Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 About a week ago I was having a flare that mainly affected my energy. I was so exhausted that it was all I could do to get out of bed and stay upright for any length of time. I decided to up my dosage from 4 mg to 10 mg. Within about 4 days I felt like myself again. What a relief. I know it's bad stuff, but sometimes it's the only way that to get quick relief. My doctor actually thought it would have been better to do a medrol pack (starts at 60 mg and goes down 10 mg a day, I think) to get through the flare rather than just up the amount to 10 mg/day. I'm back down to 7.5 this week and will start Remicade in about a week and a half. Maybe then I can get off the prednisone for good. By the way, is there anything I should look for as a reaction to Remicade in the first couple of times I do it? I'm a little bit nervous. What about the day of an infusion? Any extra tiredness? thanks, gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Thanks to all for your responses. - that does make me feel better to know that you are so closely monitored during the infusion, especially at the beginning. Harold, I was wondering how long it took you to find out what the proper dosage was for you in order to get off the prednisone. I know that there is a wide array and one of the reasons I'm going to try Remicade is because the once a week Humira seems like too low a dose to do me any good. I'm hoping that my doctor won't be too conservative - I would hate to suffer another six months before they ramp up to the appropriate dosage. gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 I'm also down from 20mg of prednisone in January to 7.5 mgs.now.. the only thing that has been bothering me is my right ring finger. My RA doctor gave me a shot in it on Tuesday and I feel much better! I'm hoping to go down to 5mg on my next visit in 6 weeks. Then off of it soon after. I haven't been able to stop taking it for the last couple of years. The least I was able to go to was 3mgs....I want off!! He also upped mt MTX to 6 2.5 mgs a week...and I feel that has helped me too. It is a nice feeling to be decreasing finally ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Maggie http://www.4HockeyFans.com http://www.4FloridaHockey.com -----Original Message-----From: gloriarex@... [mailto:gloriarex@...]Sent: Thursday, February 24, 2005 4:48 PMRheumatoid Arthritis Subject: Re: prednisone relief About a week ago I was having a flare that mainly affected my energy. I was so exhausted that it was all I could do to get out of bed and stay upright for any length of time. I decided to up my dosage from 4 mg to 10 mg. Within about 4 days I felt like myself again. What a relief. I know it's bad stuff, but sometimes it's the only way that to get quick relief. My doctor actually thought it would have been better to do a medrol pack (starts at 60 mg and goes down 10 mg a day, I think) to get through the flare rather than just up the amount to 10 mg/day. I'm back down to 7.5 this week and will start Remicade in about a week and a half. Maybe then I can get off the prednisone for good. By the way, is there anything I should look for as a reaction to Remicade in the first couple of times I do it? I'm a little bit nervous. What about the day of an infusion? Any extra tiredness? thanks, gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 I am down to 5 mg of Prednisone a day now too. The Enbrel has done it. I used to be on 20 mg. I was off Pred. for quite a bit and was doing well but then had a flare. The 5 mg. of Prednisone really makes a huge difference in my quality of life and I know there are side effects. But, I want to live life to the fullest (as full as it can be with RA and Crohn's) and if Pred. will help me do it, it's a risk I'm willing to take. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 For about the first three infusions with Remicade I was pretty well wiped out after the infusion. They did give me Benadryl before the infusions to reduce the chance of side effects during the infusion so I don't know whether the Benadryl or the Remicade caused me to be wiped out. Now I get something else before the infusions and don't have any problems during or after the infusions. Also I was started at 3 mg/kg and gradually increased to my current 6 mg/kg, at which time I was finally able to get off Prednisone. God bless. ----- Original Message ----- From: gloriarex@... Rheumatoid Arthritis Sent: Thursday, February 24, 2005 1:47 PM Subject: Re: prednisone relief About a week ago I was having a flare that mainly affected my energy. I was so exhausted that it was all I could do to get out of bed and stay upright for any length of time. I decided to up my dosage from 4 mg to 10 mg. Within about 4 days I felt like myself again. What a relief. I know it's bad stuff, but sometimes it's the only way that to get quick relief. My doctor actually thought it would have been better to do a medrol pack (starts at 60 mg and goes down 10 mg a day, I think) to get through the flare rather than just up the amount to 10 mg/day. I'm back down to 7.5 this week and will start Remicade in about a week and a half. Maybe then I can get off the prednisone for good. By the way, is there anything I should look for as a reaction to Remicade in the first couple of times I do it? I'm a little bit nervous. What about the day of an infusion? Any extra tiredness? thanks, gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 Hi Gloria, I did Remicade for about 9 months - each person and experience is different of course, but I never had any problems. Unlike , I wasn't given any Benedryl beforehand (even the first time), but they do monitor you carefully during the infusion. At my doc's office they have an 'Infusion Room' with several large recliners, pillows, blankets, and IV polls. I always took something with me to read, but usually spent the time talking with the wide variety of people there. There's a set dose that's given the first 3 infusions (that is based on your weight). Often people don't feel any improvement until after the 3rd infusion (I was like that). Once it kicked in, I felt terrific. I did well after the next 2 infusions, then started not doing as well, so they tried upping the dose and making the infusions more frequent. Unfortunately, for me it didn't get better, and I had to quit after about 9 months. But I know for many people that it is a wonder drug. Hope it is for you! Beth > Thanks to all for your responses. - that does make me feel better to > know that you are so closely monitored during the infusion, especially at the > beginning. > > Harold, I was wondering how long it took you to find out what the proper > dosage was for you in order to get off the prednisone. I know that there is a > wide array and one of the reasons I'm going to try Remicade is because the once > a week Humira seems like too low a dose to do me any good. I'm hoping that my > doctor won't be too conservative - I would hate to suffer another six months > before they ramp up to the appropriate dosage. > > gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 Maggie, have you gained weight taking prednisone? I take prednisone 20 mg when needed but I gain weight. I am ready to go see if my Dr will give me a prednisone injection in my back because that's where most of my pain is. I can hardly walk sometimes........Joyce M ----- Original Message ----- From: Maggie Rheumatoid Arthritis Sent: Thursday, February 24, 2005 4:35 PM Subject: RE: prednisone relief I'm also down from 20mg of prednisone in January to 7.5 mgs.now.. the only thing that has been bothering me is my right ring finger. My RA doctor gave me a shot in it on Tuesday and I feel much better! I'm hoping to go down to 5mg on my next visit in 6 weeks. Then off of it soon after. I haven't been able to stop taking it for the last couple of years. The least I was able to go to was 3mgs....I want off!! He also upped mt MTX to 6 2.5 mgs a week...and I feel that has helped me too. It is a nice feeling to be decreasing finally ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Maggie http://www.4HockeyFans.com http://www.4FloridaHockey.com -----Original Message-----From: gloriarex@... [mailto:gloriarex@...]Sent: Thursday, February 24, 2005 4:48 PMRheumatoid Arthritis Subject: Re: prednisone relief About a week ago I was having a flare that mainly affected my energy. I was so exhausted that it was all I could do to get out of bed and stay upright for any length of time. I decided to up my dosage from 4 mg to 10 mg. Within about 4 days I felt like myself again. What a relief. I know it's bad stuff, but sometimes it's the only way that to get quick relief. My doctor actually thought it would have been better to do a medrol pack (starts at 60 mg and goes down 10 mg a day, I think) to get through the flare rather than just up the amount to 10 mg/day. I'm back down to 7.5 this week and will start Remicade in about a week and a half. Maybe then I can get off the prednisone for good. By the way, is there anything I should look for as a reaction to Remicade in the first couple of times I do it? I'm a little bit nervous. What about the day of an infusion? Any extra tiredness? thanks, gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 Hi, Yes, I gain weight. When I was first diagnosed with RA in 1993 I weighed 115lbs. Now I'm at 175lbs after years of shots, prednisone pills and inactivity. My face has gotten the round look where it used to be thin. In October I joined a gym and can walk 2 miles 3-4 times a week and do some weights. So I'm hoping to get totally off the prednisone soon and stick to the gym and lose weight. I started MTX in 1995 and it works well for me. I read of everyone having troubles with it, but I'm one of the lucky ones I guess. My uncle can't take it, as it makes him very ill and i'm the one with the weak stomach in the family lol. So my dr upped me by one pill and it is helping now too. You may want to see if your dr can give you a shot in the back . Like I said, my finger was the only thing hurting at this time. It was swollen and purple. My RA dr shot it on Tuesday and now it's just a little stiff. It will get better in the next few days. This will do til the next flare comes around wherever it may be. Good luck! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Maggie http://www.4HockeyFans.com http://www.4FloridaHockey.com -----Original Message-----From: Joyce McCrary [mailto:j.mccrary@...]Sent: Friday, February 25, 2005 2:27 AMRheumatoid Arthritis Subject: Re: prednisone relief Maggie, have you gained weight taking prednisone? I take prednisone 20 mg when needed but I gain weight. I am ready to go see if my Dr will give me a prednisone injection in my back because that's where most of my pain is. I can hardly walk sometimes........Joyce M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 Best wishes, , You have to do what will make you feel better. I wish you well. - > Hello , > > just wanted to say me to but im just going up with the pred ( so just hope to get the pain down so i can get back on my feet ! I wish you and all luck with your reducdion though and less pain ! > > later john > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 I started Remicade on 6/11/02 at 3 mg/kg and after some other increases went to 6 mg/kg on 2/21/03 and was completely off Prednisone on 3/24/03. When I finally got relief from Remicade it was just in time because the doctor was planning on going to something else if that infusion had not worked. God bless. ----- Original Message ----- From: gloriarex@... Rheumatoid Arthritis Sent: Thursday, February 24, 2005 5:19 PM Subject: Re: prednisone relief Thanks to all for your responses. - that does make me feel better to know that you are so closely monitored during the infusion, especially at the beginning. Harold, I was wondering how long it took you to find out what the proper dosage was for you in order to get off the prednisone. I know that there is a wide array and one of the reasons I'm going to try Remicade is because the once a week Humira seems like too low a dose to do me any good. I'm hoping that my doctor won't be too conservative - I would hate to suffer another six months before they ramp up to the appropriate dosage. gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 , Thanks for the well wishs it means alot when someone drops you a line i know everyone has there bad days me for one and a lot of them i cannt get my pain under controll at all my mtx up and down now knees and shoulder joints but you know i was here for months before more than two or three spoke to me i talked a friend into joining that needed to be here shes got it R/A real bad Maybe lupus And noone greeted her she left , and im still trying to get her back she needs the support i know she just came in at a dry time cause theres too many nice people in here ,and then everyone needs some warming up to in my oppion i just thank you for writeing back i just have a lot on my mind and it means a lot to me thanks !! later john <dhuntress@...> wrote: Best wishes, ,You have to do what will make you feel better. I wish you well.-> Hello ,> > just wanted to say me to but im just going up with the pred ( so just hope to get the pain down so i can get back on my feet ! I wish you and all luck with your reducdion though and less pain !> > later john> > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2005 Report Share Posted February 26, 2005 , Everyone here understands chronic pain and we know it's not easy to deal with. I hope your friend finds the support she needs; it's very important to feel listened to and supported. The everyday decisions we have to deal with with our bodies does not make things easy. Wishing you well, Quote Link to comment Share on other sites More sharing options...
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