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Crohn's Disease Forum

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It all went ok thanks, the oncoming cold seems to have disappeared and they were happy that my urine dip was clear.
So now I am on the 8 week cycle, it will nearly be Chrimbo when I am next in the chair! Wowzers.
Hope you get sorted soon Sickinlk.
 
I have my next infusion on Oct 15 I call it my spa time they offer drinks and snacks and of course the chair reclines and you can watch Tv they also have wi fi so I can be on the Internet. I am on several other meds for lots of stuff. Tomorrow I am seeing Mg gastro dr about my joint pain and flushing. The joint pain makes me afraid that I am going to end up disabled because it is so bad.
 
My next appt is on Oct. 25th. It will be my 5th infusion.

i signed up for the Remistart card and received it, but they declined paying for my first 3 treatments becuase i received them for I received approval for the remistart program. That really stinks, because i am charged over $1000 per infusion AFTER my insurance. I figure i will just make payments for the rest of my life if i have to.
 
My remicade is officially on hold until after I see if the remicade is causing my joint pain and can't see that Dr until Dec 6. Frustrated beyond belief also found and umbilical hernia and see the surgeon on Oct 17.
 
Cathie, the very same thing happened to me. It was the Dr.'s office staff who never told me anything about the RemiStart program. I nearly had a heart attack when I received the first bill. I applied one day too late for them to cover the 3rd infusion but I called them and explained and they at least allowed that one.
 
Going for tests to see if eligible for Remicade or Humira and my GI wants me to choose which one. leaning towards remicade as I don't want to do injections.
 
Hey everyone,

Well, after spending the last couple of weeks in severe UC flare-up after four years on Prednisone, I finally caved and accepted Remicade. My first infusion is exactly two hours from now. I'm pretty nervous about it as I've had terrible reactions to everything else the docs have tried so far, but after reading all the positive stories on here about it I'm hopeful.
 
Good luck to you all!! I'm hoping you'll find relief with this medication. I'm getting my next treatment this Saturday :) I've been getting it for over 3 years and I still get nervous!!
 
yay got the go ahead for my 2nd infusion finally after postponing it for 3wks. all bloods ok and free of infections.
hope nowt goes wrong as i have a hen party on sat night.

ju
 
Remicade count down and now a cold!

Hi all.

I'm supposed to go in for my first remicade dose on Tuesday and now have a cold, it's in my chest and am coughing up green phlem (sorry, gross).:frown:

I don't feel all that bad but am afraid they will tell me I have to wait because of it. I'm trying to decide if I should call the doc this morning, so that maybe I can get treated if need be and stay on schedule for the Remicade.

Any thoughts?
 
It seems a lot of you are new to Remicade. I have been suffering with crohn's disease for 12 years and have been diagnosed for 10 years. I was on Remicade for about 5 years. When the treatment seemed no longer effective I switched to Humira. It does not have the same side effects as Remicade. Remicade I had to take time out of school and work. The treatment made me sleepy and irritable. Humira shots have never interrupted my daily life. I have been in remission for many years. I have had three surgeries and too many hospital visits to count. I started having symptoms of Crohn's disease at age 13 when I was out of the country on a missions trip. I was diagnosed through emergency surgery at 15. I am now 25. There is no family history of autoimmune or digestive disease in my family. Has anyone else developed Crohns symptoms while out of the country?
 
There is no need to be nervous about a remicade infusion. The nurses monitor closely. If you have a reaction or feel like it is hard to breathe tell someone right away. they will most likely inject you with steroids and benadryl to control the reaction. That was my experience. I had a steriod and benadryl injection before every infusion and never had a reaction.
 
FINALLY got approval from my insurance company to go ahead with Remicade (they messed up my paperwork twice = crazy delays!)... So now just awaiting everything to get setup for my first infusion... A little bit nervous, but also quite excited!... A bit concerned about any possible side effects or reactions, but I guess it's just a wait and see :)
 
Had my umpteenth infusion this past Monday....all went well again.....only 'side effect' is the bruise on my arm from the IV site! I did stop back at the clinic the next day and pick on the (new) nurse who stared my IV...told him he beat up on me! lol...

hmm...maybe I'll go back and see how many infusions I've actually had.....have 10 minutes before I can leave work!
 
Chest Cold

:sign0085:

Hi all. I talked to my doc yesterday and if this chest cold isn't cleared up by Monday I have to postpone my first treatment.

I am so frustrated and my pain is escalating again. But, I'm writing to ask if anyone has advice. I am not running a fever, which is good. I'm drinking tons of water, on soft/liquids and resting.

I'm taking musanex but not much else, other than my regular crohn's meds, Pred, Asacol, vicodin for pain.

I'd do orange juice, but I might as well drink battery acid! :eek2:

I guess I'm asking for a miracle cure so I can get my treatment on Tuesday.

I really want to stay positive, but it's getting harder with each new development. At least I can come here and talk to others like me, I always thought I just had to deal and wasn't gonna get better, and now I'm wondering again.
 
Hi Margarite, If your nose is involved I used Zicam spray. It really helped me breath better, stopped the drip, and I'm pretty sure it shortened the length of my cold. Your comment: "I always thought I just had to deal" is what it was like for me too, and I'm trying to work myself out of this method of thinking. Doing better on Remicade since February. I hope it will be better for you too.
 
Thanks Judith!

For so many years my doctors treated me like it was a mental health issue, not a physical one, which gave me mental health issues lol

I can't tell you how much it helps to finally have hope, even though I'm struggling with mood swings and feeling discouraged I am doing much better just having options.

I am really hoping I won't have to postpone my treatment I need to get better and get back to work, I've been on leave since the 28th of September, which I know isn't long, but I don't want to use up all my time, I'm afraid of not having time if I run into more issues with treatment or if they can't get this flare under control.
 
hingrum said:
It seems a lot of you are new to Remicade. I have been suffering with crohn's disease for 12 years and have been diagnosed for 10 years. I was on Remicade for about 5 years. When the treatment seemed no longer effective I switched to Humira. It does not have the same side effects as Remicade. Remicade I had to take time out of school and work. The treatment made me sleepy and irritable. Humira shots have never interrupted my daily life. I have been in remission for many years. I have had three surgeries and too many hospital visits to count. I started having symptoms of Crohn's disease at age 13 when I was out of the country on a missions trip. I was diagnosed through emergency surgery at 15. I am now 25. There is no family history of autoimmune or digestive disease in my family. Has anyone else developed Crohns symptoms while out of the country?
Click to expand...

Although I can't say if the trip caused Crohn's disease, my symptoms started while I was in Spain.
 
Today is my last day on 5mg of Prednisone! Tomorrow will be my first day of no prednisone in over 3 months.

Finally down from 40mg! Remicade had done wonders for me! I hope everyone else finds relief as well whether with Remicade or something else.

Just thought I would share my success.

2
 
Niklovely said:
Although I can't say if the trip caused Crohn's disease, my symptoms started while I was in Spain.
Click to expand...

The trip didn't give you the disease but stress could more than likely started a flare. Stress is a major trigger for me.

As a matter of fact my start happened on a trip. We thought for almost 2 months that I caught something there... Later to find out it was my new disease. :banghead:

2
 
good luck chattertess. dont worry you are in the right place if anything happens which im sure wont. i had relief over night so hope the same for you.

ju
 
Hi everyone. My doctor has recommended that I begin Remicade soon and I am getting pretty nervous. I was recently hospitalized due to small bowel obstruction and small fluid leakage and was put on Entocort when I was released. My symptoms since then have stabilized, however, my doctor is afraid that it'll get worse when the steroid course is finished. I have been reading though the thread here and found some pretty useful question to talk to my doctor. But now I am thinking that maybe my symptoms aren't severe enough for this medication. Or maybe that's just because I'm currently taking the steroids. Before that treatment, I was in pretty bad shape. I'm just really nervous. But thanks everyone for the wonderful posts. They've been helpful.
 
Finally have everything sorted to start Remicade, and my loading doses have been scheduled! :D

I could have had my first appointment on Friday, but due to a UTI, I have to wait until 10 days after my antibiotics to start :(... so November 1st will be ther first dose! Fingers crossed for some good results :)

@Housemouse -- I was and am kind of in the same boat. I never understood how my symptoms could have been severe enough to be on Remicade. I don't have many of the symptoms that seem common, mostly I just have abdominal pain. I guess we all respond differently however, as my Doc said my Crohn's is quite severe, and is also currently fistulating to my bladder. Just a sign I guess that the symptoms don't always reflect the severity of the situation?
I am pretty nervous to start Remicade as well, but from what I read from everyone else, it seems to be generally seen as a "wonder drug"... so hopefully we both will get some good results out of it!
 
@this is me

Yeah i also have mostly just abdominal pain these days. good luck with your treatment. i'd like to know how it goes for you! :)
 
hey everyone
getting my 3rd infusion tomorrow. Doing really well on the remicade, completely of the prednisolone now. Its great cos i was having a horrible time on them. I too have had a great success with remicade so far, long may it last!
 
Question for you all...

I had my first dose of remicade on wednesday, and as of yet I've had no changes at all...in fact I've had a really bad flare up today. Does it sometimes take a while to kick in, or is this a sign I might need to consider another treatment or something alongside? I know sometimes things take time, but from what everyone has ever said to me about it they said it was pretty quick to kick in.

Hope you've all had a good weekend x
 
well the nurses told me that everyone was different and it was the 3rd or 4th infusion for some people before they really saw the benefits.
 
I am sorry you are sick. But, being a veteran of 4 treatments
now I can say you do not want any other illness when you start
Your treatmensts. I felt run down and very achy the first time

Reevaluated my pre meds and I took Tylenol for a week following
All my other ones. I was not prepared to be sick to my stomach
A few days after my first treatment I now has phenergan at home
But haven't needed it again.

You just don't want to start behind the 8 ball!
M

Good luck


Lauren
 
Haven't started yet, but have 2 questions. Done some reading and find alot of people on remicade also take methotrexate or some kind of other immunosuppresant ... are you guys doing that? And also, does Remicade suppress our immune systems?
 
Hey Spinnychick!
I haven't started yet either (my first infusion is November 1st)... but I can kind of answer your questions! My GI has put me on Imuran (Aza) which she said is also an immuno supressant to use in combination with Remicade... she advised that there are a lot of studies that show they can be more effective if used together. She gave me the option of either using Imuran or Methotrexate, but advised me I was best to use Imuran given my age, and the things you need to do with Methotrexate should you decide to have children. (I think she said you need to stop 6 months before you start trying, and then have to be off of it throughout the pregnancy etc...). Im not trying to get pregnant anytime soon, but she just said she doesn't like to give it to women my age for that reason.
Remicade does suppress the immune system as well... so to be honest, I feel like I might as well just not have an immune system for the time being!
 
THanks so much for your response Thisisme. So new to this disease, and so many questions. I should be starting remicade after my wedding/honeymoon cruise, so mid November, so we'll have to keep in touch about each others progress. I was on methotrexate for 3 - 4 weeks and then when my GI said we were going to try either Remicade or Humira he said I could stop the methotrexate, which confused (and still confuses me), because like you said and so much of what I've read, they go hand in hand well together. Thanks again!
 
Just a question for everyone. I've been on remicade since august now. I've had my three loading doses and will have my 4th infusion in a little less than a month. I've noticed some negative symptoms, that I wonder if they are in correlation with the treatment.

I know CD and joint pain go hand in hand, but I never really had bad joint pain until lately. My hips are horrible, as is my lower back. I'm also having quite a bit of shoulder pain. I guess I ache nearly everywhere, and its deep pain, if that makes sense.

I've also been having a horrible time sleeping. I sometimes go days, even with ambien. When I do sleep, I wake several times and have horrible night sweats. I wake up covered in sweat, wet hair and all...but I feel cold! Freezing really.

Have any of you experienced these things with your infusions?? Do they get better in time?? And what have you been prescribed for joint pain?? My GP knows nothing about CD, and my GI team is 4 hrs away from me...I don't really feel I ever get concrete answers, and I don't always know what to ask, or what's important to mention when I do travel to see the specialists.
 
Hi all just wanted to post about the good hat remicade had done or my son he is 6 and was ex in september , he has had 3 ops already for fistulas and countless abscess,s so with a lot of research and sol searching we agreed to the infusion , and boy do we have our son back he's only had 1 infusion but were hoping things will continue, big up the remicade club.x
 
@ j.bug ... i haven't had any joint pains, but read (and worry) about it all the time. I completely relate to what you say about not knowing what to ask and how your family doctor knows little about CD. It's hard and frustrating. I find I am guiding them more than they are guiding me. I do alot of research online, and then I ask for tests, etc. Unfortunately, I've learned over the last few months that taking some ownership/control of our own healthcare is necessary (and overwhelmingly confusing). I usually keep an ongoing list of questions to bring in each time to the doc. Hang in there!
 
@spinnychick, I do the same thing!!! Even with my list, I have a hard time getting any new info from the visits. My gi team is one of the best in the state, so I'm not the only one traveling 4 hrs to see them. It seems I see the doc for 5 mins each appointment. I talk to my rn much more than the docs. But I'm not the only one in the room confused either! My doctors don't know what to do for me as I am their first crohns patient with crohns of the esophagus. Its all trial and error.

As far as the remi infusions, I am sure that they are slowly healing my ulcers, and it some ways I feel leaps and bounds better! Its just this damn joint pain and insomnia/night sweats. If I can't sleep because of one, its the other keeping me awake.
 
@j.bug - I feel the same with my appointments, like I have a 30 second panic to ask as many questions as possible and try to remember what they say. I never get through them all, and have to prioritize them lol. Sorry to hear your CD is in the esophogus, I think mine is in my colon only, not really sure. I've had 3 colonoscopies since May and don't know if he's been able to get all the way through. Do know that I still have ulcers though. Have been off pred finally for a few days and my insides sting/burn quite a bit. Don't know if anyone else has this or not. I'm also learning how "awkward" this disease is. Like I look fine from the outside, so people of "forget" that my insides are pretty sick. And so many people think I can just change my diet and everything will be perfect. But for me, this disease is with me every day. Like every morning I wake up, weigh in, and then wait to see what pains/twinges/etc I'll have that day and whether it's a craving/eat alot day or a non hungry day, a tired day/an energy day, etc. Are your days completely different like that?
 
100% I never know from day to day, or even hr to hr. Its so hard to plan anything. I also have CD in my terminal ilium, and so I'm no stranger to the gut pain. Up until this last month I was on dilaided for pain. And I never know with food. One day something sits just fine, the next it tears me apart inside. I was on pred for a few months, and managed to gain some weight back. After I lost the moon face, everyone thought I looked healthy again. People can't see the pain, and the torment going on inside our bodies. Last week was my sisters bday, we all get together and go out to a restaurant chosen by whoevers bday it is. She chose authentic mexican! Lol! I think I needed the restroom just thinking about it!!!! But the most frusterating thing for me is the drs with a God complex. I've been in the ER several times due to intense pain. I've actually been told that crohns doesn't cause pain like that. They treat me like a junkie looking for a fix. And as much as my husband loves, and supports me, heaeing a dr say this, makes him think maybe the pain is in my head. I would not wish this disease on anyone, but definately wouldn't mind letting some people walk in my shoes for a day or two. Hell, a week!!!
 
I'm only 5 months into this disease and don't even know what is normal yet, or what remission will be like. What worries me most is once I get back to "normal", how do we know if we are having a flare and when to seek medical attention. I never got moon face from the pred, but my family doc prescribed me diuretics to take down the water swelling. I asked my GI to renew the prescription and he wouldn't, so I don't think family doc should have given me those lol. As far as eating, I eat EVERYTHING, but I'm not healed yet, so can't really tell if anything triggers anything or not. I know I fill up alot faster, like get full easier. I hope I don't have to change my diet/eating too much, I love food. Crave meat ALOT since this though, like drool over it in the grocery store, it's gross haha. BTW - love how you and I have totally started a convo and temporarily taken over this forum, good chatting :D
 
Lol, me too! Its awesome to be able to talk with people who know what weare going through. That's why I love this place. I've had symptoms for about 15 yrs now. I was misdiagnosed as IBS. This past may they diagnosed the CD. I've been flared for almost 4 yrs. I've forgotten what it feels like to be healthy. I am on so many meds, so many times a day. Its annoying, but they help. I'm about a month away from my 4th remi infusion...I still get SO nervous! My biggest worry is going backwards
I know the remi is slowly working, as my inflamation levels have been going down, but I still have a lot of healing to do. I would venture to guess that you will be told that you need to change your diet atleast until you're in remission. I've been put on 'smoothies' 2-3 times a day. They consist of boost plus, protien powder, and benefiber, with a bit of fruits or veggies. They're terrible. But until I heal, they want me on high cal, high protien, easy digestable food. I even have to take liquid meds. From what I've read though, once you reach remission, you are able to eat again! People have different triggers, and its all about learning them. I swear, when I am able to sleep, I dream of remission!!! Lol! I'm curious, how is your iron level? Your meat craving makes me wonder if you are deficient in iron. I know without supplements I am iron anemic, and I crave red meat like nothing else!
 
How did they misdiagnose and what led them to changing the diagnoses from IBS to CD? Flared for 4 years, yikes! What is a “flare” anyway? Like is it pain/blood/diarrhea .. is that a flare? When we don’t flare will we ever just have one normal bowel movement per day, does it ever go back to that? The frustrating thing about the meds for me, is I take one and then I have 3 others to counteract the side effects. I’ve got meds for pain/nausea/water gain/anxiety/etc all resulting from meds lol. Do you know your inflammation is down from blood test results? My iron level? Hhm, my GI told me a couple months ago to stop taking iron supplements because it was high. Funny thing was I wasn’t even taking iron, I had major beef cravings and was inhaling burgers daily. Last I saw him he told me to take iron. So I guess it went down. He comes highly recommended but doesn’t tell me crap about what vitamins or supplements to take. Also doesn’t tell me any results of bloodwork, colonoscopies, tests, etc unless I ask him. What vitamins/supplements do you take on a daily basis? And ew to Boost and Ensure, they kept bringing me those in the hospital and I hid them lol. BLECH!
 
Lol! Right?! They are a part of my daily life now. I suppose that's better than a feeding tube. I had an ng tube for a while, that was awful. I believe a flare is when you are showing symptoms of the disease. Inflammation, ulcers, fistulas, etc...I have blood levels drawn weekly right now. I also go in for iv fluids and a banana bag weekly. I have a horrible time time keeping food and fluids in. With the crohns in the esophagus, I throw uo a lot. And eating or drinking hurts like hell. What I do keep down, goes right thru me. My blood levels are how I know the inflammation is slowly subsiding. There are two levels they check to track my progress. I will need scopes again soon though. I was misdiagnosed when I was pretty young. I had scopes done, but no biopsies. I finally got to a good team of drs. They scoped ne from both ends and took biopsies thay confirmed CD. At the time, I had ulcers from my throat, down my esophagus, in my stomach and in my yerminal ilium. They told me I had more than they could count. It was a rough time!!!
 
Oh, if that’s a flare I think I’m in perma flare since diagnosed in May. Just went to the bathroom and blood again sigh. Don’t understand how blood can be here now and next time I go it’s gone. I remember when I went into emergency it was BAD BLOOD. No pain though really. I think my GI is ordering monthly blood tests, was on weekly while taking methotrexate. Ugh to you throwing up, I haven’t thrown up at all so far thank goodness. I’d rather have it coming out the other end so to speak. Nausea sucks big time. What in the world is a banana bag? Wow, I can’t imagine having ulcers all the way down too, that must have been horrible for you. I’m glad you’re healing though. Do you think it’s the remicade that’s helping?
 
I do think its the Remi. That and the other meds they have me on. Pentasa really helps with the frequency of my BMs. A banana bag is what they call IV fluids filled with vitamins and stuff. I am not absorbing them in the food I eat, so I have to get them via IV. They make me feel a lot better. When its coming close to needing another bag, I am pretty weak. You are starting Remicade soon right? I have seen so many success stories on here, that I am hopeful the Remi will kick my CDs ass!
 
Ya, I've only seen success stories with remicade too and very little mention of any side effects. What is normal frequency of BM for someone in remission? Do you have to go to the hospital for the banana bag or a clinic? And where do you go for the remicade? Here, I will go to a clinic and heard it takes 2 hours-ish. I hope to start mid November when I'm back from my two week cruise. Don't wanna start before then just in case.
 
I have to go to the hospital for it. They have an infusion center in the hospital, and thats where I go for all of it. Unless I am dehydrated when the infusion center is closed, then its the ER. I would say it takes more like 3 hrs. It takes a while for the med to come from the pharmacy (they dont mix it until you are there, and its based on your weight) Then they have to start the IV. The actual infusion will take about 2-2 1/2 hrs. They go slow the first time, and check your vitals like every 15 minutes. And after the first time, they keep you there for an extra hour or so, to make sure you're ok. I still get nervous before every infusion, but I also look forward to them.
 
I guess I'm nervous because of what the drug is. I am semi ocd...before I started Remi, I read everything I could about it. Just knowing what it is, what it can do, and the potential long term side effects, scares me. You can also have reactions at any infusion. Just because you were ok for infusions 1-3, doeant mean 4 will go just as well. And I get excited because the potential for remission. This drug may have scarey side effects, but it may heal me. It could be my magic bullet! The benefits outweigh the risks for me! I just wanna feel well again.
 
Wow. Don't wanna sound naive, but I haven't really come across any potential side effects. Haven't seen much about reactions either. Long term side effects? Spill the beans lol.
 
There is a small chance of cancer.....small! Also a chance of becoming allergic.....which isnone reason they monitor closely. When i go, I get there at twelve thirty, am usually hooked up by one and out about three thirty.

Only real 'side effect' I feelnis tired that evening - but I get benadry just before the infusion and that wipes me out.

Oh - for reference I have had about 47 infusions!!!!!
 
pasobuff said:
There is a small chance of cancer.....small! Also a chance of becoming allergic.....which isnone reason they monitor closely. When i go, I get there at twelve thirty, am usually hooked up by one and out about three thirty.

Only real 'side effect' I feelnis tired that evening - but I get benadry just before the infusion and that wipes me out.

Oh - for reference I have had about 47 infusions!!!!!
Click to expand...

I definately feel wiped out the day of the infusion. I was also told to plan to do nothing on days of the infusions, that your body reacts much better if you just take it easy. I get benadryl and tylenol before each infusion too. I guess part of my fear is that I do develope drug allergies frequently. And I have actually had a med burn my veins (you could see them popping up and turning this awful shade of purple) the iv line had to quickly be flushed and then followed with benadryl.

I'm glad you posted on here pasobuff! 47 is a lot of remi experience. I was wondering about remi and some side effects. Have you experienced any joint pain? My joints have been horrible, and I'm new on the remi, so I'm unsure if that's why, or if its my CD. I have also been experiencing night sweats and insomnia. When I do sleep, I wake up covered in sweat, but freezing cold. My drs are 4 hrs from me, and so I don't get to just go in and see them about these things. It usually takes a month or more to get in, so I was hoping for some feedback from others on remi! :)
 
So, guessing to take that day off work the day of infusion? Did you take tylenol and benadryl on your first injection, like did you bring your own, or did you learn you needed it and brought it for #2. Can't imagine how horrible it must have been reacting to a med burning your veins ... ugh. :O(
 
It was scarey as hell!!! My nurse saw it and ran for the dr. But once it was flushed out, the pain stopped. As for the tylenol and benadryl, I think its pretty much standard for them to give it to you when you get there. I know you can refuse it, but I guess I wouldn't. For me its always just been 325mgs of tylenol, and 25mgs of benadryl. I would definately take the day off from work. Make it a day to just relax a lil :)
 
My next infusion is nov 20th. I wish it were sooner!!! I'm now on the 8 wk schedule. Before my first infusion, I was really scared. I got advice, and was told what to expect here, on this forum. I'm glad I was able to pay it forward. Now I can't give you the kind of advice that 47 infusions can, lol, but I certainly want to help where I can!!
 
j bug....be sure to tell the doctor about night sweats. I have also had a lot more joint pain, at first my joint pain that I had prior to remi went away, then this new joint pain came, and it is more fierce! My sinus congestion seems a lot worse too, not sure if that is coincidental or not, when I sleep (or try to sleep rather), I feel like my head is filling up with fluid and its such a weird feeling, I toss and turn. I have an appt with GI dr this week, I think we are going to change from remi to something else...I have only had about 6 infusions so far. Don't know what we will change to though, I'm latex sensitive, so humira is out because of latex in the needle or something.
 
Sandy A said:
j bug....be sure to tell the doctor about night sweats. I have also had a lot more joint pain, at first my joint pain that I had prior to remi went away, then this new joint pain came, and it is more fierce! My sinus congestion seems a lot worse too, not sure if that is coincidental or not, when I sleep (or try to sleep rather), I feel like my head is filling up with fluid and its such a weird feeling, I toss and turn. I have an appt with GI dr this week, I think we are going to change from remi to something else...I have only had about 6 infusions so far. Don't know what we will change to though, I'm latex sensitive, so humira is out because of latex in the needle or something.
Click to expand...

Oye....I'm sorry! This sounds like me, aside from the latex allergy. I'm actually limping around like a lame dog today. My hips and lowee back are killing me. I once again did not sleep. But I felt like I was lying in a bath I was so sweaty. My drs don't have many options left. They've talked about a stoma...I am too afraid for the remi to not work. I know I am too young for this pain though. I need to get something figured out.
 
j.bug said:
How are you today spinnychick? Excited for your cruise??! Not gunna lie, I'm a lil jealous! I need a vacay!
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Super pumped for the cruise, been planning it for 14 months. Getting married onboard with 30 friends and family and then they all get off after a week and we stay on for another week and go to different ports. Aside from all that, I'm excited to be OFF MEDS for the whole time. No clue what the doc is thinking, but he took me off everything this week until I'm back and start remicade. I can feel my body not liking it so much, but after 5 months on pred, want to have the break and see what's left of my body in "normal form". I am taking an emergency supply of pred that he gave me just in case.
 
Oh I hope you don't flare badly!!!! No meds scares me now! Lol! How exciting that will be for you! It sounds amazing. I always wanted a hot air balloon wedding...I got a traditional catholic wedding! Lol! I'm not even catholic! The hubby and I are going to renew vows every 5 yrs, so maybe I will get a hot air balloon yet. I heard of this couple that has been traveling for months now. They are going everywhere, and getting married in every country they visit! How romantic is that?!! Could I stow away in a friends luggage or something??? A week is all I need!
 
We'd love to have you aboard! And that sounds crazy romantic renewing vows in a hot air balloon. How long have you been married? No meds for me scares my fiance, he's watching me like a hawk and nagging me and I wanna pop him over the head lol. There are soooo many people that take nothing, that live normal lives and they all think it's nuts that there are some of us on meds. I know every case is different, I wish they would understand that. There's one lady that's coming on the cruise, retired nurse and her daughter has CD, had surgery 20 years ago and is now fine. She nags and nags and nags me about what to eat, how to live, what to do, what not to do and I want to tell her to shut the heck up lol. I do need to politely tell her pre cruise that I do NOT want any more medical advice, I am not the same case as her daughter and to back off and let me enjoy my vacay ... drinks included lol.
 
Yes, and stress wont do your body any good. Every case of CD is so individualized! I'm glad ur fiance is watching you so closely though, shows you got a good one!!! I haven't been able to drink in years now! I don't miss the hangover, but I wouldn't mind some champagne! Once I hit remission I may have to chance it a time or two! We've been married 4 yrs this coming valentines day. He is one of the strangest people I know! And that's what made me fall in love with him! We've been together 6 yrs now, I've been sick for most of them, the mans a saint, I swear!! How long have you been with your fiance? Weddings are so exciting. Mine whirled by me, and I barely remember it! So savor every second!!
 
So the last time I got remicade I broke out in hives. I didn't feel very good and I returned to the clinic. They gave me benaydrill and a steroid injection. Did they administer this to fast?
 
We've been together 2 years. Mine's been a saint with this too, he takes me to every appointment, has seen me at my worst, and as much as he nags, he also allows me breathing room to feel normal. That's exactly what I don't get. You say you can't drink. People say they can't eat raw veggies or popcorn or milk. What happens? I just eat/drink everything and don't get any crazy reaction. How do you know if your body doesn't like something if your body is already sick and having diarrhea?
 
For me, I have lots of food triggers. I'm on these horrible 'smoothies' now. I can't eat popcorn, raw veggies, raw fruit, spicey food, greesey food...etc. I get horrible pain while my body tries to digest it. Its too hard on my bowels. I have a highly altered anatomy to begin with, (I had a gastric bypass surgery, and have had resections) so the food also goes through me very quickly...like less than an hr. And the foods thar are hard on me, come out looking the same way they went in. Like they literally just pass right thru me. Alcohol is horrible on my ulcers. I've had some bleed after a night of drinks. So I stay away from it!!
 
I honestly eat everything and drink everything, maybe that's why I'm not healed? But nothing seems to "trigger". Once a carrot came out undigested, but that's about it. Aside from that I often see lots of floating fun undigested, but never feel pain or sick or anything. I know after one drink now I become sleepy, but that's about it.
 
I've read, and been told by my gi docs, that while you're trying to heal, you should eat an easily digestable diet. Its easy for me to stay away from triggers though. I have CD in my esophagus too, so eating or drinking anything, at all really, feels like I've chewed up razor blades and swallowed them. I've become afraid of food. I am prescribed lidocaine to drink just before eating or drinking, but that doesn't help much, and only for about 5 minutes.
 
Wow, I'm sorry for all you are going through. Must be really frustrating. I'm hopeful and optimistic that Remicade will be a wonder drug for both of us!!
 
Me too!!!! I've read so many success stories! It has started to lower inflammation, so it is doing something, certainly slower than I had expected though. And don't worry about me. I can honestly say I have been a lot worse, and even then I've known some have it much worse than me! You learn to cope with the hand you are dealt. Its all about attitude. I strongly feel that your mind can help or hinder your body. Not to mention, I have an amazing support system in my family, and have found one here on the forum!!!
 
Less inflammation is a good thing, I'm anxious to start monitoring mine. My GI has me going for monthly blood tests once I start the remicade, any idea if it's best to go before or after infusion and how long before or after? I agree about accepting the hand we are dealt with. I remember at first so many people were saying "sorry" like in a funeral sort of way. CD sucks, but is manageable, isn't terminal, so I look at it like that. Plus, i got to go shopping for a whole new wardrobe lol, always look on the bright side. And yes family and friends are great to have as support :O)
 
Lol! Yep! When I was first diagnosed, I was very bad. I was in the hospital, listening to this dr tell me what my future would be like...and I started crying. The dr said to me, 'you are the first generation that this disease is not terminal. Had you been diagnosed 25 yrs ago, we would have told you you were terminal' that put things in perspective for me. We do have treatments to help, and people achieve remission. Just can't give up!
 
Remicade was a great med for me.......for a while. I was getting IV'd every 8 weeks. After about 2.5 years, it just stopped working.
 
Jer said:
Remicade was a great med for me.......for a while. I was getting IV'd every 8 weeks. After about 2.5 years, it just stopped working.
Click to expand...

I've read of that happeneing. Its been slow going for me. My 4th infusion is nov 20th and I still have major symptoms. Though, I have been flared for almost four yrs...and there's a lot of damage to repair. My blood levels show that my inflammation has been slowly subsiding. I'm terrified of it not working. What do they do for you now?
 
j.bug said:
I've read of that happeneing. Its been slow going for me. My 4th infusion is nov 20th and I still have major symptoms. Though, I have been flared for almost four yrs...and there's a lot of damage to repair. My blood levels show that my inflammation has been slowly subsiding. I'm terrified of it not working. What do they do for you now?
Click to expand...

Well, I hope it works for you. The only real side affect for me was it made me really tired for a day or two after.


As for me, well........thats the question. What do they/I do now? lol

I'm currently on 6mp, Cimzia and Prednisone. The 6mp and Cimzia aren't working. My doc is trying to tweak things to see if they will work, but I don't have much faith in that.
I have an appointment next week to further discuss our next move. Honestly, I feel like at this point, I need to try something completely different. That might just be MM. It just became legal here on the 1st of the month and with all the stories I've read and studies/med journals, I figure, why not try it at this point.
 
Jer said:
Well, I hope it works for you. The only
real side affect for me was it made me really tired for a day or two after.


As for me, well........thats the question. What do they/I do now? lol

I'm currently on 6mp, Cimzia and Prednisone. The 6mp and Cimzia aren't working. My doc is trying to tweak things to see if they will work, but I don't have much faith in that.
I have an appointment next week to further discuss our next move. Honestly, I feel like at this point, I need to try something completely different. That might just be MM. It just became legal here on the 1st of the month and with all the stories I've read and studies/med journals, I figure, why not try it at this point.
Click to expand...

What is MM?
And why did you go off remicade?
 
Jer said:
Well, I hope it works for you. The only real side affect for me was it made me really tired for a day or two after.


As for me, well........thats the question. What do they/I do now? lol

I'm currently on 6mp, Cimzia and Prednisone. The 6mp and Cimzia aren't working. My doc is trying to tweak things to see if they will work, but I don't have much faith in that.
I have an appointment next week to further discuss our next move. Honestly, I feel like at this point, I need to try something completely different. That might just be MM. It just became legal here on the 1st of the month and with all the stories I've read and studies/med journals, I figure, why not try it at this point.
Click to expand...

Ive read SOOOO much about MM and want it so badly. Very much not legal here, and doesnt look like it will be anytime soon. It is strange to me, that we will make all these synthetic drugs, with horrible side effects, and yet, something that grows naturally and has shown great health benefits, cannot legally be used. Its all about money and politics.

My GI docs skipped the 6mps, and went straight to the remi. they told me i have severe Crohn's and they are using pentasa, and the remi, hoping that will bring me remission. I dont know what is next for me either. Its slightly frightening, but I have faith!!!! I hope that things will work out for you...keep me posted!
 
#1gunnah said:
So the last time I got remicade I broke out in hives. I didn't feel very good and I returned to the clinic. They gave me benaydrill and a steroid injection. Did they administer this to fast?
Click to expand...

It may be that you had an allergic reaction to it - how long after the infusion did you break out?.....for your next one they should administer pre-meds to help avoid anything - and should monitor you more closely too.

Don't be afraid to speak up!
 
I'm up to about 60 infusions of Remicade and have always had the benadryl, tylenol and hydrocortisone before my infusion. I have never had a reaction of any type. My nurse told me that some Drs want to wait and see if you have a reaction then give it to you. She called it the god syndrome.
 
sfmreb2 said:
I'm up to about 60 infusions of Remicade and have always had the benadryl, tylenol and hydrocortisone before my infusion. I have never had a reaction of any type. My nurse told me that some Drs want to wait and see if you have a reaction then give it to you. She called it the god syndrome.
Click to expand...

I was just on the phone with my dr today, as I've been having horrible joint pain since the start of remi. I've always had the benadryl and tylenol pre infusion, but necer the hydrocortisone. Just today they mentioned the possibility of treating me with the hydrocortisone to help with the joint pain. Is that why they give it to you??
 
Hydrocortisone (SOLU-CORTEF given IV) is basically a steriod. Before I started Remicade I used to have a floating type arthritis. Different joints at different times. I do not remember how long I was on Remicade before it stopped. No arthritis pain for about 10 years now. Back to your question. I was told it helps to keep you from developing anti-bodies to the Remicade. If I was you I would go for it. It is better than Pred in my opinion. I have no side effects from it.
 
sfmreb2 said:
Hydrocortisone (SOLU-CORTEF given IV) is basically a steriod. Before I started Remicade I used to have a floating type arthritis. Different joints at different times. I do not remember how long I was on Remicade before it stopped. No arthritis pain for about 10 years now. Back to your question. I was told it helps to keep you from developing anti-bodies to the Remicade. If I was you I would go for it. It is better than Pred in my opinion. I have no side effects from it.
Click to expand...

Well I will definately trybit if my gi docs think I should! I'm not new to iv steroids, and they've gotten me through aome rough times! But they were talking about using it to help with joint pain I am having. They are going to brainstorm together and call me tomorrow with the direction the are going to try with me next. I can't handle this pain! And I didn't have it before the remi.
 
@ j.bug, let us know what you learn from the call today. I'm struggling with new pains, numbness/tingles all over my face/body, nausea and disorientation. Was on pred for 5 months, finally off for a 5 days now and on nothing and wondering if this is what a "flare" is. Barely ate yesterday, but gained a pound, I think from gut swelling. Don't know whether to call the GI because I leave a week tomorrow and really wanted to go on vacay med free for a mental break.
 
spinnychick said:
@ j.bug, let us know what you learn from the call today. I'm struggling with new pains, numbness/tingles all over my face/body, nausea and disorientation. Was on pred for 5 months, finally off for a 5 days now and on nothing and wondering if this is what a "flare" is. Barely ate yesterday, but gained a pound, I think from gut swelling. Don't know whether to call the GI because I leave a week tomorrow and really wanted to go on vacay med free for a mental break.
Click to expand...

My dr told me it may be the Remi causing my pain. They are calling mr back today afterba team btainstrom on what to do about it!!

I would call your dr right away hun!!! You could have become steroid dependant in those 5 months. Did you taper off of the steroid? I wouldn't mess around with those symptoms though...especially being new after such a med change! Please call! And keep me posted...
 
I'm waiting to see how the morning goes and will call this afternoon if necessary. And yes, I tapered off, like 4 times, but every time I was down to a lower dose, something went wrong and he increased. That's why I was on for 5 months. Good luck with your day. Sheesh, we're a mess, aren't we? :O)
 
Lol, maybe a bit of a mess!!! Oh I am praying for you! I'm confused as to why if you haven't been able to come off of pred, your dr hasn't yet put you on even Pentasa or something! Did you have a colonoscopy to diagnose CD?
 
Yes, I've had 3 since may. Went into emergency in May, attempted colonoscopy but couldn't get in according to him due to extensive damage. Second attempt was with a pediatric scope a couple months later and he got partway in. Have tried the prednisone, antibiotics, then mezzavant, then methotrexate, now moving toward remicade. Not sure why he stopped the methotrexate or took me off pred and is leaving me completely med free for a month prior to the remicade.
 
I don't either! I was on pred until a month after my first Remi infusion. And I haven't been taken off of pentasa at all. You're stubborn, like me!!! I will know I should call or go in, but refuse untip its so bad I'm carried in!!! Don't be stobborn today! You wanna feel great for your big day!
 
OMG, I was so stubborn in May before I was diagnosed, I was honestly shooting so much blood out and barely walking. But it was the long weekend here and I didn't want to spend the long weekend in the hospital. Doctors said I waited WAY too long and had a SEVERE case. I remember I went into semi shock in emerg, was temporarily paralyzed and my whole body locked in to a weird position for 15 minutes. I was terrified. Happened again, and this time I was on the frigging toilet. Honestly, paralyzed with my hands all cramped up freaky looking, can't move an inch of my body. My fiance had to get a nurse, unlock the door, and the two of them had to lift me off the toilet, all folded up into a lock down position. Toilet FULL of gross blood and my fiance was gagging lol. I knew at that point he was in it "in sickness and in health". But ya, I'm stubborn. And obviously I'm not shy to post all this publicly either lol.
 
OMG no, I've never had a blood transfusion, that would freak me out too. Poor you. btw, love the new pic. And has anyone ever said you look like Miley Cyrus?
 
spinnychick said:
I'm waiting to see how the morning goes and will call this afternoon if necessary. And yes, I tapered off, like 4 times, but every time I was down to a lower dose, something went wrong and he increased. That's why I was on for 5 months. Good luck with your day. Sheesh, we're a mess, aren't we? :O)
Click to expand...

Sounds like my year. lol I've been on Pred for about 8mo of the past 12mo. Taper off, my meds don't work, go back on..........


Hope you get some relief, if anyone gets how you feel, its the rest of us here.
 

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