Remicade seems to have stopped working
Question:
yup, sorry, threw it in there because i was on it, but it is not as you say. jeff
> Pred. is not one of the immunomodulators recommended to prevent the
buildup of Remicade antibodies. I am not sure of the others, but I know 6MP, Immuran and Methotrexate are. – Hide quoted text — Show quoted text -> 
mgbio > cd can be in the large colon also. > also, btw, there are a number of immunomodulators that you can take while on > remicade, 6mp is only one of them. i tried it and had really bad reactions. > there is methotrexate (which i am on), prednosone (not the best, was on this > too), cyclosplorine and tacrolimus. been on all of those. i am sure there > are more. > jeff >>Thanks for the interest/information. >>On the topic of my diagnosis, I believe officially I have been >>diagnosed w/CD, but so far it has only affected my large intestine. >>This is where I’m confused – what leads my doc to believe it’s CD if >>the small intestine has not ever been involved? You know what, I know >>it sounds ridiculous, but I’ve asked for this explanation on what >>distinguishes one from the other, and it’s still all Greek to me. >>The only drug I am on for the CD other than the Remicade is Pentasa. >>I have never heard of using a 6MP drug along with it. Dr. has never >>even mentioned it. Do you mean it helps keep the anti-bodies from >>developing DURING a prolonged use of Remicade, or after the use of >>Remicade? >>I am on Pred drops for Uveitis, and a cocktail of >>anti-inflammatory/muscle relaxer/pain killer for back and joint pain. >>Again, just in the few days I have been in here, I have seen all types >>of medications mentioned that I have never been informed about in >>regards to my own treatment. And I was diagnosed 13 years ago. >>This is the second GI I’ve been treated by in this amount of time. I >>purposely sought out a new GI because I did not feel my first one was >>being aggressive or attentive enough with my treatment. My current GI >>is always mentioning other specialists that he is consulting with over >>my case, but again, I’ve never heard of any of the treatment you’ve >>described below. But I can certainly begin to build an arsenal of my >>own information. >>Which IBD do you have? >>JC >>>Hi jc and welcome! So, which do you have, UC or CD? You either have one > or the other and the difference in diagnosis will make a difference in > overall treatment decisions. It sounds like you have Crohn’s Disease of the > large intestine from what you describe. >>>There is no reason why you should not be able to have Remicade again. I > spoke with my GI of this concern due to my long absence of Remicade > treatments and he said it would be no problem that he would do a definitive > short 3 day course of pred. before the infusion to prevent a reaction. > Also, if you are taking Remicade your GI should be using an immunomodulator > such as 6MP, Immuran (Azathropine) or Methotrexate which help to prevent the > anti-bodies from forming which cause a reaction if Remicade is given after a > long interval. If your GI is not doing this, ask him/her why this treatment > is not being given, esp. since he/she knows the dangers of not using this > treatment. What other medications are you on? Good luck! >>>:) mgbio >>>>This is my first post on the ng, so, ‘HELLO.’ >>>>I was diagnosed with UC/CD also in 1992. I enjoyed many years with >>>>little or no symptoms as long as I took my maintenance drug, Pentasa.
Response:
Pred. is not one of the immunomodulators recommended to prevent the buildup of Remicade antibodies. I am not sure of the others, but I know 6MP, Immuran and Methotrexate are. mgbio – Hide quoted text — Show quoted text – > cd can be in the large colon also. > also, btw, there are a number of immunomodulators that you can take while on > remicade, 6mp is only one of them. i tried it and had really bad reactions. > there is methotrexate (which i am on), prednosone (not the best, was on this > too), cyclosplorine and tacrolimus. been on all of those. i am sure there > are more. > jeff >Thanks for the interest/information. >On the topic of my diagnosis, I believe officially I have been >diagnosed w/CD, but so far it has only affected my large intestine. >This is where I’m confused – what leads my doc to believe it’s CD if >the small intestine has not ever been involved? You know what, I know >it sounds ridiculous, but I’ve asked for this explanation on what >distinguishes one from the other, and it’s still all Greek to me. >The only drug I am on for the CD other than the Remicade is Pentasa. >I have never heard of using a 6MP drug along with it. Dr. has never >even mentioned it. Do you mean it helps keep the anti-bodies from >developing DURING a prolonged use of Remicade, or after the use of >Remicade? >I am on Pred drops for Uveitis, and a cocktail of >anti-inflammatory/muscle relaxer/pain killer for back and joint pain. >Again, just in the few days I have been in here, I have seen all types >of medications mentioned that I have never been informed about in >regards to my own treatment. And I was diagnosed 13 years ago. >This is the second GI I’ve been treated by in this amount of time. I >purposely sought out a new GI because I did not feel my first one was >being aggressive or attentive enough with my treatment. My current GI >is always mentioning other specialists that he is consulting with over >my case, but again, I’ve never heard of any of the treatment you’ve >described below. But I can certainly begin to build an arsenal of my >own information. >Which IBD do you have? >JC >>Hi jc and welcome! So, which do you have, UC or CD? You either have one > or the other and the difference in diagnosis will make a difference in > overall treatment decisions. It sounds like you have Crohn’s Disease of the > large intestine from what you describe. >>There is no reason why you should not be able to have Remicade again. I > spoke with my GI of this concern due to my long absence of Remicade > treatments and he said it would be no problem that he would do a definitive > short 3 day course of pred. before the infusion to prevent a reaction. > Also, if you are taking Remicade your GI should be using an immunomodulator > such as 6MP, Immuran (Azathropine) or Methotrexate which help to prevent the > anti-bodies from forming which cause a reaction if Remicade is given after a > long interval. If your GI is not doing this, ask him/her why this treatment > is not being given, esp. since he/she knows the dangers of not using this > treatment. What other medications are you on? Good luck! >>:) mgbio >>>This is my first post on the ng, so, ‘HELLO.’ >>>I was diagnosed with UC/CD also in 1992. I enjoyed many years with >>>little or no symptoms as long as I took my maintenance drug, Pentasa.
Response:
Then you have been diagnosed with Crohn’s Colitis, which is Crohn’s Disease which effects the colon. It is different from UC in several key ways. Just by visual inspection UC is always continuous where CD has skip areas, that is areas of healthy bowel in between areas of diseased bowel. Additionally, UC is limited to the first layer of cells lining the intestinal tract whereas CD can penetrate all cell layers of the intestinal tract. For UC, removal of the bowel and the formation of a pouch from the small intestine that will serve as a colon is considered a cure, this is not true for CD. While many Crohn’s Colitis patients experience long term remissions, colorectal surgeons will rarely do the same procedure for them, instead using a colostomy bag or other similar options for surgery due to the nature of CD. You really should read up on CD. A good place to start is the Crohn’s & Colitis Foundation of America’s web site: http://www.ccfa.org. You can also look at my web site, which was written in easy to understand language and an easy to reference glossary of terminology for the lay person, http://www.skyweb.net/~mgbio/cd/cd.html. Pentasa is one of the basic 5-ASA drugs that is used to reduce inflammation on contact. Since your disease is located in the colon, Pentasa is a good choice as it releases in the small intestine and colon and is very effective when those areas are effected. Unless proper x-ray studies have been done, both CD Scans and upper GI with a small bowel follow through, it may be difficult to know if your small bowel is involved. Your colon may have been so tender and the valve so swollen that a colonoscopy may have been unable to reach into your small intestine. This is what happened to me on my first scope and why the CD diagnosis was missed. The valve was swollen shut and all the damage was on the other side. As for the use of immunomodulators with Remicade, this has been ACCEPTED STANDARD TREATMENT for the last 2 years at least. Why your doctor isn’t using this and hasn’t mentioned it to me is plain bad medicine. GI’s that use Remicade tend to use 6MP or Immuran (they are sister drugs) and Rhumatologists who use Remicade tend to use Methotrexate. The preferences are more based on the familiarity of the drugs within the specialties than their effectiveness. I know that the drugs should be taken while you are on the Remicade. Any further usage should be discussed with a competent physician. I have been on 6MP for several years now unrelated to my Remicade usage. When I first began Remicade in 1999 the necessity of the use of immunomodulators was not known and I was not on it them. I haven’t had Remicade in well over 2 years now. At one point I discussed with my GI what would happen if I needed Remicade again (I need it often for fistulas) and he told me he wouldn’t hesita te to use it, but would insist on a short, 3 day, course of pred. before it was administered [he put it this way is because he knows how much I hate being on pred.]. I have CD, diagnosed in Jan of ‘99. In fact, the anniversary of my dx is next Friday. You can read about my own experiences on my web site by following the link at the bottom of the page or the link below. mgbio CD Class of ‘99 http://www.skyweb.net/~mgbio/cd/cdbattle.html – Hide quoted text — Show quoted text – > Thanks for the interest/information. > On the topic of my diagnosis, I believe officially I have been > diagnosed w/CD, but so far it has only affected my large intestine. > This is where I’m confused – what leads my doc to believe it’s CD if > the small intestine has not ever been involved? You know what, I know > it sounds ridiculous, but I’ve asked for this explanation on what > distinguishes one from the other, and it’s still all Greek to me. > The only drug I am on for the CD other than the Remicade is Pentasa. > I have never heard of using a 6MP drug along with it. Dr. has never > even mentioned it. Do you mean it helps keep the anti-bodies from > developing DURING a prolonged use of Remicade, or after the use of > Remicade? > I am on Pred drops for Uveitis, and a cocktail of > anti-inflammatory/muscle relaxer/pain killer for back and joint pain. > Again, just in the few days I have been in here, I have seen all types > of medications mentioned that I have never been informed about in > regards to my own treatment. And I was diagnosed 13 years ago. > This is the second GI I’ve been treated by in this amount of time. I > purposely sought out a new GI because I did not feel my first one was > being aggressive or attentive enough with my treatment. My current GI > is always mentioning other specialists that he is consulting with over > my case, but again, I’ve never heard of any of the treatment you’ve > described below. But I can certainly begin to build an arsenal of my > own information. > Which IBD do you have? > JC >Hi jc and welcome! So, which do you have, UC or CD? You either have one or the other and the difference in diagnosis will make a difference in overall treatment decisions. It sounds like you have Crohn’s Disease of the large intestine from what you describe. >There is no reason why you should not be able to have Remicade again. I spoke with my GI of this concern due to my long absence of Remicade treatments and he said it would be no problem that he would do a definitive short 3 day course of pred. before the infusion to prevent a reaction. Also, if you are taking Remicade your GI should be using an immunomodulator such as 6MP, Immuran (Azathropine) or Methotrexate which help to prevent the anti-bodies from forming which cause a reaction if Remicade is given after a long interval. If your GI is not doing this, ask him/her why this treatment is not being given, esp. since he/she knows the dangers of not using this treatment. What other medications are you on? Good luck! >:) mgbio >>This is my first post on the ng, so, ‘HELLO.’ >>I was diagnosed with UC/CD also in 1992. I enjoyed many years with >>little or no symptoms as long as I took my maintenance drug, Pentasa.
Response:
cd can be in the large colon also. also, btw, there are a number of immunomodulators that you can take while on remicade, 6mp is only one of them. i tried it and had really bad reactions. there is methotrexate (which i am on), prednosone (not the best, was on this too), cyclosplorine and tacrolimus. been on all of those. i am sure there are more. jeff
– Hide quoted text — Show quoted text -> Thanks for the interest/information. > On the topic of my diagnosis, I believe officially I have been > diagnosed w/CD, but so far it has only affected my large intestine. > This is where I’m confused – what leads my doc to believe it’s CD if > the small intestine has not ever been involved? You know what, I know > it sounds ridiculous, but I’ve asked for this explanation on what > distinguishes one from the other, and it’s still all Greek to me. > The only drug I am on for the CD other than the Remicade is Pentasa. > I have never heard of using a 6MP drug along with it. Dr. has never > even mentioned it. Do you mean it helps keep the anti-bodies from > developing DURING a prolonged use of Remicade, or after the use of > Remicade? > I am on Pred drops for Uveitis, and a cocktail of > anti-inflammatory/muscle relaxer/pain killer for back and joint pain. > Again, just in the few days I have been in here, I have seen all types > of medications mentioned that I have never been informed about in > regards to my own treatment. And I was diagnosed 13 years ago. > This is the second GI I’ve been treated by in this amount of time. I > purposely sought out a new GI because I did not feel my first one was > being aggressive or attentive enough with my treatment. My current GI > is always mentioning other specialists that he is consulting with over > my case, but again, I’ve never heard of any of the treatment you’ve > described below. But I can certainly begin to build an arsenal of my > own information. > Which IBD do you have? > JC >Hi jc and welcome! So, which do you have, UC or CD? You either have one
or the other and the difference in diagnosis will make a difference in overall treatment decisions. It sounds like you have Crohn’s Disease of the large intestine from what you describe. >There is no reason why you should not be able to have Remicade again. I
spoke with my GI of this concern due to my long absence of Remicade treatments and he said it would be no problem that he would do a definitive short 3 day course of pred. before the infusion to prevent a reaction. Also, if you are taking Remicade your GI should be using an immunomodulator such as 6MP, Immuran (Azathropine) or Methotrexate which help to prevent the anti-bodies from forming which cause a reaction if Remicade is given after a long interval. If your GI is not doing this, ask him/her why this treatment is not being given, esp. since he/she knows the dangers of not using this treatment. What other medications are you on? Good luck! – Hide quoted text — Show quoted text ->:) mgbio >> This is my first post on the ng, so, ‘HELLO.’ >> I was diagnosed with UC/CD also in 1992. I enjoyed many years with >> little or no symptoms as long as I took my maintenance drug, Pentasa.
Response:
Thanks for the interest/information. On the topic of my diagnosis, I believe officially I have been diagnosed w/CD, but so far it has only affected my large intestine. This is where I’m confused – what leads my doc to believe it’s CD if the small intestine has not ever been involved? You know what, I know it sounds ridiculous, but I’ve asked for this explanation on what distinguishes one from the other, and it’s still all Greek to me. The only drug I am on for the CD other than the Remicade is Pentasa. I have never heard of using a 6MP drug along with it. Dr. has never even mentioned it. Do you mean it helps keep the anti-bodies from developing DURING a prolonged use of Remicade, or after the use of Remicade? I am on Pred drops for Uveitis, and a cocktail of anti-inflammatory/muscle relaxer/pain killer for back and joint pain. Again, just in the few days I have been in here, I have seen all types of medications mentioned that I have never been informed about in regards to my own treatment. And I was diagnosed 13 years ago. This is the second GI I’ve been treated by in this amount of time. I purposely sought out a new GI because I did not feel my first one was being aggressive or attentive enough with my treatment. My current GI is always mentioning other specialists that he is consulting with over my case, but again, I’ve never heard of any of the treatment you’ve described below. But I can certainly begin to build an arsenal of my own information. Which IBD do you have? JC – Hide quoted text — Show quoted text – >Hi jc and welcome! So, which do you have, UC or CD? You either have one or the other and the difference in diagnosis will make a difference in overall treatment decisions. It sounds like you have Crohn’s Disease of the large intestine from what you describe. >There is no reason why you should not be able to have Remicade again. I spoke with my GI of this concern due to my long absence of Remicade treatments and he said it would be no problem that he would do a definitive short 3 day course of pred. before the infusion to prevent a reaction. Also, if you are taking Remicade your GI should be using an immunomodulator such as 6MP, Immuran (Azathropine) or Methotrexate which help to prevent the anti-bodies from forming which cause a reaction if Remicade is given after a long interval. If your GI is not doing this, ask him/her why this treatment is not being given, esp. since he/she knows the dangers of not using this treatment. What other medications are you on? Good luck! >:) mgbio > This is my first post on the ng, so, ‘HELLO.’ > I was diagnosed with UC/CD also in 1992. I enjoyed many years with > little or no symptoms as long as I took my maintenance drug, Pentasa.
Response:
hey, anytime jc. that is what i am here for. i see an extremely knowledgeable opthamologist on autoimmunities. he used to be a captain in the army, an army eye doc. he is quite successful with some of the lasic things and also does many occular related operations. he is very knowledgeable about meds and what they do in the eye and how they work together and so forth. with uveitis, you want a really good opthamologist in your court. not only are these conditions dangerous if not treated or not treated properly, there are other potental issues (don’t remember the names he used) using pred drops all the time. things that follow infection that can cause blindness. this eye thing is noth’in to mess with. i get a thourough occular exam every 4 months, we review my meds, how they are working, sometimes experiment with others. the restatis was an experiment that worked out really well. normally rxed for people, especially those with autoimmunity, with dry eyes. since cyclosplorine is an immunomodulator, it locally controls the inflammation on an ongoing basis without the complications that pred or voltaren may cause. i really encourage you to discuss these meds and issues with your opthamologist…it is a serious matter. i don’t know in fact the restasis would work for uveitis. me using it for episcleritis is an "off the books" use to begin with. but due to, like i said, the cyclosplorine emushion, it works well. my dry eye issue is minor compared to other things, but i certainly don’t have that anymore! so happy you could use the info. don’t be bashfull and write to me with any questions. i am here to learn also. be well, jeff (also considering the name "toxic" instead of "human medicine cabinet")
– Hide quoted text — Show quoted text -> Well, I hope you don’t mind if I print out this post, look into all > the meds you have mentioned, and take the info to my doctors. I have > not heard of the majority of the drugs you speak of in ref. to the eye > problems. It has been just straight up Pred drops for me. > I took Vioxx for years without any problems, and now my Rheumotologist > has me on a cocktail of Mobic, Darvocet and Soma. Sometime it works > like a charm, and other days, like I took nothing. She gave me a > cortisone shot last week to see if we could kick the joint pains out. > It hasn’t made much of a difference. > Thought the nick "Toxic" seemed appropriate considering all of the > drugs coursing through my system. I sometimes wonder if it’s simply > the buildup of all of the different meds that complicates matters. > Again, who knows. > Thanks for sharing your information – I hope to gleen alot of useful > information from this group – and hopefully offer up some myself. > JC >jc, >i have not been told that after 12 weeks, if you don’t have a remicade >treatment, it’s "good bye". i get infusions every 12 weeks. g.i. thinks i >am doing fine. >i have issues with similar things. my eye inflammation thing is >episcleritis, similar to uveitus but inflammation is in different part of >the eye. pred works for it, so does a few other immunomodulators, my >remicade and methotrexate don’t touch it. i have an attack to the eye >problem tho. i use restatsis on an ongoing basis (cyclosplorine emulshion) >and i have pred drops (maybe a alternative to the oral pred, eh?) and >voltaren as back-ups if it decides to flare anyway, and it does that from >time to time. i also have a diolator for the pain if it flares too badly. >so 4 meds for the eye thing alone. the pred and voltaren work on two >different ends of the spectrum, so i find that if i start them at the onset >of a flare, the flare stops dead in it’s tracks! wow, it only took my >opthamologist and i about 3 years to figure this one out! >what you call "peripheral" pain is likely the same as mine and many others, >called "enteropathic arthritis". again, the remicade and mtx have some >effect, however there are times it gets bad. my biggest issue is the >connective tissue at my achillies tendons. elbow tendons are bad too. been >on various nsaid, some have nasty g.i. reactions, some are okay. been on >vioxx and cellebrex. currently started lodine and had great success. it is >generic and has no issues with cardiovascular. been around since 1991 so >there is quite a history. study from texas done showed 60% fewer g.i. >issues as compared to vioxx. that is the reason my doc and i discussed it >and decided to give it a try. everyone is different, so discuss with you >doc (well, you’ll have to because it is rx…hee, hee). >hope you find answes my friend, >jeff (the human medicine cabinet) >> This is my first post on the ng, so, ‘HELLO.’ >> I was diagnosed with UC/CD also in 1992. I enjoyed many years with >> little or no symptoms as long as I took my maintenance drug, Pentasa. >> But in 2001 the party was over, and I have been battling flares ever >> since. They actually began as Uveitis, and by the time my >> Opthomologist was about to suggest oral Pred to get it under control, >> I was going into the UC/CD flares. The pred got a good handle on >> both, but as we all know, this drug is a double-edged sword. >> After expressing concern about over-use and side effects of the Pred >> w/ my GI (we brought me up and down on dosages countless times over >> the course of a couple years) I finally conceded to Remicade. >> I have taken the Remicade for the better part of 2004, and while it >> has been an absolute dream for my UC/CD, it has done nothing for the >> Uveitits that I continue to battle, and more recently the ‘peripheral >> arthritis’ that I seemed to have developed. >> Anyone else ever feel like it’s all just too much to handle sometimes? >> I told my GI that I was concerned about being on Remicade for an >> extended period of time. He said he would explore all my options, but >> that if I did not take another Remicade treatment w/in 12 weeks, that >> there would be no going back. That the body begins to develop some >> sort of resistance to it after this period of time. >> So, I either take it forever, or say goodbye to it forever? Has >> anyone else been told of this? >> Rod, I have no explanation of why, but this may be the reasoning >> behind your body’s seeming resistance to it. I wish I could provide >> you with a more complete explaination – but hey, after 13 years of >> this, I still can’t figure out why my doc says I have CD and not UC >> (only my large intestine involved so far). >> There are too many mysteries and variables with this disease. It is >> so very individual. What worked yesterday isn’t touching it today. >> It’s a constant balancing act. A never-ending game of hide-n-seek. >> I’m on so many medications that I don’t know how my poor liver is even >> keeping up. I try to take a reasonable variety of nutritional >> supplements, but that can just make matters murkier. >> Mostly, I’m tired of being exhausted all of the time. Of hobbling >> around like a geriatric patient. I’m a 35 y/o single mother of a 10 >> y/o boy, working full time and going to school. I don’t have time to >> screw around with this damned disease. So frustrating. >> I know I went off on a rant, for that I apologize. I go through my >> day-to-day life surrounded by people who don’t have a clue what it >> takes for me to just to get out of bed in the morning. To get through >> an average day. My heart truly goes out to everyone in here who >> suffers from this insidious disease. I would encourage everyone to >> get involved with any sort of political push toward funding and >> research. My grandfather died of colon cancer. My mom had a >> colostomy and reversal last year. I don’t know what the future holds >> for me, but I would hope to make a better way for my son, should he >> develop this disease, and all children out there who are at risk for >> UC/CD. >> Thanks for listening. >> JC >> >I was originally diagnosed with UC and then UC/CD. After treating it >with >> >nearly everything I could imagine. The only thin that could keep me from >> >flaring was 60mg of prednisone. This was causing all kinds of side >effects. >> >My doctor got me onto Remicade and I went into remission within days. I >was >> >able to get completely off the prednisone. For the past 10 months I have >> >been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. >> >Over the past week to two week the I have began to flare up again. I >have >> >tried to get it under control with Rowasa but it does not seem to help. >If >> >anything, it has just gotten worse over the two weeks. I called my >doctor >> >today and he wants me to go back onto 40mg of prednisone to try and nock >> >this back in the butt (pun intended). >> >I would like to know if others have had similar problems with the >Remicade >> >seeming to just stop working. What is the next line of attack for me? I >> >can’t stay on prednisone. I already have arthritis from the year of 60mg >a >> >day prior to the Remicade. I have heard that some people develop an >> >immunity to the Remicade and it stops working as well. I have heard that >> >some people have been put onto treatments every 6 weeks rather than 8. >> >Any info would be appreciated. >> >Thanks, >> >Rod (IBD –
… read more »
Response:
Hi jc and welcome! So, which do you have, UC or CD? You either have one or the other and the difference in diagnosis will make a difference in overall treatment decisions. It sounds like you have Crohn’s Disease of the large intestine from what you describe. There is no reason why you should not be able to have Remicade again. I spoke with my GI of this concern due to my long absence of Remicade treatments and he said it would be no problem that he would do a definitive short 3 day course of pred. before the infusion to prevent a reaction. Also, if you are taking Remicade your GI should be using an immunomodulator such as 6MP, Immuran (Azathropine) or Methotrexate which help to prevent the anti-bodies from forming which cause a reaction if Remicade is given after a long interval. If your GI is not doing this, ask him/her why this treatment is not being given, esp. since he/she knows the dangers of not using this treatment. What other medications are you on? Good luck! mgbio – Hide quoted text — Show quoted text – > This is my first post on the ng, so, ‘HELLO.’ > I was diagnosed with UC/CD also in 1992. I enjoyed many years with > little or no symptoms as long as I took my maintenance drug, Pentasa. > But in 2001 the party was over, and I have been battling flares ever > since. They actually began as Uveitis, and by the time my > Opthomologist was about to suggest oral Pred to get it under control, > I was going into the UC/CD flares. The pred got a good handle on > both, but as we all know, this drug is a double-edged sword. > After expressing concern about over-use and side effects of the Pred > w/ my GI (we brought me up and down on dosages countless times over > the course of a couple years) I finally conceded to Remicade. > I have taken the Remicade for the better part of 2004, and while it > has been an absolute dream for my UC/CD, it has done nothing for the > Uveitits that I continue to battle, and more recently the ‘peripheral > arthritis’ that I seemed to have developed. > Anyone else ever feel like it’s all just too much to handle sometimes? > I told my GI that I was concerned about being on Remicade for an > extended period of time. He said he would explore all my options, but > that if I did not take another Remicade treatment w/in 12 weeks, that > there would be no going back. That the body begins to develop some > sort of resistance to it after this period of time. > So, I either take it forever, or say goodbye to it forever? Has > anyone else been told of this? > Rod, I have no explanation of why, but this may be the reasoning > behind your body’s seeming resistance to it. I wish I could provide > you with a more complete explaination – but hey, after 13 years of > this, I still can’t figure out why my doc says I have CD and not UC > (only my large intestine involved so far). > There are too many mysteries and variables with this disease. It is > so very individual. What worked yesterday isn’t touching it today. > It’s a constant balancing act. A never-ending game of hide-n-seek. > I’m on so many medications that I don’t know how my poor liver is even > keeping up. I try to take a reasonable variety of nutritional > supplements, but that can just make matters murkier. > Mostly, I’m tired of being exhausted all of the time. Of hobbling > around like a geriatric patient. I’m a 35 y/o single mother of a 10 > y/o boy, working full time and going to school. I don’t have time to > screw around with this damned disease. So frustrating. > I know I went off on a rant, for that I apologize. I go through my > day-to-day life surrounded by people who don’t have a clue what it > takes for me to just to get out of bed in the morning. To get through > an average day. My heart truly goes out to everyone in here who > suffers from this insidious disease. I would encourage everyone to > get involved with any sort of political push toward funding and > research. My grandfather died of colon cancer. My mom had a > colostomy and reversal last year. I don’t know what the future holds > for me, but I would hope to make a better way for my son, should he > develop this disease, and all children out there who are at risk for > UC/CD. > Thanks for listening. > JC >I was originally diagnosed with UC and then UC/CD. After treating it with >nearly everything I could imagine. The only thin that could keep me from >flaring was 60mg of prednisone. This was causing all kinds of side effects. >My doctor got me onto Remicade and I went into remission within days. I was >able to get completely off the prednisone. For the past 10 months I have >been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. >Over the past week to two week the I have began to flare up again. I have >tried to get it under control with Rowasa but it does not seem to help. If >anything, it has just gotten worse over the two weeks. I called my doctor >today and he wants me to go back onto 40mg of prednisone to try and nock >this back in the butt (pun intended). >I would like to know if others have had similar problems with the Remicade >seeming to just stop working. What is the next line of attack for me? I >can’t stay on prednisone. I already have arthritis from the year of 60mg a >day prior to the Remicade. I have heard that some people develop an >immunity to the Remicade and it stops working as well. I have heard that >some people have been put onto treatments every 6 weeks rather than 8. >Any info would be appreciated. >Thanks, >Rod (IBD – ‘03)
Response:
Well, I hope you don’t mind if I print out this post, look into all the meds you have mentioned, and take the info to my doctors. I have not heard of the majority of the drugs you speak of in ref. to the eye problems. It has been just straight up Pred drops for me. I took Vioxx for years without any problems, and now my Rheumotologist has me on a cocktail of Mobic, Darvocet and Soma. Sometime it works like a charm, and other days, like I took nothing. She gave me a cortisone shot last week to see if we could kick the joint pains out. It hasn’t made much of a difference. Thought the nick "Toxic" seemed appropriate considering all of the drugs coursing through my system. I sometimes wonder if it’s simply the buildup of all of the different meds that complicates matters. Again, who knows. Thanks for sharing your information – I hope to gleen alot of useful information from this group – and hopefully offer up some myself. JC – Hide quoted text — Show quoted text – >jc, >i have not been told that after 12 weeks, if you don’t have a remicade >treatment, it’s "good bye". i get infusions every 12 weeks. g.i. thinks i >am doing fine. >i have issues with similar things. my eye inflammation thing is >episcleritis, similar to uveitus but inflammation is in different part of >the eye. pred works for it, so does a few other immunomodulators, my >remicade and methotrexate don’t touch it. i have an attack to the eye >problem tho. i use restatsis on an ongoing basis (cyclosplorine emulshion) >and i have pred drops (maybe a alternative to the oral pred, eh?) and >voltaren as back-ups if it decides to flare anyway, and it does that from >time to time. i also have a diolator for the pain if it flares too badly. >so 4 meds for the eye thing alone. the pred and voltaren work on two >different ends of the spectrum, so i find that if i start them at the onset >of a flare, the flare stops dead in it’s tracks! wow, it only took my >opthamologist and i about 3 years to figure this one out! >what you call "peripheral" pain is likely the same as mine and many others, >called "enteropathic arthritis". again, the remicade and mtx have some >effect, however there are times it gets bad. my biggest issue is the >connective tissue at my achillies tendons. elbow tendons are bad too. been >on various nsaid, some have nasty g.i. reactions, some are okay. been on >vioxx and cellebrex. currently started lodine and had great success. it is >generic and has no issues with cardiovascular. been around since 1991 so >there is quite a history. study from texas done showed 60% fewer g.i. >issues as compared to vioxx. that is the reason my doc and i discussed it >and decided to give it a try. everyone is different, so discuss with you >doc (well, you’ll have to because it is rx…hee, hee). >hope you find answes my friend, >jeff (the human medicine cabinet) > This is my first post on the ng, so, ‘HELLO.’ > I was diagnosed with UC/CD also in 1992. I enjoyed many years with > little or no symptoms as long as I took my maintenance drug, Pentasa. > But in 2001 the party was over, and I have been battling flares ever > since. They actually began as Uveitis, and by the time my > Opthomologist was about to suggest oral Pred to get it under control, > I was going into the UC/CD flares. The pred got a good handle on > both, but as we all know, this drug is a double-edged sword. > After expressing concern about over-use and side effects of the Pred > w/ my GI (we brought me up and down on dosages countless times over > the course of a couple years) I finally conceded to Remicade. > I have taken the Remicade for the better part of 2004, and while it > has been an absolute dream for my UC/CD, it has done nothing for the > Uveitits that I continue to battle, and more recently the ‘peripheral > arthritis’ that I seemed to have developed. > Anyone else ever feel like it’s all just too much to handle sometimes? > I told my GI that I was concerned about being on Remicade for an > extended period of time. He said he would explore all my options, but > that if I did not take another Remicade treatment w/in 12 weeks, that > there would be no going back. That the body begins to develop some > sort of resistance to it after this period of time. > So, I either take it forever, or say goodbye to it forever? Has > anyone else been told of this? > Rod, I have no explanation of why, but this may be the reasoning > behind your body’s seeming resistance to it. I wish I could provide > you with a more complete explaination – but hey, after 13 years of > this, I still can’t figure out why my doc says I have CD and not UC > (only my large intestine involved so far). > There are too many mysteries and variables with this disease. It is > so very individual. What worked yesterday isn’t touching it today. > It’s a constant balancing act. A never-ending game of hide-n-seek. > I’m on so many medications that I don’t know how my poor liver is even > keeping up. I try to take a reasonable variety of nutritional > supplements, but that can just make matters murkier. > Mostly, I’m tired of being exhausted all of the time. Of hobbling > around like a geriatric patient. I’m a 35 y/o single mother of a 10 > y/o boy, working full time and going to school. I don’t have time to > screw around with this damned disease. So frustrating. > I know I went off on a rant, for that I apologize. I go through my > day-to-day life surrounded by people who don’t have a clue what it > takes for me to just to get out of bed in the morning. To get through > an average day. My heart truly goes out to everyone in here who > suffers from this insidious disease. I would encourage everyone to > get involved with any sort of political push toward funding and > research. My grandfather died of colon cancer. My mom had a > colostomy and reversal last year. I don’t know what the future holds > for me, but I would hope to make a better way for my son, should he > develop this disease, and all children out there who are at risk for > UC/CD. > Thanks for listening. > JC > >I was originally diagnosed with UC and then UC/CD. After treating it >with > >nearly everything I could imagine. The only thin that could keep me from > >flaring was 60mg of prednisone. This was causing all kinds of side >effects. > >My doctor got me onto Remicade and I went into remission within days. I >was > >able to get completely off the prednisone. For the past 10 months I have > >been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. > >Over the past week to two week the I have began to flare up again. I >have > >tried to get it under control with Rowasa but it does not seem to help. >If > >anything, it has just gotten worse over the two weeks. I called my >doctor > >today and he wants me to go back onto 40mg of prednisone to try and nock > >this back in the butt (pun intended). > >I would like to know if others have had similar problems with the >Remicade > >seeming to just stop working. What is the next line of attack for me? I > >can’t stay on prednisone. I already have arthritis from the year of 60mg >a > >day prior to the Remicade. I have heard that some people develop an > >immunity to the Remicade and it stops working as well. I have heard that > >some people have been put onto treatments every 6 weeks rather than 8. > >Any info would be appreciated. > >Thanks, > >Rod (IBD – ‘03)
Response:
This is my first post on the ng, so, ‘HELLO.’ I was diagnosed with UC/CD also in 1992. I enjoyed many years with little or no symptoms as long as I took my maintenance drug, Pentasa. But in 2001 the party was over, and I have been battling flares ever since. They actually began as Uveitis, and by the time my Opthomologist was about to suggest oral Pred to get it under control, I was going into the UC/CD flares. The pred got a good handle on both, but as we all know, this drug is a double-edged sword. After expressing concern about over-use and side effects of the Pred w/ my GI (we brought me up and down on dosages countless times over the course of a couple years) I finally conceded to Remicade. I have taken the Remicade for the better part of 2004, and while it has been an absolute dream for my UC/CD, it has done nothing for the Uveitits that I continue to battle, and more recently the ‘peripheral arthritis’ that I seemed to have developed. Anyone else ever feel like it’s all just too much to handle sometimes? I told my GI that I was concerned about being on Remicade for an extended period of time. He said he would explore all my options, but that if I did not take another Remicade treatment w/in 12 weeks, that there would be no going back. That the body begins to develop some sort of resistance to it after this period of time. So, I either take it forever, or say goodbye to it forever? Has anyone else been told of this? Rod, I have no explanation of why, but this may be the reasoning behind your body’s seeming resistance to it. I wish I could provide you with a more complete explaination – but hey, after 13 years of this, I still can’t figure out why my doc says I have CD and not UC (only my large intestine involved so far). There are too many mysteries and variables with this disease. It is so very individual. What worked yesterday isn’t touching it today. It’s a constant balancing act. A never-ending game of hide-n-seek. I’m on so many medications that I don’t know how my poor liver is even keeping up. I try to take a reasonable variety of nutritional supplements, but that can just make matters murkier. Mostly, I’m tired of being exhausted all of the time. Of hobbling around like a geriatric patient. I’m a 35 y/o single mother of a 10 y/o boy, working full time and going to school. I don’t have time to screw around with this damned disease. So frustrating. I know I went off on a rant, for that I apologize. I go through my day-to-day life surrounded by people who don’t have a clue what it takes for me to just to get out of bed in the morning. To get through an average day. My heart truly goes out to everyone in here who suffers from this insidious disease. I would encourage everyone to get involved with any sort of political push toward funding and research. My grandfather died of colon cancer. My mom had a colostomy and reversal last year. I don’t know what the future holds for me, but I would hope to make a better way for my son, should he develop this disease, and all children out there who are at risk for UC/CD. Thanks for listening. JC – Hide quoted text — Show quoted text – >I was originally diagnosed with UC and then UC/CD. After treating it with >nearly everything I could imagine. The only thin that could keep me from >flaring was 60mg of prednisone. This was causing all kinds of side effects. >My doctor got me onto Remicade and I went into remission within days. I was >able to get completely off the prednisone. For the past 10 months I have >been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. >Over the past week to two week the I have began to flare up again. I have >tried to get it under control with Rowasa but it does not seem to help. If >anything, it has just gotten worse over the two weeks. I called my doctor >today and he wants me to go back onto 40mg of prednisone to try and nock >this back in the butt (pun intended). >I would like to know if others have had similar problems with the Remicade >seeming to just stop working. What is the next line of attack for me? I >can’t stay on prednisone. I already have arthritis from the year of 60mg a >day prior to the Remicade. I have heard that some people develop an >immunity to the Remicade and it stops working as well. I have heard that >some people have been put onto treatments every 6 weeks rather than 8. >Any info would be appreciated. >Thanks, >Rod (IBD – ‘03)
Response:
jc, i have not been told that after 12 weeks, if you don’t have a remicade treatment, it’s "good bye". i get infusions every 12 weeks. g.i. thinks i am doing fine. i have issues with similar things. my eye inflammation thing is episcleritis, similar to uveitus but inflammation is in different part of the eye. pred works for it, so does a few other immunomodulators, my remicade and methotrexate don’t touch it. i have an attack to the eye problem tho. i use restatsis on an ongoing basis (cyclosplorine emulshion) and i have pred drops (maybe a alternative to the oral pred, eh?) and voltaren as back-ups if it decides to flare anyway, and it does that from time to time. i also have a diolator for the pain if it flares too badly. so 4 meds for the eye thing alone. the pred and voltaren work on two different ends of the spectrum, so i find that if i start them at the onset of a flare, the flare stops dead in it’s tracks! wow, it only took my opthamologist and i about 3 years to figure this one out! what you call "peripheral" pain is likely the same as mine and many others, called "enteropathic arthritis". again, the remicade and mtx have some effect, however there are times it gets bad. my biggest issue is the connective tissue at my achillies tendons. elbow tendons are bad too. been on various nsaid, some have nasty g.i. reactions, some are okay. been on vioxx and cellebrex. currently started lodine and had great success. it is generic and has no issues with cardiovascular. been around since 1991 so there is quite a history. study from texas done showed 60% fewer g.i. issues as compared to vioxx. that is the reason my doc and i discussed it and decided to give it a try. everyone is different, so discuss with you doc (well, you’ll have to because it is rx…hee, hee). hope you find answes my friend, jeff (the human medicine cabinet)
– Hide quoted text — Show quoted text -> This is my first post on the ng, so, ‘HELLO.’ > I was diagnosed with UC/CD also in 1992. I enjoyed many years with > little or no symptoms as long as I took my maintenance drug, Pentasa. > But in 2001 the party was over, and I have been battling flares ever > since. They actually began as Uveitis, and by the time my > Opthomologist was about to suggest oral Pred to get it under control, > I was going into the UC/CD flares. The pred got a good handle on > both, but as we all know, this drug is a double-edged sword. > After expressing concern about over-use and side effects of the Pred > w/ my GI (we brought me up and down on dosages countless times over > the course of a couple years) I finally conceded to Remicade. > I have taken the Remicade for the better part of 2004, and while it > has been an absolute dream for my UC/CD, it has done nothing for the > Uveitits that I continue to battle, and more recently the ‘peripheral > arthritis’ that I seemed to have developed. > Anyone else ever feel like it’s all just too much to handle sometimes? > I told my GI that I was concerned about being on Remicade for an > extended period of time. He said he would explore all my options, but > that if I did not take another Remicade treatment w/in 12 weeks, that > there would be no going back. That the body begins to develop some > sort of resistance to it after this period of time. > So, I either take it forever, or say goodbye to it forever? Has > anyone else been told of this? > Rod, I have no explanation of why, but this may be the reasoning > behind your body’s seeming resistance to it. I wish I could provide > you with a more complete explaination – but hey, after 13 years of > this, I still can’t figure out why my doc says I have CD and not UC > (only my large intestine involved so far). > There are too many mysteries and variables with this disease. It is > so very individual. What worked yesterday isn’t touching it today. > It’s a constant balancing act. A never-ending game of hide-n-seek. > I’m on so many medications that I don’t know how my poor liver is even > keeping up. I try to take a reasonable variety of nutritional > supplements, but that can just make matters murkier. > Mostly, I’m tired of being exhausted all of the time. Of hobbling > around like a geriatric patient. I’m a 35 y/o single mother of a 10 > y/o boy, working full time and going to school. I don’t have time to > screw around with this damned disease. So frustrating. > I know I went off on a rant, for that I apologize. I go through my > day-to-day life surrounded by people who don’t have a clue what it > takes for me to just to get out of bed in the morning. To get through > an average day. My heart truly goes out to everyone in here who > suffers from this insidious disease. I would encourage everyone to > get involved with any sort of political push toward funding and > research. My grandfather died of colon cancer. My mom had a > colostomy and reversal last year. I don’t know what the future holds > for me, but I would hope to make a better way for my son, should he > develop this disease, and all children out there who are at risk for > UC/CD. > Thanks for listening. > JC >I was originally diagnosed with UC and then UC/CD. After treating it with >nearly everything I could imagine. The only thin that could keep me from >flaring was 60mg of prednisone. This was causing all kinds of side effects. >My doctor got me onto Remicade and I went into remission within days. I was >able to get completely off the prednisone. For the past 10 months I have >been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. >Over the past week to two week the I have began to flare up again. I have >tried to get it under control with Rowasa but it does not seem to help. If >anything, it has just gotten worse over the two weeks. I called my doctor >today and he wants me to go back onto 40mg of prednisone to try and nock >this back in the butt (pun intended). >I would like to know if others have had similar problems with the Remicade >seeming to just stop working. What is the next line of attack for me? I >can’t stay on prednisone. I already have arthritis from the year of 60mg a >day prior to the Remicade. I have heard that some people develop an >immunity to the Remicade and it stops working as well. I have heard that >some people have been put onto treatments every 6 weeks rather than 8. >Any info would be appreciated. >Thanks, >Rod (IBD – ‘03)
Response:
Kathi use the site that Gary mentions above, the German reader. I used it for a few years until Bellsouth allowed me to get access. http://www.individual.net It is free and I never had a problem. UM MOM Susan
– Hide quoted text — Show quoted text -> Hi Rebecca- > Being in "AOL Hell" as Gary so aptly put it, I am not able to see > most new messages on the newsgroups. You are the proud recipient of my > first Google-Usenet posting! Aren’t you thrilled?? > To answer your question…our wonderful doc is consulting with my > doc up here (and me) about my on-going treatment. One of the options > we most recently discussed included INCREASING the Cipro – something my > doc up here was interested in trying, but our doc suggested shortening > the span between Remicade infusions first. I guess if these don’t > take, we will try Cipro 750 mg. BID. I’m hoping the Remicade will do > the trick. > About lunch, I would also love to do that! I will call you (in > advance) of my next trip down "South." > Take care, > Kathi
Response:
Hi Rebecca- Being in "AOL Hell" as Gary so aptly put it, I am not able to see most new messages on the newsgroups. You are the proud recipient of my first Google-Usenet posting! Aren’t you thrilled?? To answer your question…our wonderful doc is consulting with my doc up here (and me) about my on-going treatment. One of the options we most recently discussed included INCREASING the Cipro – something my doc up here was interested in trying, but our doc suggested shortening the span between Remicade infusions first. I guess if these don’t take, we will try Cipro 750 mg. BID. I’m hoping the Remicade will do the trick. About lunch, I would also love to do that! I will call you (in advance) of my next trip down "South." Take care, Kathi
Response:
Hi Rod, Happy New Year! Yes, there are cases where the body builds a tolerance to the Remicade, but it is very difficult to measure. My doc was going to try it, but that was canceled when he found that one must be off the Remicade for a period of time before they can test for the antibody. Currently, I’m receiving Remicade, 10 mgs per kg every six weeks, as the lower dose and every 8 week schedule were not doing the trick. I just had my first 6 week infusion two days before Christmas…I’ll let you know if it "takes." FYI, I’m also on 100 mg. Azathioprine and 500 mg. Cipro bid. (I’m allergic to 5 ASA’s.) I understand the Pred business…has your doc considered Entecort? I was on Pred for a while this past year, but now my doc uses Entecort. Hope this info is helpful and that you are feeling well soon. Get/stay healthy, Kathi
Response:
Hi Kathi: Just wondering if you and our wonderful doc have discussed going off the Cipro? — He took me off at my last appointment (perhaps to see how the meth works alone). Rebecca who would love to do lunch again if you’re available
– Hide quoted text — Show quoted text -> Hi Rod, > Happy New Year! Yes, there are cases where the body builds a tolerance > to > the Remicade, but it is very difficult to measure. My doc was going to > try it, > but that was canceled when he found that one must be off the Remicade for > a > period of time before they can test for the antibody. > Currently, I’m receiving Remicade, 10 mgs per kg every six weeks, as > the > lower dose and every 8 week schedule were not doing the trick. I just had > my > first 6 week infusion two days before Christmas…I’ll let you know if it > "takes." FYI, I’m also on 100 mg. Azathioprine and 500 mg. Cipro bid. > (I’m > allergic to 5 ASA’s.) I understand the Pred business…has your doc > considered > Entecort? I was on Pred for a while this past year, but now my doc uses > Entecort. Hope this info is helpful and that you are feeling well soon. > Get/stay healthy, > Kathi
Response:
I also take caliber daily also.
– Hide quoted text — Show quoted text -> Hey Rod, I’ve been on Remicade since Jan. 04. I get my treatments every > 7-8 weeks. This last one seemed not to help as much as the ones before. > I’m hoping it’s just a bad spell but I go for my next one next week. I’ve > also started having arthritis pain for the past 4 weeks. Never really had > it before like this and it moves from joint to joint. I never know what > part of me it going to hurt, knees, ankles, wrists, fingers, shoulders. > I’ve wondered if that is another sign that the remicade is not working. > BTW, I’m also taking Imuran 150mg and now Celebrex 400 mg each day. > Lynette > I was originally diagnosed with UC and then UC/CD. After treating it > with > nearly everything I could imagine. The only thin that could keep me from > flaring was 60mg of prednisone. This was causing all kinds of side > effects. > My doctor got me onto Remicade and I went into remission within days. I > was > able to get completely off the prednisone. For the past 10 months I have > been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. > Over the past week to two week the I have began to flare up again. I > have > tried to get it under control with Rowasa but it does not seem to help. > If > anything, it has just gotten worse over the two weeks. I called my > doctor > today and he wants me to go back onto 40mg of prednisone to try and nock > this back in the butt (pun intended). > I would like to know if others have had similar problems with the > Remicade > seeming to just stop working. What is the next line of attack for me? I > can’t stay on prednisone. I already have arthritis from the year of 60mg > a > day prior to the Remicade. I have heard that some people develop an > immunity to the Remicade and it stops working as well. I have heard that > some people have been put onto treatments every 6 weeks rather than 8. > Any info would be appreciated. > Thanks, > Rod (IBD – ‘03)
Response:
I meant to say Celebrex. – Hide quoted text — Show quoted text – >I also take caliber daily also. > Hey Rod, I’ve been on Remicade since Jan. 04. I get my treatments every > 7-8 weeks. This last one seemed not to help as much as the ones before. > I’m hoping it’s just a bad spell but I go for my next one next week. > I’ve > also started having arthritis pain for the past 4 weeks. Never really > had > it before like this and it moves from joint to joint. I never know what > part of me it going to hurt, knees, ankles, wrists, fingers, shoulders. > I’ve wondered if that is another sign that the remicade is not working. > BTW, I’m also taking Imuran 150mg and now Celebrex 400 mg each day. > Lynette >> I was originally diagnosed with UC and then UC/CD. After treating it >> with >> nearly everything I could imagine. The only thin that could keep me >> from >> flaring was 60mg of prednisone. This was causing all kinds of side > effects. >> My doctor got me onto Remicade and I went into remission within days. I > was >> able to get completely off the prednisone. For the past 10 months I >> have >> been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. >> Over the past week to two week the I have began to flare up again. I >> have >> tried to get it under control with Rowasa but it does not seem to help. > If >> anything, it has just gotten worse over the two weeks. I called my >> doctor >> today and he wants me to go back onto 40mg of prednisone to try and nock >> this back in the butt (pun intended). >> I would like to know if others have had similar problems with the >> Remicade >> seeming to just stop working. What is the next line of attack for me? >> I >> can’t stay on prednisone. I already have arthritis from the year of >> 60mg > a >> day prior to the Remicade. I have heard that some people develop an >> immunity to the Remicade and it stops working as well. I have heard >> that >> some people have been put onto treatments every 6 weeks rather than 8. >> Any info would be appreciated. >> Thanks, >> Rod (IBD – ‘03)
Response:
Hey Rod, I’ve been on Remicade since Jan. 04. I get my treatments every 7-8 weeks. This last one seemed not to help as much as the ones before. I’m hoping it’s just a bad spell but I go for my next one next week. I’ve also started having arthritis pain for the past 4 weeks. Never really had it before like this and it moves from joint to joint. I never know what part of me it going to hurt, knees, ankles, wrists, fingers, shoulders. I’ve wondered if that is another sign that the remicade is not working. BTW, I’m also taking Imuran 150mg and now Celebrex 400 mg each day. Lynette – Hide quoted text — Show quoted text – > I was originally diagnosed with UC and then UC/CD. After treating it with > nearly everything I could imagine. The only thin that could keep me from > flaring was 60mg of prednisone. This was causing all kinds of side effects. > My doctor got me onto Remicade and I went into remission within days. I was > able to get completely off the prednisone. For the past 10 months I have > been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. > Over the past week to two week the I have began to flare up again. I have > tried to get it under control with Rowasa but it does not seem to help. If > anything, it has just gotten worse over the two weeks. I called my doctor > today and he wants me to go back onto 40mg of prednisone to try and nock > this back in the butt (pun intended). > I would like to know if others have had similar problems with the Remicade > seeming to just stop working. What is the next line of attack for me? I > can’t stay on prednisone. I already have arthritis from the year of 60mg a > day prior to the Remicade. I have heard that some people develop an > immunity to the Remicade and it stops working as well. I have heard that > some people have been put onto treatments every 6 weeks rather than 8. > Any info would be appreciated. > Thanks, > Rod (IBD – ‘03)
Response:
Rod, As Jeff and Mary said, it can lose its effectiveness over time. I saw Dr.Cohen at the University of Chicago Hospital and he told me that he wanted me on Methotrexate prior to Remicade treatments so I will not build up an immunity to the Remicade. I had tried Remicade in the past but this was the first indication that you could become immune to the effectiveness of the drug. Something to consider. Tony – Hide quoted text — Show quoted text – >I was originally diagnosed with UC and then UC/CD. After treating it with >nearly everything I could imagine. The only thin that could keep me from >flaring was 60mg of prednisone. This was causing all kinds of side >effects. > My doctor got me onto Remicade and I went into remission within days. I > was able to get completely off the prednisone. For the past 10 months I > have been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. > Over the past week to two week the I have began to flare up again. I have > tried to get it under control with Rowasa but it does not seem to help. > If anything, it has just gotten worse over the two weeks. I called my > doctor today and he wants me to go back onto 40mg of prednisone to try and > nock this back in the butt (pun intended). > I would like to know if others have had similar problems with the Remicade > seeming to just stop working. What is the next line of attack for me? I > can’t stay on prednisone. I already have arthritis from the year of 60mg > a day prior to the Remicade. I have heard that some people develop an > immunity to the Remicade and it stops working as well. I have heard that > some people have been put onto treatments every 6 weeks rather than 8. > Any info would be appreciated. > Thanks, > Rod (IBD – ‘03)
Response:
Rod, Yes, Remicade can lose effectiveness for some people over time. There are things they can try. Up the dose is one and getting more frequent doses as you mentioned. Possible try Methotrexate instead of the 6MP is a possibility. I find that every immunomodulator works differently, some work great, some don’t work at all then some cause really wicked side effects. Depends on the person. Jeff (the human medicine cabinet) – Hide quoted text — Show quoted text – > I was originally diagnosed with UC and then UC/CD. After treating it with > nearly everything I could imagine. The only thin that could keep me from > flaring was 60mg of prednisone. This was causing all kinds of side effects. > My doctor got me onto Remicade and I went into remission within days. I was > able to get completely off the prednisone. For the past 10 months I have > been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. > Over the past week to two week the I have began to flare up again. I have > tried to get it under control with Rowasa but it does not seem to help. If > anything, it has just gotten worse over the two weeks. I called my doctor > today and he wants me to go back onto 40mg of prednisone to try and nock > this back in the butt (pun intended). > I would like to know if others have had similar problems with the Remicade > seeming to just stop working. What is the next line of attack for me? I > can’t stay on prednisone. I already have arthritis from the year of 60mg a > day prior to the Remicade. I have heard that some people develop an > immunity to the Remicade and it stops working as well. I have heard that > some people have been put onto treatments every 6 weeks rather than 8. > Any info would be appreciated. > Thanks, > Rod (IBD – ‘03)
Response:
I was originally diagnosed with UC and then UC/CD. After treating it with nearly everything I could imagine. The only thin that could keep me from flaring was 60mg of prednisone. This was causing all kinds of side effects. My doctor got me onto Remicade and I went into remission within days. I was able to get completely off the prednisone. For the past 10 months I have been on Remicade every 8 weeks with 75mg of 6mp & 9 colazal a day. Over the past week to two week the I have began to flare up again. I have tried to get it under control with Rowasa but it does not seem to help. If anything, it has just gotten worse over the two weeks. I called my doctor today and he wants me to go back onto 40mg of prednisone to try and nock this back in the butt (pun intended). I would like to know if others have had similar problems with the Remicade seeming to just stop working. What is the next line of attack for me? I can’t stay on prednisone. I already have arthritis from the year of 60mg a day prior to the Remicade. I have heard that some people develop an immunity to the Remicade and it stops working as well. I have heard that some people have been put onto treatments every 6 weeks rather than 8. Any info would be appreciated. Thanks, Rod (IBD – ‘03)
Response:
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