Remicade Club Support Group

Crohn's Disease Forum

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I have infusion #2 on Thursday. The first went good and didn't notice a huge difference right after. Couple days later I noticed a slight difference in stomach pain. So hopefully it will keep getting better.
 
My Butt Hurts said:
I just had infusion #31 a week ago. I was having some symptoms reappear 3 days prior, so I will keep a watch to see if I slip close to my next infusion as well.
I'm still at 8 weeks apart, and only 400 mg (ml?) so I still have plenty of room to adjust if need be.
The good news is, it only took 20 hours post infusion to feel back to remission again.
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You give me so much hope. :hug: I'm glad it has worked so well for so long for you.
 
I'm going to join the Remicade club pretty soon. What do you guys mean by "starting feeling a difference"? Less stomach pain? Less visit to the bathroom?
Thanks in advanced!
 
Pretty much starting to work means, less trips to bathroom, less stomach pain, eating whatever (for me at least). It means you get symptom free. Remission. After my first infusion it took a couple days, and then bam! It was like better. I remember breaking down to my mother over lunch like, "this is unacceptable to live this way" and then a day later feeling great and two later feeling normal. Taking two solid dumps a day and running at the gym. It was amazing. I was in 8 weeks of hell, and it just went away. I know everyone is different but it worked great for me. I build confidence everyday that I am ok and can eat and do anything. I just got my second infusion a couple days ago and I really hope this keeps up long term.
 
For me I'd be so greatful to take a dump without having blood and cramps, solid and less times per day all would be amazing. My doc wants to keep me on 6mp plus remicade and eventually cut the lialda(since it's pretty much worthless to me lol) I'm weaning down on the prednisone too. It'll also be super awesome to be taking 4 pills a day compared to the close to 15 I take now. Imagining carrying around 2 tiny bottles...or just having a decanter makes me super excited :) I'm very hopeful
 
I know the pill troubles too. At one point it was asacol X 12, pred X 4, Azamiaprine X 2, plus Remicade. Not to mention pain meds. I was someone pre-diagnosis that never took anything, ate organic, felt like I was the pinnacle of health. Haha! Then I was downing big pharma all day long! I am getting off pred, stopped asacol, so soon I will be only on azamiaprine and remicade. Three pills a day! It was only a few weeks ago I was going 20 times a day, nothing solid, blood for months, and non stop cramps so keep the faith it can get better. Everyone is different so you just need try different stuff and something will work. I know it is frustrating to not get answers. There is no majic bullet, everyone finds there own way. You will too.
 
I am beyond stressed right now.im at work when I get a call from my infusion center. They tell me my insurance needs to preapprove me before I can start treatment ans I haven't been preaporoved. I was told I can cancel or reschedual or call my insurance and see what's going on...so I call my insurance they check and the hospital didn't ask for approval till this morning at 8am. Well of coarse im not approved you just asked for it!! All the while im tapering off peesnisone down to 10once mgs and blood and urgency are slowly reeping back...this is great. The insurance lady dis tell me that I would be approved but it could take up to 14a days to get the approval so now my first infusion is for january 30. Ugh im so frustrated I could cry :(
 
Hang in there!!!!! That is very distressing. Fingers crossed that insurance can get this worked out within days and not weeks.
 
Oh hun, that is so unfair :hug: I would make a huge complaint to the hospital for waiting until such a late stage to get approval. Surely insurance isn't a new thing for them and they should know by now these things need to be sorted sooner rather than later. Also why would it take two weeks to get approval, doesn't the insurance company keep records and would know you have a disease that would require this kind of treatment?
 
The lady I talked to in my insurance said it could take up to 1414a days though approval normal doesn't take that long. I have Medicaid so I know they have a lot of people requiring approval im just beyond myself why the hospital would wait until the day before when I've had the appointment set up for close to a full month before then they call me two hours later like it was ny fault I hadn't gotten approval yet...you were the one waiting till the say before not me! Just a bunch of bs.
 
As much as I *DESPISE* them and can't wait to be done with them, you might try some hydrocortisone enemas to help out while waiting for approval since you are tapering prednisone and having blood and urgency. Very little drug is absorbed into the blood stream, but it may help take the edge off your symptoms.
 
Sorry to hear about evverything. Try to not get stressed, I know that isn't easy. Can you call your doctor and maybe up the pred until you get in. I know that sucks but it might help with the right now problems. Then you can start to re-ween when you are on Remicade. I would complain to the hospital and see if things can speed up. You know it is hard to find good care from anyone. Most people, including doctors, just grind through thier day and don't really follow up on anything. I am constantly calling my doctor for blood work rx and reminders. And I really like him. Haha.
 
It just really bothered me that they would act like I should have already had an approval but how am I supposed to get an approval the day before my first infusion? How am I going to speed along the process when just 2 hours ago you sent the approval form in? Pisses me off that they're acting like it was all my fault...

I also had another stressful situation with my sons father being...well you know a dead beat dad. I won't go into those details but it all seemed to come to head all at the same time. The stress got to me so bad that I started getting nauscious which never happens to me. I like to think though that the harder the year is coming in he better the year is going out and I've been really doing pay it forward/random acts of kindness so hopefully it'll end up paying out in the end. *sigh*
 
So sorry Melissa! I realize that doctors and hospital staff are busy, etc. but it's still no excuse to drop the ball regarding someone's health! I had to learn the hard way too, unfortunately. Had a lot of problems with my kidneys a couple of years back and went on short term disability at my job cause I knew I was going to need surgery (ended up going under 4 times!). I was out for so long I had to send off more paperwork to my employers disability dept., or HR or whoever it was that keeps track of those things. My GI had 2 papers to fill out and fax in for me.

So a month or two later I get a letter informing me that since I hadn't worked in so long my insurance was cancelled. I freaked out. Turns out the GI's office had waited until just before the deadline to fill out and fax the paperwork, but the GI FORGOT TO SIGN IT.

Looking back now I realize it was my mistake to assume they would treat the matter with the sense of urgency that I would have. I should have called the office constantly, or requested that the papers be filled out and left for me so that I could have reviewed them before sending them in myself. Hindsight, of course, is 20/20.

I really hope your situation gets fixed and you get the meds you need! Good luck, and kudos to you for the great attitude. It's so hard when you don't feel well, but I believe it helps.
 
Looks like I'm joining the club! I saw my GI today and he scheduled my first infusion for Friday! They're going to call insurance tomorrow for the pre-certification. Fingers crossed that goes smoothly! My next Cimzia injection is due Friday, so that's why we're doing it so soon.
 
Remicade no.4 today, and I feel absolutely knackered for some reason?! The 3 previous, I've been ok,but I feel like going to bed now?!

Think it has actually done something, as I've got more energy, sleep through the night and have started exercising and working out again.

Here's hoping its working/or will work for those who are having the treatment!
 
My first infusion was delayed a week (thanks to insurance) and I got a lot worse in that time. However, within two days of my infusion, I was feeling so much better. I'm still dealing with a lot of pain, but the rest of my symptoms are gone or lessened a lot. I'm only 5 days out from my first infusion.
 
Little wahoo! things are getting there, lets hope the pain goes really soon. When is your next infusion?

Lookame - how are things going for you?

Mr B - maybe this will just be a flook for today beings the other times were ok and from what you have said you have otherwise been doing really well.
 
Angrybird said:
Little wahoo! things are getting there, lets hope the pain goes really soon. When is your next infusion?

Lookame - how are things going for you?

Mr B - maybe this will just be a flook for today beings the other times were ok and from what you have said you have otherwise been doing really well.
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Yeah, maybe it's just I was actually tired 'before' I went in for my infusion and that sitting there for 3hrs just wiped me out for the evening?! Ahh well, nearly the weekend I guess!
 
It could be that or even a bit of SAD, apparently this is very common this time of year when we are not seeing enough day/sunlight. Sooo looking forward to the weekend, work has been tough this week so far and I am a bit weary myself.
 
I sleep for a day or two after my infusion. They doubled my dose on 1-13 for my joint pain and my unpredictabe bathroom agenda. I think I am in remission, using the bathroom 3 times a day for 5 days now. This is the best Ive been since 2004. I love Remicade
 
chrisn steph1022 i hope remi is as good for you as it is for many of our clubbies good luck phsyllim is good as well
 
Well it seems if it's not one thing it's another. I'm still going in on Monday for remicade but I'm worried that my insurance is going to drop me because I make to much working at a pet store making 8 bucks an hour and working 16 hours a week...yeah coarse I make to much. I've contacted an attorney to help keep me on and was told I should put something in to my caseworking stating I have crohns disease and need medicaid to just stay alive. Without it I can't afford any of my treatment heck I can't even afford to see a doc. grrrr

Anyway like I said I still plan to go in on Monday I figure if I get booted then at least I tried to stay as normal as possible and maybe it'll help keep me healthy until I can figure something else out. If I don't get booted then it's awesome and I'll be glad I started as soon as I possibly could. In all I'm under a lot of stress right now...
 
Sorry you're having so many insurance issues. That's frustrating.

My next infusion is 2/3 (next Friday). Then I'll do one 4 weeks later, then go to every 8 weeks.
 
Well yesterday I had my first infusion. All went fine with no premeds. Today I feel that my bloated stomach has improved somewhat and fingers crossed its hitting my stricture hard. I'm going to take things easy with my diet until the 2nd infusion then try and experiment with a few more food items. At the moment I'm still hearing gurgling after eating.

On the 29th feb its my 40th birthday and as this is a leapyear me and my family thought it would be a good idea to have a holiday in Thailand to celebrate, well this was all booked before I started getting bowel obstructions. A week before I had my 1st infusion I was planning to cancel but now the bloating has subsided im thinking can I still go......?? The 2 week trip lands between my 2nd and 3rd infusion.

Is this a crazy idea? I so want to be with my family...
 
I am pleased you have already noticed a slight improvement, totally agree about keeping up with a 'safe' diet for now at least. How close to the trip is the 2nd infusion? Perhaps worth having a chat with the IBD nurse to see what they say. I would really hope that they would say you can go and will just give you advice on what to do if you start having any problems. Do you have travel insurance? If so are they aware of your crohns?

I also find now that after I eat (especially if the meal was a bit bigger than normal) that my belly will get really loud, it actually makes me laugh because the noises sound really funny.
 
Thank you Angrybird for your reply. My second Infusion is on the 8th Feb and the holiday is booked for 14th Feb. I know its a good idea to speak to the IBD nurses at Cambridge but I'm a little worried they might say its not a good idea..

I have travel insurance but will need to call and notify of the changes of medicines and that I have recently stayed in hospital, I'm sure that will be fun... I remember a few years back I was getting quotes of 400 pounds up for a 2 weeks stay.
 
Ouch! I suppose it it better to be safe than sorry considering your current predicament with the disease. If you were in remission you wouldn't really need to worry about it (I know I didn't when I went on holiday a few years ago).

8th Feb that is a bit tight... and did you say Cambridge, it may be that I am having a complete brain fart :ybatty: but have you mentioned this to me before? It's just I am also Cambridge (duh you would have seen this under my pic) and so you must be speaking about Alison or Kathy? I do remember from previous experience that they do understand the importance of holidays - this can even help your health in the sense you will be having a great time with your family so they may surprise you with what they say....
 
Yeah Angrybird i'm with the Cambridge team, Dr parkes is my consultant. I met Kathy a couple of weeks ago to discuss remicade, I must say I have found them both really helpful and I like the idea they are only a phone call away.

Your right I need to call them after my 2nd infusion to see what they say.
Thanks angrybird, its nice to know you goto the same hospital too. Why did you stop Remi? Did you have before or after your resection?
Cheers
 
I started it about 4yrs ago (ish) I was doing fairly well for quite a while and was on 8 weekly infusions. I had had a couple of hiccups on 2 vists with a rash that came up on my arms and torso and another time a bit if a tight chest feeling. They gave me benedryl or something like that and then re-started at a slower rate and it was fine. Then out of the blue I started getting pains in my knees, ankles and fingers and red marks around my eyes, elbows and knuckles. It got bad enough that I could barely walk and was using my fore arms to pick up my baby neice because I couldn't bend my fingers. My GI took one look at me at my appt and had be admitted into hosptial. It was eventually confirmed that I had had an allergic to the Remi and it had caused my body to think it had Lupus! This was about 3 yrs ish ago. It took a while but everything went back to what is normal for me and led to the introduction of Methotrexate which did such a job and keeping my intestines in order that I got a bloody stricture! Not going on that ruibbish ever again. Please do not be alarmed by this. Many people do really well on the Remi and it becomes their miracle med.

I love Kathy, I have had quite a few chats with her recently because of the Aza monitorin and I am due to see either her or Alison on the 13th Feb for a review of how things are going. Their VM has improved as well that if you leave a message before 12pm you will get a call back that afternoon :) Because of the tight time scale perhaps call them before the next infusion.....
 
Sounds like you went through some tough times Angrybird with Remicade, I sure hope I don't have any reaction like that. Don't know much about Methotrexate and I didn't even know it was used for Crohns until the last couple of weeks and I'm sorry to hear that gave you some complications too. What meds are you finding work for you now?

cheers
 
I would totally go on the vacation! I'm a week out from my first infusion and about 95% back to normal. It's amazing. I know I'd feel up for a trip now.
 
At the moment I am on 25mg of pred (started on 40mg before xmas) and this has calmed things down a lot although bloods from last week showed I still have a slightly raised inflammation marker and I get a few niggles. We are trying Azathioprine again for me (was on it a few yrs back and it caused neutropenia) I have been on it just over 3 weeks and have gone up to 50mg, increasing the dose slowly due to previous issue with it and should end upon 125mg. Not allowed to touch the pred dose at the mo :( Really hoping the Aza will work again for me and longer than last time :) If not my GI has confirmed Humira will be the next option. Or the quick answer: still waiting to see what will work for me ;)

Stephanie - really chuffed that you are feeling better!
 
Infusion tomorrow at noon.

I'm worried about this one. I turn into a zombie for the first couple days afterwards. My husband just had a knee replacement and is officially an invalid until he recovers. It's my job to change out his different therapy machines every hour or two, and then to spot him with his physical therapy several times a day. (Not to mention all the regular household chores, driving kids to school, and making/serving meals...)

What is he gonna do when I'm an invalid, too!!?? ;)

Somebody should come take care of us. We need to be pampered for a while. :D
 
I had y first infusion today. It wasn't bad except I was hungry and tired. My dr ordered premeds beforehand(as he does with everyone) 2 tylenol, a benedryl and an IV steriod so I think the benedryl wiped me out. Right now I feel tired and achy...is that normal? Bad? I'm also really hungry. During the infusion somone next to me kept throwing up and that really freaked me out(usually I vomet when someone near me vomets...even the sound of them gagging gets me going) so my blood pressure was high during the infusion. I didn;t have any reactions to the remicade although when it switched to drip more(from 50 ml-75/100 ml, then 100ml-150mls ect) I would feel a surge of pain in my chest for a couple of seconds then it'd go away. It was a good expirience though. I have my next infusion on Feb 13 at 8:30am.
 
Welcome to the club (officially now)!

I'm 10 days out from my first infusion. The past 3 days have been like remission. No pain, no nausea, going once or twice a day. Amazing! Then last night I got really nauseous. Took some phenergan and was fine. Today, I've only gone to the bathroom once, but another time I had bloody mucous. And I've had a little pain. Is this normal?? My next infusion is this Friday.
 
My Dr. said it takes a few infusions sometimes for a good effect to kick in, and then we keep our fingers crossed for remission. I had a bit of nausea today for the first time ever. Odd. My 3rd infusion is Friday. Gives me aches, but it's not too bad. tummy and stools are sooo much better.
 
My husband just started Remicade today. Here's Hoping this is an answer for him. He has been in the hospital for a week now. He has had a rough last few months/years. This recent flare up has caused serious weight loss, and discomfort.

2 yrs ago he had another surgery which was to be a resection, however given all the built scar tissue from his previous surgery, (encased his intestines) he ended up with an ileostomy for 9 months, which was reversed. Before that when diagnosed in 2001, his appendix ruptured due to Crohn's Disease, which caused jaudice and several other complications. This ended up with a resection and also removal of his gall bladder.

He has been on just about every drug and nothing has worked for him. Asacol, 6-MP, Pentasa, Steriods, along with various other antibiotics for inflammation.

I have read good things about it, but there is always a concern. He has learned to think that being sick is his way of living, and this is unacceptable.

My hats off to all of you who go through the struggle on a daily basis.
 
So sorry, rachrocka, to hear of all your husband has been through. I sincerely hope that the Remicade wlll prove to be helpful to him. Please let us know how he's doing This forum is a great place to share and ask questions. the people here are really great. I'm glad you found us.
 
I finished my infusion yesterday around 3 PM. I feel really drained right now, so I haven't read anybody's previous posts yet. The Xanax really helped me. I didn't panic too terribly this time. :D
 
Today is a little worse than yesterday. Three bathroom trips so far, pain off and on. I feel like I'm sliding downhill. Next infusion is in 3 days (2nd loading dose).
 
Today I'm feeling rather good. I've been considering starting a team for a local chapter fundraiser walk. I think it'll be good...but I'm still in the deciding phase right now...so far it'd be a team of me and my fiance though it'd be fun to make shirts and go and walk around franklin park conservatory for the day(it's a beautiful place and the spot of one of our first dates 4 years ago)
 
No trouble sleeping here, but I take a drug for another condition that has a side effect of basically knocking me unconscious for 8 hours. I could sleep through a hurricane. LOL

I'm a little worse again today. I was hoping it was just a fluke, but it does appear I'll continue going downhill until my next infusion. Two more days.
 
Definitely an allergic reaction, everyone. It didn't happen right away after my second infusion, but a few days into it my hands and feet swelled up bright red and the incredible itching started. Also, my tongue swelled up. Went to the emergency room and they put me on an iv of steroids, Benadryl other antihistimines. After four hours of an iv I was sent home with prescriptions and I'm fending off the allergic reaction. Not sure what this means in terms of continuing the infusions. The reaction next time could be worse, so I was told by the doctor in the ER. Remicade really helped me in combination with the steroids about % 30 of my pain is gone over all. This is such an improvement I'd hate to go back to life without Remicade. I see my doc soon about the reaction and we'll take it from there. I hear you can pre- treat before infusions to avoid allergic reaction. I was given Benadryl before my first two infusion and obviously that no longer works. On to the next thing. I'm just going to keep trying until I get better!
 
Oh no! So sorry to hear that. I didn't know you could have a delayed reaction like that. I assumed if you were allergic, it would happen during the infusion.
 
Hello everyone...I'm new to the forum and enjoying reading all the information. Finding out about a lot of things I didn't know.

I got diagnosed in June of 2004. Tried Pentasa, Imuran, Entocort....all failed. Dropped 40lbs in less than 4 months (kinda interesting being a size 0). Ended up spending a week in the hospital because of neverending pain. Sent home with TPN tube (central line for basically a feeding tube) for 6 weeks plus Prednisone (can we say moon face). Had no choice but to go on Remi. Took about a year for me to be in full remission. Have not had any major issues besides getting the very unusual infections and high blood pressure. Now that I'm in my 8th year,I am getting a little nervous about the long term effects. But all I can do is hope for the best.

Good luck to all the newbies and IV Leagues!!!
 
Had my first remi infusion today, made me really tired but other wise no problems next infusion in a week. What I am wondering is how long it generally takes to notice a difference my understanding is that it can take a few doses but today one of the other patients said it could be immediate. Can anyone advise me on this
 
It took me three infusions to really feel great. I only had a couple days of pain in between treatments. Otherwise the BM's dropped drastically, the pain went away, and I even gained some weight back.

Good Luck...
 
JudithC said:
So sorry, rachrocka, to hear of all your husband has been through. I sincerely hope that the Remicade wlll prove to be helpful to him. Please let us know how he's doing This forum is a great place to share and ask questions. the people here are really great. I'm glad you found us.
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Thanks! I am too! Question for anyone - fFor a month plus, my husband was throwing up on a daily basis. My thought is if it cant pass due to a flare up, it is going to come out somehow. Anyone else have this experience?

He is 2 days out of the hospital/since his Remicade infusion...In the hospital, for a week, while on IV etc, no throwing up, and yesterday and this morning he started up again. Not sure what it is. He ate most of the same thing, only difference, in the hospital, he didnt drink coca-cola and now started again? Does soda bother anyone?
 
JudithC said:
So sorry, rachrocka, to hear of all your husband has been through. I sincerely hope that the Remicade wlll prove to be helpful to him. Please let us know how he's doing This forum is a great place to share and ask questions. the people here are really great. I'm glad you found us.
Click to expand...

Thanks! I am too! Question for anyone - fFor a month plus, my husband was throwing up on a daily basis. My thought is if it cant pass due to a flare up, it is going to come out somehow. Anyone else have this experience?

He is 2 days out of the hospital/since his Remicade infusion...In the hospital, for a week, while on IV etc, no throwing up, and yesterday and this morning he started up again. Not sure what it is. He ate most of the same thing, only difference, in the hospital, he didnt drink coca-cola and now started again? Does soda bother anyone?
 
rachrocka said:
Thanks! I am too! Question for anyone - fFor a month plus, my husband was throwing up on a daily basis. My thought is if it cant pass due to a flare up, it is going to come out somehow. Anyone else have this experience?

He is 2 days out of the hospital/since his Remicade infusion...In the hospital, for a week, while on IV etc, no throwing up, and yesterday and this morning he started up again. Not sure what it is. He ate most of the same thing, only difference, in the hospital, he didnt drink coca-cola and now started again? Does soda bother anyone?
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I can't drink dark soda either I stick with ginger ale and squirt and do better but the minute I drink dark soda I am sick
 
I am loving remicade!! I'm day 5 from my first infusion and I'm feeling good. I still get he colon spasm where I get a sharp stabbing pain in my left side but I'm finding myself going only once maybe twice a day and it's all been solid. I even ate a salad one night and I wasn't locked in the bathroom forever! I'm so excited
 
i've been on remicade since early 1999....so a long time, by medication standards. it has been my miracle drug, with only a few times when we had to consider changing and trying something new (after both of my childrens births). i was for many years getting it every 8-10 weeks, but now struggle to go more then 5, feeling the need after only 3 weeks on my max dose amount...so the time is slowly approaching again for the discussion on where to go from here. which scares me to death. thinking of having to do trial and error with a 2 yr old and 5 yr old to take care of isn't something i want to do! i just started taking zoloft to help with my anxiety that has steadily increased since having kids, the most normal simple activities of going to the grocery store has become a lot more stressful since having the them. its hard to take them into restrooms in public while i'm sick, it was different when it was just me!! i'm hoping that i get some help from the zoloft which will inturn help my remicade last longer b/c of less stress. there have been a few times where i have had some reactions to the meds (again, right after giving birth) but all and all other then a medicine headache and joints aching the next day i have had no major issues. i'm am a huge fan and supporter of remicade, i hate to think where i would be without it!!!!!!!!!!!!!

~ElzWoodward

dx'd March 1998
Remicade since 1999
Zoloft
Vit D
 
Of all cruel things. I was just beginning to feel great, my colon finally kicked in the butt...and this morning I wake up with a throbbing ear, enlarged tonsils and a runny nose. I have another infusion on Monday and it's my second loading infusion so I can't push it back for to long, but I es told I can't get the infusion if I had any sore throat or anything. :( this is no good. I see my gi today so im going to chat with him about the ear and throat and see how long I can postpone my second infusion for
just so sad about this :/
 
oh geeze!!! Hope that clears up soon...do you have a fever with it? I had an infusion with SEVERE laryngitis/pharyngitis - could barely even whisper - but no fever so I got hte infusion anyway - that was also while being on antibiotics for strep...so it CAN be done.....sometimes you may have to 'lie a little'.....
 
Really? When I went for my infusion last Friday, I told the RN that I had a sore throat and she never said a word. I don't feel any worse for it today either. Still just kind of stuffy. The only thing I'm dealing with is the aches in my muscles and joints.
 
Well I was able to avoid the ear infection for a couple of days... but of coarse it caught up to me today. I took a nyquill sinus congestion pills this morning around 3am since my sinuses woke me up then and I couldn;t get back to sleep and the next time I woke up my ear was killing me. Funny thing is that happened to me last year too. Oh well I'm on a 5 day coarse of antibiotics so hopefully the ear infection will start to clear up tomorrow or sunday even though I'll be on th antibiotic till Tuesday. *shrug*
 
Hi everyone,

Monday I'll be joining the Remicade club. It's the date of my first treatment. I'm so scared. I always have side effects with my medications and the ones for Remicade are not "small ones". My GI prescribed me 2 Tylenols and 2 Benadryl pills before my treatment. It doesn't seem enough to me... Is this standard? I asked the nurse that follow me if I can take more and she said to follow my GI prescription and they will adjust it for my second treatment if I have a reaction... Nice! I'm counting the sleeps before my treatment :p (3 sleeps!) I'm trying to stay positive and that it will be a life changing treatment... hopefully! :)
 
My pre treatment pills were the same Nemesia and worked just fine. I was very scared too. So far so good. I hope all goes well for you too. I'll be thinking good thoughts for you.
 
Just Started Remi

Hello fellow sufferers. So, I just had my first loading dose of remicade yesturday. It was a 2.5hr infusion. About half way into it I noticed my back and hip were all of a sudden very sore, I tried to dismiss it from traveling however it continued. Before I lef the clinic I mentioned to my nurse if it was an reaction/side effect and she was himhaw on it just as was relating it to traveling.

Anyhoo, I carried on with my day just fine, a lil tired but nothing major. WELL, let me tell ya, that changed. By about 7pm every part of my body that could bend, as in all my joints, hurt bad. My toes, knuckles, elbows, ankles, hips, lower back, everything! and to go along with it, exhaustion. The joint pain is very different to other pain I have felt. It feels deep and when u rub the area I do not feel relief of any sort because as I said its a very deep different pain.

I am scheduled to go for my next loading dose in 2 weeks with my third loading a month after and then continuing every 8 weeks. I am really hoping not to have to give up on this treatment as the struggle for coverage was extensive although quite lucky to receive coverage. I received a copy of the receipt and just about choked my 100mg does $7610.39 WOW!

Well I will stay updated as I can and hope my info may be of help to others. I love this world of understanding we share through this forum and the courage and will it has given me to be able to fight through as best I can. Take care All!
 
Nemisia my premeds are a steriod dose in the IV, 2 tylenol and a benadryl. I did fine. I was really worried about a reaction but they kept an eye on me. Every 1/2 hour they took my blood pressure and would come over and ask how I was doing. Afterward I felt tired and achey,my arm that got the IV in it was rather achy and I took a long nap(about 2 hours) when I got home.

So my right ear infection has passed but my left ear decided an infection would be fun. I didn;t go to urgent care like I did yesterday but I can feel it draining, hurting and I can hardly hear out of it. Trying to get plently of rest and stay really hydrated. :/
 
I went in for my remicade infusion today. It went well again but they asked if I was on antibiotics or had been the last 10 days...wellll I stretched the truth. I was considering reschedualing since my fiance brought home a stomache bug and was worried I'd come down with it but I didn't so I went in. The nurse stuck the IV in my hand which I didn't like. The faster the IV pumped into the vein the more it stung and now I have a bruise. Now to look foreward to make next infusion in 6 weeks
 
lookame said:
The nurse stuck the IV in my hand which I didn't like. The faster the IV pumped into the vein the more it stung and now I have a bruise. Now to look foreward to make next infusion in 6 weeks
Click to expand...

Ouch, I know how that is! My veins are terrible, they roll and blow, so I almost always have to have my IV in the hand. I try to get really hydrated, but it doesn't make a difference. I get the bruises too. No fun :(
 
I got my first infusion yesterday morning. It went well during the infusion and in the afternoon. I slept all afternoon. But last night, i had back pain and my belly was on fire. This morning, it is still the same and I also have flu-like symptoms. I think this is common side effects, right? Should i be worried? When do i start to worry? Thanks in advanced!
 
I did not have the belly on fire side effects, but each person is different. Perhaps you should call the Dr. and discuss this with him/her. Always good to at least chat about it and relieve your mind. I did have the flu like symptoms though.
 
I know im lucky! She is way faster than my GI. However, my GI is very good too. :)

Im going to a lunch meeting but yeah, ill pick the light stuff. Im kinda scared to eat...
 
Nemesia said:
I got my first infusion yesterday morning. It went well during the infusion and in the afternoon. I slept all afternoon. But last night, i had back pain and my belly was on fire. This morning, it is still the same and I also have flu-like symptoms. I think this is common side effects, right? Should i be worried? When do i start to worry? Thanks in advanced!
Click to expand...

The belly on fire pain could be heartburn of somesort. I know when my body is in "alignment"(no diarrhea) I tend to get acid reflux and it sometimes feels like my stomache is burning. I didn't have any flu like symptoms either but I felt very tired that day and the day after. I also had trouble sleeping during the night the first couple of nights. I also have back pain after my infusions but I think thats because of the chairs...super hard to get comfortable in.
 
My hand still hurts from the IV I had yesturday but I'm feeling decent today. I'm tired which seems to be normal for me and I'm feeling rather hungry too lol. I feel great other than being sleepy. I finished the round of antibiotics today and my ear is starting to pop so I think the cold/ear infection is on it's last leg. I had my fiance get a humidifier to help prevent getting long (like month long) colds and reduce more infections. I think it feels better being in the room but my fiance thinks it makes no difference lol. *shrugs* I'm looking foreward to the next couple of days getting healthy and not feeling so lousy anymore :)
 
Nice to hear you're feeling better lookame. If the humidifier makes a difference to you than by all means go ahead and use it. I get my infusions in the hand too. You're right, yuck. Now though I can wait 5 more weeks for the next one. Amen to that.
 
Follow up on my previous messages, my Remicade coordinator said that my side effects are not normal. She contacted my GI and am waiting to hear from her... Im worried :(
 
Oh Nemesia, You might just have a reaction and your GI will be able to take care of that. I know how worried that can make you, I hope your GI calls back soon. Please keep in touch. You are in my thoughts and prayers.
 
Hi everyone,

So my GI called and said to go to the emergency right away. Apparently, my side effects are not normal. I'm waiting to see a doctor.

I'm bored and in pain. :(
 
My reaction to remicade after 4 months of treatment was similar with excruciating pain.....I developed drug induced lupus and had to go off remicade..... It worked so well for my Crohn's. 3 months later......the pain is finally subsiding....what to do next?????
 
I have been admitted at the hospital wednesday night because of the pain in my belly. I thought it was a side effect of my first Remicade treatment. My GI thought it was a flare-up... But it turns out to be a bad virus. Apparently, I have no active Crohn! Wow! They decided to keep me in observation for 2 or 3 days. Can't wait to be home!
 
I'm so glad to hear from you Nemesia. I was worried. Does this mean you are in remission? That is amazing and wonderful. Now just get well from this virus.
 
Hi JudithC,

Thank you so much for your support! Yes, I think it means that i'm in remission. :D

I'm so happy... and relieved! Hopefully I will sleep in my bed tomorrow or Sunday at the latest. Yay!

Take care!
 
I can't remember if I posted here or not, so I'll just post again.

I've been on Remicade for about a year and it has done wonders... it's awesome to sit for two hours and be waited on!! Im so glad to come to this thread and find that people like the process too. I remember one time we were afraid that we were going to have to change the Remicade (I actually forget why) and I was sad because I didn't get to see the nice people in the clinic and I didn't get to sit for two hours and relax... now if they would only do pedicures!!! we would be set!
 
Hello Everyone,

I am quite new to this forum but I have been reading a lot about ppl's posts and their experiences to Crohn's.

I was "officially" diagnosed earlier this year with Crohn's. I am still in denial with it.. since I don't feel any pain or what so ever. I only had a few flares from my previous experiences and a few times blood in my stool.

I have inquired 2 specialist and both of them suggested me to do Remicade. I have only taken 60 days of Pentasa prior to my 2nd colonoscopy where I was then diagnosed with CD.

I have some fistulas in my anus area, and that's what the 2 specialist told me that Remicade will try to eliminate it - however, I am not feeling any pain with those fistulas, only having something in that area is awkward. My specialists also mentioned that my CD is the penetrative type - does that mean more and more fistuals will develop to me ?


My question is.. do you think I should take remicade at this moment ? Like I've mentioned I have been living a normal life without having any bad symptoms or aches. At this moment I am consulting a chinese doctor, following her instructions with not eating certain kinds of food. I just turned 27, and I really don't want to take Remicade for the rest of my life without knowing their side effects.

I have been extremely stressed and depressed about this.. crying at work whenever someone ask how I'm doing or so..

Please give me some advice everyone.. :(
 
I've been on Remicade since 2009. It has worked wonders and every time I get sick and makes me feel better after about a day or 2 after infusion. I actually enjoy going to the place to get infused cause I get to talk to others with this problem which I don't really know anyone else with this expect for my brother.
 
My husband is on his 2nd infusion and he still has no relief yet. We can tell its targeting the active Crohn's because he is so swollen. I am hoping that this is the answer. It's good to read that their could be a light at the end of the tunnel. How long has it taken the masses?
 
From what I can tell, once again, it's different for everyone. I felt a little better after the first infusion, about the same after the third, and a bit better now as time goes on, at least in the tummy. My body is aching, a side effect, but that seems to be easing up a bit too. I Hope your husband feels better soon too.
 
I felt better after my first infusion...my main trouble though is bleeding not really pain. I haven't had blood or mucous since I started...except for 2 days last week but not at all like im used to. I do have the fatigue for a couple of days after the infusion and im achy the day of and after as well but I can handle all of that. I did wake up with diarrhea this morning but I blame all you can eat melting pot(a specialty fondu restaurant) and I ate to much. I also seem to take a lot longer for wounds and things to heal...
 
Jason,

I loved remicade when I first started... but when I started, I not only had two fistulas, but I was also very weak and in a lot of pain. But it was a miracle drug for me - I completely transformed almost overnight. Remicade brought my disease into remission. However, it did not heal my fistulas.

It's different for everyone... but if you're worried about side effects, I didn't really have any. Sometimes, I would feel like I was coming down with a cold the day of and the day after treatment, but I never actually caught anything. After my first infusion, I tried running for the first time in months (a mistake) because I felt so much better, and it took my lungs about a week to recover from jogging half a mile. But now, I run all the time.. :)

You may not be on remicade forever if you start, so don't let that scare you. A lot of people are only on it for a short time. However, in some cases (I believe it's rare), if you go off remicade, you might not be able to get back on it. Now that I have been on remicade for almost two years, I'm resenting the hits to my pocketbook and having to take off work every eight weeks for my infusion.

However..

The infusion centers are awesome if you get a good one - mine just got private rooms and flat screen TVs. I usually bring coffee and a snack and take a nap during my infusion. It's like a mini-vacation - it's very relaxing to me.

There is a rebate program for people with health insurance that will pay your deductible for you, limiting your out of pocket. It's called Remistart. Look it up. Your infusions could end up being free if you play your cards right. And, if you let the rebate program pay your deductible, well.. you don't have to pay for your healthcare for the rest of the year. So it's not always financially burdensome. Last year, my rebate program paid more than $3000 for the infusions (my max out of pocket), and I had surgery a few months later.. and didn't have to pay a dime out of pocket.

I've had two fistulas, and I would never choose to live with them if there was even a small chance that I could get rid of them.. no matter the cost. I'm desperate to have a healthy, normal body. But you have to decide what is best for you. Everyone's circumstances are different :)
 
My little girl -- she turns 13 next month but to me she'll always be my little girl! -- starts Remicade next Tuesday (the 28th). At first I was so upset about her having to have the IV's. But she is so strong and the IV's don't worry her. Plus, I've been watching her just get sicker and sicker again and so I'm really hoping that for her, like many of you, this is the miracle.
 
Shansmom - good luck with the treatment! I'm sure going through all of this has made her grow up pretty fast. It hurts to see children ill, but it seems sometimes they deal with all of it better than the adults do!

I hope the Remicade works for her, most people feel some improvement fairly early on, hopefully that will be the case.

The infusions can be a bit long, video or computer games, music, books and things can help pass the time. Also bring water and some snacks in case you get hungry!
 

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