Hi all. I am new to the forum. My name is Richard and I am a 36 yr. old male form GA. I was diagnosed with Crohn's in 1995 and had a small bowel resec. a year later in 1996. I developed a couple of abscesses and fistulas in 2006 and had an incision done in Sept. of 2006 to drain. I battled with that for almost a year of coming and going and taking antibiotics ( Flagyl and Levaquin ) and then I saw a colo-rectal surgeon in August of 2007 and he installed 4 drain tubes and setons. I went back in Sept. of 2007 and he flushed it all all and replaced the tubes. I am still having pain and drainage and all I get from the Dr. is he doesn't understand why. I had a flare up about 3 weeks ago and so I am now on Prednisone again. I have not responded to Asacol or Pentasa so my Gastro finally wants me to do Remicade. I have talked about this for a little over a year now. It looks kinda scary, but it also looks like it could be great if it works for me. I go to have my first treatment next Tuesday the 22nd. and was just wanting to hear from anyone who has had it. Did it work for you? Did it not? Is your situation like mine or worse? I guess anything I can find out before I go would be great and I will of course make sure I update my personal experience with this drug as I go through my treatments. Thanks for reading and I hope to hear from some of you soon.... RC
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New member. Would like to talk with people who have used Remicade
- Thread starter TheyCallMeRC
- Start date
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Shane
Guest
Hi there, welcome to the forum.
I have severe Crohn's affecting my whole colon. Prednisolone supressed the symptoms but, due to the long-term side effects I had to try other drugs. I couldn't tolerate Azathioprine/Imuran so started on Infliximab/Remicade in November. I find the infusion very straightforward and only had limited side-effects from it overall. This treatment has kept me off the Prednisolone so far and I've been impressed with it. I've had a small set-back recently but seem to be getting over it now.
Good luck, I hope it works for you.
Shane
I have severe Crohn's affecting my whole colon. Prednisolone supressed the symptoms but, due to the long-term side effects I had to try other drugs. I couldn't tolerate Azathioprine/Imuran so started on Infliximab/Remicade in November. I find the infusion very straightforward and only had limited side-effects from it overall. This treatment has kept me off the Prednisolone so far and I've been impressed with it. I've had a small set-back recently but seem to be getting over it now.
Good luck, I hope it works for you.
Shane
Kev
Senior Member
- Location
- Halifax, NS, Canada
Hey RC Welcome to the forum. I haven't gone Remicade, so I can't offer personal experience stories about the drug/treatment regimen. My GI and I have talked about the possibility of one day going the Remicade route. One of the problems is the cost. I don't have private insurance, subsidized medical care in my part of the world doesn't cover drug costs, and the cost of Remicade treatment would run me about $6,000.00 - $7,000.00 per dose. That just puts it outside of my grasp. Even if I could come up with the initial funds to start it, there is no way I could maintain this expense long term. And, realistically, once one begins Remicade therapy, it essentially is a treatment regimen one must be comfortable committing to from then on. The odds and risks of starting it, then discontinuing it, then attempting to take it again if/when the need arises, just isn't practical/advisable. Many GI's commonly maintain that once on Remicade you remain on it indefinitely... or until it stops working for you. That's why it would be my next to last option... just short of a total colostomy. There may be other options for you. Has your doctor suggested any other choices? I would suggest that you talk it over, see if there are others, and discuss why the Remicade seems to be the one your doctor favours, before you get into it.
C
Christina
Guest
Remicade
I have been taking Remicade for about 3 years. It works great. Ever since I have been on it, I have had NO pain and it has kept my Crohn's in a kind of Remission. I have never had any side effects from the drug. I usually start to bleed about a couple days before my treatment, but the day i get my treatment, it stops. I have had Crohn's for a little over 5 years. Prednisone, Asacol, and Mercaptapurine never helped. After I stopped taking those and only the Remicade, I have felt great ever since. Good luck with your treatment and I hope it does as good for you as it did for me.
I have been taking Remicade for about 3 years. It works great. Ever since I have been on it, I have had NO pain and it has kept my Crohn's in a kind of Remission. I have never had any side effects from the drug. I usually start to bleed about a couple days before my treatment, but the day i get my treatment, it stops. I have had Crohn's for a little over 5 years. Prednisone, Asacol, and Mercaptapurine never helped. After I stopped taking those and only the Remicade, I have felt great ever since. Good luck with your treatment and I hope it does as good for you as it did for me.
K
kg0603
Guest
I'm new to the forum too...Sounds like you and I are very much a like. I am currently on Remicade and have a fistula myself. I did the seton thing...Didn't work. The Remicade has masked a lot of the symptoms associated with the fistula but has not closed it. I know everyone is different and may respond differently to treatments. So, for you, maybe it will close your fistulas. I get my treatments every 8 weeks as a maintenance. I have not had any flare ups for probably the last 1 1/2 - 2 years. Which from the situation I was in, this is great but, I do get side effects after my treatment. Instead of me typing it out again, please read my "new to the forum" post. I hope this helps and I wish you luck with your first treatment.
butt-eze
Superstar
I took Remicade for a limited time. I responded to it and had some relief to my symptoms. However, I have discontinued using Remicade due to it potentially causing a lung disease. The doctors are not able to say for certain if it was the Remicade or just a side effect of my crohn's disease itself.
I didn't want to do Remicade but had run out of options. If you're a healthy person and feel that you could recover from a severe reaction than I would say it's likely worth it.
I didn't want to do Remicade but had run out of options. If you're a healthy person and feel that you could recover from a severe reaction than I would say it's likely worth it.
J
jjs16
Guest
Welcome RC,
I have had Crohns for about 30 years, long ago I had a small intestine resection and drains and all of that stuff. It worked fairly well for me and I managed to stay off any meds for most of my life, unless alcohol counts as a med.
My gut started to really act up about 4 years ago and I started taking prednisone, imuran, iron, vitD, calcium and phosomax. It worked until I backed off of the pred and I had to keep going up and down in my dosages, with all of the lovely side effects. I am now taking remicade infusions, I've had three and am due for another in about a month. It seems to be working with slight issues due to stictures (narrowing in the intestines), I take some pain meds for this when it happens.
All in all I'm happy so far. The cost is outrageous $4800 per infusion, I have a great plan which covers 100% of this or I couldn't do it.
I'll let you know if anything comes up, but for now I'm happy.
j
I have had Crohns for about 30 years, long ago I had a small intestine resection and drains and all of that stuff. It worked fairly well for me and I managed to stay off any meds for most of my life, unless alcohol counts as a med.
My gut started to really act up about 4 years ago and I started taking prednisone, imuran, iron, vitD, calcium and phosomax. It worked until I backed off of the pred and I had to keep going up and down in my dosages, with all of the lovely side effects. I am now taking remicade infusions, I've had three and am due for another in about a month. It seems to be working with slight issues due to stictures (narrowing in the intestines), I take some pain meds for this when it happens.
All in all I'm happy so far. The cost is outrageous $4800 per infusion, I have a great plan which covers 100% of this or I couldn't do it.
I'll let you know if anything comes up, but for now I'm happy.
j
Thanks everyone for responding..... I also have another problem with this that I am having to look into. Right now I am applying for disability which my attorney says I should be able to get because of the recurring fistulas, that is an automatic approval. So anyway, I am on medicaid and they are covering the Remicade and I am covered until at least May. But what happens if after May and I am no loger covered? There is no way I can pay for this myself. I know as far as prednisone is concerned, that you can become very sick and even go into shock if you are taking high doses and stop suddenly. Well, what happens if I take Remicade for 3 months and have to stop, wil I get sick that way? I am trying to get in touch with my Dr. today to find out about this.
Kev
Senior Member
- Location
- Halifax, NS, Canada
Hey RC Altho I havent' taken Remicade (yet) I did discuss it at length with my GI. I was concerned because I had heard informaly here on the forum that once I start Remicade, that it was impossible to come off it, and then return to it. My GI said it wasn't completely impossible; but that it was rarely done. The reason? Once you come off of it, the odds that your body will develop anti-bodies to the treatment increases dramatically, and that historically, the improvements/benefits were much, much lower. Due to the increased risks and the reduced benefits, most doctors prefer to keep patients on it indefinitely, on a maintenance dosage. So, realistically, if you are contemplating Remicade, its best if you consider/appraise your ability to acquire/pay for this med long term.
now, i'm no doctor, and i'm para-phrasing what my GI said, so this is all 2nd hand info. I would advise you to discuss this with your doctor, get their take. Then make your decision. It's almost criminal the cost of these vital treatments
now, i'm no doctor, and i'm para-phrasing what my GI said, so this is all 2nd hand info. I would advise you to discuss this with your doctor, get their take. Then make your decision. It's almost criminal the cost of these vital treatments
Wel I did talk to them a short while ago. They told me that we will deal with May when May comes around. If I lose my ability to pay for the drug then they said there are some other assistance programs as well as the pharmcutical company itself that can help me continue if need be.. So all I know is we will cross that bridge when we come to it.
Kev
Senior Member
- Location
- Halifax, NS, Canada
Yeah, easy for the doctors to say that. don't get me wrong, I'm not suggesting you dont' listen to them.. They may be able to get you into a program that will pay for this drug long term... Or the remicade folks may (it could happen) provide you the drug for free.. (that's pretty much the only 2 ways I could go remicade). I just dont' have a warm/fuzzy feeling personally - if I go that route - relying on the 'charity' of the people who make remicade. But I'm pessimistic by nature. For me, its' a real worry, and doctors need to be 'aware' its legitimate concern. IF they could guarrantee a patient their meds, then they would, right? Anyway, in the mean time... all you can do is take them at face value, accept their advice, hope that if the need arises this will all fall into place. most importantly, try not to worry about it. Even if it is taken off the table just due to economic realities, there ARE other options.. maybe even better options. Anyway, as you can gather, you are not alone in these sorts of dilemmas (sp?). worrying isn't going to change what will happen, just make you feel miserable.
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Shane
Guest
Reading all of this, it makes me realise how lucky we are in the UK when it comes to paying for drugs like Remicade. Although we do pay via our taxes. Suppose I must be getting my money's worth now.
Shane
Shane
F
fgillette1986
Guest
I was on Remicade for about a year and a half to two years, if I recall correctly. The first year and a half was great. I actually felt normal. The experience of it all changed in the last 6 months of being on it. It seemed that the effects only lasted a few weeks after an infusion. Then, the final time I had an infusion, I had an allergic reaction. Thanks to the nurses and my ability to stay completely calm, it did not escalate to a major allergic reaction.
Well, I had my first infusion today. Everything seemed to go well, no allergic reactions or anything yet. I will keep posted if I notice anything good or bad. Haven't noticed anything yet, but maybe tomm.
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sarahinyoface
Guest
my doctor wants me to go on remicade (infliximab)
my white cell count is not right at the moment. so ive reduced one of my tablets and i had a blood test on monday. so i should get the results of that tomorrow. so if everythings ok, i'll be able to go on the treatment soon.
my white cell count is not right at the moment. so ive reduced one of my tablets and i had a blood test on monday. so i should get the results of that tomorrow. so if everythings ok, i'll be able to go on the treatment soon.
C
Christina
Guest
Paying for Remicade
There is a Remicade assistance program that I am on. I can't remember what it is called right now, but I am sure you could search the internet for it. Or if I find that number I can write you back. The program will pay for the medicine and all the IV items. The program last for 6 months, and then you reapply. Which if your income stays the same then you won't have any problem.
There is a Remicade assistance program that I am on. I can't remember what it is called right now, but I am sure you could search the internet for it. Or if I find that number I can write you back. The program will pay for the medicine and all the IV items. The program last for 6 months, and then you reapply. Which if your income stays the same then you won't have any problem.
Kev
Senior Member
- Location
- Halifax, NS, Canada
Yeah, but there's the question.. how much is enuff to qualify for the program VS too much to qualify - but not enuff to live AND pay for your medicines.. I mean, it seems that the rich are OK (they can afford it), the poverty stricken are covered, (they are sooo poor, they qualify and continue to qualify).. but the in-betweens?
Don't make enuff to afford health insurance OR else are excluded as pre-existing condition... but make more than the minimum poverty level needs, yet if you can't afford health care premiums, how can you afford $6,000 - 7,000 a pop... every 4, 6 or 8 weeks. Am I the only one who sees a big gap in there?
Don't make enuff to afford health insurance OR else are excluded as pre-existing condition... but make more than the minimum poverty level needs, yet if you can't afford health care premiums, how can you afford $6,000 - 7,000 a pop... every 4, 6 or 8 weeks. Am I the only one who sees a big gap in there?
r_cronier said:
Hi and Welcome
I am too late on answering your questions about remicade. Heres my story.
I also (and still have in total 4 fistulas)have painful and draining fistulas. I was on Remicade (one of the first people to have the infusion when it became available in Canada)for a total of 7 yrs. It worked great for me.The infusion would almost stop the draining and pain of the fistulas for about 6 weeks.Then gradually they would start draining untill the 8th week when I would have the infusion again.After that would feel great and then the whole process would start over again.Until about a year ago it just stopped working.So my Gi said I had a chose either surgery(having a stoma)again or Humria .Keep in mind I had setons twice and I think about 4 times I had the fistulas lanced. OUCHHHHH!!!!Talk about pain.Twice without no FREEZING(almost jumped off the chair)And twice with local anethesia(sp?)Dont no which one was worse. My point the little buggers always came back!Now I am trying Humria.Have been for about 3 months now. Side effects my teeth were aching and my hair is still falling out bad.Just now is controlling the drainage from fistulas.Its kinda taking the same course as the Remicade for me any ways. Keep in mind all the meds out there for CD.IBS,IBD,Colitis work different on other people.No two people are a like that I have been in contact with or have heard of. Does this make sense? I know what I am thinking but its just not coming out right (or typing right)Cant think today.
Anyhow if you have any more questions just ask. Ruth also has a good insight on this. Check back on her(and mine) posts on fistulas.
Goodluck Tammy
I
Ilysha
Guest
Hi Richard,
I thought I'd respond to your query about going off and on remicade. I was on remicade for 2 years and had great results. I have moderately severe Crohns. After my second year my husbandand I moved from LA to Lake Tahoe and my stress level decreased greatly and I was feeling great so I go off most of my meds, including Remicade. I was off Remicade for almost a full year, and then I got into a really bad flare that predinsone couldn't fix. After a few days in the hospital I went back on the Remicade and once again had great results. I have been back on it for a year now and get the infusions every 8 weeks. So, if you do have to start and stop I think the odds are decent it will work again. I think it's only after many, many years when stopping and starting could cause a problem.
Good luck to you.
-Ilysha
I thought I'd respond to your query about going off and on remicade. I was on remicade for 2 years and had great results. I have moderately severe Crohns. After my second year my husbandand I moved from LA to Lake Tahoe and my stress level decreased greatly and I was feeling great so I go off most of my meds, including Remicade. I was off Remicade for almost a full year, and then I got into a really bad flare that predinsone couldn't fix. After a few days in the hospital I went back on the Remicade and once again had great results. I have been back on it for a year now and get the infusions every 8 weeks. So, if you do have to start and stop I think the odds are decent it will work again. I think it's only after many, many years when stopping and starting could cause a problem.
Good luck to you.
-Ilysha
Hey everyone. As of today I have had 2 infusions. I have another March 9th. I am on my last week of Prednisone ( Yay ) I have had no symptoms of Crohns as far as pain or anything, but my bowel habits haven't changed nor have my fistulas improved any. I also continue to be overly tired all the time.
I am unhappy with the answers I have been getting from my colo-rectal surgeon regarding my fistulas so I am going to see a new Dr. this Thursday for a second opinion. Thans to everyone that has been responding and I will continue to give updates.
I am unhappy with the answers I have been getting from my colo-rectal surgeon regarding my fistulas so I am going to see a new Dr. this Thursday for a second opinion. Thans to everyone that has been responding and I will continue to give updates.
One thing I am noticing that is getting kind of frustrating. I have had a scalp and facial condition that I believe is related to Crohns, possibly psoriosis? I am going to try and go see a dermatologist next month. But since I have been on Remicade this has gotten much worse. I took a shower before going out last night and I washed my hair with a dandruff shampoo 3 times and scrubbed hard. When I was done, there were no flakes. Now this morning my scalp is very itchy and full of flakes. Anyone else having this problem. I have had my head shaved before and I am considering doing it again to try and get this under control because it is bugging the hell out of me.
Well, I have been off of Remicade for a cpl. of weeks and back on Prednisone. This is mainly due to a rectal abscess and infection and they don't want the Remicade to prolong the infection. I saw my new colo-rectal surgeon again yesterday and he said the abscess that I had ruptured. I am going under the knife this coming Wed. and he is going to open it up and clean it out and put another drain seton in for this one. He is also going to remove, clean out and replace the other two drain setons that I have. He is also going to investigate yet another possible abscess developing. I do like this doctor better than they one who made me feel like a freaking idiot. I would love to sue for malpractice if it wouldn't cause stress, which right now is probably all it would do. Anyway, thats the deal with me right now. I'll let ya know Wed. if I make it out of surgery allright, and if I don't, we'll throw a party on me .. HAHA
Infliximab - Miracle so far
Hi Everyone,
The infliximab infusions were a miracle for me.
I was in hospital for three weeks and didnt respond to anything until the infusion - within three days I was discharged and have been in remission for three weeks.
I had another infusion last week.
As far as I am concearned its a miracle.
Touchwood :lol:
Hi Everyone,
The infliximab infusions were a miracle for me.
I was in hospital for three weeks and didnt respond to anything until the infusion - within three days I was discharged and have been in remission for three weeks.
I had another infusion last week.
As far as I am concearned its a miracle.
Touchwood :lol:
See, this is the type of testamonials I keep reading on Remicade....anyone else get THREE infusions and simply slowly heal up...I'm going only about 4 to 5 times a day tops, whereas it was a dozen or more before, and there's less blood frequency than ever...also feeling slightly better and better, but that's been over the last 9 weeks, not a matter of a couple days....claire1 said:
Anyone else take a couple months to "load" (as the doc calls it) the Remicade?
M
MERF
Guest
I was on Remicade for 6 months and toward the end developed elevated liver functions tests results. I did love the Remicade until that point, however. My energy level and gut symptoms would improve during each infusion. Unfortunately, my liver just couldn't take it. I developed acute hepatitis and ultimately, as confirmed by biopsy auto-immune hepatitis.
Hey everyone... Been awhile since I have been on. Been sick off and on and also been tied up with other things. Anyway, figured I would pop in for a minute and let ya know whats been going on. First, I finally got approved for my disability ( YAY! ) then my colorectal surgeon set me up with a Doctor at Medical College of Georgia and I went to see him. I have a small bowel through on the 25th of this month and have to have a colonoscopy. After that he is going to put me on Humira since the Remicade didn't work. So anyway, that's what has been going on with me. I hope everything has been going fine with you. I will try to pop in a little more often and give an update, especially when I start taking the Humira and let ya know how it's working for me.
Well heck, I knew i had been to this forum before.. LOL But since I had a different email addy I couldn't get my username and p/w info.
If it is o.k. with the admins. then I will just stick with this new acct. since i just posted up to date info. anyway. I tried remembering my old name so i wouldn't have two accts. but my memory is going with age LOL.....
Or, if it's possible to merge my old stuff with this new name then that would be cool too. I wouldn't be such a newbie on here too... LOL