5mgs at a time. >>Carmela, is right. When you get to about 15mg you should decrease very slowly (1mg every 2-4weeks) Heidi says Mayo Clinic says 1mg month. This is how Angie got in trouble. Please do this slowly. Don't want you in the hospital too.HugsDISCLAIMER!!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...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Carmela! it sounds like you're finally doing better! Don't go too fast off the pred now! How long have you been on it? REmember, it's better to stay/start with a higher dose and KILL the sucker and then taper than it is to inch up and me mealy mouth about it -- you actually wind up taking less meds (ie pred that you hate) that way.... Love Carolyn Re: Update/>Date: Thu, 4 Jan 2001 10:45:26 EST>>Hi Carmella,>Be careful lowering the Pred 5mgs at a time. I know I went from 20 to 15,>and ended up having to go back up. I did how ever go down to 17.5 for >three>weeks, then to 15 for a month. After that, it was 14 for two weeks, then >12>for about a month and a half. I was on 10 for two months, and now am on 8.>There are times when I know I should probably raise it, but it has really>taken its toll on me and I just want off of it! Good luck and be careful >-->okay?>>As far as my trouble breathing, I had trouble with shortness of breath >before>I was diagnosed. Couldn't go up a flight of stairs without stopping half >way>to catch my breath. Anyway, for sometime now, I have noticed my chest >aching>when I breath. I also wheeze and have that nonproductive cough. My PFTs>have been 85%, to 75%, to 90%. It has been about 7 or 8 months since I had>one though. It would be interesting to find out if sleep apnea has >anything>to do with it. I know I have to sleep on two pillows -- when I don't, my>husband tells me to do so because my breathing is different.>>Sorry for rambling. Take care and hope to talk to you soon!>Hugs and smiles,> :>)_________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.