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Overview of Remicade

DustyKat

Super Moderator
First off, we suggest you view our wiki enty here: Infliximab (Remicade)

Infliximab (Remicade) is an antibody that attaches to a protein called tumor necrosis factor-alpha (TNF-alpha). TNF-alpha is one of the proteins produced by immune cells during activation of the immune system. TNF-alpha, in turn, stimulates other cells of the immune system to produce and release other proteins that promote inflammation. In Crohn's disease, there is continued production of TNF-alpha as part of the immune activation. Infliximab, by attaching to TNF-alpha, blocks its activity and in so doing decreases the inflammation.

Infliximab, an antibody to TNF-alpha, is produced by the immune system of mice after the mice are injected with human TNF-alpha. The mouse antibody then is modified to make it look more like a human antibody, and this modified antibody is infliximab. Such modifications are necessary to decrease the likelihood of allergic reactions when the antibody is administered to humans. Infliximab is given by intravenous infusion over two hours. Patients are monitored throughout the infusion for adverse reactions.

In August 1998 the United States Food and Drug Administration approved the use of infliximab for the short-term treatment of moderate to severe Crohn's disease patients who respond inadequately to corticosteroids, azathioprine, or 6-MP.

Effectiveness of infliximab (Remicade)

Infliximab (Remicade) is an effective and fast-acting drug for the treatment of active Crohn's disease. In a study involving patients with moderate to severe Crohn's disease who were not responding to corticosteroids or oral immuno-modulators, 65% experienced improvement in their disease after one infusion of infliximab. Some patients noticed improvement in symptoms within days of the infusion. Most patients experienced improvement within two weeks.

In patients who respond to infliximab, the improvements in symptoms can be dramatic. Moreover, there can be impressively rapid healing of the ulcers and the inflammation in the intestines after just one infusion.

The anal fistulae of Crohn's disease are troublesome and often difficult to treat. Infliximab has been found to be effective for treating fistulae.

Duration of benefits with infliximab (Remicade)

The majority of the patients who responded to a first infusion of infliximab developed recurrence of their disease within three months. However, studies have shown that repeated infusions of infliximab every 8 weeks are safe and effective in maintaining remission in many patients over a 1 to 2 year period. Response to infliximab after repeated infusions sometimes is lost if the patient starts to develop antibodies to the infliximab (which attach to the infliximab and prevent it from working). Studies are now being done to determine the long-term safety and effectiveness of repeated infusions of infliximab.

One potential use of infliximab is to quickly control active and severe disease. The use of infliximab then may be followed by maintenance treatment with azathioprine, 6-MP or 5-ASA compounds. Azathioprine or 6-MP also may be helpful in preventing the development of antibodies against infliximab.

Side effects of infliximab (Remicade)

Infliximab generally is well-tolerated. There have been rare reports of side effects during infusions, including chest pain, shortness of breath, and nausea. These effects usually resolve spontaneously within minutes if the infusion is stopped. Other commonly-reported side effects include headache and upper respiratory tract infection.

TNF-alpha is an important protein for defending the body against infections. Infliximab, like immuno-modulators, increases the risk for infection. One case of salmonella colitis and several cases of pneumonia have been reported with the use of infliximab. There also have been cases of tuberculosis (TB) reported after the use of infliximab.

More recently, a rare form lymphoma called hepatosplenic T-cell lymphoma has been described associated with azathioprine therapy for Crohn's disease either alone or in combination with infliximab. Although there is not much known about this disease, it appears to be aggressive and poorly responsive to treatment.

Because infliximab is partly a mouse protein, it may induce an immune reaction when given to humans, especially with repeated infusions. In addition to the side effects that occur while the infusion is being given, patients also may develop a "delayed allergic reaction" that occurs 7 to 10 days after receiving the infliximab. This type of reaction may cause flu-like symptoms with fever, joint pain and swelling, and a worsening of Crohn's disease symptoms. It can be serious, and if it occurs, a physician should be contacted. Paradoxically, those patients who have more frequent infusions of infliximab are less likely to develop this type of delayed reaction compared to those patients who receive infusions separated by long intervals (6-12 months).

Infliximab is typically given to induce remission in a three dose cycle at time zero, 2 weeks, then 4 weeks after that. After remission is attained, maintenance dosing can be given every other month.

Rare cases of nerve inflammation such as optic neuritis (inflammation of the nerve of the eye) and motor neuropathy also has reported with the use of infliximab.

Precautions with infliximab (Remicade)

Infliximab can aggravate and cause the spread of an existing infection. Therefore, it should not be given to patients with pneumonia, urinary tract infections, or abscess (localized collection of pus). It now is recommended that patients be tested for TB prior to receiving infliximab. Patients who previously had TB should inform their physician of this before they receive infliximab. Infliximab also can cause the spread of cancer cells; therefore, it should not be given to patients with cancer.

Infliximab can promote intestinal scarring (part of the process of healing) and, therefore, can worsen strictures (narrowed areas of the intestine caused by inflammation and subsequent scaring) and lead to intestinal obstruction. It also can cause partial healing (partial closure) of anal fistulae. Partial closure of fistulae impedes drainage of fluid through the fistulae, and may result in collections of fluid in which bacteria multiply, which can result in abscesses.

The effects infliximab on the fetus are not known, although the literature suggests that this medication is safe for women to continue until week 32 of pregnancy. At that time, the risk of exposure of the fetus to this medication via placental transfer is increased. Infliximab is listed as a pregnancy category B drug by the FDA (meaning that animal studies show no increased risk, but there are no human studies).

Because infliximab is partly a mouse protein, some patients can develop antibodies against infliximab with repeated infusions. Such antibodies can decrease the effectiveness of the drug. The chance of developing such antibodies can be decreased by the concomitant use of 6-MP and corticosteroids. There are ongoing studies in patients who have lost their initial response to infliximab to determine whether measurement of anti-infliximab antibodies will be helpful in guiding further treatment. Results of these studies are not yet available. There are some reports of worsening heart disease in patients who have received infliximab (Remicade). The precise mechanism and role of infliximab in the development of this side effect is unclear. As a precaution, individuals with heart disease should inform their physician of this condition before receiving infliximab.

While infliximab represents an exciting new class of medications in the fight against Crohn's disease, caution is warranted in its use. The long-term safety and effectiveness is not yet known although recent 10 year data from patients who received at least 1 dose of infliximab for CD showed the safety profile similar to what was previously known. In that data set, the treated patients seemed to have an increased risk of developing infections, infusion reactions, autoimmune reactions, and malignancy5.

http://www.medicinenet.com/crohns_disease/page11.htm

Dusty. :)
 
Way cool.

I can send that to my friend that calls me the rat man since I've started taking this thing.

I guess now I'll be Mighty mouse :)
 
Question about IV`s

I have really bad problems with getting IV`s started. Had them in my feet everywhere! Where do they usually put the infusion site? last IV`s I had were in my neck, they blew the right vein , now only left with a few they can even draw blood from, anyone else have this problem? Do they just do a Central Line ? :sign0085:
 
I have my first infliximab infusion on Thursday(7th June) after 46 years of Crohn's-will my age and years of having the disease make any difference. I know I should probably know after all this time, but I am a recent member of this forum and was diagnosed when it seemed to be fairly unknown (in the UK at least), and I do feel concerned.
 
I am encouraging my doctors to give me a trial of Remicade. Pentasa does not prevent relapses and neither does low-dose Prednisone. A higher dose of Pred will hold the fort but the side-effects are too horrible. Will report what happens but I have high hopes as I have no collateral damage yet from the Crohn's and just need to stop the misery of the flares - which we all know about. A crisis every four to six weeks is no fun so roll on Remicade.

Always liked lots of cheeses so probably OK on the mouse protein! haha
 
I have my first infusion at 8 am in the morning.
I am not sure how I feel but, at the moment my
anxiety is building. I think I am a little afraid and
a little relieved that this might go away for awhile.
First thing in the morning is not a good thing as it
can take awhile to leave the house in the moring.

Lauren
:eek:
 
Good luck. May the force be with you. My docs have now agreed to Remicade and once I have done the TB tests etc. they will start me on it in a few weeks I guess. Will share experience here. I have hopes it will take away (some of) both the gut and spinal/joint inflammation. More scary drugs than I had hoped for but this disease seems to constantly force me to grow up so here we are in the high stakes game. I'm planning to win.
 
Here is an open question for everybody on Remicade and particularly those who have tried Humira too. I will post the same on the Humira pages. I will be offered a choice between these two drugs. It has been presented to me as a simple choice of delivery (infusion vs injection) and with no other differences.

OK, so these are different drugs and will have different success rates with different people. I am planning to go for Remicade first and later I can switch to Humira for self-administartion if I choose.

However, from the guys and girls out there with experience, which is the better bet to start with? Both are recommended to me for both the Crohn's classic stuff and the extraintestinal symptoms of related arthritis.

Please share your experience with me?

Thanks
 
extremely terrified!

I have been diagnosed with CD for 2 years now. I have had problems most of my adult life but wasnt diagnosed untill then. After being in the hospital with an infection in my TI i was treated with antibiotics and entocort, and pentasa for prevention. One year later, more entocort and 25lbs later, colonoscopy number 2, states active flare up 2 spots of inflamation and closest to TI almost obstructed. Waiting for Pathology to come back, dr suggests Remicade or surgery. I have 3 kids, work fulltime, and go to school, I have no time for shenanagins. I have read about this remicade treatment, and honestly feel like im leaning more to surgery...the stuff has some knarly side effects. Need advice!!:confused2::confused2:
 
Need advice please I have to choose between Inflximab and methotrexate. I was dx in sept 2010 have had prednisone azathriopine but reacted badly to both now on pentasa and entrocort but have to come off entrocort soon. Nothing is stopping it only making it thicker and less frequent. Extremely fatiqued.
 
extremely terrified!

I have been diagnosed with CD for 2 years now. I have had problems most of my adult life but wasnt diagnosed untill then. After being in the hospital with an infection in my TI i was treated with antibiotics and entocort, and pentasa for prevention. One year later, more entocort and 25lbs later, colonoscopy number 2, states active flare up 2 spots of inflamation and closest to TI almost obstructed. Waiting for Pathology to come back, dr suggests Remicade or surgery. I have 3 kids, work fulltime, and go to school, I have no time for shenanagins. I have read about this remicade treatment, and honestly feel like im leaning more to surgery...the stuff has some knarly side effects. Need advice!!:confused2::confused2:
I'm right there with you! I have been reading about Remicade and am terrified of the side effects (not to mention the delivery method). GI wants to start me on Remicade this week; Asacol and Prednisone aren't working worth a squat and I am dropping weight at 1+ lb / day! I am going to try it though...surgery seems way more invasive for me - and it has not even been discussed as this is only round 2 of the "Wheel O Meds" guessing game.

I sympathize and hope you come to the conclusion that's right for you. I can certainly let you know what my experience is with Remicade this week...if you're interested.
Just let me know.

Nicole
 
Nicole,
Thank you so much for the reply! It's been a really tough couple of weeks. My doctor said if there is active inflammation the surgeons are apprehensive about doing surgery. So my only option is remicade, as well as imuran. I'm feeling like I'm trading one problem for another. Im super stressed about it and feel like I have no other alternative. My mom and husband want me to be positive and just be gluten free and dairy free and be positive, take it day by day, but I'm a mess. I'm extremely depressed, angry and sad all the time. I always just assumed that the steroids and pentasa would wk. I will be doing my vaccinations starting tomorrow, so I think remicade and imuran start shortly after. I'm also nervous because I was exposed to hpv, a while back before I got married, and I have heard you can have complications with that too.
I'm thankfull for this forum, bc I feel like my husband and mom, the two closest to me don't understand how I'm feeling at all. I work full time, I have 3 kids and just started back at school for nursing. I feel like its impossible at this point to even consider seriously about continuing my education with this new medical development looming. I would love to hear about your experiences if it's not to much trouble! Thanks for everyone's time!i hope this is not coming of terribly feeling sorry for myself!


Diagnosed
Crohns 2010

Meds used that didn't wk
Pentasa, entocort ( has that wked for anyone?!)
Current meds
Probiotics, gluten free, pentasa

Awaiting meds
Remicade, imuran
 
You are definitely not feeling sorry for yourself. This disease is extremely dibilitating in a number of ways. It's easy to slip into depression, especially if your support system is lacking. I am fortunate, my friends are extremely supportive, my family (my mother has had UC for years) and my husband is learning. I do have to remind him from time to time, that he can't "fix" me (though he really wishes he could) and that this is it. I have this disease, there is no cure, there is no "fixing"...there's only managing it. I have to tell him sometimes I just need to lie on the couch with my head in his lap (if that's the only way I can get comfortable), or have him rub my feet to make me feel a bit better. But at least he's open to what I have to say. Don't be shy!! Tell them exactly what's going on and how you feel as best you can. I, myself, am having a particularly rough day today - my abdmoninal pain is undescribable, can't eat...but he knows when I am having a "bad" day my entire mid-section feels like someone hitting it (repeatedly) with a sledge hammer...immediately followed by razor blades.

As for your continuing education...that's up to you and what you think you can handle. In my case, there are days when I can barely get in and out of the shower, dressed and functioning let alone trying to manage a family AND go to school. If, and ONLY if you are up to it...I say go for it (though I could not do it).

I have not found a dairy and gluten free diet to work for me. In fact, the BRAT diet has not worked for me...but others have had success with those. As for being positive; I tend to make fairly morbid jokes with one of my closest girlfriends about this (which she does not appreciate and firmly chastises me for it). I told her if I didn't try to laugh about this, I'd be in tears all day, every day. I tell her UC: best weight loss plan ever!! (she gets really pissy about that one :D )

I have my appointment this morning and a full pre-Remicade lab work up. I will not be stating this week (as the nurse led me to believe), but most likely next week. They need to run quite a few tests including a TB test (which needs to be 'read' 48 hours later).

This forum is great, and I thank the universe every day that I found it. You can be open and honest here - there's nothing that hasn't been seen/heard before. The people here are SO supportive and helpful (I'm new at this too). Don't be afraid to vent, rant, ask questions or have a good cry (I've been doing this a lot lately). Or if you need a laugh, I think there's a humor section too (I haven't been there yet, but I think I'll get there today).

Take a deep breath, exhale slowly, and know that we are all here for each other. One day at a time. I hope you feel better soon!!

Nicole
 
Nicole,
Thanks again! I have decided also to reach out to the CCFA, possibly join a support group.
Please keep in touch!! I really would live to hear how remicade goes for you! Are you doing imuran as well?
 
I'm not on Imuran. Was on 2400 mg Asacol 2x day (now I get to stop that with the Remicade), and am on Prednisone 30mg 1x day.

I wasn't sure why they were going to Remicade so soon - without going through more of the "Wheel - O - Meds" game...but was told I have 'Severe UC' (which just made me cry more today). Completed the pre-Remicade lab work up and go back to have TB test read Thurs. Looks like I will be set for infusion next Mon or Tues. I'll keep you posted on how it goes.

Be well!!

Nicole
 
Nicole,
I'm wishing you the best! I know all about the crying, I feel like that a lot lately too! Your not alone!! I'm here, and your in my thoughts! Please keep me posted!
What's your diet like? I'm kinda struggling w this. I don't really know what sets me off yet?
 
My diet is non existent. Everything sets me off, so I'm not eating much. I was just referred to a dietician, so we'll see how it goes after my appt. Trying to drink as much Pedialyte as possible to aviod dehydration and eating as bland as possible (though it goes right through me).

Keep a food diary and note what you eat, when you eat it and the time it takes from mouth to out. It helps.

Nicole
 
Update: I have had my 2nd Remicade infusion (of the 3 total for the 'induction' phase). At this point in time, I have had no adverse reactions to the drug. I have also not seen outstanding, life changing results yet either. Of the last 2 weeks (first infusion was 7/2 and second was 7/15), I have had 3 really good days and the rest were either bad or marginal. I was told that Remicade takes a good 2 weeks to really start to have an effect, so this week should tell all. My 3rd infusion is set for 8/12 and then every 6-8 weeks thereafter for maintenance.
 
Update: I have completed the full Remicade induction of 3 infusions...and WOW, what a difference! I have not had any side effects (so far), no bad reactions (so far) and am scheduled for my regular maintenance infusions every 8 weeks (next one is Oct 7th). While I am absolutely terrified of needles (my doctor has perscribed me Xanax for infusion days), I have the best nurse who is an expert and gets my IV in fast with minimal pain! The drip takes about 3 hours and with the Tylenol, Benedryl and Xanax...I drift off to sleep usually watching the cooking channel with warm blankets draped over me.

While my symptoms have not totally dissipated, they have slowed down quite a bit and I am able to run again. I was hitting the potty about 15-20 / day and now (provided I eat properly) I am down to about 6/7 trips per day. I am able to go kayking in the afternoons on weekends again, able to swim again...I am just THRILLED at what Remicde has done for me!!!
 
I had my first Remicade infusion on 9/10/12 and my next is on 9/24/12. So far no relief and still very apprehensive about the side effects. I am trying to think positive and going with my Dr's words of "a better quality of life"

Current Meds
Vicodin
Dilaudid
Prednisone
Vitamin D
Pro Biotics
Bentyl

Have not started working on my anemia or cause of my liver levels--trying to get flare under control because I do not tolerate medications very well.
 
It took two sessions and a bit to improve. Cannot get used to going once per day and feeling much better in spirit. I still get very tired but the first week seems to be the best. I am told that the pain decreases over time.

I definitely have a better quality of life. Keep going it should only get better.
 
Scared

I have been on the "med wheel" for awhile. Asacol went right through me....prednisone makes me crazy! You name it I was on it. For the past two years I have been on Humira injections. It kept symptoms away but In November I had bad flare up again! In June, I had a resection, what a joke that was! I have been hospitalized 3x since, with infection, perforation, fever, chills, and on barrable pain! Just has I started to feel a little better....flare up! I thought is was infection but it turns out my CD has turned up in my colon now.

My vains are shot! It to them 5x just to get a pickline started on me! Sometime this week, I should have a port put in and by next week start Remicade treatments. I am very scared, want to function like a normal person again. I cry all the time and when I am not crying I am so angry!

Nicol thanks for your post...it has given me hope!

Current meds:
Humira injections
60mg of prednisone
Belladonna
Flagyl
Calcium
Vit. D
Fish oil
 
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Well I had me 1st infusion yesterday. So far no side effects and no reaction! I'm feeling a little tired and anxious! Praying this works, 2nd part in two weeks! I will keep you posted!
 
My GI has updated my infusion schedule from every 8 weeks to every 6 weeks. At about the 6 week mark, my symptoms started to increase/worsen as the Remicade wore off. They were able to squeeze me in for an emergency infusion (GI said go in 'now') last week and I had the infusion on Thursday of last week. Still no reactions and though it takes a couple of days to really work into my system, it's still great! I had a fantastic day on Sunday 10/7/2012 - only 5 trips all day and ZERO cramping/pain!!! I was able to stand on the Portland Marathon course for 3 hours and cheer on my running friends and all the other runners during the race with no problems!!

Yissa624 and allnew2me, keep me posted on your progress and feel free to PM me at anytime!! My thoughts are with you both (and everyone else) as you go through this process. Remicade has been my wonder drug, and even though I hate the infusions, it has drastically improved the quality of my life!!! I am hoping it does the same for you as it does for me. - Nicole
 
PS: It took the entire "induction phase" of all 3 infusions before I started seeing marked relief, so DO NOT become discouraged until you complete the induction phase.

Hugs!! - Nicole
 
After the third infusion I got to going once a day, an unknown happening for me. Unfortunately after three weeks it is wearing off and increasing. The pain stays with me all the time.

Generally I feel so much better so will stick with the infusions but another three weeks before the fourth.
 
I'm still going 6-10 times and craps! I've only had one infusion so hope hope things get better. Also, doctors is wiening me off prednisone so we shall see what happens!! I go next week for my 2nd infusion, this is my last resort, praying Remicade works!
 
I'm still going 6-10 times and craps! I've only had one infusion so hope hope things get better. Also, doctors is wiening me off prednisone so we shall see what happens!! I go next week for my 2nd infusion, this is my last resort, praying Remicade works!
 
I don't know how far my grandson is into the "Med Wheel" at this time but his doctor has suggested Remicade twice.
Thanks for allowing me to get the flavor of CD from your posts
All of you guys and gals are tough as nails, like Seal Team 6 attacking CD, to be able deal with CD and share with others also.
 
I'm on maintenance!!! Remicade is working great so far and I'm off steroids!!😄 Been eating healthy and going to the gym daily.
 
Nicole - I love your posts! you are so honest - and I need this right now. I am so glad you posted - I am starting my remicade soon - and I have been panic stricken - depressed, sad, angry, have major food fears... and then I read your posts - and I felt NOT ALONE. thank you so much. and I'm so glad the remicade is working for you :)
 
Thanks Nicole for posting this. I have had a flare up of CD after 5 year remission. I have been on Imuran and prednisone for 3+ months... and so far... no improvements. I am thankfully not dealing with any diarheaa (which is abnormal compared to my precious flare ups) but have never ending pain... which worsens at times but is always there. Anyways if the Imuran doesn't kick in by 2nd week in August I am headed Remicade way and have been somewhat obsessing over it. My husband wants me to be more positive but it is hard at times. I feel that if the Imuran hasn't worked yet, it likely won't.

I am so happy for you that this is helping you. All the power to you for wanting to do the nursing thing at school, and all the best to you. I insist on going to work no matter how tough I may be feeling as at least doing something makes me feel like less of a "sick" person and it takes my mind off of feeling crappy!

All the best to you and please keep posting updates on how you are feeling / dealing with the remicade.
 
My son (17 yrs old) just got Dx with Crohn's. I love reading everyone's stories and thank you so much for sharing. The GI put
Him on prednisone right after the colonoscopy. I keep reading about people's "symptoms", flare ups, etc. but my son doesn't have any symptoms? Is it because of the prednisone? I am really concerned that remicade is the doctors 1st choice. No long term data and my son is only 17......... He was totally fine until last sat when he woke up with a stomach ache???? This is so much so fast my head is spinning..... Thoughts from anyone?
 
Nmandy,
My daughter was dx with CD @ age 11.5 - she had absolutely NO SYMPTOMS except poor growth/poor weight gain and anemia. As soon as she was dx the doctors gave us 2 options: surgery or remicade. We started Remicade the next week. She has been on Remicade for almost a year in a half. She feels the same as before we started the infusion - as she never had bowel "symptoms." Since the initiation of treatment (now every 6 weeks) she has gained 38 pounds and looks so healthy (not anemic). The only side effect she had was some fatigue the day of the infusion (most likely from the benadryl pre-infusion medication). She does have Psoriasis now - that occurred when we spaced out the infusions to 6 weeks. The doctors tell us that is part of her autoimmune CD problem.
We also started growth hormones (a nightly sq injection to help with growth). My daughter will be 13 this next month. We plan on continuing remicade. Hope this helps? It's a tough decision to make when you have to sign legal papers stating your child might get that rare lymphoma.
 
Here is an open question for everybody on Remicade and particularly those who have tried Humira too. I will post the same on the Humira pages. I will be offered a choice between these two drugs. It has been presented to me as a simple choice of delivery (infusion vs injection) and with no other differences.

OK, so these are different drugs and will have different success rates with different people. I am planning to go for Remicade first and later I can switch to Humira for self-administartion if I choose.

However, from the guys and girls out there with experience, which is the better bet to start with? Both are recommended to me for both the Crohn's classic stuff and the extraintestinal symptoms of related arthritis.

Please share your experience with me?

Thanks
Humira was not 100% effective for me as I had to stayon prenisone. Remicadee with 6-MP as put me in remission almost immediately after 1st infusion. Only on it 7 weeks so far , but so far , so good.
 
Thanks Nicole for posting this. I have had a flare up of CD after 5 year remission. I have been on Imuran and prednisone for 3+ months... and so far... no improvements. I am thankfully not dealing with any diarheaa (which is abnormal compared to my precious flare ups) but have never ending pain... which worsens at times but is always there. Anyways if the Imuran doesn't kick in by 2nd week in August I am headed Remicade way and have been somewhat obsessing over it. My husband wants me to be more positive but it is hard at times. I feel that if the Imuran hasn't worked yet, it likely won't.

I am so happy for you that this is helping you. All the power to you for wanting to do the nursing thing at school, and all the best to you. I insist on going to work no matter how tough I may be feeling as at least doing something makes me feel like less of a "sick" person and it takes my mind off of feeling crappy!

All the best to you and please keep posting updates on how you are feeling / dealing with the remicade.
swithch to 6mp and Remicadee worked for me. May take a few weeks to a few months for 6mp to start working if not on steroids at same time but hopefully you can wean off steroids till it works. i did well with remicade and not effective with humira.
 
Rejection

My third infusion was rejected three days after. I went into neck and back seizures every time I sat down in a my reclining chair or on the toilet. Frozen for 5 to 20 minutes in pain for 2 1/2 days and then chronic diarrhea to the point whatever I ate came out as it went in. I was about to go to the ER when I called my GI doc's office and they had me go do lab work and then get back on Prednisone. The lab work showed my C-Reactive Protein was at 181, when it is supposed be at 8, showing massive swelling reaction. My physician's assistant kind of freaked out when she was going over the lab work with me, two weeks later and told me I should have come in sooner. I explained that it was the scheduler who did it. She said, when feeling that bad, insist on coming in sooner. I told her if the Prednisone did not work, I was going back into the hospital.

Luckily, Prednisone and Lopermide, anti-diarrhea meds are keeping me in line until my next appointment. My PA also put me on Imuran. I will see one of the head doctors next week and discuss another biologic and possible surgery. I anticipate another colonoscopy to get an accurate pictures before they decide to remove my colon or parts of my small intestines.

Right now, I absorbing better because the Lopermide slows everything down and the Prednisone is swelling me up and causing me to have anger issues at night, when my defenses are at their weakest. I have rarely lost my temper, and this is a strange experience that drives me mad.

I am lucky to be taken care of by my father and a good nature 2 year old lab/boxer mix.

Remicade did work well until my body rejected it and now I feel like I am on a cliff being held up by hormones and anti-diarrhea med. I see the doc next Tuesday. Tomorrow, a mobile lab is coming to my house to draw blood to determine by anti-body response and if I can start a new biologic. Then the following week I do another full blood lab workup to see weather the Imuran is working. I feel like the doc appointment between lab works will mean at most he will tell my to get a colonoscopy and left hanging for another few weeks. I am taking iron, liquid B12 and liquid D3 and potassium. I will start calcium if I am on another month of this crazy hormone that weakens bones. I am just tired of feeling like I am spinning my wheels since my rejection last month.

I took a chance and went to the movies today and missed a few great scenes because I was in the bathroom. But that's just part of this I can't control. My metaphor of riding a bike up a mountain. Sometimes going slow, sometimes like now, having to get off an push my bike, but I will never turn around until I coasting down the other side.

I am happy that Remicade works so well for so many and I wish everyone a quick remission so we can all lead as normal lives as possible.
 
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My third infusion was rejected three days after. I went into neck and back seizures every time I sat down in a my reclining chair or on the toilet. Frozen for 5 to 20 minutes in pain for 2 1/2 days and then chronic diarrhea to the point whatever I ate came out as it went in. I was about to go to the ER when I called my GI doc's office and they had me go do lab work and then get back on Prednisone. The lab work showed my C-Reactive Protein was at 181, when it is supposed be at 8, showing massive swelling reaction. My physician's assistant kind of freaked out when she was going over the lab work with me, two weeks later and told me I should have come in sooner. I explained that it was the scheduler who did it. She said, when feeling that bad, insist on coming in sooner. I told her if the Prednisone did not work, I was going back into the hospital.

Luckily, Prednisone and Lopermide, anti-diarrhea meds are keeping me in line until my next appointment. My PA also put me on Imuran. I will see one of the head doctors next week and discuss another biologic and possible surgery. I anticipate another colonoscopy to get an accurate pictures before they decide to remove my colon or parts of my small intestines.

Right now, I absorbing better because the Lopermide slows everything down and the Prednisone is swelling me up and causing me to have anger issues at night, when my defenses are at their weakest. I have rarely lost my temper, and this is a strange experience that drives me mad.

I am lucky to be taken care of by my father and a good nature 2 year old lab/boxer mix.

Remicade did work well until my body rejected it and now I feel like I am on a cliff being held up by hormones and anti-diarrhea med. I see the doc next Tuesday. Tomorrow, a mobile lab is coming to my house to draw blood to determine by anti-body response and if I can start a new biologic. Then the following week I do another full blood lab workup to see weather the Imuran is working. I feel like the doc appointment between lab works will mean at most he will tell my to get a colonoscopy and left hanging for another few weeks. I am taking iron, liquid B12 and liquid D3 and potassium. I will start calcium if I am on another month of this crazy hormone that weakens bones. I am just tired of feeling like I am spinning my wheels since my rejection last month.

I took a chance and went to the movies today and missed a few great scenes because I was in the bathroom. But that's just part of this I can't control. My metaphor of riding a bike up a mountain. Sometimes going slow, sometimes like now, having to get off an push my bike, but I will never turn around until I coasting down the other side.

I am happy that Remicade works so well for so many and I wish everyone a quick remission so we can all lead as normal lives as possible.
I hope they find the right combination of medicines for you soon.
 
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