Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 , Much like you, after my first Remicade infusion I felt tons better the next day. My fatigue and some pain started to come back a little over a week after the first infusion but went away again with the second infusion. I am about to have my third infusion in two days and am still feeling great. So it hasn't seemed to have worn off this time. It is funny how we don't realize just how bad we felt until we feel better again. Yeah, I knew I was exhausted and wanted to die, but I forgot how easy things are to do when you feel good and just how bad I did feel. Kate - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 I have a question for everyone out there who is currently taking Remicade. I am currently on it myself but I haven't seen any benefits at all from it yet. I have had 3 infusions and scheduled for my 4th on 11/27. So far I haven't seen any signs of the disease slowing down at all. I currently still have inflamed joints in my hands which are becoming increasingly more and more disfigured and bent to spite being on the remicade. I asked my rheumy what my dosage was and she told me I was taking 200 mg of Remicade and she could up it to 300 mg but that would be the most she could increase my dosage. I know they determine the amount by how much you weigh and I weigh 165 lbs. My question to those of you who are on remicade is how much remicade do you receive and what is your body weight? Do you use it in conjunction with mtx or do you use it with another med like arava? I have heard people receiving up to 600 mg and weigh 165 lbs and I'm wondering why my rheumy feels I can only receive 300 mg if I weigh 165 lbs? Thanks to all- Kathleen [ ] Re: Remicade question , Much like you, after my first Remicade infusion I felt tons better the next day. My fatigue and some pain started to come back a little over a week after the first infusion but went away again with the second infusion. I am about to have my third infusion in two days and am still feeling great. So it hasn't seemed to have worn off this time. It is funny how we don't realize just how bad we felt until we feel better again. Yeah, I knew I was exhausted and wanted to die, but I forgot how easy things are to do when you feel good and just how bad I did feel. Kate - Please visit our Psoriatic Arthritis Group's informational web page at: http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). In August 2001 list member Jack aka(Cornishpro@...) began to conduct extensive research which he publishes as the Psoriatic Arthritic Research Newsletter monthly in our emails and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage. Also remember that the list archives comprise a tremendous amount of information (Over two years of messages and answers).Feel free to browse them at your convenience. Let's hear from some of you lurkers out there! If you have a comment or question chances are there is a person who has been around a while who can help you out with an educated guess for an answer. If not we can at least steer you in the right direction with a good website to go to for the answers. Blessings and Peace, Atwood-Stack, Founder Alan , Web & List Editor Jack , Newsletter Editor Pat Bias, List Editor Ron Dotson, List Editor and many others who help moderate (thank you!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 In a message dated 11/7/02 5:20:14 PM Central Standard Time, thekoolkat@... writes: > I am currently on it myself but I haven't seen any benefits at all from it > yet. Hi Kathleen Do you have psoriasis of the skin too? If so has the remicade had any effect on it? Orin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 Kathleen Apparently the normal dose is somewhere between 3 and 5 mg/kg. Since you weigh approximately 75 kg your normal dose would be 225 mg to 375 mg each time. I get 700 mg in each infusion because I weigh 150 kg. The chemo nurse was telling me that she had patients on 700mg who were much smaller than me and she also had patients getting infusions more frequently. You could be increased to 375mg without breaking the rules; and further if your rheumy has experience. A previous post said that MTX was needed to stop your body making antibodies to the mouse proteins in Remicade. I have just had my second shot, so its difficult to tell if it is going to last. I think a lot of my joints have gone down from their previously swollen state. This makes them very sore. My knees, hips and fingers in particular hurt a lot when I move. This pain is a lot different from the PA pain and is controlled with an ordinary NSAID. There is a lot of scraping, clicking and other things going on in my knees that are probably the bone spurs and other outgrowths from the PA. I regard all of this as osteo-A from the damage done by PA and not PA itself. So long as I don't get brain fog I'll be happy. On Thursday, November 7, 2002, at 03:25 PM, Kathleen Plicet wrote: > I have a question for everyone out there who is currently taking Remicade. > I am currently on it myself but I haven't seen any benefits at all from > it yet. I have had 3 infusions and scheduled for my 4th on 11/27. So > far I haven't seen any signs of the disease slowing down at all. I > currently still have inflamed joints in my hands which are becoming > increasingly more and more disfigured and bent to spite being on the > remicade. I asked my rheumy what my dosage was and she told me I was > taking 200 mg of Remicade and she could up it to 300 mg but that would be > the most she could increase my dosage. I know they determine the amount > by how much you weigh and I weigh 165 lbs. My question to those of you > who are on remicade is how much remicade do you receive and what is your > body weight? Do you use it in conjunction with mtx or do you use it with > another med like arava? I have heard people receiving up to 600 mg and > weigh 165 lbs and I'm wondering why my rheumy feels I can ! > only receive 300 mg if I weigh 165 lbs? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 Orin, I had a few patches on my torso and back and in my pubic area that went away. I give thanks to the Temovate ointment and solution & covering the area with band aids or large patches, and leaving it on for at least a day; but those went away before I started the remicade. However, I still have a VERY mild case on my scalp and in my ears and that hasn't changed since I started the infusions. Kat Re: [ ] Re: Remicade question In a message dated 11/7/02 5:20:14 PM Central Standard Time, thekoolkat@... writes: > I am currently on it myself but I haven't seen any benefits at all from it > yet. Hi Kathleen Do you have psoriasis of the skin too? If so has the remicade had any effect on it? Orin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 In a message dated 11/8/02 3:29:36 AM Central Standard Time, thekoolkat@... writes: > >I am currently on it myself but I haven't seen any benefits at all from it > > >yet. > > Hi Kathleen Do you have psoriasis of the skin too? If so has the > remicade > had any effect on it? I had a few patches on my torso and back and in my pubic area that went away. I > give thanks to the Temovate ointment and solution & covering the area with > band aids or large patches, and leaving it on for at least a day; but those > went away before I started the remicade. However, I still have a VERY mild > case on my scalp and in my ears and that hasn't changed since I started the > infusions. > The reason I asked is I've been thinking about reasons why some people have miraculous results from a particular drug while others seem to have no effect at all. That is starting to suggest to me that maybe the actual cause is not the same and one step further is it actually the same disease? Take the similarities between RA and PA, clinicly very similar but PA can destroy joints in absence of elevated Rhuematoid factor. I havent had to deal with a lot of serious arthritis I had one bad episode lasting about 6 months then tapering off over the next 6 months that is in near total remission now and I came through it with relatively minor damage so I really dont have a lot of personal experience to go on with that. I cant pick out anything I have changed in my diet that might be responsible for the improvement, other than lots of fresh garlic, but my joint condition seems completely independant of the skin condition. I'm in remission from the arthritis but my skin hasn't gone into remission in 14 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Hi Gang, My Dr. wants to put me on remicade. He also wants to continue the MTX. I'm a little freaked out about this as I've never done the infusion stuff before. I've read a little about this and it just makes me more nervous. The gene splicing basis freaks me out. Has anyone taken this? Any issues? Hope you all are doing well! Meg in MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Meg, I've taken it since last July, I have no issues with it but I do wonder if it's doing anything really, I take 4 mtx a week in addition. We will be discussing it at my next dr mtg, I may switch but I don't want a self inject, I may look at Orencia. mary in pa [ ] Remicade question Hi Gang, My Dr. wants to put me on remicade. He also wants to continue the MTX. I'm a little freaked out about this as I've never done the infusion stuff before. I've read a little about this and it just makes me more nervous. The gene splicing basis freaks me out. Has anyone taken this? Any issues? Hope you all are doing well! Meg in MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Hi Rhonda- Any chance they gave you a dose of benadryl before or during your infusion? I get benadryl, tylenol, and i.v. steroids with every infusion. The benadryl can make you sleepy and thirsty. It does both for me. The steroids also cause some issues for a day or two, but now that my doses are every two months its not a big deal. Good luck with the remicade. It has been a near-miracle for me. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Jill, I was not given anything orally. I don't know if anything was injected into the I.V.(shame on me for not being more observant). I will make sure on my second infusion, which is one week from Tuesday. It is so encouraging that Remicade has done so well for you. I am cautiously optimistic. I am ready to get my life back! Thanks, Ronda Quote Link to comment Share on other sites More sharing options...
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