Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Lea, I am on Remicade and it helped at first, but we tweaked up the dosage and frequency. My problem is that with recurring infections and other niceties, I had not been able to be consistant in my therapies. When I was consistant it helped a lot, but did not last the whole 6 weeks. At week 5 I knew it was almost time for my next treatment. MTX is frequently the drug of choice given together with many of the biologics. However, from what I have read the additional drug can be any of the ones that act in the same manner blocking similar inflammatory processes. I am on Imuran with Remicade because of my lung involvement and not MTX (I had been on MTX prior to major lung issues). However,according to my RD the Imuran is not quite as effective as MTX on the other Stills stuff. Gotta strike a balace. But, as you know, Dr. Cush is THE MAN when it comes to the Dragon. Concerning how long is the infusion. Mine takes about 3 hours. But the dose is based on weight and dose. I am at 10mg/kg and have a lot of Kilograms attached to my bones, lol. So, if your daughter is lighter and at a dose of say 4mg/kg it may only take about 2 hours. Usually the first time takes a little longer because the infuse slowly to start to make sure there are no allergic reactions. Some centers always prep with Benedryl and some others include prednisone to avaoid allergic reactions. Some just give an oral antihistamine at the start. So, the best to your daughter. And you hang in there. Continue to give her the support and encouragement you have been. But remember that at her age she wants to fly on her own somewhat, so be there for when she needs you. It sounds like you have a good relationship and that is what counts. Tom (Fuzzy) > > , > > thank you. I had read that she should take MTX with it but Dr. Cush is using Arava instead. I guess it is an older substitute for MTX. He had already added that to the mix a week ago and had notice an improvement. How long does the infusion take. She will be in Austin and I live in Dallas.Because she is in school there her doctor is trying to get this et up through a doctor in Austin. My other daughter is coming over from San to be with her but I didn't know whether I should go down too. She thinks she will be fine with her sister. > > I guess we never quite being mothers. Thank Heavens. > Lea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Lea, I am on Remicade and it helped at first, but we tweaked up the dosage and frequency. My problem is that with recurring infections and other niceties, I had not been able to be consistant in my therapies. When I was consistant it helped a lot, but did not last the whole 6 weeks. At week 5 I knew it was almost time for my next treatment. MTX is frequently the drug of choice given together with many of the biologics. However, from what I have read the additional drug can be any of the ones that act in the same manner blocking similar inflammatory processes. I am on Imuran with Remicade because of my lung involvement and not MTX (I had been on MTX prior to major lung issues). However,according to my RD the Imuran is not quite as effective as MTX on the other Stills stuff. Gotta strike a balace. But, as you know, Dr. Cush is THE MAN when it comes to the Dragon. Concerning how long is the infusion. Mine takes about 3 hours. But the dose is based on weight and dose. I am at 10mg/kg and have a lot of Kilograms attached to my bones, lol. So, if your daughter is lighter and at a dose of say 4mg/kg it may only take about 2 hours. Usually the first time takes a little longer because the infuse slowly to start to make sure there are no allergic reactions. Some centers always prep with Benedryl and some others include prednisone to avaoid allergic reactions. Some just give an oral antihistamine at the start. So, the best to your daughter. And you hang in there. Continue to give her the support and encouragement you have been. But remember that at her age she wants to fly on her own somewhat, so be there for when she needs you. It sounds like you have a good relationship and that is what counts. Tom (Fuzzy) > > , > > thank you. I had read that she should take MTX with it but Dr. Cush is using Arava instead. I guess it is an older substitute for MTX. He had already added that to the mix a week ago and had notice an improvement. How long does the infusion take. She will be in Austin and I live in Dallas.Because she is in school there her doctor is trying to get this et up through a doctor in Austin. My other daughter is coming over from San to be with her but I didn't know whether I should go down too. She thinks she will be fine with her sister. > > I guess we never quite being mothers. Thank Heavens. > Lea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2008 Report Share Posted November 9, 2008 Lea, I'm sure your daughter will be fine with her infusion. They always have licensed nurses and Dr's are nearby in those infusion centers should they be needed. I've never had Remicade, but I was on Orencia for a while and now on Rituxen and it's never been a problem as far as being able to drive or doing anything different. I think it's great her sister will be with her the first time, because she doesn't know what to expect, and moral support is always great! But it won't be painful, or even uncomfortable. Just a bit boring I imagine for a young woman. Tell her to take a good book with her :-) And tell her good luck...I hope this is her magic bullet! in SA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2008 Report Share Posted November 9, 2008 Lea my name is Sherry and I take Rmmicade. I didn't see the initial email, but will assume it was asking for advice on Remicade. I think I started taking mine end of last year or beginning of this one. For me Remicade does a good thing. I now take it every 2 months and I can always tell when I am coming close to needing another dose. I don't know if everyone is given the same type of anti infection medicine (benedryl), but after receiving mine it makes me very sleepy. Most times I sleep through my infusion. The one thing I will say is that I am still groggy and tired for a while after my infusion. I always try and make sure that I have someone with me that can drive me home. Remicade for me makes stills bearable. I am however going through a rough patch, something I will talk with my doc about later this month. I hope it does well for your daughter, Sherry. -------------- Original message from " Bouldin " : -------------- Lea, I'm sure your daughter will be fine with her infusion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2011 Report Share Posted September 12, 2011 What has the group heard about a shortage of Remicade. Has anyone not been able to receive their recent dose? Thanks. Kathy from WI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2011 Report Share Posted September 13, 2011 I hadn't heard about Remicade, but did have a friend report that she had trouble finding Methotrexate for her son due to a shortage of that. Myndi Fitzgerald (317)503-3701 www.monavie.com Sent from on Android 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.