Remicade treatment (2 years and above)
Question:
oh, duh…i thought it was something i said. lol. we are doing fine. i get my 12 week remicade on the 17th at the hospital locally here. mtx is down to 10mg/week, think i will leave it there, don’t want to push it. i have felt well enough finally to work out. been doing weights and tread mill. i started walking last year, but it got too cold ya know. lost some weight. have a few more pounds to go. trying to get into my pre-p.g. size pants…lol. talk to ya later. jeff
– Hide quoted text — Show quoted text -> Jeff it’s in the subject line! ;-) Remicade treatment 2 years and above. > It has been asked in this thread. How you doing these days? And Mary? > Haven’t heard from either of you for a while so I hope all is well. I am > still doing good though got a lot of stress and body reacted a lot yesterday > but doing better today. I like this going out and eating out and doing new > things that I haven’t done in years. Drop me a email when you have time and > fill me in.. UM MOM Susan > and what question was that susan? i must be missing something here. > jeff > > Email Centocort about this and they will give you a response about the > > question. They are pretty good in responding to this kind of thing. If > you > > would prefer I will for the group. Start a new thread to me so I don’t > miss > > it and I will if you would like. Put exactly all the questions you want > as > > I am not on Remicade so that would help with a decent response. Also if > you > > are using it for cd, uc and/or arthritis. UM MOM Susan > > > hi mel, > > > u of m is in my back pocket. my new g.i. is local and she is good, so > is > > my > > > internist. by in my back pocket, i mean i elect health insurance that > > > covers u of m. i can go back there anytime, don’t need a referal. > for > > the > > > routine stuff, remicade, rx’s, blood tests and so forth, my local g.i. > > along > > > with my internist well do fine. they both know each other. my new > g.i. > > has > > > all my records and an excellent referral/med history summary from dr h > > (doc > > > z’s understudy). he was there along with some others from g.i. when i > was > > > in the hospital 2 years ago. he understands my case really well. so > no, > > i > > > have not abanded u of m, i have them on stand by, i know what you > mean. > > > jeff > > > > > my new gi wants me to stay with the 12 week plan for now. > > > > >i am the only patient she has with the remicade/mtx combo. > > > > Are you still going to umich—and using dr. z? In my mind, that > group > > > saved > > > > my son’s life—he used Dr. N, still the only doctor I’ve met that > > really > > > > listened to a patient and was convinced to try an approach that was > > > counter to > > > > his original idea > > > > Mel.
Response:
Jeff it’s in the subject line! ;-) Remicade treatment 2 years and above. It has been asked in this thread. How you doing these days? And Mary? Haven’t heard from either of you for a while so I hope all is well. I am still doing good though got a lot of stress and body reacted a lot yesterday but doing better today. I like this going out and eating out and doing new things that I haven’t done in years. Drop me a email when you have time and fill me in.. UM MOM Susan – Hide quoted text — Show quoted text -> and what question was that susan? i must be missing something here. > jeff > Email Centocort about this and they will give you a response about the > question. They are pretty good in responding to this kind of thing. If > you > would prefer I will for the group. Start a new thread to me so I don’t > miss > it and I will if you would like. Put exactly all the questions you want > as > I am not on Remicade so that would help with a decent response. Also if > you > are using it for cd, uc and/or arthritis. UM MOM Susan > > hi mel, > > u of m is in my back pocket. my new g.i. is local and she is good, so > is > my > > internist. by in my back pocket, i mean i elect health insurance that > > covers u of m. i can go back there anytime, don’t need a referal. for > the > > routine stuff, remicade, rx’s, blood tests and so forth, my local g.i. > along > > with my internist well do fine. they both know each other. my new g.i. > has > > all my records and an excellent referral/med history summary from dr h > (doc > > z’s understudy). he was there along with some others from g.i. when i > was > > in the hospital 2 years ago. he understands my case really well. so > no, > i > > have not abanded u of m, i have them on stand by, i know what you mean. > > jeff > > > > my new gi wants me to stay with the 12 week plan for now. > > > >i am the only patient she has with the remicade/mtx combo. > > > Are you still going to umich—and using dr. z? In my mind, that > group > > saved > > > my son’s life—he used Dr. N, still the only doctor I’ve met that > really > > > listened to a patient and was convinced to try an approach that was > > counter to > > > his original idea > > > Mel.
Response:
and what question was that susan? i must be missing something here. jeff
– Hide quoted text — Show quoted text -> Email Centocort about this and they will give you a response about the > question. They are pretty good in responding to this kind of thing. If you > would prefer I will for the group. Start a new thread to me so I don’t miss > it and I will if you would like. Put exactly all the questions you want as > I am not on Remicade so that would help with a decent response. Also if you > are using it for cd, uc and/or arthritis. UM MOM Susan > hi mel, > u of m is in my back pocket. my new g.i. is local and she is good, so is > my > internist. by in my back pocket, i mean i elect health insurance that > covers u of m. i can go back there anytime, don’t need a referal. for > the > routine stuff, remicade, rx’s, blood tests and so forth, my local g.i. > along > with my internist well do fine. they both know each other. my new g.i. > has > all my records and an excellent referral/med history summary from dr h > (doc > z’s understudy). he was there along with some others from g.i. when i was > in the hospital 2 years ago. he understands my case really well. so no, > i > have not abanded u of m, i have them on stand by, i know what you mean. > jeff > > > my new gi wants me to stay with the 12 week plan for now. > > >i am the only patient she has with the remicade/mtx combo. > > Are you still going to umich—and using dr. z? In my mind, that group > saved > > my son’s life—he used Dr. N, still the only doctor I’ve met that > really > > listened to a patient and was convinced to try an approach that was > counter to > > his original idea > > Mel.
Response:
Email Centocort about this and they will give you a response about the question. They are pretty good in responding to this kind of thing. If you would prefer I will for the group. Start a new thread to me so I don’t miss it and I will if you would like. Put exactly all the questions you want as I am not on Remicade so that would help with a decent response. Also if you are using it for cd, uc and/or arthritis. UM MOM Susan – Hide quoted text — Show quoted text -> hi mel, > u of m is in my back pocket. my new g.i. is local and she is good, so is my > internist. by in my back pocket, i mean i elect health insurance that > covers u of m. i can go back there anytime, don’t need a referal. for the > routine stuff, remicade, rx’s, blood tests and so forth, my local g.i. along > with my internist well do fine. they both know each other. my new g.i. has > all my records and an excellent referral/med history summary from dr h (doc > z’s understudy). he was there along with some others from g.i. when i was > in the hospital 2 years ago. he understands my case really well. so no, i > have not abanded u of m, i have them on stand by, i know what you mean. > jeff > > my new gi wants me to stay with the 12 week plan for now. > >i am the only patient she has with the remicade/mtx combo. > Are you still going to umich—and using dr. z? In my mind, that group > saved > my son’s life—he used Dr. N, still the only doctor I’ve met that really > listened to a patient and was convinced to try an approach that was > counter to > his original idea > Mel.
Response:
> my new gi wants me to stay with the 12 week plan for now. >i am the only patient she has with the remicade/mtx combo.
Are you still going to umich—and using dr. z? In my mind, that group saved my son’s life—he used Dr. N, still the only doctor I’ve met that really listened to a patient and was convinced to try an approach that was counter to his original idea Mel.
Response:
hi mel, u of m is in my back pocket. my new g.i. is local and she is good, so is my internist. by in my back pocket, i mean i elect health insurance that covers u of m. i can go back there anytime, don’t need a referal. for the routine stuff, remicade, rx’s, blood tests and so forth, my local g.i. along with my internist well do fine. they both know each other. my new g.i. has all my records and an excellent referral/med history summary from dr h (doc z’s understudy). he was there along with some others from g.i. when i was in the hospital 2 years ago. he understands my case really well. so no, i have not abanded u of m, i have them on stand by, i know what you mean. jeff
– Hide quoted text — Show quoted text -> my new gi wants me to stay with the 12 week plan for now. >i am the only patient she has with the remicade/mtx combo. > Are you still going to umich—and using dr. z? In my mind, that group saved > my son’s life—he used Dr. N, still the only doctor I’ve met that really > listened to a patient and was convinced to try an approach that was counter to > his original idea > Mel.
Response:
i have been on remicade 2 yrs, 3 months. i also have been on mtx for a year. i have stretched my remicade out from 8 weeks to 12 weeks successfully and have reduced my mtx from 20mg/week to 10 mg/week. my cd and pg sx’s have remained in remission. i wanted to stop the remicade and just stay on mtx. my new gi wants me to stay with the 12 week plan for now. i am the only patient she has with the remicade/mtx combo. most of her patients are the remicade/imuran combo, so she wants to study me for a while. i am one of those that have very bad reactions to just about every immunomodulator you can think of. i have tried dang near all of them. the mtx was about the last shot i had and i lucked out. it was rough to start, but i got used to it and i have been able to reduce my doseage to a minimum. jeff
– Hide quoted text — Show quoted text -> Hi all, > I have had CD for the last 15 years and have been on Remicade for 1.5 > years. Remicade worked great for me and I just feel wonderful. I am > currently having a remicade shot every 12 weeks and am really worried > about its effects wearing off. > Is there anyone out there who was treated with remicade for more than > 2 years? What is the longest period experienced? is it definit that > Remicade wears off after a while? > Can anyone share his long-term treatment with Remicade? > Regards, > L.
Response:
absolutely not. my gi wants me to continue. jeff
– Hide quoted text — Show quoted text ->Hi all, >I have had CD for the last 15 years and have been on Remicade for 1.5 >years. Remicade worked great for me and I just feel wonderful. I am >currently having a remicade shot every 12 weeks and am really worried >about its effects wearing off. >Is there anyone out there who was treated with remicade for more than >2 years? What is the longest period experienced? is it definit that >Remicade wears off after a while? >Can anyone share his long-term treatment with Remicade? >Regards, >L. > My son has been on Remicade for 5 years and it still works very well. he’s > also on imuran. He has an infusion every 7 weeks (from the start it only > lasted 7 weeks) but his doctor is also wary about future consequences. A > phamacologist I know recommended he stay on this regimen as long as it works. > His feeling was that doctors get defensive about prescribing drugs for periods > longer than the FDA study period. > From what I’ve read, it is probably a bad idea to try to stretch out the > infusions since some studies have shown that returning to Remicade after an > hiatus can dampen its effectiveness. I tried to get other people involved in > this discussion about a month ago, but not that many responded. Has anybody > been told they must stop the infusions even though they’re still effective? > Mel
Response:
>Hi all, >I have had CD for the last 15 years and have been on Remicade for 1.5 >years. Remicade worked great for me and I just feel wonderful. I am >currently having a remicade shot every 12 weeks and am really worried >about its effects wearing off. >Is there anyone out there who was treated with remicade for more than >2 years? What is the longest period experienced? is it definit that >Remicade wears off after a while? >Can anyone share his long-term treatment with Remicade? >Regards, >L.
My son has been on Remicade for 5 years and it still works very well. he’s also on imuran. He has an infusion every 7 weeks (from the start it only lasted 7 weeks) but his doctor is also wary about future consequences. A phamacologist I know recommended he stay on this regimen as long as it works. His feeling was that doctors get defensive about prescribing drugs for periods longer than the FDA study period. From what I’ve read, it is probably a bad idea to try to stretch out the infusions since some studies have shown that returning to Remicade after an hiatus can dampen its effectiveness. I tried to get other people involved in this discussion about a month ago, but not that many responded. Has anybody been told they must stop the infusions even though they’re still effective? Mel
Response:
Hi all, I have had CD for the last 15 years and have been on Remicade for 1.5 years. Remicade worked great for me and I just feel wonderful. I am currently having a remicade shot every 12 weeks and am really worried about its effects wearing off. Is there anyone out there who was treated with remicade for more than 2 years? What is the longest period experienced? is it definit that Remicade wears off after a while? Can anyone share his long-term treatment with Remicade? Regards, L.
Response:
I’m also interested in hearing if remicade stops working after 2 or more years. I’ve been on it for 2 years with methotrexate and I felt in the last 6 months that it’s not working as well. After the first 4 infusions of remicade I did achieve a remission but for only 16 weeks. Since symptoms returned I kept getting the remicades. It’s been 2 years now. I have read of people gaining remissions with remicade, then be maintained with immunosuppressive meds, or other meds, but I read alot of info on IBD message boards and it’s 1 out of 10 who achieve the remission. I hope to hear from others who have had remicade 2 yrs or longer who have achieved remission. I’d like to learn what they did. So here’s my story. 6 months ago I felt not much relief from the treatment, such as no longer having formed stools hardly ever. Mostly a loose muddy stool and some nights up to 6 watery ones at night. The burning in the gut, the spasms, the gas, the flatulence all have been worse the past 6 months. So this is what I did. I have been learning from doctors and found hundreds of articles written by doctors talking about IBD being a fungal (yeast) component of crohn’s and colitis, often not treated in traditional gastroenterology. Type in mycotoxins and crohn’s disease in any web search or type in the word fungalbionics. You will learn that indeed mycotoxins which is fungal toxins do indeed produce illness. Also you can go to a search engine by a Dr. Joe Mercola at www.mercola.com and type in crohn’s and mycotoxins and read ifo there. From doing these searches you’ll find a lot of material written by doctors who know the signifcance of why it helps to treat crohn’s with an anti fungal diet and antifungal drug or natural anti fungal. Read, read, read. If you look for it, you’ll find it like I did. If anyone wants links to the information, I have some saved on my computer. There long drawn out URL’s take too much time to type in so many here. Email me and I’ll forward it to you. Now doctors are asking doctors that know about this at www.medscape.com what to do for their colitis or crohn’s patients who are sick and not responding to drugs. If you listen to the live radio broadcast at www.knowthecause.com you’ll be able to hear doctors discussing what I’m talking about here. Or visit the chat room there or forum message boards to find out more info. Back to my story: So since I knew remicade and MTX were not working as well, I told the gastro 6 months ago I felt the treatment not working as good. He prescribed the antispasmotic drugs which did nothing to help ease the pain or spasms so I sought out a naturopathic doctor who has experience using anti fungal treatment, got the treatment, still on the treatment which does not interfere with remicade or other immunosuppressant or GI drugs or other drugs, and it’s been 5 weeks. I hardly have any symptoms at all. I can feel the difference in my gut. I am beginning to see formation to my stools again and have very little gas and no burning pain in the gut. Part of the treatment is eating an anti fungal diet(no grains, no refined sugar) for 30 days. Symptoms should subside, mine have and it’s been 5 weeks.(20 days only). The anti fungal(yeast treatment) treatment I am getting kills yeast on contact. It’s enzymes and probiotics that digest yeast cell walls and yeast inner cell contents, therefore there is no die off, no worsening of symptoms reaction with it. You will notice how better you feel within 30 days, then you can add small amount of carbs(grains) again if you are also on anti fungals. Also avoid or limit dairy or fried foods, according to what you tolerate. Usually with remicade and immunosuppressant drugs a person can develop the ability to tolerate much more foods they couldn’t before. For the last 7 days I have not needed any antispasmotic drug. THANK GOD! I feel so much better. That’s my experience. There’s probably not a whole lot of people who know that treating crohn’s with antifungals, and anti fungal diet does help because this information is just been out a few years. Only the doctors that have heard about it and checked it out, or who had time to hear about it and time to read the research and references about it, use it in their practice, are they are seeing their patients get better, not just for crohn’s and colitis, but for diabetes, nervous system disorders, obesity, fibromyalgia, arthritis, allergies, and many others as you’ll read about if you do the searches on mycotoxins and each of those diseases. .
Response:
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