Alternative Medication vs Remicade

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dawinner
Regular Member


Date Joined Apr 2010
Total Posts : 29
   Posted 4/7/2010 8:19 PM (GMT -7)   
Hi, I got diagnosed with Crohn's in Feb of 2010. I am a 21 year old male. I was given Prednisone and Pentasa but now I have been told that they are not working for me and after an emergency room experience and a 2nd CT scan 3 weeks ago iv been told that the inflammation has spread further into the small intestine and that they reccomend for me to take Remicade and Imuran together. In addition to this I was told by someone about the Macrobiotic diet around 2 weeks ago and I started that diet and started feeling much better after that and I am still feeling good. I wanted to know if any of you have tried any alternative medication or diets because I am quite worried about starting Remicade due to the risks of developing infections and so on. and my doctors think that is the way to go because they do not believe that a macrobiotic diet can actually help reduce my inflammation even though it has reduced my symptoms even though I have been feeling fine for the last 2 weeks. I am currently on 15mg of Prednisone and tapering. My doctor told me to stop my Pentasa 2 weeks ago since apparently it is not helping. I also took my first dose of Imuran today. Any thoughts or advice would be greatly appreciated.
 

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 4/7/2010 9:21 PM (GMT -7)   
I tried remicade and Imuran and was allergic to one of them. I found diet helped a lot but had a hard time sticking to it.

I did chinese herbs and had great success but they ended up finding cancer (I believe it was the auto immune supressants I'd been given over the last ten years), and I had to have surgery and ended with an ileosotmy.

Yes, try different things and find what works for you. Good luck and hope you are feeling better soon.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy


kmfdm
Regular Member


Date Joined Jun 2008
Total Posts : 78
   Posted 4/7/2010 9:50 PM (GMT -7)   
I would like to have any information about diets when it comes to Crohns'.  I have been to Chinese accupressure, in which aided me highly regarding the pain.  I have been to a naturopathic practioner that also helped.  I am currently on Humira,  every two weeks I administer a shot s/c and I was on Remicade before.  As for anyone out there that wants to discuss fistulas,  I am hoping to get a thread on how other people deal with them and how the doctors are approaching them.

kmfdm
Regular Member


Date Joined Jun 2008
Total Posts : 78
   Posted 4/7/2010 10:01 PM (GMT -7)   
Did they find any abcesses when they did the CT? I was in the hospital for 8 months and put on TPN for 4 months. They found abcesses the size of golf balls in three different parts of my intestines. Everyone that has this disease is different. You have to be your own Doctor, we are the only ones that know what we are going through. Keep a journal of everything that you eat, everything that makes you better etc....keep in touch

dawinner
Regular Member


Date Joined Apr 2010
Total Posts : 29
   Posted 4/7/2010 10:04 PM (GMT -7)   
Thanks for your reply, I am in a situation where I want to stick to the Macrobiotic Diet and give it time to do its thing and to allow my body to heal itself naturally which is what the principle of the diet is but the problem is my doctor is telling me that since my inflammation has gotten more extensive he wants to be proactive about the treatment and start Remicade as soon as possible because not doing so would place me at a greater risk for complications. I also cannot really follow the principles of the diet according to them because they want me to bolster my nuritional status by adding a lot of high calorie foods and supplements like Ensure. This obviously would not comply with the Macrobiotic diet since it does not allow refined sugar which Ensure has, it also restricts quite a lot of other foods which the docs feel would not be conducive to my situation because they feel it is very important for me to gain weight. The only reason I feel like I want to stick to the diet is because I have been pretty much symptom free for the last 10 days since I started the diet and I have read a lot of success stories with this diet and Crohn's disease. The docs did say however that is is possible to be symptom free even when you have such extensive inflammation in your intestines so I dont know, im very confused at the moment. I have started the paperwork and processes to start Remicade hopefully soon but I feel as if im not really being given a choice.

dawinner
Regular Member


Date Joined Apr 2010
Total Posts : 29
   Posted 4/7/2010 10:06 PM (GMT -7)   
kmdfm, yes in the 2nd CT scan which was done 3 weeks ago they did find a small abcess and they gave me cipro and flagyll for 2 weeks to treat that. After my checkup today though and a physical exam my doc says he feels that the abcess is not there anymore.

kmfdm
Regular Member


Date Joined Jun 2008
Total Posts : 78
   Posted 4/7/2010 10:12 PM (GMT -7)   
That makes me smile that your abcess is not there anymore.  I believe that it has alot to do with attitude and your support system.  Exercise helps and Humira has aided me in the last year.  Take everything into account and use your own judgement when it comes to your 'own' disease, we are all different.  Sounds like you have a great attitude. If you would ever like to chat-let me know.

kmfdm
Regular Member


Date Joined Jun 2008
Total Posts : 78
   Posted 4/7/2010 10:23 PM (GMT -7)   
If you ever want to ask any questions, ask away. I am 35 years old and got diagnosed at 14 years of age. I have studied it, including all the biology, environmental aspects etc...there are so many different variations of this disease that make it almost, to each their own.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/8/2010 4:48 AM (GMT -7)   
Remicade has helped my husband immensely - it got him out of the hospital facing certain surgery and a long road to recovery, to back home, and returning to normal nutritional status. It has kept him this way now for 2 years (knock no wood).

Do you consider yourself in remission with the diet? Has the doc done a colonoscopy with biopsy to confirm that? The reason I ask is that sometimes diets can help manage symptoms, but not address the underlying inflammation, and chronic inflammation can have some bad results, cancer being one of them. Perhaps you can get a colonoscopy or other diagnostic tests from your doc, and if your scope is clean, perhaps you can just maintain with meds from the mesalamine family and diet. If the scope shows active inflammation, I'd opt for remicade. Yes, there are risks with remicade, but chronic inflammation is in most likelyhood worse than the risks on remicade.

Good luck.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 4/8/2010 5:08 AM (GMT -7)   
Although you are feeling better, stick to your meds and try out the Remicade.  The diet might be helping you but it is not healing you.  The reason you might be feeling better is becuase the meds have kicked in and are starting to heal you.  You are on some powerful meds so it would make sense that you should feel better.  Just remember, because you feel better doesn't mean you are better.  Never go off meds and never assume you are better.  Let the test tell you how you are.
I am glad that you are feeling better. 
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily, Loperamide HCL - 2mg every other day


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/8/2010 6:26 AM (GMT -7)   
I agree with last few posters. Diets and meds should be considered as complimentary of eachother. I learned the hard way what no meds can do, and believe me you don't want to learn the way I did. Good luck to you! JMHO
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 4/8/2010 7:05 AM (GMT -7)   
Everyone is different..There is no research that one or the other works or hurts more in the long run. Whatever works for you, keep trying.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


dawinner
Regular Member


Date Joined Apr 2010
Total Posts : 29
   Posted 4/8/2010 8:54 AM (GMT -7)   
Thank you all for your replies, I guess I will have to start on the Remicade then but I hope I dont have to stay on it for years and years like some people unfortunately have here because I feel that then the chances of you getting other diseases and infections because of long term usage is greater? Am I right? Tsitodawg, what is the Remistart program? Is that in the U.S because I live in Canada. Aoccc, how serious was your problem when you got diagnosed? I wish I would have an option like you to go on a diet and get completely recovered but apparently my inflammation is too extensive now for me to keep waiting for a diet to work. Hey PV, yes I mean i do feel like i am on remission since i am having almost no symptoms for 2 weeks now but no I have not had a colonoscopy since Jan 2010 which is close to the time I got diagnosed.I basically have had 2 CT scans. One was in DEC 2009 when they were still trying to diagnose me and then the second one was in MARCH 2010 when I had to go to the emergency for severe pain. So the last actual medical exam I have had was this CT scan in MARCH 2010. My docs are comparing the 2 CT scans and that is where their sense of urgency is coming from because they are saying from december til march the inflammation has progressed into more of the small bowel and they want to stop this from happening further. By the way I have never had diarrhea as a symptom. It has always just been pain and fatigue and earlier before I got diagnosed it used to be a mild fever every night. These days however since the last 2 weeks I have almost no pain,completely normal bowel movements as I always have had and my energy levels are fine too and no fever of course either.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/8/2010 10:01 AM (GMT -7)   
Actually it is not a given that if you are on remicade that you get more infections. Yes, some people get some respiratory infections. My husband has been on remicade for 2 years, and hasn't had any respiratory infections, and is not sick all the time. it's given him his normal life back. He does take precautions - washes his hands frequently, and stays away from sick people. But on the whole, other than feeling fatigued and flu like for a day after the infusion (and this is every 8 weeks), he's normal.

Yes, the meds can have some scary side effects - and unfortunately there are no predictors that can tell you whether you will suffer from those side effects. When my husband had to make this choice, it was either surgery (and the known consequences - bags, recovery, etc) or try remicade and accept the possible consequences of it. We decided to try remicade, and it has given him his life back, and I hope he can be on it for a long time.

Remicade is not a med that is for episodic use - because your body can build up antibodies to it, and you can get some bad reactions if you are exposed to remicade once your body has built up antibodies to it. Most docs recommend once every 8 weeks ongoing therapy with remicade for as long as it works for you. I highly recommend just staying on the remicade, because you don't want to exhaust your medical treatment options. Yes, there are options like Humira and Cimzia that you can go to, if you develop antibodies to the remicade, but not all anti-tnf agents work as well for everyone. So, if Remicade works for you, I recommend staying on it.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


dawinner
Regular Member


Date Joined Apr 2010
Total Posts : 29
   Posted 4/8/2010 10:23 AM (GMT -7)   
Thanks I see what you mean, so it is kind of like a long term maintenance therapy then. But what do you think about a scenario like if lets say it was to put you into remission after 6 months or a year or so and you have colonoscopies or CT scans that show that your inflammation is greatly reduced or gone then maybe you can get off the Remicade and then try to maintain your remission using the various diets and stuff? Because as tri girl said she thinks that her cancer was due to the immunosuppreseants like Remicade that she had been taking for 10 years which is an awfully long time and I guess would increase your chances to developing some of the more serious side effects like cancer and so on. Of course I understand it is hard to predict what side effect you will or wont get but I feel like usgae for years and years might make it more likely. It is a difficult dilemma, once again thanks for your input.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/8/2010 11:50 AM (GMT -7)   
Just fyi it could very well be the Prednisone that has caused you to feel better not necessarily the diet. Thats why I said you should always consider the diet and meds to be considered as complimentary of eachother. The diet will help to quiet the symptoms, but the meds will be there to treat the inflammation that can occur on a microscopic level without you even knowing it. Thats what happened to me. I decided I didn't need to take medications. While I was busy getting on with my life, the Crohns was still in there doing its damage on a microscopic level until I became completely obstructed and had to have emergency surgery. Just don't want anyone else to suffer like I did as it also took longer to get my disease back under control afterwards too. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

dawinner
Regular Member


Date Joined Apr 2010
Total Posts : 29
   Posted 4/8/2010 1:08 PM (GMT -7)   
True, I understand. Yes the plan is for the moment to start the Imuran and Remicade along with tapering off the Prednisone. I already took my first dose of Imuran yesterday and the Remicade procedure is still under the works so I should be able to get started in a few weeks. Hopefully everything works out well. Once you are in remission with Remicade though, do they take you off it or do they kind of have to keep giving it to you for a long time? Or is that a decision made from case to case depending on tests that they would do like a colonoscopy or another CT scan to see if the inflammation has gotten better or is gone?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/8/2010 1:26 PM (GMT -7)   
As PV mentioned earlier Remicade is a med to continue until it no longer works for you. Many have had it work for years (I know of someone who took it for about 5 years) for them. If you stop it, then try to restart it later you could have problems because you can develop antibodies to it. You know since you have started Imuran maybe you should ask your doc if you can just give that some time to see if it works for you or not before going on to the Remicade. Imuran can take up to 3 mos to reach full efficacy, but if you are on the Prednisone for awhile that would help till the Imuran kicks in. Imuran is a maintence med, and we have many members here who have been on it or its sister med 6mp for 10-12 years.

But you should consider meds to be for life. We have a chronic and incurable bowel disease that can do serious damage if not treated properly. I hope you know that I am just trying to share what my 35 years with the disease has taught me. Yes, we are all different, but our disease is a serious and chronic disease with no cure at this time. Hugs and Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 4/8/2010 3:14 PM (GMT -7)   
i was in your similar situation a year ago, just do the remicade and the diet at the same time
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


Laughing Willow
Regular Member


Date Joined Oct 2008
Total Posts : 69
   Posted 4/8/2010 4:31 PM (GMT -7)   
I've been on Remicade since April 2008 and SCD (99.9% strict) since July 2009. I've been doing exceptionally well, but have periodic cramping episodes likely due to scar tissue formed during the healing process. Currently my twice yearly bloodwork reveals no signs of the disease.
 
My GI doc just two weeks suggested that if my condition remains unchanged, then in another year we can have a serious talk about stopping the Remicade treatments. His belief is that since I am young (36), he doesn't want me on a drug for life if it can be helped. This is all his idea. He said he would do a scope first and see if there are any indications of inflammation. It will definitely present me with quite a choice to make. I have a lot of confidence in the SCD and would be willing to put it to a real test and see how I do without a maintenance drug. On the other hand, I believe Remicade is a pretty safe drug to use long term.
 
My advice to you dawinner: use diet and medication to complement each other and wait until you've enjoyed a long term remission before deciding whether or not to test a med free treatment option.

dawinner
Regular Member


Date Joined Apr 2010
Total Posts : 29
   Posted 4/8/2010 10:06 PM (GMT -7)   
Thanks everyone for your input, nanners maybe I will try asking my doc about just sticking to Imuran for a while before starting the Remicade, I took my 2nd dose of Imuran today. As for Prednisone I started at 30 mg in February and now I am at 15 mg and told to taper it off by 5 mg every 2 weeks so I will be on that for more than a month still before it gets to 0. Another problem that I feel I will have with Remicade is that I won't know how well it is working for me as far as the symptoms are concerned because at the moment for the last 2 weeks I am almost 100% symptom free so even tho the Remicade could decrease my inflammation I wouldn't know that since at the moment I am already feeling fine. So im guessing the doctors would do some kind of periodic scoping after a few months of remicade or something to see if the actual inflammation has decreased? Because hopefully if I continue to feel like this it will be hard to judge based on my symptoms how well the Remicade is working.

Catasmom
Regular Member


Date Joined Sep 2009
Total Posts : 54
   Posted 4/9/2010 4:11 AM (GMT -7)   
dawinner, I see no one mentioned Enteral Nutrition, and you are trying to stay away from side effects of Remicade. The same day the GI was telling me we had to place my daughter on Remicade, that there was no other way, I read about enteral nutrition. We did that, with total backing from the GI, beacuse it is clinicaly proven to work for many cronies. It is also the first line of treatment in Great Britain, France and Japan, and dor some reason it is not used here, although it was used in the 60's. It is solwly having a comeback with GIs, it is being promoted in Gi conferences. The problem is Docs aren't taught about it.

Prednisone and 6MP were not working for my daughter, but enteral nutrition did. You should at least give it a try. It is not magical, it does not work for all, but it does for a great %.

I found out through a book: Beat Cron's! Getting to Remission with Enteral Nutrition by Margaret Oppenheimer.
Let me know if you are interested, and I'll share more. I don't want to overwhelm you here.
There is also another member "writer" who knows a lot about it.

Stay in touch.
Mom of a 12 year old girl diagnosed on Oct. 2007.
did 6 weeks of Total enteral nutrition with Splash E028 and Vital Jr. (also tied Peptamen) (1900 cal. a day). Eating normally for since Thanksgiving 2009... supplementing with 3 boxes of E028 Splash. Symptom free! Also on Prednisone (5 mg every other day)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: VSL#3/ Omega 3: Coromega/ Vitamin D 2000 IU daily
Warm healing wishes from the Miami beaches....


dawinner
Regular Member


Date Joined Apr 2010
Total Posts : 29
   Posted 4/10/2010 7:23 PM (GMT -7)   
Hmm I see, i will look into eternal nutrition too, yea thats the problem, doctors don't know too much about the various diet options and if they do, then they dont really support them or even like to talk about them as a viable option, Thanks

wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 4/10/2010 8:26 PM (GMT -7)   
Up until recently I was on Remicaide and I try to follow a Macrobiotic diet. I do believe that your diet can heal your body but will )at least in my case anyway) take a long time, maybe years. So you could start the Remicaide and stick to Macrobiotics. I had to stop taking it because my body built up antibodies to it so I just started Humira.

You are right on about most doctors not knowing about different diet options. I don't necessarily think it's their fault, it's just the way they are taught. But a low residue diet of white bread and processed foods and refined sugar? How in the world are you going to get nourishment for your body to heal? That's why I love Macrobiotics and I am trying to follow it as closely as I can. I don't eat meat or dairy but i do eat fish. Cutting out dairy was big for me, when I have eaten it since then I can feel the difference in my body - i feel gross!

I think the most important things for my Crohn's is my diet, exercise, stress reduction, lots of prayer :) and the medicine and supplements I take. Hopefully someday i can stop taking the medicine but that's a long way off for me now. So in the meantime I am doing everything else and getting my body healthy and strong!

Good luck!
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/11/2010 7:13 AM (GMT -7)   
Wednesday where the heck are you getting that a low residue diet is processed foods? Thats not true at all. Try googling the diet and see how much processed food is in the diet. On the low res diet I eat NO processed food, I can't tolerate processed foods. Yes I eat bread and tortillas, but I do not eat red meat or pork either, very little dairy (only eat motzarella cheese). I eat alot of fish, chicken, and turkey. I do eat what fruits and veggies "I" can tolerate. But your statement about processed foods is incorrect. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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