remicade side effects?

by laura

has anyone else had side effects from remicade that lasted yrs after they were taken off it ?

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Remicade only option?
by: Paul

My 17 yo son has inherited my Crohn's. He has it in the same place at the same age. Terminal illium. I had my diagnosis 31 years ago. I had blockage and a resection of 2 feet. I have not been on steady meds or hospitalized since. I did try to treat it but it turns out my symptoms were not Crohn's but symptoms of not having an iliocal valve. Cholerestamine has fixed that 100%. So now my sons specialist has put him on methotrexate until it failed and he flared again. He put him on a nasal feeding tube and offered remicade. We declined the remicade and he offered no alternative. It seems like he is forcing us to try remicade by making us desperate. They claim it only increases t-cell lymphoma risk if combined with immunosuppressants. I think surgery could end this crohns journey as it did for me. Does anyone have advice? Can I request surgery.
Muscle cramps
by: Anonymous

I was presccribed remicade approx 4yrs ago and then again 2 years ago. After my first tx. the second time, I hasd an allergic reaction and developed hives and then, as diagnosed by a Dr., full body artheritis. I was given naproxin and recovered in about 5days. I get muscle cramps, in my jaw, neck, hands, back, abd, and legs and wonder if this is related.
Muscle cramps
by: Anonymous

I was presccribed remicade approx 4yrs ago and then again 2 years ago. After my first tx. the second time, I hasd an allergic reaction and developed hives and then, as diagnosed by a Dr., full body artheritis. I was given naproxin and recovered in about 5days. I get muscle cramps, in my jaw, neck, hands, back, abd, and legs and wonder if this is related.
Muscle cramps
by: Anonymous

I was presccribed remicade approx 4yrs ago and then again 2 years ago. After my first tx. the second time, I hasd an allergic reaction and developed hives and then, as diagnosed by a Dr., full body artheritis. I was given naproxin and recovered in about 5days. I get muscle cramps, in my jaw, neck, hands, back, abd, and legs and wonder if this is related.
side effects
by: Anonymous

Remicade has been poison for me. I have had a horrible experience with this drug. It is toxic!!!! I have spent the last three months trying to get over abscesses, including one that went to the bone. Explore every other avenue before you go on Remicade. Last summer I lost two of my perfect teeth because of Remicade. I will never touch it again!!! Do your homework before you consider it.
remicade
by: Anonymous

i am a 28 year old female and i have had crohn's about 13 years. i have taken remicade for almost 10 years now, since it was first put on the market. it has absolutely changed my life! i am a nurse and live a pretty normal life as opposed to not being able to walk up stairs before. i have never had any complications, other than the occational opprotunistic infection. every drug can have side effects, and life gives you cancer, so do what gives you, or your son the best quality of life.
RHEUMATIOD ARTHRITIS
by: Anonymous

I AM A 39 YEAR OLD LADY I HAVE BEEN RECIEVING IMFLIXIMAB (REMICADE) INFUSIONS FOR A WHILE NOW I HAVE RECENTLY DISCOVERED THAT I AM GETTING FLARE UPS AFTER ABOUT SIX WEEKS THE NURSE HAS SUGGESTED THAT I HAVE MY INFUSION EVERY SIX WEEKS I FEEL A BIT DOWNHEATRTED ABOUT THE INFUSION BECAUSE IT WORKED SO WELL AT THE START AND NOW IAM BACK TO SQUARE ONE NOW TIREDNESS PAIN AND JUST GENERALLY FEELING UNWELL I AM HOPING THAT HAVING THE DRIP EVERY SIX WEEKS WILL MAKE ME FEEL A LOT BETTER.
Remicade side effects?
by: Bella

I was diagnosed with crohns around 3 years ago, prior to that I had been seriously ill for about 3-4 years not knowing what as causing it. I had to resign from my job after 18 months of not getting better (my employers kept my position for 18 months) . Before I was told I had crohns a lady came on a day time TV show and she described all my symptoms and callled it crohns. I knew then I had crohns. I went on the web and read and cried, because I was so scared of the future. I saw my consultant a few weeks after that and he confirmed my fear.

I was put on many medications, but none really worked. I was told my best option was Remicade (imfliximab) as it's known in England. It was given over long intervals to start with, every 12 weeks. It allowed me to work again, it gave back my freedom, to plan and have a life. I had an itchy rush on my skin for the first 3 times I took the drug. That no longer happens now. My hair is not as healthy as it use to be. I feel my flare-ups are more painful and sudden now.

I have been taking remicade for about 2 years now and it's effect is beginning to wear off. I use to be able to stay clear from flare-ups for 3 months and more in the initial stages but now I need to take it every 6 weeks. My worry is I don't know what I'll do if this medication fails, my doctor mentioned some sort of injection which I will have to administer myself. I have an extreme phobia of needles and terrible veins, and every time have to go for Remicade and blood test it is a real challenge.

I think a positive outlook help me through it before I was diagnosed and I'll let carry me through, so I'm just trying to stay strong, happy and healthy.

I don't normally talk about this illness much, its helpful to have people who understand it. I have what times in the year I feel my worst and the foods that are not good for my stomach.

I wish you all good health.

Bella X
Remicade side effects?
by: Bella

I was diagnosed with crohns around 3 years ago, prior to that I had been seriously ill for about 3-4 years not knowing what as causing it. I had to resign from my job after 18 months of not getting better (my employers kept my position for 18 months) . Before I was told I had crohns a lady came on a day time TV show and she described all my symptoms and callled it crohns. I knew then I had crohns. I went on the web and read and cried, because I was so scared of the future. I saw my consultant a few weeks after that and he confirmed my fear.

I was put on many medications, but none really worked. I was told my best option was Remicade (imfliximab) as it's known in England. It was given over long intervals to start with, every 12 weeks. It allowed me to work again, it gave back my freedom, to plan and have a life. I had an itchy rush on my skin for the first 3 times I took the drug. That no longer happens now. My hair is not as healthy as it use to be. I feel my flare-ups are more painful and sudden now.

I have been taking remicade for about 2 years now and it's effect is beginning to wear off. I use to be able to stay clear from flare-ups for 3 months and more in the initial stages but now I need to take it every 6 weeks. My worry is I don't know what I'll do if this medication fails, my doctor mentioned some sort of injection which I will have to administer myself. I have an extreme phobia of needles and terrible veins, and every time have to go for Remicade and blood test it is a real challenge.

I think a positive outlook help me through it before I was diagnosed and I'll let carry me through, so I'm just trying to stay strong, happy and healthy.

I don't normally talk about this illness much, its helpful to have people who understand it. I have what times in the year I feel my worst and the foods that are not good for my stomach.

I wish you all good health.

Bella X
remicade side effects?
by: Bella

I was diagnosed with crohns around 3 years ago, prior to that I had been seriously ill for about 3-4 years not knowing what as causing it. I had to resign from my job after 18 months of not getting better (my employers kept my position for 18 months) . Before I was told I had crohns a lady came on a day time TV show and she described all my symptoms and callled it crohns. I knew then I had crohns. I went on the web and read and cried, because I was so scared of the future. I saw my consultant a few weeks after that and he confirmed my fear.

I was put on many medications, but none really worked. I was told my best option was Remicade (imfliximab) as it's known in England. It was given over long intervals to start with, every 12 weeks. It allowed me to work again, it gave back my freedom, to plan and have a life. I had an itchy rush on my skin for the first 3 times I took the drug. That no longer happens now. My hair is not as healthy as it use to be. I feel my flare-ups are more painful and sudden now.

I have been taking remicade for about 2 years now and it's effect is beginning to wear off. I use to be able to stay clear from flare-ups for 3 months and more in the initial stages but now I need to take it every 6 weeks. My worry is I don't know what I'll do if this medication fails, my doctor mentioned some sort of injection which I will have to administer myself. I have an extreme phobia of needles and terrible veins, and every time have to go for Remicade and blood test it is a real challenge.

I think a positive outlook help me through it before I was diagnosed and I'll let carry me through, so I'm just trying to stay strong, happy and healthy.

I don't normally talk about this illness much, its helpful to have people who understand it. I wish you all good health.

Bella X
MY SIDE EFFECTS FROM REMICADE
by: BETTINA

I AM A 31 Y/O FEMALE WHO HAS SUFFERED FROM CROHNS FOR THE PAST 11YRS.I BEGAN GETTING ABCESSES AND FISTULAS IN 2006,FOLLOWED BY NUMEROUS SURGERIES AND HOSPITALIZATIONS.BEING THAT IT IS NOW 2008,AND STERIODS NO LONGER SEEM TO WORK, I DECIDED TO TAKE MY DOCTORS ADVICE AND TRY REMICADE INFUSIONS.I WAS SCARED,BUT REALLY HAD NO CHOICE.I HAVE HAD 4 INFUSIONS SINCE FEBRUARY.AFTER MY 1ST INFUSION, I FELT GREAT AND THE BLEEDING AND PAIN STOPPED, AND I HAD NO SIDE EFFECTS, THEN NOT TO MUCH LONG AFTER THAT I ENDED GETTING AN ABCESS WHICH REQUIRED SURGERY AND A STAY IN THE HOSPITAL.AFTER I WAS RELEASED I CONTINUED TAKING THE INFUSIONS AND SO FAR IT SEEMS TO HAVE KEPT THE BLEEDING AND PAIN UNDER CONTROL.I STILL HAVE FLARE UPS HERE AND THERE,BUT NONE TO THE POINT WHERE I END UP IN THE HOSPITAL.I HAVE ROUTINE BLOODWORK DONE, DUE TO THE INFUSIONS,AND SO FAR EVERYTHING HAS COME BACK NORMAL.I KNOW ITS SCARY DUE TO ALL THE LISTED SIDE EFFECTS, BUT I COULDNT DEAL WITH THE PAIN ANYMORE, MENTALLY OR PHYSICALLY.IF ANYTHING REMICADE HAS HELPED ME MORE THAN HURT ME.IM SORRY FOR ANYONE WHO HAS TO LIVE WITH THIS ILLNESS,I KNOW ITS HARD,BUT TRY TO HAVE A POSITIVE OUTLOOK BEFORE TAKING ANY NEW MEDICATION AND IT HELPS TO ELIMINATE SOME OF THE FEAR YOU MAY HAVE,AND IN THE END YOUR DECISION TO TRY A NEW MEDICATION MAY BE THE BEST BENEFICIALLY DICISION YOU COULD HAVE EVER MADE-GOODLUCK AND GODBLESS YOU AND YOUR FAMILY.
remicade
by: Anonymous

it took my fistula away totally which i hear it has for a lot of people .side effects , nerve problems ( numbness, tingling , chest pains , vision problems iritis .many more but i hear im an exception so im waitin to hear more myself.
remicade
by: Anonymous

it took my fistula away totally which i hear it has for a lot of people .side effects , nerve problems ( numbness, tingling , chest pains , vision problems iritis .many more but i hear im an exception so im waitin to hear more myself.
remicade
by: Anonymous

it took my fistula away totally which i hear it has for a lot of people .side effects , nerve problems ( numbness, tingling , chest pains , vision problems iritis .many more but i hear im an exception so im waitin to hear more myself.
remicade side effects?
by: Anonymous

Hi Laura,

Unfortunately I cannot answer your question, other than to ask you "what kind of side effects are you having". I am particularly interested because my 19-year-old son has a very severe case of Chrons, the prednisone is not working as it should and it is suggested he now take the Remicade injections. I am nervous,partly because of the risk of cancer (although a low risk) and partly because this is the last recourse for him and it seems like such an intense procedure. Did the Remicade help you? Please reply. Again, I'm sorry I can't help you out but I would appreciate knowing what could be in store for my son. Thank you.

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remicade vs humira

by Tod
(Long Island)

I am so angry with myself for fiddling with a perfect thing. Three weeks ago I started on Humira after having had a great 12 months (6 treatments ) on Remicade.
Like a dolt, i felt it would be more convenient to inject myself rather than once every two months get an infusion at the doctors office.
I now feel as bad as I felt before being on Remicade.
They just put me on Entocort to head off the flare up and they are going to put me back on Remicade.
Does anyone out there know how long I have to wait after my last Humira injection before I can do the Remicade infusion?

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bACK ON rEMICADE NEW
by: Tod F

I did the same thing with the exact same results. Just like my Remicade treatments, I had to wait 2 months before going back on Remicade. thankfully I am back, because I feel even better than I did before! This is my 7th year on Remicade and 6mp and i could not be happier. i have had Crohns for 42 years and i only wish I was able to be on remicade sooner. better late than never!
bACK ON rEMICADE NEW
by: Tod F

I did the same thing with the exact same results. Just like my Remicade treatments, I had to wait 2 months before going back on Remicade. thankfully I am back, because I feel even better than I did before! This is my 7th year on Remicade and 6mp and i could not be happier. i have had Crohns for 42 years and i only wish I was able to be on remicade sooner. better late than never!
I made same mistake!
by: dachuckster

I should have never changed from Remicade. I also switched to Humira then to Cimzia. I need to get back to Remicade!

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Remicade Side Effects

by laura johnson
(LILLOOET BC)

I WENT ON REMICADE FOR 2 YRS . HAD TO GO OFF IT, BECAUSE OF HORRENDOUS SIDE EFFECTS . 1YR OF VISION LOSS FOR MINUTES AT A TIME , ONLY IN ONE EYE THANK GOSH. 4 YRS LATER AND IM STILL HAVIN PROBLEMS , NUMBNESS . FIBRAMYALGIA , BURNING UNDER THE SKIN.,, IRITIS , BLURRY VISION STILL. CHEST PAINS ( THE DOC THOUGHT I WAS HAVIN A HEART ATTACK . HAVE HAD EVERY TEST POSSIBLE . RIGHT NOW MY TONQUE AND THROAT ARE SWOLLEN AND I HAVE TO TAKE ANTI-HYSTIMINES . HAS ANY ONE ELSE HAD THESE PROBLEMS , ? DO THEY EVER LEAVE ?FOUR YRS IS A LOONG TIME . WOULD BE GRATEFUL FOR ANY FEEDBACK .

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Remicade
by: Anonymous

I feel very sorry for the lot of you. It seems like I am the only person that has so much luck.
I had very active Crohn's desease for 15 years till I was given the option of having my large bowel removed or trying Remicade. I went with the Remicade.
It cost me $5000 plus paying for an office and a nurse to administer the infusion.

I waited one month with the usual symptoms and then like a miracle I began having normal bowel movements, no blood just like I was a child again.

I only had to have the one infusion and that was that. I take a 6MP tab each morning; though now I can't get them, so I don't know what will happen. I swear by Remicade and I wish all of you the luck I had with it. It was a miracle!!!!!
Different effects for me
by: Angie

I was on Remicade for 2 years. I felt great for about 1.5 years of that time. My problem was that the drug gradually stopped being effective. Infusion every 8 weeks, but after 7 weeks, then 6 weeks, then 5 weeks (you get the picture), my symptoms would flare - mostly diarrhea, some loss of appetite. The kicker was that I got a fistula in spite of being on the meds. Ended up with another bowel resection 5 months ago. Now taking 6MP, which doesn't appear to be helping much either. May try Humera (sp?) next.
very common
by: Anonymous

very common and not a good sign so watch carefully what does your gi say ? im still hav in problems after 4 yrs doc says its nerves (not likely).
Side Effects
by: Anonymous

I have been on Remicade for 1.6 years and just had a allergic reaction on my skin. The say it is dermatitis. Very wierd. Hopefully it won't stick around.
fistula
by: Anonymous

the one thing that remicade does for sure is heal the fistula . took me a yr but still hasnt come back . the side effects are horrible for me tho
Wife of Chrons patient
by:

My husband had a seton placement and it did not work so the doctor started him on Remicade last August. He has had 6 treatments so far, and mentally he feels so much better. Unfortunately physically, his fistula is the same, not any better. Feel for all of you with side effects...
remicade
by: Anonymous

some people have no problem with remicade . my side effects started while i was on it so i had to go off it . has been four yrs and still problems . dont want to scare you , just dont ignore your gut feelings . hope you are and stay well.
Remicade
by: Davis

I was diagnosed with Chron's disease in 2005 and at the time had never even heard of Chron's. After an hemicoloctomy in 2005 and numerous blood tranfusions and hospital stays ( 2 to 3 yearly) not to mention the amazing amount of bouts of diarreah daily I started on the Remicade Therapy and have had a very good response to the treatment. I am no longer running for the bathroom every five minutes and have had no vomiting or dizzines from blood lost. It really scares me to hear about these side effects. How long before these side effects start after the treatment. I am schedule for my 3rd dose on 4/7/08. And would really like to hear from more people that have been on the therapy and if they are having similar problems.
it works for some and not others
by: BARB

hi when l read your letter l relized that l have many of the same never put to the remicade. l went on it as a test subjet about 6 yrs ago. it worked greated cleared my fistulas and put me in remission then after 4 treaments l had to pay and then it was 10.000.. l slowely wwnt down hill. and then got the opportunity to try again. l get the blured vision, heart pains... thinking its not really working any more but afraid of not taking it.. l cant tell ya how long it takes to get out of your system.. but for me it beats prednsone thats stuff is real bad for me took for about 20 yrs of and on ..so lets cross are fingers that they come up with a new drug. they are getting smarter everyday.. Wish you all the luck, laughter, and good memeriors.. take care

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REMICADE!?!?

by JamieT
(Davison, MI)

I am about to start remicade in about a week and was wondering if anyone had any tips, advice or other. I've heard so many things about it (mostly bad ) and I'm a little hesitant. Any input or other would be greatly appreciated!

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Remicade
by: Anonymous

I have had Crohns disease for 41 years. The only thing that has given me some quality of life over the past 11 years is remicade. I noticed a difference after the fist infusion. If you do not have any side effects from remicade, you will see a great improvement in your life.
on remicade agian?
by: Mika

I was on all kinds of meds prior to rem. and none of them worked for me. My white blood cell count dropped so low on Imuran that I had to get off it immediately- thank goodness- realized that joint paint, hair loss etc was from that. Had no serious side effects from Remicade- tired for a day or two after infusion, but dissease was well under control- I was normal. Did so well after 1 1/2 years on Rem. I decided to try without (worried about the long term side effects) Have been almost two years off REm and all drugs and only had very minor flares for a few days- Now suddenly have a bad long lasting flare up and wondering if I can go back on Remicade or if Humira would be better. Tough decisions.
Remicade changed my life!
by: Anonymous

Remicade was truly life changing.
i have many symptoms including arthritis, cellulitis and stomach cramps associated with my crohn's but they have all stop since being on remicade!!
Remicade Rocks
by: Brent

Been on Remicade for i think 8 years ??? Since around 2002 ? Well i would and do tell everyone with Crohns they better try it. It's the only reason i am not dead i think.

Shortly after getting married i wilted to a lowly 150 pounds and sweat at night so bad i would sleep on towels. I was going nuts. Then i ditched my doc that suggested surgery. Found my gastro guy that put me on the Magic Stuff (remicade) and i dont think about being sick anymore.

Sure i am still tired, and sore joints from time to time but nothing compared to the Pre-Remicade life. Which was not a life for me. So give it a try if your current situation allows. Expensive stuff worth every penny.
Remicade
by: Anonymous

My son is 13 and unfortunately, was diagnosed last July with Crohn's. We decided to have him start Remicade this past November.....so far...so good. He was taking 6MP prior to Remicade, and that did not work for him. Remicade has made him feel 100% better.....thank goodness. But, DO NOT mix Remicade and 6MP that's what greatly increases the risk for cancer--if you're starting Remicade, you must not be on 6MP anymore!!!
My heart goes out to you, and I wish you the best in treating your Crohn's.
I Thank God For Remicade
by: Anonymous

I was given Remicade infusions when I was around 10. I'm 23 now and have had no problems with my Crohn's Disease since then. I haven't been on any other medications for Crohn's since then either. I only do my yearly colonoscopy. Also, stay happy. Nothing helps this disease more than Remicade and a healthy mind.
remicade is a gift from God
by: Anonymous

Jamie,
As I posted on a different thread I've been on Remicade for over a year now and finally feel like I have my life back again! Sometimes near the end of the 8 weeks I start to feel like I need my next infusion but I just know not to plan anything around a couple days before my infussion. My decisions were surgery or Remicade and I chose Remicade-best decision I've ever made. It is also a great way to meet other people dealing with your disease-when your sitting in a chair for 2 hours with other people you learn a lot about them and there struggles with it-i've built quite the support system in the last year. Good luck!
Remicade
by: Marissa

I've been on Remicade since January and it's actually been great for me. I was worried to because of all the "Bad" things that they say can happen, but those are rare. Don't be worried, be excited that it could bea solution to the problem. Also don't get discouraged if you don't see results right away. It took a few doses for it to start working for me.
Try it.
by: Anonymous

Hi, I have recently started the Remicade treatment, and have noticed some improvement. I have more energy, and just feel all around better. One down side is, I have had a chest cold/infection for aprox. 2 months now, and if this the only side effect I'm glad to have it. For I really believe that over time this will help with the fistulated crohns.
Me too.
by: Anonymous

I just got diagnosed today after a colonoscopy and endoscopy last week. My STUPID primary doctor told me I had genital herpes even though all tests came back negative...she just couldn't understand why the ulcers on the outside of my body could be something other than that. IDIOT. Anyways, I have a fistula so my doctor is starting me on IV drips of Remicade. I have not researched side effects, so I can't answer your question. I'm terrified. However, the bright side is that if it eliminates the stomach pain and diarrhea, it can't be worse. I've lost ten pounds in two weeks and can't seem to put the weight back on. I'm emaciated looking. This is the most devastating news I've had.
remicade( my short story)
by: Crystal M

Remicade should be the last resort if you can help it because it is such a strong drug. I have had Crohn's since the age of 12 and now 26. I did have my first dose of remicade on October 2005 and the last infusion was in April 2006, I believe. So it has been a year and a half since I have had remicade last. I have been taking just the pentasa 3 times a day. During the treatments in the begining I could always tell I needed another one because it would start bubbling and cramping and then it would be that I never felt any inflammation(flare up) so we just stopped the remicade( the doctors of course did.)I felt normal again and did not have any symtoms of crohn's at the time. I never had any adverse reactions at all. They do say that once u stop the drug and if u start it again that you might have some allergic reactions to it. But it has really helped me! I just had a really bad flare up due to major stress and just needed something extra to help me. so good luck and ask me anything else if u need to. ~crystal from texas~
remicade
by: Anonymous

It's the only thing that works for my husband! We are madly in love with Remicade : )
Remicade!?!
by: Maudine

I've been on remicade for 2 1/2 years. I take it for arthritis as well as Crohn's. I didn't hear any of the negative things before starting so I went in with a positive attitude. As far as being an immuno suppressant so are the other meds that one takes for Crohn's. What is the difference? I was warned to try not to be around people with colds or flu or to try not to get infection of any kind. I feel better several days after my infusions and have never had any adverse effects. What horrible things did you hear and who did you hear them from? Did a MD tell you the adverse things? You have to be careful of where your information comes from. I don't believe everything I hear. I prefer to try things myself and make up my own mind. Prayer and a positve attitude help. Believe that it will help and it will!
Remicade!?!?
by: Mary in IL

Don't be hesitant, just go for it. It took years for our son to get to remicade. We did not sleep at night, he was miserable during the day. We went through many oral medications that either did not work or that he had horrible reactions to. Remicade takes time but it so so well worth it. We are now sleeping all night long---all of us!!!! He is tolerating his diet better and social life is back. We can go out and not worry about him cramping and having to go home or any of the other issues. It has truly been a miracle drug for us and many others. May God be with you as you go through this..but just try to relax and allow it to do what is suppose to.
REMICADE TIPS
by: Vicki

I WAS ALSO LEARY OF GOING ON REMICADE, AND FOUGHT THE IDEA FOR MONTHS. THEN, AFTER A YEAR OF DRUG COMBO'S THAT DIDN'T WORK, IT CAME DOWN TO EITHER SURGERY OR REMICADE, AND AS THE LAST RESORT (DRUG-WISE), I FINALLY CHOSE REMICADE TO AVOID THE SURGERY WITH A BAG. IT IS SCARY ALL THE STUFF YOU READ RE CANCER AND LOW IMMUNE SYSTEM. I DECIDED I NEEDED QUALITY OF LIFE NOW TO RAISE MY CHILDREN, AND IF SOMETHING HAPPENS DOWN THE ROAD, I'D DEAL WITH IT THEN.
SO, I TAKE NUTRITIONAL SUPPLEMENTS (THROUGH A COMPANY CALLED MANNATECH, LOOK ON-LINE) TO HELP KEEP MY IMMUNE SYSTEM UP, WHICH REALLY HELPS. ALSO B12 SHOTS EVERY MONTH.
GET YOUR REMICADE AT SAFEWAY ON 10X AIRMILES DAY AND YOU CAN EARN SOME GOOD POINTS FROM THIS DISEASE. I FIND WHEN I GO FOR MY INFUSIONS, IF I PLAN ON RESTING AND "RECEIVING" IN A CALM WAY, IT WORKS BETTER FOR ME, HOWEVER OTHERS ENJOY CHATTING THE WHOLE TIME OR WATCHING TV, SO FIND WHAT WORKS BEST FOR YOU. ANY ROAD TO REMICADE IS A LONG, HARD STRUGGLE, SO GOOD LUCK. THE GOOD NEWS IS, IT HAS GIVEN ME QUALITY OF LIFE NOW, AND I HOPE IT KEEPS ON WORKING. I HAVE BEEN ON IT 1-1/2 YEARS NOW, AND WHEN I FIRST WENT ON IT, I THOUGHT I'D GO ON IT FOR A FEW MONTHS, GET BETTER, AND WIEN OFF IT, BUT NOW I SAY, 'DON'T TAKE ME OFF IT', IT WORKS THAT GOOD FOR ME. HOPE YOU GET GOOD RESULTS AS WELL, AND MAY GOD BE WITH YOU.

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Remicade or Surgery

by Colleen
(Alberta)

55 year old female just diagnosed with Crohns in July after spending a week in hospital going through a battery of tests. Only symptoms were occasionally throwing up with bowel movement. I have a stricture in the large intestine. Was on Prednisone but GI did not feel that it had done enough. Now my options are surgery or Remicade. Comments from anyone?

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grateful for remicade
by: LA patient

For those of you with Crohn's who are weighing surgery v.s. Remicade, don't you run the risk of Crohn's coming back in another area even after the diseased area is removed? I have UC and a skin ulceration (Pyderma Gangrenosum), a complication of UC. The wound wouldn't heal and I was ultimately put on Remicade. What a God send! Even though my wound is still not healed, I didn't realize how bad I was feeling due to arthritis that can come along with IBD. My life had slowed down, and I felt really bad so much of the time, but it had become a common feeling for me. After the Remicade, I stopped hurting so much, had a lot more energy and didn't have the general malaise and flu-like feeling that I got so used to. My only problem is that I get a very run-down feeling about a week before my next infusion is due. I would choose to live with the potential risks of Remicade any day, and live a more full life than the sorry life I lived before. I am so grateful for Remicade. If Remicade has stopped working for you (or never did work for you), remember that there are other drugs you can try that do the same thing (like Humira).
Thank Jesus for Remicade
by: Jo

I have to say that I am a poster child for Remicade. I am so thankful for it. I have had Crohn's for four years and was very sick when my Doc said we really needed to consider it. She was very patient about my concerns but finally I decided that the minimal risk involved with the drug was better than being so sick all the time and telling my three babies that Mama was "too tired/sick to play" . . . again. I went on Remicade and within ONE WEEK - I felt so energetic, so healthy. The difference was to extreme to accurately describe. You know what I'm talking about. Anyone who's reading this or contemplating it must be pretty sick . . . One week later, I had the energy of a "normal" person. I was my old self again. No more sickness within ten minutes of a meal; no more exhaustion for no apparent reason, NO MORE STEROIDS!!!! How wonderful it was to be vigorous, healthy! And can you guess how many side effects I had? Zip. Zero. Nada. I usually feel a bit run down for three or four days before I'm due for an infusion - but that's it. I can live my life and pray with gratitude it continues ot work. It's a miracle. The risk is so unlikely - untreated/rampant Crohn's is more dangerous.
Thank Jesus for Remicade
by: Jo

I have to say that I am a poster child for Remicade. I am so thankful for it. I have had Crohn's for four years and was very sick when my Doc said we really needed to consider it. She was very patient about my concerns but finally I decided that the minimal risk involved with the drug was better than being so sick all the time and telling my three babies that Mama was "too tired/sick to play" . . . again. I went on Remicade and within ONE WEEK - I felt so energetic, so healthy. The difference was to extreme to accurately describe. You know what I'm talking about. Anyone who's reading this or contemplating it must be pretty sick . . . One week later, I had the energy of a "normal" person. I was my old self again. No more sickness within ten minutes of a meal; no more exhaustion for no apparent reason, NO MORE STEROIDS!!!! How wonderful it was to be vigorous, healthy! And can you guess how many side effects I had? Zip. Zero. Nada. I usually feel a bit run down for three or four days before I'm due for an infusion - but that's it. I can live my life and pray with gratitude it continues ot work. It's a miracle. The risk is so unlikely - untreated/rampant Crohn's is more dangerous.
Ramicade is a great choice
by: Anonymous

As a third year nursing student, i had the opportunity to witness Ramicade use as treatment for patients with crohns disease and it was the best choice ever.
BEWARE OF REMICADE & DRS
by: Marydon

There are MANY OTHER OPTIONS to try rather than Ramicade or Imuron, etc. They have been trying for years to get me to try these chemo-meds. I flat refused. I have been on Asacol for about 20 years. What a relief from the horrible steroids that the Drs. flat demanded I take, at the beginning.

THERE ARE MANY OTHER DRUGS TO ASSIST YOU, as in ASACOL, so don't let the Drs. bully you into taking chemo drugs ... there is no proof that they will work & you are placing your body in harms way with all these side effects they can cause that are unrelated to Crohns.

BEWARE, BE STRONG, GET EDUCATED!
Remicade
by: Dave

Try the Remicade first. It is expensive, but if you have insurance it shouldn't be a problem. I had remicade therapy 2 years ago. It put me back into remission. I have recently come out of remission and am on pred, and will start remicade again shortly... Good luck

-Dave
Remicade or Surgery
by: Anonymous

REMICADE all the way. I had great success with remicade and never had surgery
Remicade or Surgery
by: Anonymous

Colleen,
I was in a situation much like yours about a year ago. After battling Crohn's for about 3 years I was given the Remicade/Surgery option. I had been on prednisone off and one for the entire time. I chose Remicade and for the first time in as long as I can remember I feel like a normal person again. Remicade has worked wonders for me and the way I see it is that you might as well try a drug that has no recovery period to it and see if it works. My GI was leading more towards surgery for me because I am a 21 year old female and would recover quicker but I am very happy with the decision I made.
-Kirsten
Remicade
by: Anonymous

I would say try the Remicade before surgery! And it never hurts to get a second opinion, either -- your doctor shouldn't be offended by that. It's your right as a patient.
Remicade or surgery
by: Mary

Remicade is the least invasive and if it works you won't have to recover from abdominal surgery. My son is on remicade and it is a wonder drug for him. My best to you.

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6mp or remicade, are there other options

by trish
(alamogordo nm)

i recently came out of the hospital due to another crohns flare up that went out of control. the doc has been trying to get me off pentasa and prednisone and onto 6mp for a while but i'm scared of the side effects. also a new doc is now talking about remicade being my next option but that seems worse than 6mp. which one is more successful or less risky or whatever... i'm scared of both. i take fish oil and coconut oil but i'm still in need of a new drug according to the docs. if anyone has tips or anything please let me know

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6mp
by: Anonymous

I was diagnosed with CD 2 years ago when I was 17. Since then I've been on everything from Asocol and Entocort to Prednisone. Nothing has given me much relief. My disease is in the terminal ileum and retal areas. After a week of being in the hospital, I am now on 6MP and Entocort. I've been on both before, but my GI doc decided to increase the dose and see how effective it is. It's difficult because I'm a full-time college student and these meds make me sooo tired!! I'm also very anemic, so I go for IV iron therapy once a week.
Besides the fatigue, the 6MP hasn't really given me any problems.
Hope this helps :) Feel better!!
humira
by: tod

some say that humira is a great alternative since it comes solely from human DNA (rather than human and Mouse like Remicade) therefore causing less side effects.
I personally feel that Remicade was a lifesaver, and only wish it was around 38 years ago when i was first diagnosed with cd.
See my comments under Humira vs Remicade to learn more about my opinion.
Hope this helps!
by: Anonymous

I have been on 6mp and Remicade treatments together for 2 years, and it has been a miracle for my ulcerative colitis. I fortunately had no side effects and I have not flared since being on both drugs together. I have tried every other drug possible, and nothing really took care of my flares. The worst med was prednisone, the side effects are awful... and every time I would try to wean off of it, I would flare again and it was a vicious cycle. Read the research on both drugs, and talk more about it with your dr. before you start 6mp or Remicade. Here is a helpful website you can go to and read about the different treatments available for chron's and colitis:
http://www2.healthtalk.com/go/crohns-disease/webcasts/crohn-s-disease-and-ulcerative-colitis-treatments-what-s-new-and-what-s-on-the-way/transcripts/print

Good luck!
medications
by: Anonymous

I took Pentasa for a while but never really like how it made me feel. My doctor said it treated the upper part of the intestines better(because it desolves) than Asacol which stays intact til the end (literally)But I never liked it and asked to be changed back to Asacol and Entocort and I am also on Purinethol. I hate taking anything but these make me feel comfortable. My doctor told me that if there are any real thickened areas it is not a good idea for the remicade therapy which was considered at one time for me. That it could cause obstruction. Who know's each doctor is different. I have had Crohn's for 26 years and have fought surgery til January 2008. Flagyl and Levaquin are usually the antibiotics I am placed on when needed. Protonix daily. I have never been on 6mp so I don't know anything about it. In the past I have been on Dipentum (sp?) Rowasa enemas- sorry that is all I can think of right now other than drugs for other symptoms associated w/Crohn's - Pamine- and some pain and nausea drugs.

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remicade

by lyndseylou
(England)

Has Remicade worked for you?

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new to remicade
by: mawmaw

Just had second infusion felt very tired no appetite severe gas and cramping then back pain and diarrhea heating pad and immodium help some how many treatments will it take before I feel better
Remicade has been wonderful
by: mo

I was diagnosed with crohns when I was 13 years old.(now 31). I have been on remicade for 10 years now and it has worked for me and I have never had any side affects. I can't say enough good things about this drug (except for the cost).
I'm currently looking for an alternative treatment that is not so expensive and I'm worried nothing will work as well as the remicade.
However, I worry about being on a drug for this long of time. But so far, no side affects what so ever, except for good health!
I should have never swithed from Remicade to Humira then Cimzia.
by: dachuckster

I agree---REMICADE! (THE BEST, if tolerated.)
Yes Yes Yes
by: Tod

I have had Crohn's for 38 years and have run the gamut of treatments from prednisone on down the line. Two years ago my doctor prescribed Remicade infusions along with 6mp (mercaptopurine).
My only question is....WHERE HAS THIS TREATMENT BEEN ALL MY LIFE?
It has been that amazing for me. My buddy also has Chrone's and six months ago started Humira injections with similar positive results!

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remicade and crohns

by maryann
(new jersey)

Had remicade this morning. Now have shakes and chills, nausea. I don't know hwy this is happening. Any suggestions would be appreciated.

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can remicade make diarrhea worse?

by Karen
(New Jersey)

Hoping that remicade might help, it seems to help for a little while, then symptoms come back, sometimes diarrhea seems much worse.

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remicade
by: Anonymous

How long does it take for your symptoms to reappear? You may need to move your treatments closer together.
Try probiotics to control the d in the mean time.

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Remicade / Humira

by Frank
(Kentucky)

Recently my doctor suggested remicade, then switched to humira for treatment.
Although I have read up on these drugs I do not know anyone who has taken them.
Does anyone know how bad the side effects can be on these drugs, and do they make you feel better.

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I recommend Remicade!
by: Anonymous

Hi! I'm 18. I have been on remicade fr 2 years now and I dont even feel like i'm living with crohn anymore. It has litteraly disapeared. I was realy sick, and I got hospitalized. Thats when they decided to put me on remicade....3 days after, the cramps were gone..and a week later, ALL the symptoms had disappeared. And it has stayed the same since then. I did not have any side effect at all. Exept for the benadryl that they always give before the infusion. But now they only give me half of the dose and its PERFECT.

If you are afraid of remicade....you should clearly try it. there are risks, but if may work. What it did to my life is priceless.

Personaly, I would rather recomend remicade thant humira, because you get in contact with other people, with caring nurses, and even if youre shy and you wont talk to them, you dont feel alone.

I hope i helped you!:)
Remicade->Humira
by: Gerald

I have ankylosing spondilitis and have been taking remicade for approx 4-5 years. Over the last 2 years the medicine has not been working as it was prior to this. Now I'm debating making the switch to Humira. I hear that in 75% of he cases those that don't respond to Remicade respond well to Humira. Making the switch is difficult as I hear Humira doesn't get fully into your system until 4-6 weeks while Remicade is almost immediate. What to do??? My AS is very aggressive and pretty much all my joints are affected. I'm getting a total knee replacement in late October and looking to switch to Humira during the time I will be in rehab. Anyone experience anything like this and have any comments?
Remicade and Humira
by: Anne

I was on Humira forabout 18 months for Crohn's disease.I hadn't unable to tolerate any of the conventional treatments.
During the time on Remicade I felt great.I however developed antibodies against it.
The doctors tried intravenous steroids and benadryl but the side effects became so bad I thought I was having a heart attack so I stopped.
After a couple of years on prednisone intermittently both my gastroenterologist and rheumatologist suggested I try Humira. I haveshad the loading dose and am to start regular dosing next week. I am afaid I am getting the same reaction I had with Remicade. Shortness of breath,dizziness,nausea,and headache.Plan to stop.
Now what????
Remicade and MTX
by: Anonymous

I stopped taking MTX due to side effects and Remicade was working so well. I started having muscle pain after infusions after stopping MTX. However, it was not bad enough to start taking MTX again. Remicade stopped working about 8 months later. Doctor thinks it may have stopped working due to not taking MTX. I'm not so sure. The first biologic I tried was Humira with MTX. It was a miracle drug and worked overnight. However, it only worked for 6 months. Then it was on to Remicade.

I am now on Orencia and have been doing extremelly well for over a year. Hope this helped. (I have RA not Crohns)
Remicade/Methotrexate
by: Anonymous

I have been on Remicade for about 4 years now and it works great. I have stopped taking methotrexate because it effects the liver.
My question for anyone here is, have you been on just remicade without taking methotrexate?
I know the docs say its best to stay on a low dose of methotrexate, because of antiblodies, but I am still contemplating what I should do.
I love Remicade
by: Folkars Girl

I have been on Remicade for 7 years and I feel great. I am going to switch to Humira because it is tuff to take off 4 hours of work every seven weeks. For anyone wondering....I was able to get pregnant while on Remicade...everything went well and my son and I have been very healthy. My little guy is 4 years old. The first time I was on Remicade it didnt do anything for me because my crohns was in really bad shape. They tried it again after my second surgery and it has worked like a charm. I did have an allergic reaction to it but now they just give me benedryl before the infusion. I highly recommend Remicade and I am hoping that Humira works just as well.
Remicade and Humira
by: Anonymous

My doctor first tried Remicade for a year with no effective results. Now we have tried Humira for almost a year and it doesn't have a positive effect either. The only treatment that seems to work is a long regimine of Entocort.
bad remicade experience
by: Anonymous

Don't want to scare you - I'm told my reaction was very rare. I went on Remicade last year and had an infusion about half a year before that. Neither treatment caused a remission though the saline that they gave me along with it felt really good.

Apparently in between treatments my body built up antibodies and I developed what they called "serum sickness'. Quite painful as it was three weeks after the fact and hard to trace back to the treatment, but they eventually figured it was the most likely cause for such an extreme reaction. I ended up hospitalized for a week - had extreme pain throughout my body as all my muscles started to lock up. Was covered in hives. They couldn't do much for me except saline and painkillers to wait it out.

So I guess the lesson to be learned here is that if you are going to go ahead with the treatment, don't give your body too much time in between infusions.
Humira
by: Gigi

Hey Frank,
I take humira and I really havan't had any side effects. I feel great, I'm in remission since Feb. this year. Since taking Humira. I have done the rounds with Remicade though too. My opinion, I like the Humira better than remicade, as far as feeling better. The only bad thing about humira is that you give yourself the shots. The medicine burns when it goes in. After a few minutes, your fine.
remicade side effects
by: Kirsten

I have been on remicade for over a year now and have had no side effects whatsoever-besides feeling great!
Remicade/Humira
by: Anonymous

I was on Remicade for a couple of years... it worked amazingly for me! Almost overnight it put me in complete remission, which lasted for two years. Prior to Remicade, I had surgeries for perirectal abscesses three times, and lived with setons for about six months. After going on Remicade, the fistula dried up in one dose and the setons came out. I was "almost downright normal," according to my doctor. I was completely, 100% healthy while on it.
However, I did have some trouble with reactions during infusions, and for a day or so afterward -- but in my mind, it was totally worth it to be healthy for the rest of the 8 weeks between doses. I eventually developed a resistance to it, but it was more than worth it to be on it for the time I was. I would highly recommend it to anybody who has not had luck with other treatments!
Remicade/Humira
by: Shawna

Like you my doctor wants to put me on Humira. He is still fighting with my insurance to get it approved since it's about $20,000 a year. YIKES... Wish you the best.

Shawna

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Crohn's Disease and Remicade

by Alain
(Montreal, Canada)

Hi .. I'm new here, so first of all I wanna say hi to everybody ... I'm being treated with Remicade for 2 years now . and It's working well. I leave in Canada and will love to move back to the Caribbean in 5 years .. is there any substitute to remicade that I can take with me to the Caribbean ?? cause while being down there I can forget about remicade because it will be too expensive without insurance .. thanks in advance for the answer.

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Substitute to Humira NEW
by: MFG99

Hi! Planning to move to Dom Republic. Does anyone knows the substitute for Humira in DR?
Here in Canada it's $3k per month.
So no way in the island I can afford that without insurance.
HOpe there is an alternative.
Ciao!
MFG

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remicade treatments outside of US

by Dennis Davis
(Houston, TX)

Do any countries offer remicade treatments tha would cost effective to visit (Costa Rica)

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remicade

by teresa
(b.c. canada)

why is remicade so darn costly?
i am waiting to go on it but because of all the darn paper work, it's taking much longer than i'd like.
We have to wait to see who will cover what, if anything. grRRRR
I am kinda nervous about the whole thing and i'd like to thank the internet for that. too much info out there it's like an over load.
any thoughts. will u stay on it? does it make you feel "normal" again? do u find you can eat better?
thanks
teresa

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David Comment NEW
by: Arthur

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11 yrs. on Remicade
by: Anonymous

My husband has been on Remicade for about 11 years and it has been a "god send" to him as far as giving him freedom to live a normal life. Unfortunately it has started to lose its effectiveness-according to the gastroenterologist Remicade is effective for about 10 years. So, he has gone from a treatment every 8 weeks to every 6 weeks for Remicade to still be effective. As soon as the 6 week regime no longer works he will have to go to another drug, unfortuneately the Dr. says that Remicade is the "gold standard" of meds for Crohns so any other med will not be as effective. Hopefully, they will come out with a new med which will be as good as Remicade and that the good effects will last longer
Remicade
by: Susie

My son is on Remicade, was put into the hospital after he went to a stomach doctor for right sided pain, after a ct scan, and predisone, he did not get any better, so readmitted to hospital within that week, after a colonosopy and visually seeing the ulcers from Crohns, he was started on Remicade, that day in the hospital, BCBS is paying for it, and it is costly, but you should be able to get some help from your doctor's office and the pharmacy with aiding in helping you to number one get approved and number two, with cost. Based on your financial need.
He is feeling better, and has gained weight, as a matter of fact we to Tuesday for another infusion.
I will see if he will get on line and communicate with you.

good luck

susie

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Remicade infusions to treat Crohn's

by Herb
(California)

My name is Herb. I began Remicade treatments for my Crohn's before losing my group health insurance due to a job termination. Since I'm still presently unemployed and without health insurance, I've been searching for programs that will assist you with the cost of Remicade infusions.

Has anyone successfully identified any such support programs here in the US? I'm located in Southern California.

All comments are most appreciated!

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Remicade infusion NEW
by: Anonymous

My husband went through the same thing and we got the medicine donated through the johnson and johnson foundztionthe only problem is now once you get the meds u need to find a doc to infuse it which can be too expensive which is what happened to us they told us 1400 per infusion.. Best of luck

Remicade infusion NEW
by: Anonymous

My husband went through the same thing and we got the medicine donated through the johnson and johnson foundztionthe only problem is now once you get the meds u need to find a doc to infuse it which can be too expensive which is what happened to us they told us 1400 per infusion.. Best of luck

Useless Remicade... NEW
by: Peter Bray

Good luck with Remicade..Cathy,44 was on it for 5 useless years---did NOT aid her Crohns--- is now pursuing natural means, probiotics, aloe vera, supplements, etc---

Be a "War on Crohns"--

PetrBray@AOL.com
ex trucker NEW
by: mark

Dont know ,but contact remicade and see if they have a assistance program

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Remicade and how long can you be on it?

by Sean
(Bayville, NJ)

I have been on Remicade for around 10 years now and though I am not having the flare ups like I did 10 years ago, I do notice I feel weaker and weaker as I get closer to the time to get my Infusion. I used to get them every 9-10 weeks, then 8 weeks, I am now on 7 and somewhere around 5-6 weeks I start feeling a general malaise. I am weak and achy all over.
Anyone else out there been on Remicade this long and how are you feeling? Any ideas on how long I can continue on this?
Thanks

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Remicade for over 10 years
by: betsy

Yes - I have been on Remicade for over 10 years without any reactions until my treatment last week. Now they are making me wait another 8 weeks to try it again with premedication. For the past couple of days my shoulders and hands have been really hurting. I don't know if my body aches is due to build up of antibodies to Remicade or just flare ups. Either way its not pleasant.
Remicade
by: Vanessa

Hello
I think you are lucky to have lasted all these years on Remicade :) My system got used to it after 1 year. At the end of my Remicade treatment I was on Remicade every 5 weeks and afrer 2 or 3 weeks I would start fever, diarhoea... There are more treatments after Remicade like humira...
Good luck!

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medicine costs(remicade) for crohn's disease in australia

by con
(greece)

hi from greece...i'm con and i've diagnosed crohn disease since 2000...i' m working all this years except the first two months...my medicine is asacol(1*3) and remicade every 8 weeks...i'm planning to go to australia because i was born there and things in greece are going worst...my english are not good and the search i'm doing about medicare ext., is not helping me a lot...if anyone can tell me if remicade is covered by medicare, or how much does it costs for a person with crohn to have all the medicine...or any other information about benefits for people with crohn's...

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Remicade and being tired

I have been on Remicade for about 3 months now. It seems to working although I am still very tired all the time??? Is this happening to others? All I want to do is sleep or lay around. I don't have much get up and go. Very frustrating and I was normally quite active before being diagnosed with Crohns. Am I going to have to deal with being tired for the rest of my life???

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Crohns disease and had a Remicade

How long do you have to wait for to plan a baby if you just had a remicade infusion..?

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Remicade affects at a cellular level
by: Kit Campbll

6 months (apparently) for Remicade to be eradicated from your system, 2 years for steroids such as Prednisone etc.

Every environment you put your body through will affect it at a cellular level, this will include any child that you carry.

Please ... PLEASE, realize that if you are suffering from any gastrointestinal issues, that there is a cause. Find the cause and you will cease all suffering - without the need for drugs.

Drugs are important in some circumstances, but, as someone who had Crohn's disease for 40+ years of her life, operations, medications, I found the 'cause' and it was simple. No drugs are necessary for me now :)

Just take some time to assess what could be causing your body to be in fight or flight, what foods or drink you are consuming. Create some changes, instead of looking for the doctor's quick fix for the current symptoms that are occurring.

Remicade is not the answer.
Trust yourself. Don't only trust a doctor. They certainly do not know everything.

Remember, Crohn's disease is just a name.
Nothing more.
A name for symptoms.
Find the cause, create the change, the symptoms will go away - for good.

I wish you all the best for your journey, a path I used to walk for many years :)

With love
Kit





Getting Pregnant and Remicade
by: DMB

Hello,

The best answer to this question is to talk to your doctor. He or she is in the best position to answer this question.

That being said, we did a little research and it appears that it takes about seven weeks on average for the medication (infliximab) to be cleared out of your system.

However, there are people that continue to take the medication during pregnancy, and there is very little research pointing to the fact that this is or is not potentially harmful.

Again, speak to your doctor, do a little research of our own and determine what your best course of action is.

Good luck.

-CD&S Editor

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Remicade and Crohn's Disease

by Mari
(Texas)

Dr. is suggesting I start Remicade. I've heard of the numerous side-effects. Is it safe?

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Crohns, Remicade and Strep throat

by Rich
(Clovis ca)

My son, 28 yrs. old has Crohns. For the last year or so getting Remicade infusions every couple of months. He hasn't had one in a few months. He has strep throat and can't get rid of it. He's on his 4th round of antibiotics and we're worried his system is down from the Remicade and of course worried about surgery. I think that may be the next step.I hear that removing tonsils is no small matter, i.e., infections, bleeding etc. Anyone have any experience with this kind of situation? Any input would be appreciated.

Thanks and God bless,
Rich

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