I started Remi at 5mg/kg 3 months ago. It has only helped slightly, my Dr. has upped the dosage to 7.5mg/kg. It has little improvement. I wanted to know has anyone ever restarted the loading phase (0,2,4 weeks) with a higher dosage? I ask becasue I think the loading phase is to put you into remission and the maintenance is to maintain it. My loading phase didnt put me into remission.
Anyone ever re-do a loading phase with Remi?
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I'm sorry, I don't have the answer to your question as I've just started Remicade last week for the first time. But I do have a question that is somewhat related to yours - has anyone had a loading regimen that was DIFFERENT from the 0-2-4-6-8 method?
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I'm still in the loading phase and they've scheduled it as 0-2-6-8. I'm 3 weeks from my 3rd infusion (the 6 week wait) and I'm noticing symptoms so I'm beginning to doubt their loading schedule.
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Update - I asked my doctor about this and he said that he's never strayed from the dosage recommendations. I mistated it in my initial post - it's actually infusions at weeks 0, 2, and 6 - followed by an infusion every 8 weeks.
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Well, I'm a little behind you in schedule - only beginning Week 4 right now. However, yesterday and today I have noticed that symptoms that disappeared in Week 2 are returning. I really hope that it's due to some environmental factor [e.g. stress (I have job and personal stress), eating the wrong thing (had a cheeseburger the other day), weather, etc] or something other than the Remi not working. These next few weeks should be interesting.
I hope you can make it through to the next infusion too. If you're like me, the thought of returning to my pre-Remi pain/symptoms is daunting and depressing.
I hope you can make it through to the next infusion too. If you're like me, the thought of returning to my pre-Remi pain/symptoms is daunting and depressing.
I did the 0-2-6 reinduction regimen two years ago when Remicade's efficacy period had shortened to only 4 weeks on me (4 weeks of symptoms every other month was not fun). The doctor also had me start taking azathioprine at the same time. I don't remember having any symptoms during the induction phase, and I am still in remission now, so I guess that worked for me. Are you only taking Remi or are you doing any kind of combination therapy?
How are you two now?
Looks like you guys were about one month ahead of me in the 'loading' phase. Having the same frustrating experiences now - far from remission, maybe even a little worse, since starting the Remicade. Noticed improvement for the first week or two but nothing since. Going in for treatment # 4 today (if they'll even see me because I have a cold...)
How are you guys doing following your 8 week treatment? Any better/think this could work?
Take care.
Emily
Looks like you guys were about one month ahead of me in the 'loading' phase. Having the same frustrating experiences now - far from remission, maybe even a little worse, since starting the Remicade. Noticed improvement for the first week or two but nothing since. Going in for treatment # 4 today (if they'll even see me because I have a cold...)
How are you guys doing following your 8 week treatment? Any better/think this could work?
Take care.
Emily
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I didn't even get a loading dose, had remicade then scheduled for next dose at 8 wks. I had been on humira but it had stopped working. Different med, don't know why GI put it that way. 4 wks after first dose, pain, cramping and vomiting from stricture was back. Called and called, finally got 2nd dose at 7 weeks. I had lost weight, when I went to appointment GI couldn't understand why. I told him I needed the remi sooner than every 8 wks. He didn't change dosing schedule, ordered an abdom. ultrasound and lots of bloodwork. My next appt with him is June 27. My next Remicade dose is July 18. If I'm still puking everything up by Monday, I'm going to have to call his office, I am down to 86lbs. I wonder if I would be in this bad of a state if I had started the loading dose of remicade the right way. Oh well.
I didn't do the loading dose when I first started taking Remicade, either. Although it worked at first (like a miracle drug!), it wasn't lasting the full 8 weeks after 6 months or so. It wasn't until I redid the induction regimine and started combo therapy that it started consistently lasting 8 weeks.
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Emily -
Things have been going very well. I would say I am 90% better than I was pre-Remi, which I am very thankful about because I feel like I am finally living again (was in much pain and misery before). I still have some occasional pain and nausea, but nothing like it was before. I am about 2.5 weeks past my third dose so I have another 5.5 weeks to go until the next one. I think this period will be the real test of how effective the drug will be on a long-term basis. If Remi doesn't work very well for you, maybe it's better to cut your losses early and try something else. Personally, I regret wasting too much time in the past 2 years trying out various medications that didn't work - and suffering for it.
SarahAnne -
I went through the regular loading phase. I had read that in some instances Remicade heals the affected areas too quickly and can cause strictures. Since I have some narrowing in my small intestine (not a stricture), I was really worried about healing too fast. I started wondering if maybe I should wait longer than 2 weeks to get the second dose, so I voiced my concerns and asked the doctor if he ever strayed from the recommended loading phase. He said no because he feels the drug manufacturer has done the research and conducted trials to come to the recommendation so that's what he follows. That, to me, is perfectly logical reasoning.
Things have been going very well. I would say I am 90% better than I was pre-Remi, which I am very thankful about because I feel like I am finally living again (was in much pain and misery before). I still have some occasional pain and nausea, but nothing like it was before. I am about 2.5 weeks past my third dose so I have another 5.5 weeks to go until the next one. I think this period will be the real test of how effective the drug will be on a long-term basis. If Remi doesn't work very well for you, maybe it's better to cut your losses early and try something else. Personally, I regret wasting too much time in the past 2 years trying out various medications that didn't work - and suffering for it.
SarahAnne -
I went through the regular loading phase. I had read that in some instances Remicade heals the affected areas too quickly and can cause strictures. Since I have some narrowing in my small intestine (not a stricture), I was really worried about healing too fast. I started wondering if maybe I should wait longer than 2 weeks to get the second dose, so I voiced my concerns and asked the doctor if he ever strayed from the recommended loading phase. He said no because he feels the drug manufacturer has done the research and conducted trials to come to the recommendation so that's what he follows. That, to me, is perfectly logical reasoning.
Starting Tysabri
Hey Scout, truly happy to hear you're doing better. Makes me hopeful and excited to see someone whose been suffering for so long finally find something that works for you.
Didn't work for me, my doctor is putting me on Tysabri. I know it comes with a lot of risks including PML which is fatal but gotta try something to have a higher quality of life again. Getting a blood transfusion on Saturday (not sure how many other Crohn's patients are getting this to combat general fatigue etc?)
Have a good week
.
Emily
Hey Scout, truly happy to hear you're doing better. Makes me hopeful and excited to see someone whose been suffering for so long finally find something that works for you.
Didn't work for me, my doctor is putting me on Tysabri. I know it comes with a lot of risks including PML which is fatal but gotta try something to have a higher quality of life again. Getting a blood transfusion on Saturday (not sure how many other Crohn's patients are getting this to combat general fatigue etc?)
Have a good week
.Emily
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Remicade was great for me at first too, it was truly my miracle drug. The only thing was i wasn't able to hold a full 2 weeks except for the first infusion. My doctor took me off Remicade and gave me Humira instead. I think it works alot better for me, because at the two weeks i get another shot to keep me going and i stopped noticing blood in my stools which was great best of luck to you all
for the post above, my laast choice would be a blood transfusion, i just don't like the idea of it. Instead of that i tried iron pills, but they made symptoms of crohns worse for me, so now i am getting an iron infusion every 2 weeks at the hospital and it works wonders, maybe you could try that?
best of luck to you allfor the post above, my laast choice would be a blood transfusion, i just don't like the idea of it. Instead of that i tried iron pills, but they made symptoms of crohns worse for me, so now i am getting an iron infusion every 2 weeks at the hospital and it works wonders, maybe you could try that?
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Thanks Emily. Keep us informed of how the Tysabri goes. Best of luck!
