Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Hi Sue #2 I have been on Remicade since Oct and it didnt really start to work on me until I started the mtx. I had been getting it every 4 weeks because I couldnt hold off for 6 weeks with out flaring until now. Since I had the heart thing they decided to make me go to 6 weeks..but they increased the mtx to 20 mg Im and it has held me until this w/e.I was supposd to get it today but have been hoarse and congested since last Thursday so started on antibiotic and will have infusion on Thursday. Its an IV not an injection. I started with chills during infusion and low grade temp, headache comes either later in the day or the day after. I take 20 mg of prednisone night before infusion and 20 mg morning of the infusion and just before the infusion they give me 25 mg of benedryl IV and that has taken away the chills and for the most part the h/a. Sometimes I get one for a short time the next day. I take 5 vials and now I cant wait till I get it, I have been flaring and lo grade temp.since Sat. I kind of thought it wasn't doing any good, that the mtx was the only thing working but since I had to wait these 3 extra weeks I see that it was working and Im ready for it on Thursday. I do get it very slowly over a 3 hr period to stop the h/a, and for the most part that helps. I do have a slight rash on my rt cheek from the remicade but thats it. Dont feel like a failure, this disease takes away so much from us but we are not failures..we are survivors...Remicade has helped me so much, so try not to be afraid of it..Good luck with the enbrel but if its not meant to be I hope Remicade works for us. Hang in there, I see the light at the end of the tunnel for you Sue, you have been suffering way to long..and so unneccessary too..insurance companies cause us so much grief..Hope this helps love Pat from MA > I know that some of you are on Remicade and that we have talked about it > several times, but now that I am possibly facing it, can we update more > about it, and the ones on it, can you tell me any side effects that you have > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Hi Sue #2 I have been on Remicade since Oct and it didnt really start to work on me until I started the mtx. I had been getting it every 4 weeks because I couldnt hold off for 6 weeks with out flaring until now. Since I had the heart thing they decided to make me go to 6 weeks..but they increased the mtx to 20 mg Im and it has held me until this w/e.I was supposd to get it today but have been hoarse and congested since last Thursday so started on antibiotic and will have infusion on Thursday. Its an IV not an injection. I started with chills during infusion and low grade temp, headache comes either later in the day or the day after. I take 20 mg of prednisone night before infusion and 20 mg morning of the infusion and just before the infusion they give me 25 mg of benedryl IV and that has taken away the chills and for the most part the h/a. Sometimes I get one for a short time the next day. I take 5 vials and now I cant wait till I get it, I have been flaring and lo grade temp.since Sat. I kind of thought it wasn't doing any good, that the mtx was the only thing working but since I had to wait these 3 extra weeks I see that it was working and Im ready for it on Thursday. I do get it very slowly over a 3 hr period to stop the h/a, and for the most part that helps. I do have a slight rash on my rt cheek from the remicade but thats it. Dont feel like a failure, this disease takes away so much from us but we are not failures..we are survivors...Remicade has helped me so much, so try not to be afraid of it..Good luck with the enbrel but if its not meant to be I hope Remicade works for us. Hang in there, I see the light at the end of the tunnel for you Sue, you have been suffering way to long..and so unneccessary too..insurance companies cause us so much grief..Hope this helps love Pat from MA > I know that some of you are on Remicade and that we have talked about it > several times, but now that I am possibly facing it, can we update more > about it, and the ones on it, can you tell me any side effects that you have > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Sue, Judy here, I have been on Remicade since Jan 03. I have mixed feelings about it. (I also take 12.5 mg MTX) I feel it didn't do anything until we added the mtx and still only helps for short periods of time approx 3wks. I take 5 units every 4 weeks. The trick to limiting the side effects is pre medications with pred and clartin and an infusion nurse who knows what she/he is doing. The slower the drip the less chance of reaction and side effects like headaches. I insist on a controled IV. for the first hour I am at 60 drops after that I increase the drips as tolerated. An infusion usually takes at least 3 1/2 hours. But I am able to go back to work and feel fine (alittle tired). If you have any other questions please feel free to contact me. Hope this helps. Judy, Collegeville,PA moyer@... > Dear Sue, > > Just a swift comment here. is on the Enbrel. She > has been for quite some time. Of course she's not with the > group right now as there were some serious family problems > going on. She did quite well on the Remicade. There are others > who it didn't work for, but, I know there are several in the group > who are on it, and it is helping them. Hopefully they will read > your e-mail and let you know what you need to. > > Will answer your e-mail to me tomorrow hon. Got myself super > overtired, and need to go to bed early tonight. Please know I > care! > > Love & hugs, tricia > p.s. Yes, I used to blame myself, my husband,(that he brought > some strange disease back from Vietnam) and just the whole > world in general. I no longer blame anyone, and it's easier to > cope with the dragon. Not a piece of cake, but doable. > ******************************************************** > > -- Remicade questions > > I know that some of you are on Remicade and that we have talked about it > several times, but now that I am possibly facing it, can we update more > about it, and the ones on it, can you tell me any side effects that you have > had, or the side effects that it holds. He tells me that it will be every > six weeks for the injection which is fine with me. I am anxious to know > more about it now, now that I am possibly facing this. Thanks as always. > Love, Sue #2 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Hello, all! I have just started Remicade and since I'm new to this I have a few questions for you experienced Remicade patients. First, the Remicade made me feel really ill afterwards, like lay in bed and don't get up for 5 days, hit by a Mack Truck kind of ill. I felt weak, achy, nauseous and, uh. intestinally distressed and in the bathroom a lot. Is that normal? (I can't believe I am asking perfect strangers this haha) From day 6- now (day 11) some of the ache has left, but I still feel weak tho less so, nauseous and am still quite intestinally unwell.. I'm taking Pepto-Bismol and Pepcid every day but it doesn't do much. Does this all sound like par for the course? Is this the trade off for joints feeling better (which they are, a little, but this was just my first treatment so I still have high hopes.) What else can I expect? Does it change with time, the longer you take it? Does it ever stop working tho it was working before, it stops after you take it foe so long? Any info would so greatly appreciated!!! Thanks, everyone!! Carla 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.