Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

yes i have been on prednisone, but id been on it for almost 2 months, and then i didnt get the teeth thing until right after the remicade, and it got worse after my second dose. im down to one 5 mg. tab of prednisone, so i guess i will find out soon if its that or the Remi. Thanxs:)
 
I get my very first infusion of Remicade tomorrow. I'm kind of nervous. The lady said she will give me Tylenol and Allegra before my infusion just in case I have any kind of reaction. She said it would take about 3 hours and I may be very tired afterward. I hope this stuff works.
It's a bitter sweet feeling of excited and nervous all at the same time today.
Wish me luck!!:yrolleyes:
 
Farm,

I know how you feel! I was excited and nervous about my first infusion on Monday, but it went really well for me. I was very relaxed and even took a nap at one point! The only side effect I've noticed so far has been fatigue. I was really tired Monday night, but I feel like my energy levels have improved since then. No fever, chills, flu-like symptoms (yet) that they say are a possibility.

I hope it goes well for you! Good luck!

Beth
 
ok everything is set for me ^-^ i start it on july 13th at 1pm they said they will do it in the drs office so i wont have to go to the hospy for it!
 
Got my first Remicade today. 500ml. I feel fine. No fatigue or anything.
I was a bit surprised to find out where remicade derived from.
 
Remicade is a chimeric med... meaning its made with mouse proteins.

Humira on the otherhand is basically the same as Remicade with human proteins, so theres less chance of a reaction to it.
 
i just thought of something, when i start remicade like the day of the infusion and afterwards, will i still have to take my pentasa? they said they would stop my pred, but will they stop my pentasa too, or should i stop now to let it get out of my system before i start the remicade? i would ask my dr but he is in spain running with the bulls! (more like thining of the heard lol!) but im just not sure what is up with the pentasa, so if someone could tell me what will happen with that i would be grateful!! XP
 
I am supposed to continue my pentasa and taper down and stop the predisone. I would not stop taking the pentasa.

I did end up getting pretty fatigued yesterday evening.

Yeah, um, mouse proteins. I could save a ton of money and start eating mice eh??:eek2:
 
Did anyone have a severe asthma attack after taking this stuff? I did. I want to say it was the mouse DNA cause I'm a very allergic kid but I can't be sure.

I'm so glad I'm not taking it anymore. I felt better a week after but 3 weeks in it felt like it even made my symptoms worsen.
 
Well I was hoping for a miracle after my first infusion, however I haven't felt any effects of it yet. I'm hoping my next infusion really rocks my world and puts this beast back in remission.
 
yea i cant wait for my first dose, im going to get my tb test today at 3 and my first infusion is the 13th! it kinda sucks tho that i will have to still take all thoes pentasa, i was hoping i wouldnt have to take ne oral meds with getting the remicade, but i guess that would be to much to ask for lol!XP
 
I developed joint pain over the last week, so I rang the hospital to check my blood results.

Haemoglobins are going up. Inflammatory markers are going down. Looks like it's actually working. :)

I suppose I can live with a bit of (minor) joint pain.
 
I have been on Remicade (known as Infliximab over here) since the end of December 2007. It has worked wonders for me.

I am on no other medication alongside the remicade, was supposed to be on Imuran and Pentasa, but I asked if I could see how I went without them as I was sick of taking tablets that made me feel yucky after being on Methotrexate for so long. The Pentasa were also giving me crazy hallucinatory dreams for some reason!

I get mine given in over one hour now so it is over very quickly, and I am very lucky to have suffered no side effects. The only thing that happens is about 15mins into the infusion my blood pressure drops quite a bit and I feel drowsy, and just feel a little drowsy for the rest of the day. Nothing drastic though.

It is a fabulous drug and although I go for my infusion every 8 weeks at the moment I do get a really good 5-6 weeks of feeling ''normal'' the remainder few weeks I do start to feel pretty exhausted.

All in all it is a massive thumbs up to Remicade from me!
 
im nervious and excited at the same time, i go tommarow for my first dose, so im not sure what will happen, hopefully nuthing, im having it in my drs office not the hospital. i will try and get on after its all done to let you all no how it goes!! ^-^
 
Anyone ever quit remicade cold turkey and what were your side effects? I quit back in November and at around 5 months or so being remicade free I started to get night sweats (physical dependancy) and excruciating lower back pain.
 
wo0t! i got it done with nothing happening! but there was a horribly boring room. your alone with the dr the whole time and noone else. so im hopeing to get some money b4 my next appt so i can buy some books! so yea im happy it went good she messed up the iv tho but oh well everyone does on me! ^.-
 
had my 5th treatment and they were so busy @ the clinic that they couldnt wait to ship me out of there and free up my chair. I guess that makes me an old hand at it now? Even tho its only been 5 treatments. :p

I just wanna get off the other drugs and stick with the remicade,...its the only one that really seems to make a difference anyways...well...not forgetting my vitamin supplements which help me to keep my energy levels up. ;)
 
I started on remicade infusions about 3 weeks ago now. I had one at the start of July and my 2nd one last week. My 3rd infusion is scheduled a month later in mid-August.

I'm not feeling any side effects really and I'm posting because I want to get my ears pierced and hair colored and I'm worried if that's impossible when I'm on remicade because they warn you about open wounds and infections and I always hear about piercings have the potential to get infected.

I've never gotten a piercing before, so I was wondering if anyone hear has gotten their ears pierced while on remicade and if it was ok?

Same question for tattoos as well (not planning on getting one, but who knows!)

Thanks,
 
Be careful with the piercings... I have my belly button pierced (got it done at 16 before I was even diagnosed) and if your body doesnt respond well to foreign metals, you will have an issue. I was a normal healthy girl and it got infected for about four or five months... it finally healed up and I don't even remember I have it now, but I knew I had a nickel allergy and I went and did it anyhow. Being on Remicade, I can only imagine, would make it wayyy worse.

My ears get infected sometimes if I mess with my earrings too much or if I don't put in hypoallergenic studs.

Like I said though, now that my body is used to the pole in my belly button, I don't have any problems with it.

Just be careful because piercings tend to be a whole different game than tattoos.
 
I got ear piercings while on Remicade and they took the normal time to heal (about 6 weeks). My piercings do get infected every so often and the infection takes forever to clear up, but I have 3 holes in each ear, which exacerbates the problem.

I think as long as you're extra-diligent about swabbing your piercings with the alcohol solution and make sure you put in high-quality studs, you should be fine!
 
Yippee!!!! Another Remicade infusion done!
It took them a frikin hour and 20 minutes before they even got me hooked up though, so it took 4 hours total. Why bother to pre-medicate if you're just sitting there anyways??
So then 2 blown veins later, I say "Do you want me to try the next one? I went to school for it.", just to mess with her. She got it on the third try - in the back of my hand. Not sure if it was my veins or her technique. I guess everyone can't be perfect every time sticking a vein. She had me squeeze a ball first though, and they never have done that before. I wonder if that had anything to do with it. I mean TWO blown veins? The third one she tried without a tourniquet (shut-up, you know I spell checked it, but I was only one letter off) and it worked. THEN she taped my hand so I couldn't bend my wrist, and I wanted to crack it SO badly. And THEN - in case I wasn't having enough fun - some volunteer make-up lady came around and asked if I needed some pampering. Ha! Get away from me lady!! I finally agreed to some hand lotion and told her I was going to take a nap. She had telemarketer written all over her. She patted my legs and told me to have a blessed day, grrr. It was blessed until she got there...
There is never a dull moment at that place I swear - but I would go once a week as long as I feel good! ILOVEYOUREMICADE!!! Next infusion 9/28/09 - can't wait - not kidding.
 
can you send the make-up lady to my next infusion? all i ever get are weird guys with guitars and funny hats.
 
Make up ladies and guys with guitars and funny hats?!

All I ever got was DORIS.

I think I kinda liked the one they put in the back of my hand... I felt free-er.
 
Got mine yesterday. Man does 2 months blow by quickly.

I complained to hospital administration a few months ago b/c I was waiting for 1.5 to 2 hours for my remicade to come up from the pharmacy & now I call with my weight an hour before my appointment & it is ready and waiting for me when I get there! How nice is that?!

Telling the admins that I spent (well, me & my insurance) $47K last year at their hospital was good leverage. They don't want to miss out a good paying crohnie like me!
 
can i join the club please? im due my first infusion tomorrow, im a bit nervous, all the talk of allergic reactions has got me a bit spooked
 
CROHNS SUFFERER said:
can i join the club please? im due my first infusion tomorrow, im a bit nervous, all the talk of allergic reactions has got me a bit spooked
Click to expand...
I haven't had any reaction other than being somewhat tired afterwards.
 
CROHNS SUFFERER said:
can i join the club please? im due my first infusion tomorrow, im a bit nervous, all the talk of allergic reactions has got me a bit spooked
Click to expand...
You sure can join! Welcome to the forum too, CS. Let us know how your infusion goes when you get a chance. Good luck tomorrow!
 
Remicade

I've been on remicade since Dec '08. I was diagnosed with a severe crohn's last summer and so far it has helped greatly reduce my inflammation. Infusions are not bad. I usually fall asleep from the benedril that you have to take during each visit. So it turns out to be a nice 3 hour nap.
 
Getting my first infusion on friday, Aug. 14,2009.
My tummy aches, but after reading some of your responses my nerves have lessened.
I hope Remicade really does work for me!
:D
I'll have my second infusion two weeks after this friday.
Wish me luck guys.
I'm glad i found this club!
:D
It'll give me emotional support.

My name is Rose Mary.
 
Hi Rose! Good luck with your infusion tomorrow, and welcome to the forum. Let us know how you did!
Welcome to you too, JerseyGirl. If you two post an introductory thread in the "my story" forum, you'll most likely get a more proper welcome.
 
so yea im getting my 3rd dose on the 24th, but last time my dr said i was in remission already, which is good, i have very little pain, but i still have a lot of d and frequent bm's so i thought with remission that stuff went away, is it just that it doesnt go away or is it maybe im not totally in remission?
 
I had my first infusion on the 4th aughust. this hasn't made me feel any better, if anything my pains getting worse. my ileum has got alot of narrowing, and is giving me no end of trouble now :( spoke to my gi nurse and she said i should be feeling better not worse. i am soooooooo tired and sore its unbelievable. i would actually rather have the diaherrea back than be in this much pain. ive never had it this bad. i have my 2nd infliximab infusion on the 21st. seriously hope this helps as ive just had to take another 2 weeks off work. which i hate doing. god i hate crohns!!! all my nurse and doctors keep saying is that its acute and everybodys disease is differernt. arrghh!!!!!
 
looks like i'm about to become a member of this club, just returned from the hospital, was there for a week getting further testing completed (my new GI rocks!)... so now in the process of getting my remicade treatments set up.

i'm a bit nervous.... but also looking forward to seeing if this will get my symptoms under control. i think it will.

i will update later.
 
i'm getting my infusion right now. i love free hospital internet. other than my blood pressure plummeting, all is going well!
 
colds/remicade

I am due for my next infusion on the 24th. 2 of my kids are sick,running 103F temps, coughing headaches.....I was wondering if anyone experienced their cold symptoms being worse while on Remicade? I'm praying that I'm already immune to whatever bug they have. Thanks
 
Remicade trials and tribs

Wow, this is where I found out what I thought I was experiencing. Tomorrow is my next infusion after 8 weeks. It's the first time that I have gone this long. In the 7th week, I had two really bad days, kept me home from work. YUK!! Since, I'm just exhausted. I thought about everything I had ingested, food, drink, meds, extra, nothing made sense. Yesterday, I was talking about this with a friend and told her my suspicions. She said Google "Remicade cycle" and this forum popped up. I'm very relieved to have my suspicions confirmed and tomorrow during treatment, the doc and I will have a little chat.

Thanks for being here, Sandi
 
yea ive told them, and she said i was in remission because when i go to get my remi she gives me like a little survey thing and i guess if you get a certain score thats low enugh then your in remission, yea, i dun get that either, but w/e.
 
my 13 year old daughter had her first infusion yesterday. no major side effects.. just a headache and some neck/back pain but that could be from laying in a hospital bed for 3 and a half weeks too. no improvements yet either. how long is average for it to show signs of working??
 
lesleymariep said:
my 13 year old daughter had her first infusion yesterday. no major side effects.. just a headache and some neck/back pain but that could be from laying in a hospital bed for 3 and a half weeks too. no improvements yet either. how long is average for it to show signs of working??
Click to expand...
Awww, welcome to you and your daughter. I'm glad to hear she got through her infusion okay. Must be scary for a little girl.
My nurses said that it usually kicks in by infusion 3 or 4 for Crohn's patients, but mine kicked in earlier than that little by little. I started in November, and I have been in almost completely full remission for about 6 months now.
Some of us on here felt in actually kick in during their 1st infusion. Hope it works quickly for you - welcome again!
 
I will be having my first infusion 9/18. I'm pretty nervous about this. I had a heart attack 7/3 and I know that people with heart failure are not supposed to take Remicade. I did not have heart failure, but I'm pretty scared about this. My GI office is connected to the hospital so if there's a problem, it won't take me long to ge to the hospital.

Anyone else in the club with heart problems?

Chelli
 
sick

Shantel said:
YES - if I'm feeling a bit sickish - I don't get my Remi. I got a cold several years ago that everyone else in the office was over in like 4 days or so. I had it for over 4 weeks trying to get rid of it. It was annoying. Everything is slow to heal for me on Remi. I'm a lampwork artist (make glass jewelry at a torch). If I burn myself - it takes FORever for it to heal.
Click to expand...
Okay, I am sick. Body aches, coughing ,runny nose...but I'm not running a high temp like my kids did. I am so bummed out! Now I'm worried I won't get the best effect from the medicine if my schedule is out of wack! I hope I will be able to get it later this week. I really think my kids picked up some kind of flu virus because the body aches and pounding headaches are not normal cold symptoms.:(
 
Hi guys,

I'm new to this place but reading all of your stories and experiences is really helpful. I had a bad flare up a couple of weeks ago and I'm in steroids to keep the inflammation down but I've just been told I'm going to be on Remicade soon. My consultant wants to treat the Crohns aggressively so I'm going to be starting it in a couple of weeks.

Really nervous, I still don't know a great deal about it but I'm finding out as much as I can. I'm intolerant to Azothioprine (pfft spelling malfunction) too so I can't can't that with the remicade.

Wish me luck.
 
That makes me feel so much better. A lot of what you guys have said has been positive so I'm looking foward to feeling better soon. The doctors don't want me to have to have an operation any time soon or for my tolerance to steroids to wear off so I suppose this route is necessary, I'm just a bit of a wimp when it comes to needles and drips and needles...

AND I need to stop smoking!!
 
You're right - you really do need to stop smoking. It can REALLY aggravate your Crohn's. There is a 'quit smoking' thread on here. When you're ready, you could join it and we would all support you. GCS 2009 or something (I know the letters are wrong, but close)
And trust me - the needles are SO worth it when you stop 'going' 234987 times a day =)
 
Shantel said:
I was just about to agree to up the dose when I started having hives (every day for 5 weeks straight - I've not had them for about 1 week now) and now I have been diagnosed with rosacea and dermatographia trying to figure out the hives thing. This is how I stumbled onto you guys last night - trying to see if there is a connection with all this.

My next infusion is September 2nd. I'm not going to increase my dose this round - just going to see if the hives come back in full force after the infusion.

Fun (itchy) fun!
Click to expand...

I just had my 4th infusion and during it, I started to break out into hives. I was given some Benadryl and they went away. Is this anything to be concerned about or has anyone else had this happen during the infusion?
 
Thanks Shantel. I wasn't feverish on Monday so I went ahead and had my infusion. Every thing went good. I am just so exhausted this week. This was the first week of school and just a lot going on. I don't know if its the Remicade or a combo of everything. My cold symptoms didn't guess any worse so I guess I dodged a bullet.
 
coronetrt101 said:
I took Remicade a while ago... Does that make me part of the club too??? When I took it it gave arthritis in my left hand for months, anyone else have that?? Not necessarily the left hand but arthritis?
Click to expand...
Full of Remicade induced arthritis! It moves from joint to joint - right now my left elbow is swollen and red and so so sore - two days later it will be gone and my left knee will blow up - going off the Remi and trying Cimzia....
 
Shantel said:
SAM - the only reaction that I've had during infusions is a low grade temp and headaches after. Happens pretty regularly. Did they tell you that you would continue to be able to receive them? Maybe they just have to up the benadryl?
Click to expand...

I have to take Benadryl or something like it for 5 days prior to my next infusion. Before this happened I wasn't taking anything prior. So, hopefully it does the trick. I've felt fine since my infusion, no problems.
 
I've been on remicade for a while now and I must admit that while not all my symptoms are gone I really am feeling better; more and more each day.
Thank God for remicade. Hopefully I'll be in full remission soon.

I wish this "luck" on each and everyone of you!!
 
Can I join? Can I can I??? :ylol2: I'll be having my second infusion of this go around with Remicade today. I go in at noon - perfect time for a looonng nap. Helps pass the time.
 
REMI TODAY!!! I'm still lasting the full 8 weeks - still feeling awesome - I love Remicade!!!

I have been on Imuran and Pentasa as well, and I asked my GI if I should quit one, because being on Imuran and Remi at the same time just isn't sounding so good if you read the paperwork. He was thinking I should stop Remi. WHA??!? I was thinking I should stop Imuran, so he had me wean to 50 mg a day for 2 months instead of 100 mg. I've now been completely off Imuran for a week. I hope that doesn't bite me in the ass.

Anybody else really itchy from Remi? My chest neck and face is really itchy lately. Feels like dry skin, but lotion isn't really helping.
 
YAY! An uneventful infusion. Only 3 hours and 15 minutes.
Though the billing lady came to tell me that I didn't have preauthorization for that infusion. WHA??? She called me doc's office for me and left a message... "It shouldn't be a problem..." she said. Good god - I hope the insurance company sees it that way!

The funny thing is, I stopped to get a prescription on the way home, and looked at the calmoseptine JUST for fun. They had FOUR tubes!! They have never had more than 2! It's catching on!!
 
jim

I had my first infusion on Thursday. Its Sunday and I'm flaring. I went to work and had a bad day. Should I take some Prednisone so That I can function? This is my first post. You all have been helpfull. I will introduce myself when I feel better. I just want to know if its safe to take a little vitamin P now that I've had my infusion. I got to work tomorrow.
 
Thanks Shantel, you and your posts are most helpful.I might not be flaring. I went to the bathroom 12 times yesterday and had a little anxiety. 8 times today. I had a predictable bathroom agenda before the remicade. I like to be in control. Good luck with all your stuff also. I'll tell the doc. thanks for the reply. #2
 
imisspopcorn said:
Third dose done and gone!! Yahoo!!

I have a Remi twin somewhere around here???Where is he?
Click to expand...
Got my 4th dose yesterday. YAY!
 
My Butt Hurts said:
...though the billing lady came to tell me that I didn't have preauthorization for that infusion. WHA??? She called me doc's office for me and left a message... "It shouldn't be a problem..." she said. Good god - I hope the insurance company sees it that way!
Click to expand...
This ^ is from my last infusion. I have since gotten a letter that said I would be denied coverage until my GI sent them the dates of my last 3 infusions and the date of my next scheduled infusion.
Today on the phone I was told that the authorization went through. I was scared to ask if they meant the NEXT treatment or the previous treatment, so I didn't ask. I don't even know why I am writing that here, I am sure I am going to get lectures from you. I *think* it's over then? Hmm...
 
Hahaaa - how did I know that Shantel would be the first one to reply to THAT? I started asking a question, then thought better of it and said, "they'll send me a letter right?" They will - so I should know in a few days.
 
Figured I might as well join the remi club on here since my second infusion will be this coming up Tuesday, and my third will be the Monday before Thanksgiving! I'm hoping I can start to feel some what normal next week after the infusion.

Question for everyone do you have someone drive you to the location or do you drive yourself? I only ask because last time they gave me benadryl and made me a bit sleepy but was awake when all was said and done. This time around I believe they will give me clariton instead of benadryl. The hospital is maybe 5 miles from my house so I don't have to go far and my girlfriends mom offered to bring me if I wanted. But yeah I'm excited I just want it to be Tuesday already. :mario2:
 
Skinny Dub said:
Figured I might as well join the remi club on here since my second infusion will be this coming up Tuesday, and my third will be the Monday before Thanksgiving! I'm hoping I can start to feel some what normal next week after the infusion.

Question for everyone do you have someone drive you to the location or do you drive yourself? I only ask because last time they gave me benadryl and made me a bit sleepy but was awake when all was said and done. This time around I believe they will give me clariton instead of benadryl. The hospital is maybe 5 miles from my house so I don't have to go far and my girlfriends mom offered to bring me if I wanted. But yeah I'm excited I just want it to be Tuesday already. :mario2:
Click to expand...
I don't pre-medicate before my infusion for that very reason. I figure If I have a reaction they can give it to me then?? Do they ask you if you want to be premedicated, or is it their protocol to give it?
 
Welcome , let us know how it goes. I drive and have a plan B. Everybody is different. My 2nd infusion is on Thursday. My 3rd ,Nov 5th. Good Luck, #2
 
I have a question. I've had 2 infusions so far. I now have the big D. Very watery and frequent. Does this mean that the remicade is not working? Should I tell my GI that we need to find another treatment?

Thanks for your help.
 
I'm joining the club tomorrow at 1:30. Just talked to the doc and she's calling in some Atavan for me so I can get through it. This better work - I'm soooo bad today, ugh.
 
Shantel said:
Carrie - do they not give you SOMETHING (Zyrtec, claritin) about 30 minutes before the infusion? I thought that was protocol. They also told me I could take something before I come in - but I figure what the heck - let my insurance pay for it......
Click to expand...
They ask if I want to be premedicated, I always say "No". They must have standing orders, but its every patients right to refuse what ever treatment they don't want. (I do get nervous though after reading about peoples reactions. Especially because I had 2 doses last July before my resection and then stopped the Remi until now)
 
chelli said:
I have a question. I've had 2 infusions so far. I now have the big D. Very watery and frequent. Does this mean that the remicade is not working? Should I tell my GI that we need to find another treatment?

Thanks for your help.
Click to expand...

Give it a chance. I am finally starting to feel better after my third dose. Just let him know your symptoms.
 
Me too, just to be on the safe side. Can't hurt to take a non-drowsy Claritin and 2 Tylenol. (Though I had to get clearance from my doc).
If it can KEEP you from reacting, I'd rather do that then take a chance on reacting and then having to take IV antihistamine or however they do it.
 
So I had my second dose this afternoon all went well. Before they did the iv and stuff they gave been Tylenol and claritin took a total of 3 hours, and I guess I can cut this time down if I call ahead so they can order the remi from the pharmacy. No reactions from the infusion so far, didn't expect any to begin with so all is well.

While I was there got to watch TV order some lunch next time I think I will bring my laptop. Now its just a matter of waiting and seeing what remi can do for me. My next load dose will be on Nov 23 and from then I think the plan will be every 8 weeks.
 
I love remicade!

I used to read this forum quite a bit, but since Remicade has been working so great for me I quite often forget I have Crohn's. :) I have been on Remicade since December 07. It has been a miracle drug! I go every 8 weeks. The only way I can tell that I am getting close to my next treatment date it that my joints get a little achy. I am so nervous about the dreadful time when Remicade stops working. I refuse to go back on prednisone. My doctor thinks I will probably go on Humira when the Remicade stops working. I am hoping it will last at least 3 more years b/c my husband and I would like to have a baby while I am on it b/c it make me feel so great! But...no maternity insurance, and I got declined from his...that's another story...

I usually have someone take me to my infusions, mainly for the company. Sitting there for 3-4 hours can get kinda lonely. My husband usually goes with me, but my mom and mother-in-law have went too. We make a whole day of it, drugs in the morning and then out for lunch!
 
That's great to hear Aisenburg. I hope it continues to work well for you. I wonder if it stops working for everyone eventually? Hmmm..a question for my GI.
 
My GI Doc started me on Remicade and after my first infusion I ended up in the Hospital with a very bad Fistula (abscess and all). So I haven't used it since. What other Med works like Remicade that I can try?
 
After further review of my loading dose schedule I realized that they where to far spread out It would of gone 0,2,10 weeks instead of 0,2,6, then 8 weeks. So my next one will be Nov10 not on the Nov23 I really hope this works for me. My belly is still really firm and looks like I have a beer gut:ylol2: everything seems to still be moving threw just really really slow.
 
Im in the final stages of getting on Remicade. I saw my GI today and he said I should recieve a letter stating the day I will have my first infusion. Im anxious to get started on it. A personal trainer I met at the gym said Remicade changed her life, she was very limited to what she could eat before (like I feel I am) and she couldnt have any alcohol without paying for it, now she can eat and drink as she pleases without ever having to worry about it coming back to haunt her. I hope that it works well enough to have salad again haha!!! I miss it so much! I just really hope it has a positive result for me!! I would love to get off the steroids I hate what its done to my body!
 
Shantel said:
Are you saying the Remi "caused" the fistula or that you just got a fistula and they took you off Remi? I thought Remi was good at clearing them up - of course it would take more than just one infusion.......
Click to expand...


My Gastroenterologist said that it sped up the infection. So he canceled the rest of my infusions.
 
Insurance Issues?

Did anyone have issues getting approval from their insurance company to begin Remicade?

I had colonoscopy on 10/2. The doctor could not complete it. I have a stricture and an ulcer near the stricture. I was diagnosed in 2001 and ended up having to have a resection in 2002. I'm afraid I'm going down that route. I am currently on prednisone and I HATE it. I'm not sleeping. My hair is a mess and I can't even begin to express how I feel emotionally.

My insurance has refused to approve the use of Remicade and now my doctor has to appeal. What has been your experience with this process? Any advice?
 
Shantel said:
Did it just start - or have you consistently had it the entire time you have been on Remi and it is getting worse? What is your loading schedule for Remi? Are you 8 weeks apart or are they infusing you closer together at the beginning?
Click to expand...

I am scheduled to start my 3rd dose 10/30. My GI doc concurred with IMP and told me that I should give it a chance.

I'll wait and see what happens after my next 2 doses. Thanks for responding.
 
imisspopcorn said:
Give it a chance. I am finally starting to feel better after my third dose. Just let him know your symptoms.
Click to expand...

I told him my symptoms and he suggested, like you, that I give it a chance to work.
 
Plangirl said:
Did anyone have issues getting approval from their insurance company to begin Remicade?

I had colonoscopy on 10/2. The doctor could not complete it. I have a stricture and an ulcer near the stricture. I was diagnosed in 2001 and ended up having to have a resection in 2002. I'm afraid I'm going down that route. I am currently on prednisone and I HATE it. I'm not sleeping. My hair is a mess and I can't even begin to express how I feel emotionally.

My insurance has refused to approve the use of Remicade and now my doctor has to appeal. What has been your experience with this process? Any advice?
Click to expand...
Plangirl, Remicade has a Payment Assistance Program (PAP)for under $27K . It is too bad they make you and your doctors jump through all these hoops. Prednisone caused Osteonecrosis in both of my hips and I had to go back to it, it quit working, and now it's Remicade. I 'll bet your doctor will get it for you. The side affects from Prednisone are very unpleasant. I hope it works out for you.
 
Ok, I need some confirmation for the soul.

I started Remicade in July.

Took 100(mg?) vial infusion - cost $2000 + $800 for the doctors place where they infuse it. Small adverse reactions like hiccups for a day and feeling a little off. My immune system took a big hit and I started getting sick very often.

2 weeks later took another 100 vial infusion. $2800 again, same light symptoms. Still getting sick a lot; tonsilitis, sinus congestion.

7 weeks later (I was sick so they delayed the week 4 dose for 3 weeks) took another 100 vial infusion. $2800 again, same light symptoms still getting sick a lot.

Now it's 7 weeks since then. The remicade ordering place says the "maintainance dose" which they say I'm supposed to take from now on every 8 weeks is 250mg sent in 3 vials of 100mg for $6000. Also the infusion place messed up on counting weeks and my 4th and next dose is scheduled for 9 weeks after that last 100 vial in the start of September.

Is this how it normally works? No doctor or anyone EVER TOLD ME that there would be a change in the volume of the medication infused and now suddenly they're saying I'm going to take a 2.5x dose. I'm a little worried because:
A. It costs $6000 instead of $2000, which is a lot more even though the insurance covers it for now.
B. I was getting minor adverse reactions from a 100mg infusion, I'm worried about how my body will react to 250mg at once.
C. My immune system was in the DUMPS everytime after 100mg and I was sick every other week. If 100mg dropped my immune system that much I'm afraid I could die or something with the amount 250mg would lower it.

Can I get some reassurance that this is normal? I'm going to call my referring doctor tomorrow (unfortunately my remicade doctor lives far away from me and wants me to do it through my local GI who doesn't know much about remicade who wants me to get it infused at a local chemo guy's place who knows absolutely NOTHING about remicade; It's a mess and it means there's a lot of misinformation which is kind of scary) and ask the same questions.

The remicade itself is working GREAT and my intestines feel wonderful and I can eat anything whereas before I had to stick to a very small diet of edible foods as anything else would give me pains and bloating.

Thanks,
 
Yeah its normal for your doses to go up if you aren't responding as well... but you said your gastrointestinal issues are better? I'm not sure why they would increase your dose. I was at the double dose every five weeks and it was $5000 a shot... $10,000 for the double every 5 weeks. But that was also when the double dose was wearing off after 3.5 weeks.
 
After some research it seems like the administering infusion doctor (who doesn't do remicade normally and has no idea about how it works) screwed up.

I think my GI doctor prescribed 250mg doses (I weight about 113 pounds, so at 5mg/kg that would be ~250mg) and the drug company sent it in three 100mg doses to the infusion doctor since they don't make 50mg vials.

At this point the infusion doctor must have thought since the vials say SINGLE USE VIALS that he was supposed to just administer one each time.

So I was supposed to take 5mg/kg at 0,2,6 and then every 8 weeks.
Instead I've taken about 2mg/kg at 0,2,9.

I think the infusion doctor messed up and I have no idea what this means. I wonder if I can just up the dosage at this point, or if they'll want to completely start me over at the real 5mg/kg 0,2,6. I'll see what my remicade doctor says tomorrow when I call. It would have been nice if someone noticed this, but my doctors just say "hows the remicade going? -fine; good, good; see you in 3 months". That is my checkups. No one really follows my health at all unless I'm doing bad and I call them and make an appointment. :\

And the thing is that it's not even like "wow, you were doing good at 2mg/kg". I was fine to begin with as I started on this after having a small bowel resection surgery that completely removed all the crohns in my body. So I didn't have any pains to begin with. The remicade was a preventitive measure to keep it from coming back. I hope this messup isn't going to mean it comes back really soon :(
 
Last edited:
davek said:
And the thing is that it's not even like "wow, you were doing good at 2mg/kg". I was fine to begin with as I started on this after having a small bowel resection surgery that completely removed all the crohns in my body. So I didn't have any pains to begin with. The remicade was a preventitive measure to keep it from coming back. I hope this messup isn't going to mean it comes back really soon :(
Click to expand...

Wow davek, That's a pretty big medication error. Who was administering it, an actual doctor or an RN? Can you find out what the doctors orders actually were written as?
1.) Who ever is administering the drug should follow the doctors orders as written. If it said 5mg/kg. You should have gotten the 255mg over 2-3 hours
2) Did the prescribing doctor not correctly write the order?
3) I don't care if they don't normally do Remicade. You follow the doctors written order unless you find a descrepancy. (Then it is the nurses job to clarify the order.) As a nurse you reference a PDR or drug handbook.
I recieved the 5mg/kg dose from the get go...Somethings not right. I don't understand why your GI doesn't know much about Remicade and he sends you to another doctor for the meds. Let us know how things go...

I am in a similar situation as you, I had surgery about 1 year ago. I am not having any pain, but am showing signs of active disease again. I have had 3 doses of Remi. I hope you can get to the bottom of this. I hope everything works out.
 

Similar threads

B
My healing story: towards full recovery from UC
Replies
2
Views
2K
kisseefitzrandolph
K
V
My Novel, Pain in My 🍑
Replies
1
Views
4K
valleysangel92
valleysangel92
RoyW
My tips /advice after being in remission for 10y
Replies
6
Views
5K
Cliffandmorgane
C
awoenker12
Starting Remicade
Replies
10
Views
3K
Jelly loves Peanut butter
J
S
SIBO & Infection Experience (Crohn-like symptoms)
Replies
1
Views
12K
chrohnotrigger
C

Latest posts

Back
Top