Anyone have experience with Remicade? Good or bad...

Hey all, cheers to each of you. I hope everyone is doing well!

I know only a few are comfortable enough to reply on some of these subjects, and many are reserved about their privacy. I totally respect and understand that. Xoxo. But for those of you who don't mind discussing it, I'm tossing this question out there because I would really love to get your input. If you've been on Remicade in the past or are currently receiving the infusions, or know someone who has been on it, etc., I am hoping to hear of experiences and any personal side effects you may have had.

I was on the IV meds for approximately three years, and it did wonders for me. It healed me and saved me from having another surgery and put me back in remission with only minor side effects. BUT, I have been off it for nearly three years now, and I realize it is a HIGHLY risky med to begin with. I also discovered through medical study sites that NO ONE who has been off Remicade for 16 months or longer should ever be put back on the stuff because our risks of severe reactions and fatal reactions are "significantly higher," and it is very dangerous. Everything from heart problems to blood cancers, liver damage, nerve damage, and an entire VERY long list of other horrific things. Yet, my Crohn's is currently flaring like a demon, and my Doc, despite the warnings, is urging me to begin Remicade treatments again by the 18th of this month actually. I am not at all comfortable with this :/

My sweet friends, I am really having a difficult time deciding what to do. 'Yes' to Remicade again, or 'no'? The severe reactions are wild, and the med is still quite controversial. I see it as a 'double-edged sword.' I also discovered legal websites describing in detail the dramatic increase of lawsuits due to the serious and life-threatening perm probs Remicade has caused patients, and they are winning their cases. Not to mention the deaths Rem has caused. YIKES.

If you've had personal experience with Remicade OR if you know the facts about the meds, or simply have a gut feeling you'd like to share, I would deeply appreciate your personal opinions on the matter. Much love to you all! Please stay healthy and well. Xoxo.

~Your Doe

Sorry Doe, but I don't know much about it. I just wanted to acknowledge your question and I hope you get some answers.

Hi PJT   ...thanks,   yeah this has been a topic in the distant past and so many of us generally choose to keep our treatments a bit more private and speak of it on a more private basis, and that is what is happening currently, which is of course great to have suggestions and know of others' experiences even on a private level.....it's handy to compare notes and tips   but I thought I would give it  a post in here anyway, just in case others might also be wondering about the treatment and how others are doing on the med.....we'll see what happens here....this page might be a bit too public and out of some comfort zones, if that be the case I respect that and totally understand.  

I was given some website links yesterday to more lawsuit pages regarding the severe perm damage done by Remicade, Humira and other TNF Blockers type meds....I'm having a hard time weighing the benefits with the possible risks...........we shall see what happens I guess.  Oh well, I'm the type to walk through fire 'n see what happens lol....'tis likely what I'll do.  

P.S. ....however!....MANY patients do VERY well on Remicade and refer to it as their "Miracle Drug"  and in the past, it did help me as well ....it healed me and prevented me from needing another surgery, even though I had some side effects.............so my intent and concern is not to put into panic anyone on this site who might be taking the infusions..........but knowledge is power.........and my personal concern comes into the scene because of the length of time I've been off the meds, my risk of probs is now "considerably higher"......and I do not like the fact that it supresses the immune system, when I have been fighting so long to keep my body strong and eat healthy and do my best to BOOST my immune system.....hmmmm.......well.........I am a guinea pig into this adventure.......I will post what I decide to do and how I am doing when the time comes and if nothing else,  perhaps that will help others to make their own decisions regarding that treatment.........xoxo

Horrible, Horrible drug!! I had my first 3 infusions then at my 5th dosage I went into cardiac arrest!! They immediately shut it off and I have never gone on it again!!! Be careful with it and do not get it infused when you have any signs of a cold!!

Hi horsegurl!   nice to meet you! ....yes, it IS a horrible drug, indeed.....it did help me heal Crohn's issues in the past, but my body is not the same since having been on it years ago.....I was supposed to go back on Remicade this morning and I called and cancelled my appointment for my infusion because I have too many fears and concerns about it, I have been researching it farther and there are SO many red flags and sirens going off in the back of my head ....something telling me to take a bit more time to discuss any other possible options with my doctors......I'm sorry you had a terrible experience while on Rem, I'm so glad you're OK now!!!  That had to have been VERY scary!!!!!!!

Just a couple of sites regarding Remicade facts and Lawsuit info......and cautions regarding choices if one should return to Rem for treatment or not.....yikes.......

https://www.inspire.com/groups/stop-sarcoidosis/discussion/go-back-on-remicade-or-not/

http://www.pharmaceuticalinjuryfirm.com/remicade.html

Hi, Doe.

Have you decided yet what to do about the Remicade?  Has your doc considered Humira?  There might be enough of a difference between the two that the risks are worth it.  I was off the Remicade for about 2 years and started the Humira without too much problems.  I was able to stop it after my ostomy but after being off it for over 2 years I don't want to risk going back on either one.  My GI's looking into a new medication and we're going to talk about it at my appt. next week.  I'll let you know then what it is and any other info I have!

Good luck and hang in there, Doe.  We're all wishing the best for you!

This is a very personal decision and I won't suggest anything to you. I will tell you about my short experience with Humira:
  I thought Humira was a wonder drug for the first several weeks that I took it, and the drug manufacturer supplied it to me for free, which was nice of them. I had two problems with it, I had abscesses that it made much worse. And I noticed it greatly affected my immune system--weakened it--so that I was not doing well resisting colds, pneumonia and such. I went off of it because of the infections. My Crohn's answer was a colostomy, getting rid of the diseased colon and getting off all the meds. I wouldn't go back for anything.
You are in my thoughts and prayers.
Best Wishes.
KBD

hey doe i had 3 infusions way back in 2000 i went very well on the first infusion for 3 months i did then the 2nd infusion lasted 6 weeks and so did the 3rd .So i would say If you got a chance go go go for it But as H.G said yeah i heard that can and has happened they kept on checking my heart and pressure which annoyed the shite out of me until i was told about the high chance of having a heart attack at that time i was willing to try everthing i didnt have my second stoma back but by the end of the year it was back now in australia the infusions are pretty much on the free list but too late for me and i have heard after sooo many infusions it can stop working also done the Humira didnt do anything wonderful my stoma is for life now so my options are no more but as they say ( i dunno what do they say ) hahahaha Good luck doe girl ....mooza xxAustralia...

Yes I am on my 6th infusion,three days ago. My understanding is if it work for you ,you will know! I am still on the fence.I talk to as many people pro and con . I think its like 55-65% success, So it is not for everyone.I had a couple of bouts with kidney stones at the E.R. then a prolapsed stoma.and right now my kidneys I can feel.Is this all related to remicade not to sure.But my options are few,Some how I am trying to think positive and that helps.


      kbd you say you don't take any pills, My advice to you is get in to your GI and get on the proper medication, CD crohns is a autoimmune disorder without medication you are asking for trouble. Just I found out the hard way.

take care

My surgeon told me that when he removes the diseased portion of the bowel some people get Crohn's back in 3 years or maybe not for 30 years. He had one lady who got it back after just a few weeks. Everyone is different. So far so good for me. I'm still careful about what I eat, but thank God the disease is not eating me right now.
KBD

Hi Suz2, kbd, mooza and nogutz   

Suz2 thanks, you are so sweet.....no I still have not gone back on Remicade or have decided what to do at this point, ..I am waiting to be booked to see both my regular doc and my GI specialist to talk about this farther but in the meantime I am just taking Entocort (because my body has strong side effects to Prednisone these days and Entocort is a gentler version of Pred) .... not sure what other options I have, I might need to opt for more surgery, yowza......I have had 5 surgeries so far since I was 10 ....the longest I've gone in Remission from my Crohn's was for 18 years without ANY problems at all.  One thing most of us Crohnies seem to have in common is the fact that when we do have another flare of our Crohn's it always seems to be during a time when there is more stress in our lives, it never fails.

Your surgeon is right kbd, unlike Colitis, Crohn's returns......there is no cure and we cannot get rid of it, it only falls into remission....unfortunately.  We are also very much like "Canaries in the Coal Mine" when it comes to what we eat and our surrounding environment and stress.......our guts seem more sensitive to many foods especially those grown with heavy pesticides and such (which of course is no good for ANYbody) ...and we tend to require more sleep yet often due to our issues we get LESS sleep....and stress will take us down faster than the crack of a whip.

nogutz good luck to you with your Remicade, and anyone else reading this who is on that medicine, make sure your medical team watches your blood carefully with proper testing and I hope everything works out for you!!! xoxo  I have other friends who are also on Remicade whom I need to contact and see how they are doing as well............

....and Mooza is right, studies show that often times, in fact most times, eventually both Remicade and Humira "stop working" as our bodies often build up antibodies to it and the healing effects are lost, ....and only the dangers remain.

Remicade is a powerful and controversial infusion that is made from antibodies taken from the spleens of mice..................that one fact alone concerns me, as Scientists know even in this advanced, yet infantile, stage of medical experimentation, that the mixing of two separate species is never a good thing.

So.......still no new news on this end, until I speak with my Docs.......in the meantime I am trying to cut the stess, am spending more time relaxing on or near the rivers and lakes....and trying to prepare for what might be next.  I will let you all know what the next step will be for me...........also, I will keep watching this thread to see how each of you are doing, I am so glad those of us with Crohn's and similiar probs are able to connect  xoxoxo

~Your Doe

Wounded Doe- nothing says that what happened to me will occur, but I couldn't let your post go unanswered with my experience. At first, Remicaid made me feel great! I even got off of prednisone for a while. BUT, I ended up with medication-induced lupus, which was supposed to go away after a max of 2 yrs; it didn't.  Please be VERY CAREFUL. I tried methotrexate shots after that, they gave me PCP pneumonia and nearly took my life. I ended up having to have my entire colon and rectum removed permanently; left with an ileostomy. After almost 3 yrs, there have been some problems, but I'm able to eat things that I never could before. Although there are occasional problems with the bag and with staying hydrated; life is a whole lot better! If you are a praying woman, please pray for wisdom and discernment before you make your decison. I hope you'll keep posting; we're all in this  together!

Hello godswoman   Thank you for your reply as well, I am always grateful when people jump into the forums with their own experiences and we all learn from the things we all share   ......I definitely decided NOT to return to Remicade,...I am still waiting for my GI doc to return from vacation or wherever he is so that we can speak farther about what to do but I have decided the risks are too high......my Crohn's is a serious issue and threat but the Remicade especially at this point, seems a much bigger threat......still waiting to see what happens.  I am also glad you brought up the subject of Lupus.....I do not have it BUT a friend of mine who was on a number of meds, two of which you mentioned, has now developed Lupus and they believe it is due to all the meds she was and is still on for years :/

....and yes, we are indeed all in this together....it is nice when we can help each other, even if in some small way.....we understand each other like no one else outside our situations can.

Hey!!

I've been off of Remicade for YEARS now, but I was on it for 5 years straight. I personally loved it! It had my Crohn's in remission and I was able to be a human again. Then that one day came while I was getting an infusion I felt a bit light headed and a bit labored breathing, so the nurses stopped it. When this was reported to my doctor they did blood work and it came back that I had built up antibodies to this medication. It was a total blow to me because none of the other meds I had been on thus far had worked so well for me.

Remicade is a very nasty nasty drug, but so are A LOT of medications used for CD. If you're uncomfortable with going back on it ask your doctor about Cimzia or Humira injections. I've been on both first Humira (the sister drug, or so they say, to Remicade), then went to Cimzia, which didn't work as well. Then back to Humira combined with methotrexate injections. NOW the end result, mainly because I hate sticking myself so often with needles, I'm on Humira (which I now testify really does work) and waiting on lab work to come back to start back on 6-MP pills. I guess what my point is if you're uncomfortable with the Remicade there are so many more options to try out first. Let us know what you decide!!! Take care and best wishes!

Hi Doe,

Remicade and Humira and the likes were offered as possible treatments for my severe UC. Did reading, spoke to Drs. ... for me the possible downside of these treatments far outweighed the potential positives. As you say ... I totally got a 'gut' feeling that it wasn't for me ... and I knew I was making the right decision.

all the best,
Beatrice

Remicade was a nightmare for me! I did well with the first 3-4 initial doses, but on the 5th I went into cardiac arrest and they had to stop it immediately. I am now back in hospital for second surgery(the options were to go back on Remicade or had surgery)-obviously I opted for the surgery. Remicade just too risky for me.

Had 1 infusion and had a severe reaction to it. All my joints swelled up and extreme pain. So didn't work for me. My doctor said that it only works on 1 out of three.


MarkP

Hi Doe,
I underwent Remicade therapy twice and I'm sorry to say, it didn't help. I had no adverse reaction that I'm aware of except a persistant cough right afterwards (both times).  They tell me it's great in the treatment of arthritis, but............????? I wish you all the best in whatever you decide..
BEG

Hey me again I still say Im glad i tried it, so sorry i could get anymore but as you guys had some bad experiences maybe i was better off! and this was suppose to happen anyway just more dead end ways to the probable outcome (does that make sence? ) i know i would of had more if it was on our Government cheap $5.60 scheme than the $2000 i paid for 3 infusions my first lasted a long time the 2 nd 3rd were 6 weeks i wonder if it would of got shorter time and then nothing cause i also heard that as well!!! hmm just a thought though....   i always have these thoughts when i see remicade or Infliximab same same !!!!

Have you done this yet DoeY girl xxxxxxxxxxxxx    mare---mooza xxx

Your absolutely right my "Mooze"......Hope your doing well my friend.
BEG

Hey begsy i think i feel well today hahahaha Um gees i meant in that my 2nd and 3rd time lol bloody spell arg..  What ws i right about darl ? I think i had lots of Morphy or i feel well im not sure hoping i feel well instead will see doc 23rd sep this friday hahah Australian time /date OMG its a beautiful day must be goin toodles heheheheheh hope your ALL DOING GREAT XXXXXXXXX ESP...   YOU BEGSY XX   Alien Hahahahahah x..

.....My Mooze....I think you're right about "just about everything" !!
Glad you're feeling better bud !!!!

HI Doe although I'm glad its not me having to go through making this decision I still feel as if it was one of the family, (actually, you are) and knowing what you know, I can see the awful torture this must be putting you through, so no matter what you decide I hope you will share how you are making out, that is if you feel like sharing this personal decision, Ed

Hello i was on remicaid infusions for over a year and it really helped me, and first i had breathing troubles but it got alright after they stopped for a lil bit and then started it back then no more problems.
Paula

Hey all...since my ileostomy in '71, I've been on azulfidine, prednisone, Enticort, 6MP, Remicade; I've had 7 resections, 3 revisions, ? I am currently on Humira, one injection every two weeks. Remicade worked for me too but after awhile I too got the painful joints etc. I lost my sister in 2010. She was 61. She was diagnosed with crohns in 1972 at age 23. She never had an ostomy but , oh well, who is to say? She tried every med under the sun up thru Humira and nothing helped long term. In Mar of 2010, Linda, my sweet sister was diagnosed with stage four small cell cancer.  The oncologist told us, (I was with her and her hubby, Greg when they gave her the findings), Linda had about 18 months. She passed 7 weeks later. She had nothing left to fight with, she was so very tired. There isn't more than a few hrs each day that I don't think of her and sometimes, well I'm sure most of you know what  I wish  at times. Butt, then I found you all and I thank you and so does my Linda.

Hi everyone. II just did my FIRST infusion today....I want to thank you all for freaking the hell out of me!! I had to get Hydrocortisone infused first and did feel a bit nauseous for about 3 minutes then that feeling went away. The rest of the treatment went well. No reaction such as hives, breathing issues, light headedness....Next one is in 2 weeks. I will be waiting and noting every little twinge I do now....was that a palpitation? was that eye twitch a sign????....

Hi everyone; Hey budd. I  have been on Remicade for just over a year [Jan 0211].And things seem good ,as the doctor said I am n great health for a man in my condition. sounds like a bloody lawyer. But he is right, I had a few trips to Emergency in the first 3 or 4 months.I think it was just some tweaking, All seems good and some what manageable, and that in it self is satisfying.I have very little small bowl left, so my energy is still very low.Remicade has given me the confidence or boost I need every day. On one of my last trips to the fusion center I met a young man there and he was in the experimental stage's of Remicade,and is still on Remicade about ten years I am thinking.So it does work for some, and so far it is working for me,and hoping it will work for you too.

Take Care



P.S.  The phone just rang, I hope its has nothing to do with the Remicade!SPAN

I was on it when I was first diagnosed and was on it for a few years. One day while I was getting my infusion I had a heat flash and very dizzy. The nurse said it was my body rejecting it. So it did wonders until my body rejected. I was then on Humira for about six months but it did not help at all. I am now on Cimzia which seems to be a good one for me so far. I do still feel like I am having flare ups lately but nothing compared to before the surgery and while on the Humira or Remicade. I like Cimzia as it is a lot easier then Humira. I was a sissy giving my self the pen. Cimzia much easier to self inject. I would see what the doctor says about that. But I was told by my doctor's nurse that usually once you were started on a Biological like remicade etc, they usually will not go to something other then another biological medication. She said it would be like taking a step backwards. I never heard anything about not being able to go back to it.  Hope this is helpful.
Justin

Hey Osty family xoxo .....well, since I posted this I did end up having another surgery and one nightmare after the next unfolded.......but........I am most certainly NOT going back on Remicade.......the side effects even since I've been off it never went away and in fact worsened.......Remicade is now Black Labeled by the FDA after the FDA was forced to take another closer look at it due to the high rate of ........let's just say 'bad things' and law suits........we must remember also that it is made from antibodies taken from the spleens of mice and it changes our DNA.  I now have what they assume is permanent (obviously such things likely cannot be reversed) neurological damage and other problems.  So please just stay informed with the updates and listen to your body and your own gut feelings on your treatments.......no one knows your body better than you xoxo!  There is current information released stating that more letters went out to Doctors regarding the Black Label that has now been put on the 'drug' and the sharper warnings.  
Please take care!  Your Doe loves ya'll xoxooo