Remicade Club Support Group

[davek]

Well, I'm waiting to hear back from my doctor but it's possible that things are fine.

When I called the drug company to order my next 250mg set of vials, they had said they only sent one set of vials previously at the start of the treatment. So it seemed like the first 3 infusions came from one set of vials.

I called the administering place and asked them how much they had given me each of the 3 times I'd been there and they said 250mg. They said the starter kit they received at the start at three sets of 250mg.

So maybe things are fine. I'm going to call the drug company to just confirm that the "starter kit" they send has 3 full doses or 9 vials in my case usually. If they say yes, then mystery solved and everything is fine. If they say no, well...back to square one.


Re: Getting sick while on remicade, yeah I go to grad school and my gf works in public retail so I'm exposed to people all the time. Lots of sick people during the fall flu season.

 

[Skinny Dub]

How long does remi usually take to start working? I still feel like im not really getting any better after my second load dose and a ton of other daily meds ie: predison, azasan, asacol HD, vitamins. I realize that it takes time to build up and start working just wondering if I should start to feel it after my next load dose? Also what other people have experienced? All want I do is want to eat and gain weight but I cant do that because I still feel my stricture is acting up or its just so scared and damaged that its hard for anything to get threw. :confused2:

 

[Skinny Dub]

lol yeah I meant prednisone and I'm at 30mg have been between 30 and 40 mg for more then a month now. Just talked to my Doctor and he isn't impressed with the way remicade is working for me. So we will see how long I stay on it.

So on that note he is going to put me in touch with the surgeon so we can talk about my options since I haven't been in remission for more then a year now.

 

[Skinny Dub]

Me too! But I feel like there is so much damge already done that no drug can heal that. So I will be talking to him to see if he thinks its going to be good and or right for me.

 

[Skinny Dub]

From what I gather my narrowing is in my ileum. After my two recent partial blockages I believe it has gotten worse and the damage is beyond any drugs help. If I have to have a resection staying on Remi would be nice to keep me in remission longer but thats all up to the Dr. so we will see.

btw shantel I like the new pic

 

[s.a.m.]

Just had my 5th infusion, and this time no reaction! Taking Benedryl before hand worked, and I am relieved I can continue w/ Remi as it is the only thing that has really worked so far.

 

[russem2]

http://www.clevelandclinicmeded.com/online/webcasts/crohns-disease/medical-therapy/

 

[heatherk]

is 14 to young to try remicaid

My son is 14 tried flagyl (he could not swallow he gagged) 6mp (vomiting and fever, very bad) pentasa( did nothing) been to 2 doctors and they both say remicaid is his next step? Should we try something else first? and what? I am scared to start it too early and have nothing to fall back on?
thanks.

 

[kris13]

Have had two infusions!

Have had two infusions and my next one is Nov 9. I am new to the Crohn's forum! So Hi all!:smile:

 

[My Butt Hurts]

Kris - YAY! Welcome to the Remi club!! I see that you've posted a few times, but if you do an introductory thread on the "My Story" forum, you'll get a more proper welcome. Has it helped your symptoms yet??

HeatherK - I have heard that Remicade COMBINED with Imuran (similar to 6mp) can cause a certain type of cancer that teenage boys were more prone to get. I would stay away from the combo of those for sure.
The way I look at is, I feel soooo healthy on Remicade right now, by the time it quits working, hopefully some other options will be available. I am hoping for a 7 year run like some others have had.
I tried Humira before the Remi, and it did work very well, but only for 4 1/2 months. Even if Remi fails him, Humira and Cimzia are still worth a shot. Good luck, and welcome to you too!
(Oh god - I said worth a "shot" didn't I. Not funny...)

 

[#2asap]

welcome kris13. I also had my 2nd infusion. 3rd will be November 5. This is good stuff. Good luck to you.

 

[Jennjenn]

I just got my most recent infusion last friday. My doctor decided to increase the dosage to 10mg/kg because I was still having a lot of difficulty. I still get nervous because even though it has been only 4 days, I feel pain still in my lower right abdomen. Within the last three years I have had 3 surgeries there, then an abscess followed a few weeks after the three surgeries. Last year I had a partial blockage same area. I was told that there is inflamation in that area and different areas of my intestines, but no current stricturing. With this treatment I am very pleased so far. 2 out of the 4 days were good when it comes to having to continually go to the bathroom. I still feel the pain, fatigue, aches, and dizzyness. I want to see how the next treatment goes in 7 weeks because I am hoping that things will start to get back on track for me and hopefully I can feel like I did 4 years ago.

 

[#2asap]

Jennjenn, this Remicade seems to the best treatment for the Remi club. I hope all goes well for you. This is a great place to come to for support and information. Good luck, #2

 

[farm]

YAY Jen! I hope Remicade works for you and this junk goes into remission for you from now on!

 

[Jennjenn]

I hope the increase in dosage works too! Thank you !! I am scared because I have tried so many things and 5mg/kg was not working to the extent it should have and things seem to be a little better so far ( even though only 5 days from last dosage) but today was a day from hell..couldnt leave the house.

 

[farm]

Give it a few to kick in. I've had 4 infusions and am still having a bit of a hard time. Better than before though.

 

[Jennjenn]

I keep saying "It could be better but thank god its not worse" !!! Oh and it has been worse in the past... I am being an optimist about this and going to give it a few more tries...I think I am going to stick with this dosage, just need to add possibly something else in to get to where I want to be. I will have to see the increase is just recent so I guess I do have to be patient!! I hope things get better for you Farm

 

[farm]

Thanks jenn I hope the same for you! And quick!

 

[CanadianBella]

I found out officially today that I have complete coverage and will have my first Remicade infusion on Tuesday. Im so excited and so nervous all at once! Do any of you offer any advice or anything as to your first infusion and what to expect?? How long did it take you to see a difference? ect!! Any information would be great!

 

[farm]

They always offer me Tylenol and Allegra before the infusion in case of minor headache and/or itching. I've never had either from the infusion, but do feel a bit tired after.
Good luck and keep us updated.

 

[Jennjenn]

They always give the prep 30 min before. A high dosage of benadryl through the IV and Tylenol. I usually lay down for the whole time wrapped up in the blankets and sleep because of the benadryl. The nurses let me wake up naturally and then I am ready to leave. It usually takes me a little longer because I sleep (about 5 1/2).... Hopefully this will be a good medication for you to help your symptoms!

 

[Skinny Dub]

CB thats good news! At my hospital ( where I get my treatment) in the ambulatory care center. I get a small room to my self in a big chair with a TV, there is WIFI so I bring the laptop, and I get to order food while I'm there as well. I think its about 3 hours from begging to end for me If I call ahead of time it will cut down the time a bit so the pharmacy can make it up before I get there.

As far as drugs first time they gave me benadryl, Tylenol the second and third time they just premed me with Tylenol, clariton. No side effects to speak for me seems to be working and hopefully continue to work after my surgery.

 

[CrohnsHobo]

I never take any pre-meds but they seem to help some people. For me it takes anywhere from three to five hours. It all depends on how busy the nurses are. Sometimes I sit there watching TV in my big recliner for an hour before they even get around to starting the IV.

I hope it goes smoothly for you and that it helps!

 

[imisspopcorn]

I never take any pre-meds but they seem to help some people. For me it takes anywhere from three to five hours. It all depends on how busy the nurses are. Sometimes I sit there watching TV in my big recliner for an hour before they even get around to starting the IV.

I hope it goes smoothly for you and that it helps!

I don't pre-medicate either...I was beginning to think I was the only one. Nice avatar Hobo..It's good to have a face to go with the posts.

 

[farm]

Nice to see your face Hobo! ^ my remicade twin!

 

[#2asap]

I get my 3rd tomorrow. It Changes my BM agenda. But its not as much of an emergency. To me it starts from the get go,but gets better with age. Everyone is different. Good luck. This is the good stuff. #2

 

[Creepy Lurker]

I never take any pre-meds but they seem to help some people. For me it takes anywhere from three to five hours. It all depends on how busy the nurses are. Sometimes I sit there watching TV in my big recliner for an hour before they even get around to starting the IV.

I hope it goes smoothly for you and that it helps!

There always seems to be an hour or so wait for me. To try to reduce waste, they don't actually have the dose made until I'm there and confirmed as showing no signs of infection. It takes a while for the hospital pharmacy to mix it up and send it across. There's usually 5-10 of us sitting around. no TV for us either.

 

[Jennjenn]

No TV :eek2: I am usually asleep but I dont know what my mother would do then!! That usually keeps her entertained! But they wait for me to get there also to get the meds from the pharmacy because my weight fluctuates and they mix it according to the current weight after my weigh in...

 

[CanadianBella]

I had my first infusion today and everything went great. It was done at a private clinic with big comfy leather recliners, tv and wireless!! I had to bring the meds myself so there was no wait from the pharmacy, they gave me this fancy little remicade cooler bag with ice packs you strategically place inside to keep the drug at the right temp. I had pre meds also, but that only took about 10 mins and was a shot of hydra-cortizone (sp?).

How many infusions has it taken you all to see results? The nurse said some patients can see results in 2 weeks. My GI said I could start weening off the Entocort as soon as i felt ready, but I dont want to rush it.

 

[My Butt Hurts]

How many infusions has it taken you all to see results? The nurse said some patients can see results in 2 weeks. My GI said I could start weening off the Entocort as soon as i felt ready, but I dont want to rush it.

YAY! Glad it went well for you, CB!
I wrote this on this thread back in January-
I have heard that the Remi works quickly for the RA patients, but usually kicks in at the 3rd or 4th infusion for Crohn's patients. I had my 3rd at the end of December, and I feel really really good. I haven't felt this good in quite a while. It just got a little better every day, and this week I was like "Wow! I feel GREAT!"

Though I have heard of some patients feeling different DURING their first infusion. I would stay on Entocort for a little while longer as long as it's not causing you any problems.

 

[Creepy Lurker]

Those having effects during the first infusion are probably just having a psychological response.

I had a major response a few days after the second infusion (just over two weeks after the first).

I haven't looked back since

 

[bmac1918]

I had my first Remicade infusion at a private clinic, current dosage 5 mg per kg. Nothing else prescribed from my GI doctor. I was at the clinic for about 4 hours, just watched tv, read a magazine, the nurse was very nice. So far I feel pretty good, no complications. I am excited to see how well this will work for me, I was diagnosed in 2002 and have been on many meds since, nothing really worked that great, but I managed.

 

[My Butt Hurts]

I didn't want to write a whole new thread for this, so I'll write it here since I'm in da club. I guess it's kind of a vent.

My GI office called yesterday and said "It's urgent that you call us back." So I called today and they said, "We need to know if you are transferring with your GI to his new practice, or staying with our practice." I said "Uummm... I guess I am going with his practice? What's going on? Why didn't he mail a letter?" He did. (suuure) When I got home from work today there was a message from the hospital, "We had to cancel your Remi appointment for Monday because we don't know who your doctor is, and we don't have authorization." WHAT?!?!??? I never switched docs, talk about last minute, biyotches!! Like no one has my work number either?
It's Friday PM, I can't do anything about it until Monday, I already have a sub lined up for Monday, I can't exactly call in NOT sick, can I??
Sooo.. hoopefully they will be able to authorize it Tuesday or Wednesday or even for the following Monday. I guess it's not really that big of a deal, but REALLY?!?!??? Sheesh...

 

[My Butt Hurts]

ARGH!!!
I called my doctor this morning, and explained who I was and what I needed them to do. After putting me on hold, the secretary said "The doctor wants to know if you've been on Remicade." Nice... he's the one who put me on it and I've been on it for a year. Really?? They don't realize that my appointment is today, and they messed up authorizing it??
She said that she would call me back. Meanwhile I am at work with a sub scheduled to come in, and I need to let the office know that I may or may not need the sub. I feel like I am gonna look stupid, or get charged for a sick day that I am not using or whatever. I decided to call the hospital and explain my situation. I asked "If you DO get the authorization this morning, can I still have my infusion?" They said NO! They didn't have room for me. How did they book an appointment between Friday afternoon and Monday morning?? And with the holiday, they can't get me in until the following Friday, December 4th. I just took the 7th to keep my schedule on Monday like it has been for the past year.
GRrrrrr - I hope my guts last the extra 2 weeks.
Thanks for the vent.

 

[katiesue1506]

That's ridiculous MBH... I'd be having a cow.

 

[#2asap]

Its always who you talk to. Ask them if they can squeeze you in. Also have them call if there are cancels. You need your infusion timely. Good luck MBH

 

[katiesue1506]

Tell them I'm on the rag and I'll ring their necks if my MBH doesn't get her Remi soon.

Bahaha... ok in truth I wanted to just fit the phrase "on the rag" in the forum somehow tonight.

 

[shazamataz]

LOL katiesue! Perhaps you could start an 'on the rag' thread?

 

[FEELING MUCH BETTER]

Okay, really frustrated with Remicade after being on it for two months. I'm going into my third treatment day after thanksgiving, and so far my Crohns is worse than when I first started, and much different. The BM urgencies are insane, one second I'm sitting at my desk and the next...BAM! And I have to find coverage for bathroom breaks which makes it horrible when they come right after another. Also, and I've never had this problem before, my BM are so friggin LOUD! And the stupid walls are so thin at work, I even heard people in the next room saying something when I was in there. Even if I turn the water on full blast, it doesn't help. Jeez, this sux!!!!

Thanks, just had to vent...

 

[Cat Nap]

I'm waiting for the government to approve paying for my remicade. After starting treatment has anyone found that they are able to eat foods that previously aggrevated their CD symptoms? I can't eat dairy with out feeling yucky and I am really really hoping that will go away with remicade.

 

[Mugs5]

Remicade questions

:bigsmurf: As a newbie to this site I've learned a bit about myself. I've been dealing with Crohn's for 30 years and just chaulked all that nasty stuff to "life". Many long stories later -flares, surgeries etc... I'm out of an 8 day stay in the hospital. My first Remicade treatment was in the hospital. I had my second treatment two weeks later. The next day i was like super woman, best I had felt in months. The second day I was so tired it felt like I was glued (literally) to the couch. Then the white nasty stuff... not really sores started but didn't last as long as it did during the first treatment. My third infusion has been scheduled for 4 weeks after my second infusion. My GI said that after the induction I will be on an 8 week schedule. I am also on imuran 100mg and pred. 20mg Ok, finally my question (s)... what is the normal time after infusion you notice CD symptoms coming back? I've been on the medicine for 36 days now. I cannot believe how much better I feel. The reason I ask is that I went from what I call "severe" diarhhea before the meds to going only every 3 days UGH!!! I am not sure if it's because of something I ate during Thanksgiving but the past 3 days I've been spending more time in the bathroom. When do most side effects begin after Remicade? How long does Remicade typically last before wearing off? What other meds do most people take while on Remicade?
Thank you for taking the time to read and hopefully responding. After all these years I am realizing (thanks to this site) that I am NOT the only one that knows the restroom location in every store.:bigsmurf:

 

[imisspopcorn]

I was suppose to get Remicade today...Looks like Farm and I won't be Remi-twins anymore...Something screwed up with insurance company because of the holiday so I have to wait a few days for the authorization. 'WHATEVER'!

 

[farm]

Oh, we'll always be Remi-Twins! I'll change my next one to match yours.
Mine went terrible today, first time ever. I think it's because my Crohns has been acting up and I've been sick the past week. I got nauseated during the infusion and am still sick.

 

[olumay]

First Appt on Friday December 4th

Hi i have my first Remi treatment on Friday, i am hopeful that it will all go very well. I am looking forward to the time off work though.

 

[Jennjenn]

I hope that it does work well for you Olumay

 

[Fog Ducker]

Wooo Hooo a club!

Ive been on Remicade for 2 years now, started with 5mg/kg every 8 weeks, was awesome for a while but I started to notice it would really fade out around week 5 so now Im at 10mg every 6weeks, That mixed with methatrexate seems to be working better. Lets just hope it keeps on like this.

I get my next infusion today. Love going there, the nurse is so nice and we sit in great big recliners and watch moves or have a nap.

 

[CrohnsHobo]

Wooo Hooo a club!

Ive been on Remicade for 2 years now, started with 5mg/kg every 8 weeks, was awesome for a while but I started to notice it would really fade out around week 5 so now Im at 10mg every 6weeks, That mixed with methatrexate seems to be working better. Lets just hope it keeps on like this.

I get my next infusion today. Love going there, the nurse is so nice and we sit in great big recliners and watch moves or have a nap.

Ahh another 10mg user. I get my 10mg every four weeks and I don't take anything else. Though it does not really help much at all anymore.

 

[Fog Ducker]

Every 4!! Wow!
Ur insurance company must hate you more than mine does me!!
Thats too bad its not working any more. How long have you been on it?

 

[Chuck2008]

Considering Remicade

Hi everyone,

I'm considering taking Remicade now, mostly because my doctor says I'm steroid dependent since I've been on it for a year (NOTE: I am a big fan of prednisone and would like to increase it again to treat my current flare but my doctor won't let me).

But I just can't get over the higher risk of cancer associated with the anti-TNF drugs, even though the risk is still small. Its like playing bingo in an auditorium with 1900 people, except if your numbers come up you get incurable lymphoma. I'd drive myself crazy worrying about it!

So I guess I'm hoping someone can put my mind at ease, it really looks like a good alternative to prednisone long term (except the cancer thing). How bad do your symptoms have to be to accept such a risk? Especially if prednisone is still working well for you?

Also, what are the differences in terms of effectiveness and risks between Remicade and Humira? Why do they recommend starting with Remicade when Humira should be better tolerated since it doesn't use mouse antigens?

Thanks!

 

[Jennjenn]

I have tried both Humira and Remicade. Humira was not for me so currently I am taking Remicade. I have had an increase in my dosage as of my last treatment to 10mg. I am due for another infusion in a couple weeks. My mother was concerned about the risks that are involved as she is with all of the medicines that I have taken. I think as a patient give me whats going to get me back to feeling the way I used to "good" with the lesser risk. My doctor described the risk as low, almost as much as the possibility of being in a plane crash. I feel that there is more long term difficulty involved with a higher risk factor for prednisone or any long term steroid usage.

 

[CrohnsHobo]

Every 4!! Wow!
Ur insurance company must hate you more than mine does me!!
Thats too bad its not working any more. How long have you been on it?

lol that is for sure. The hospital I get it at bills 26K every four weeks. Luckily I just pay out 2K at the beginning of the year and then I am covered 100% for the rest of the year.

I started off at 5 every 8 weeks, then 6 weeks. Then 10 every 6 and now 10 every 4. I have been on Remicade on that regular schedule for about three years.

I did a short cycle about 10-11 years ago when I was really steroid dependent and Remicade was just approved.

Think I am just building up a resistance to it now. Seems to help a bit for about two weeks and then back to where I was. No longer feel great right after like I used too.

 

[Peaches]

:bigsmurf: As a newbie to this site I've learned a bit about myself. I've been dealing with Crohn's for 30 years and just chaulked all that nasty stuff to "life". Many long stories later -flares, surgeries etc... I'm out of an 8 day stay in the hospital. My first Remicade treatment was in the hospital. I had my second treatment two weeks later. The next day i was like super woman, best I had felt in months. The second day I was so tired it felt like I was glued (literally) to the couch. Then the white nasty stuff... not really sores started but didn't last as long as it did during the first treatment. My third infusion has been scheduled for 4 weeks after my second infusion. My GI said that after the induction I will be on an 8 week schedule. I am also on imuran 100mg and pred. 20mg Ok, finally my question (s)... what is the normal time after infusion you notice CD symptoms coming back? I've been on the medicine for 36 days now. I cannot believe how much better I feel. The reason I ask is that I went from what I call "severe" diarhhea before the meds to going only every 3 days UGH!!! I am not sure if it's because of something I ate during Thanksgiving but the past 3 days I've been spending more time in the bathroom. When do most side effects begin after Remicade? How long does Remicade typically last before wearing off? What other meds do most people take while on Remicade?
Thank you for taking the time to read and hopefully responding. After all these years I am realizing (thanks to this site) that I am NOT the only one that knows the restroom location in every store.:bigsmurf:

Hi Mugs! You kinda got skipped over there buddy - let me see if I can help you. On the length question - that will probably vary from person to person - and can change over time. It used to last the entire 8 weeks for me (I've been on it for 5 years now), but at this point, I start feeling "Crohnsie" again at about week 6. And I have noticed that it seems to take a little longer to take effect as well. I used to feel better within a few days after - now it can take as long as 7-10 days. You are doing the math right - I have about 4-5 weeks to feel good out of every 8. Different people have different side effects or no side effects. I had no side effects except for extreme fatigue the day of the infusion for a long time. After 4 1/2 years or so I have started getting these skin issues - itchiness, sometimes hives and a rash on my chest, neck and back that is sort of like acne but far worse than I have ever had and different (hard to explain) and ITCHY. It's a real pain - starts about 10 days into my Remi cycle and I can't seem to get it all the way cleared up (using Clindamycin solution) before my next infusion - maybe about 80-90% clear. But - it comes right back in full force after the next infusion. Some people never get this - some people get joint pains - some people are just itchy - some people get nothing (like I did for over 4 years). It just depends. Sorry - I know these are not really answers right - but that is the deal with everything we all do here - everyone is different. It was the most surprising thing I think I learned after I started on here. As for additional meds while on it - you guessed it- everyone is different. They started me out with taking Methotrexate, but I just couldn't handle both, didn't feel good on the MTX, so I stopped it. Some take AZA, 6MP, some take nothing else (like me now). I hope that helps you - and NO - you are not the only one who scouts out the restrooms everywhere - we have many jokes on here about that!!

 

[s.a.m.]

Its been 7 months since I started, and its still working, yay. I am going again right before Christmas.

 

[Fog Ducker]

Wow peaches I hadnt heard of a side effect like that, I feel for you. But better than the alternative right!

Same thing to you Chuck, I look at it like this, Im improving my life right now for an increased risk of something later. I have always lived for the moment so I dont think about it. If Im one of the unlucky then I will have to deal with it then.

Mugs, Its funny, I know the fastest and most direct route to the bathroom in every store. Most times even think out my route before getting out of the car. lol!

 

[olumay]

Looking Forward to Friday

I hope that it does work well for you Olumay

Thanks a lot, i know everything will work out by God's grace.

 

[Peaches]

Wow peaches I hadnt heard of a side effect like that, I feel for you. But better than the alternative right!

Well, I had a post on here explaining how all that mess started but it is gone now. My dermatologist showed me all those symptoms (the hives and skin stuff) in her big derm book under skin reactions to Remicade. And while I don't like it - I can only look back on the four pretty darn good side effect free years I had with it - and just keep hoping this is only as bad as it is going to get because it still keeps my disease pretty quiet, so worth the pain in the butt part so far

 

[imisspopcorn]

Hi everyone,

I'm considering taking Remicade now, mostly because my doctor says I'm steroid dependent since I've been on it for a year (NOTE: I am a big fan of prednisone and would like to increase it again to treat my current flare but my doctor won't let me).

But I just can't get over the higher risk of cancer associated with the anti-TNF drugs, even though the risk is still small. Its like playing bingo in an auditorium with 1900 people, except if your numbers come up you get incurable lymphoma. I'd drive myself crazy worrying about it!

So I guess I'm hoping someone can put my mind at ease, it really looks like a good alternative to prednisone long term (except the cancer thing). How bad do your symptoms have to be to accept such a risk? Especially if prednisone is still working well for you?

Also, what are the differences in terms of effectiveness and risks between Remicade and Humira? Why do they recommend starting with Remicade when Humira should be better tolerated since it doesn't use mouse antigens?

Thanks!

Hi Chuck, I have been on most of the older treatments. I tried Humira briefly without any success. (It was more so because my bowel was too far gone). The physical risks associate with long term Prednisone are more likely to occur with EVERYONE. Rarely are there never any physical manifestations from this med. It works great at reducing inflammation...but, you can end up with hyperglycemia(diabetes), mania, osteoporosis, acne, fat accumulation in strange places(ie..buffalo hump) ulcers, adrenal insufficiency, fungal infections....Although these aren't lethal, they are problematic. With the meds like Remicade, there are the normal side effects that happen with every med...The worst of course being malignancy. But it seems to be a minute risk. I think you need to look at what would work best for your lifestyle. It may be Humira that is best for you. I tried the Humira first.I don't think there is an exact protocol between which med they give first. Remicade has been used longer than Humira....I hate taking Prednisone...It makes me nuttier than normal, but I will take it if I have to. Good luck with your decision.

 

[bmac1918]

I just got my second Remicade infusion on Dec 3, the next one in 4 weeks. I had no negative side effects from the first infusion. I must say that the last couple of weeks have been pretty good, the best since as long as I had this disease, the Remicade is working very well for me. It seemed that from the moment I left the clinic on Nov 17, that my Crohns symptoms were greatly reduced. I can only hope that the next 4 weeks were as good as the last couple of weeks. Happy with Remicade.

 

[Jennjenn]

I just got my second Remicade infusion on Dec 3, the next one in 4 weeks. I had no negative side effects from the first infusion. I must say that the last couple of weeks have been pretty good, the best since as long as I had this disease, the Remicade is working very well for me. It seemed that from the moment I left the clinic on Nov 17, that my Crohns symptoms were greatly reduced. I can only hope that the next 4 weeks were as good as the last couple of weeks. Happy with Remicade.

I am happy that the Remicade is helping you feel well!

 

[Mugs5]

Thank you Peaches for your response. Your information was helpful. It gave me something to start with. I am super curious to see if I have pain or sickness tomorrow through my next treatment. Thank you for all your help.

 

[Mugs5]

Update: Yes, I have had increasing pain and nauseousness since Thursday. I was hoping it was a one day thing and I'd go back to feeling well again, I was wrong. I still have high hopes for tomorrow
I have been trying to put some pieces of my Crohn's puzzle together. I have never had Crohn's related joint pain. I don't know if this is Crohn's related or not but my joints have been popping all the time for 10 full months. I've had two Remicade treatments and it has been 3 weeks since my last one. It was about 5 days ago and I realized my joints haven't been popping lately. Then about 3 days ago when my pain started back up again (out of no where), the popping started too. I am wondering if this is coincidence or if one has something to do with the other.

 

[Fog Ducker]

I had extreem pain in my knees and ankles when my crohns was REAL bad, my GI said it was because CD is an inflimation disease and can affect other areas of the body.
Mine was so bad that I could hardley walk, and stairs were defintly a 10 minute affair.

All got better when the Remicade worked and the CD settled down.

 

[#2asap]

mugs, Ive had 3 infusions now and ache all over. I got osteonecrosis from prednisone back in 97. Had my hips done. I was a stonemason.Now I do window covering installations part time and it hurts like hell. I dont know if its the remicade, crohns, or what the hell. I try to find time to work out so that I can cowboy up when necessary. Maybe this how it is for some? I Hope no one else gets Osteonecrosis.

 

[Mugs5]

I am sorry but what is osteonecrosis? what made the dr. change to Remicade? Are you in more pain today since starting Remicade than you were before your first infusion? Have you had any success (even a small amount) with anything since being diagnosed in '96? It sounds like you've not been in remission since being diagnosed. If that is the case that would give you true cowboy rights in my mind. That is a long time with no relief!!! :awe:

 

[Chuck2008]

Hi Jennjenn,

Sorry I didn't notice your reply earlier. Yes I guess you're right, just being on prednisone has risks and letting my condition get worse and lead to surgery is probably the biggest risk of all.

Funny you mention plane crashes, I avoid taking planes too. So you see I'm just an all around worrier and hypochondriac..

I think the problem is that I'm reading these labels too closely now. I've taken medications before and never paid attention to the long list of potential side effects. The internet is not a good thing for people like me!

 

[My Butt Hurts]

YAY YAY YAYAYAYYYYY!!!
I am home from my Remi infusion. It's my one year Remi anniversary.

Dear Remicade,
We have been together one year. You have treated me very well, and I hope that you continue to do so. I can't begin to tell me what you have meant for me and my family this past year. It's time for me to say it... I.. I.. I love you.
Love,
MBH

 

[olumay]

Hi everyone, had my first Remi over the weekend and i must say that i feel great. i have my next one in 2 weeks. I want to say a big thank you to all the scientists who worked on Remi, it is definately a life saver.

 

[imisspopcorn]

Yeah olumay!!! I'm glad it went well for you.

 

[Jennjenn]

I am also glad that it went well for you

 

[Peaches]

I'm so glad it seems to be working for you Olumay - that is wonderful!! It has given me about 4 1/2 years of goodness - hopefully you'll have the same luck!

OK - so I am having to move my Remi appt up by about 10 days because - well - it ain't working great :O) The nurse also informed me through email that in looking at my chart, the last time they ran the antibody test - which came back negative - that it also showed I had low amounts of Remi circulating. Well - they told me the first part -but not the second part and this was over 6 months ago! So now I think I'm understanding WHY I've been so symptomatic. Anyway - I have finally agreed for them to increase my dose from 5 to 7.5mg/kg on Thursday of this week and I'll just have to keep my fingers crossed that it doesn't completely backfire on me and make my rash get out of control again right before I'm going to NYC for 5 days!

 

[imisspopcorn]

Good luck Shantel.....I'm still waiting for authorization.....My sweet desposition is beginning to wain!!!!(J/K) I'm trying not to get upset.

 

[Peaches]

What the heck - you STILL haven't gotten an auth? How overdue are you? I always throw phrases around like "Remi will be cheaper than a long hospital stay with surgery to boot" to get them to kick it up a notch!

I think I have had nightmares about not getting my Remi auth in time (we've switched insurance carriers probably 6 times or more since I started it) - and I just get sicker and sicker. Hope you can get it soon (we are talking like drug addicts - right )

 

[Mugs5]

Peaches, what is an antibody test? I have two more days until my 3rd Remicade treatment. I feel like a kid counting down to Christmas morning. Sypmtoms have gotten worse each day since last week. Is it common to have symptoms this powerful a week prior to your next treatment? Or is it possible it's because I've only gotten 2 doses in my system? Really hoping that when I get this 3rd treatment the Remicade will last longer. Anxiety has already started with me thinking that if after this treatment I only get the treatments every 8 weeks but it wears off at week 3... that leaves 5 weeks of misery.:ybatty:

 

[Peaches]

You can build up antibodies to the Remicade which will make it not as effective, or worse - where you can't take it anymore (causing joint pains and reactions). I have been on it for 5 years and have been lucky not to have created antibodies to it at this point.

You are still on your loading doses - so let's hope that your body is just doing an adjustment and that it will last you the entire time. You should keep a log of your symptoms though so it will be clear if there is a pattern with your symptoms (like that they usually return by the 6th or 7th week) and if so - it is easier for your doc to either tweak your dose higher (like they are doing with me) or make your interval shorter so that you get it every 6 weeks instead of every 8 etc. Just be aware that with increased dose or intervals you are *slightly* increasing your exposure as well - just something (not) to think about (too hard) :O)

 

[Mugs5]

Thank you Peaches! Hopefully your change will be all positive.

 

[imisspopcorn]

Finally got authorization...Scheduled for Remi on Monday. Yipee!

 

[Peaches]

Yay Carrie - Woot Woot!!

 

[Fog Ducker]

Woo Hoo, IMP!!

 

[farm]

Finally got authorization...Scheduled for Remi on Monday. Yipee!

YES!

 

[My Butt Hurts]

Finally got authorization...Scheduled for Remi on Monday. Yipee!

Awesome!! I hope it works for you as well as it has been working for me!
Do you know if you are taking premeds?

 

[Peaches]

OK - Remicade for me today. I am hoping for no pukers feeling like last time - especially with them increasing my dose......fingers crossed!

 

[Mugs5]

just got call from Infusion center. GRRRR!! Infusion center called me to say my Dr. won't authorize mixing instructions because he needs to see me before my 3rd treatment. My dr appt is scheduled already for tomorrow and I can't get in sooner. That means the earliest I get the Remicade is on Monday. I am so angry. Sad. Literally, my stomach didn't even wait until I hung up with the infusion center to start hurting. To make it worse, we are having windows installed today and it is below zero with wind chill. It's going to be freezing in my house!!

 

[imisspopcorn]

Awesome!! I hope it works for you as well as it has been working for me!
Do you know if you are taking premeds?

I am not taking pre-meds....I know I am weird. I really want to know if I have a reaction to the med. I don't want to mask it.( I am not wanting a reaction by any means, but I would like to know if I do have a problem with a certain drug) Plus, I drink Benadryl pretty much every night lately to sleep. There is probably enough circulating in my system to knock out a 200lb man....I know my thinking is probably backwards....This will be my 5th dose. I also had two doses back in 7/2008 before I had surgery. Knock on wood, no problems yet. The Crohn's gods are going to read this and sock it to me, watch....


Mugs5....Sorry you are having to wait. Keep warm.
Peaches...I got my fingers crossed for you.

 

[farm]

YAY for peaches. Fingers crosses.
IMP you will be fine as the Crohn's gods will smile upon you!

 

[Peaches]

I did fine - kept myself busy making something very pretty - will post a pic later. Hopefully this increased dose will get me quieter than I have been.

 

[imisspopcorn]

I made it through another dose...No pre-meds. I checked to see how long my authorization is this time. It ends 3/30/2010...That is only 4 months. How long does everyone else have for their authorization??? I will get my next dose in February and then need another authorization!

 

[farm]

My is good until June 2010. I'm glad you finally got your Remi!!!!

 

[Peaches]

In the past, mine have always been for a 12 month period. But with this new CRAPPY insurance - God only knows. I'm really hoping they are just posturing and that the contract will come through in the end and I can stay with my doc. That is the new rumor - I'm hoping it becomes reality.

Glad you got your Remi Carrie!!!

 

[Mugs5]

who do you check with regarding the authorization? A big question for anyone who has a port for Remicade. I believe doc is putting me on 8 week treatment cycle but according to nurse my port has to be flushed every 4 weeks. How do you handle this?

 

[Peaches]

Hmm Megan - I do not have a port - maybe Carrie can jump in with info on this one? Will they let you flush it yourself? Maybe with saline - probably pretty routine. How long have you had it?

As far as authorizations go - it is *super* important for you to follow up with your insurance company and verify (like get the actual authorization number and length of the authorization from them) that they have given the authorization. Otherwise you could find yourself with a 5 plus thousand dollar medical bill that you didn't expect! I have had this happen to me TWICE, and one of those times the hospital TOLD me that they had received the pre auth. Luckily they were able to get it to go retroactive both times, but talk about STRESS. So - call your insurance as soon as you think the doc has been given the auth, that way if it isn't actually there, you will have time to get it completed before your next Remi. And, I'm speaking to people in the US.....

 

[farm]

My nurse is pretty on top of it. She'll re-verify 5-6 days before my infusion for me. I usually call also just to make sure.

 

[imisspopcorn]

Hey Megan....Do you have a home health nurse that comes to see you? Sorry, but I'm drawing a blank about your background story. Is your port only for Remicade?

As far as authorization goes, you can check with your insurance company or the facility where you will have treatment done should be able to tell you. My insurance is a network of providers and facilities...it is sort of one and the same.

BTW, I'm Carrie

 

[krahsdnal]

I have been on remicade for about the last 4 years and it has been a reallie changer for me, no pain, no flair ups, nothing! Could eat what I wanted (which is good cuz I could eat wings and pizza every day). I didnt have to premedicate or post medicate. The process took 2-3 hours. Orginally in VA i had to go to the hospital for the infusion, since moving to KS i go to the dr/s office - which is an office visit so I just pay the co-pay.

I would bring my ipod and sleep, or bring my laptop and work to pass the time.

 

[My Butt Hurts]

Hi krahsdnal. Welcome to the forum.
Did the Remi quit working for you? I notice that your sig says you are due to have a resection soon.
Glad you're here to share with us.
MBH

 

[krahsdnal]

I think for all intents and purposes you could say that the remicade stopped working. Interestingly the doc wants me to stay on it. I am pretty sure that I will stay on it after the surgery to try to help prevent the disease from recurring.

 

[CrohnsHobo]

I am asking my Dr. to stop my Remicade today. Don't really see the point anymore. Get the 10 every 4 weeks and I am good for about a week and then back to feeling awful.

Need something that is gonna sustain me for a full month or I am going to have to pop percocets more than I already am.

 

[Slandur]

yum yum! Oh my, Remicade... best drug ever! this and nutrition put me in remission!

I had about 10 infusions, was off everything for 2 solid years, recently went back to it, had about 5-6 more infusions. It is def my cureall, but doesn't last over 2 months.

 

[Jennjenn]

I just had my Remicade today and this was the first time that I actually didnt fall asleep during it. I was amazed. When I went home I went to go lay down for a min and that was at 3pm....it is now 10:40 and I just woke up about a 1/2 hour ago. That was the longest min of laying down. I am just hoping that these next 2 months at the 10mg (2cnd time at 10) are better than the last 2 months. I need to find a better combination of meds to let me have a normal functioning life again. This is just too frustrating.

 

[shazamataz]

((((HUGS))))) jen, at least you got some sleep!

 

[Jennjenn]

Lol yes I did! I slept again for another hour after I posted that. I think I am ready to go back to sleep again. I hope your doing well Shaz