Remicade Club Support Group

Crohn's Disease Forum

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I guess I get to join the party as well. I go for my first infusion at noon today. Even though I am a pharmacist and have done A LOT of research, I am still quite nervous. Do you always have to have someone to take you and pick you up? Currently taking: Pentasa 3000mg, Prilosec, Colestid (bile salt diarrhea). Stopping Flagyl today!!!!!!!!!!!!!!!!!!!!!
 
I always go by myself, no need to have someone drive you or pick you up that I know of.
Good luck with the infusion :)
 
umpharmd said:
I guess I get to join the party as well. I go for my first infusion at noon today. Even though I am a pharmacist and have done A LOT of research, I am still quite nervous. Do you always have to have someone to take you and pick you up? Currently taking: Pentasa 3000mg, Prilosec, Colestid (bile salt diarrhea). Stopping Flagyl today!!!!!!!!!!!!!!!!!!!!!
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Hey ump....I guess you are there as I type this. Good Luck!

My wife took me and picked me up for my first infusion two weeks ago, just in case I had a bad reaction. Some people claim to get pretty groggy and shouldn't drive. Turns out it wasn't necessary - all went well. My next infusion is tomorow at noon - I plan to take myself.
 
I drive myself...I don't premedicate. If you get benadryl you can get a DUI if you are pulled over...LOL!
 
Thanks everyone, I had no problem with the infusion! I did have my husband take me, just in case. I would definetly get a DUI if I was given Benadryl!!!!!!
 
umpharmd said:
I guess I get to join the party as well. I go for my first infusion at noon today. Even though I am a pharmacist and have done A LOT of research, I am still quite nervous. Do you always have to have someone to take you and pick you up? Currently taking: Pentasa 3000mg, Prilosec, Colestid (bile salt diarrhea). Stopping Flagyl today!!!!!!!!!!!!!!!!!!!!!
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I go by myself ... just me, my laptop and Netflix
 
I can go by myself, but Janis went with me the first time and is going with me tomorrow. I just like her company and than we will go do something afterwards. No cheese burgers this time. Maybe Bob Evans.
 
Has anyone ever had a real sense of being irritable. I had my 2nd infusion this morning and for some reason I have been feeling really irritable. Not normally like me to be that way towards Janis. She seems to take it in stride by saying "that's okay you can take it out on me I got strong shoulders." I don't like getting snappy with her after everything she does for me.
 
My Remicade was today (2.5 hours including starting the IV and mixing the med)....I don't know why it takes you all so long??? I must smell really bad and they want to hurry me out.:(...Oh well, I'll be back!
 
Pirate said:
Has anyone ever had a real sense of being irritable. I had my 2nd infusion this morning and for some reason I have been feeling really irritable. Not normally like me to be that way towards Janis. She seems to take it in stride by saying "that's okay you can take it out on me I got strong shoulders." I don't like getting snappy with her after everything she does for me.
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I have never had that Greg. Do they premedicate you with anything? Maybe you are having a reaction to that?
 
Going to be starting Remicade this Friday and was wondering if there are any must do things to make the infusion go as smooth as possible, besides pray that the billing and insurance don't get screwed up.
 
Good luck....Drink plenty of fluids so your veins stand up and say hi!....(So you are well hydrated)....Bring something to read or do....It will be fine. Good luck and let us know how it goes.
 
So I see you made up your mind about the Remi BB. Good luck! I'm getting my Remi right now and surfing on my Droid phone. Definitely bring something to do. Maybe they will let you dissect a cadaver to pass the time ;) Let us know how you do!
 
borborygmi said:
Going to be starting Remicade this Friday and was wondering if there are any must do things to make the infusion go as smooth as possible, besides pray that the billing and insurance don't get screwed up.
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Good Luck! Bring something to do ... I bring my laptop and watch a movie, it's very helpful. I also have a TV in my room but rather watch my own stuff. Also the Benadryl makes you really drowsy so wear comfy clothes just in case you nap.
 
I keep forgetting to add this one. I don't know if anyone else has this problem, but my fingers seem to swell after Remicade - just for a day or two. And I always forget and wear my rings - then I can't get my wedding ring off (I don't like sleeping in jewelry).

Also, I was talking with my infusion nurse about my dermatologist wanting me to quit the Remi to see if my rash goes away and I said I didn't want to come off of it because then I would be afraid to go back. She looked right at me and said *all* of the infusion reactions she has ever had in that room have been from people who have gone off Remi and then been put back on it. That made my mind up right there.....this rash is going to have to be much worse for me to quit!!

I also called Centecor last week about the Remistart program (if you guys aren't on it - GET ON IT - it rocks!!) - and I mentioned the rash. They immediately xferred me over to a nurse who is required to log it. She of course couldn't give me any help though - just directed me to the location in the Remi info packet that states rashes are the most common side effect. Gee....thanks!
 
Hey everybody. I have my first infusion in about 3 hours. Im pretty excited about it - hopefully ill be able to go off this clear liquid diet pretty soon lol. Well, wish me luck, and Ill let you know how everything goes!
 
Peaches said:
I keep forgetting to add this one. I don't know if anyone else has this problem, but my fingers seem to swell after Remicade - just for a day or two. And I always forget and wear my rings - then I can't get my wedding ring off (I don't like sleeping in jewelry).

Also, I was talking with my infusion nurse about my dermatologist wanting me to quit the Remi to see if my rash goes away and I said I didn't want to come off of it because then I would be afraid to go back. She looked right at me and said *all* of the infusion reactions she has ever had in that room have been from people who have gone off Remi and then been put back on it. That made my mind up right there.....this rash is going to have to be much worse for me to quit!!

I also called Centecor last week about the Remistart program (if you guys aren't on it - GET ON IT - it rocks!!) - and I mentioned the rash. They immediately xferred me over to a nurse who is required to log it. She of course couldn't give me any help though - just directed me to the location in the Remi info packet that states rashes are the most common side effect. Gee....thanks!
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Well I've had 2 infusions and no rash sooo farr thank goodness... I must say I seem to get more pimples then I used to though ... O well maybe I'll try proactiv lol or live with it.
 
Darkeffx said:
Hey everybody. I have my first infusion in about 3 hours. Im pretty excited about it - hopefully ill be able to go off this clear liquid diet pretty soon lol. Well, wish me luck, and Ill let you know how everything goes!
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Good Luck!!
 
I've got my first infusion tomorrow. A bit nervous, but excited too. I've been waiting for it for what seems like months.
 
Peaches, I don't get pre-med. I don't think the irritable feeling has to do with the Remi. I think it was more stress of other things going on. The only time I've snapped since than is at a co-worker that was being a jerk.
I took Janis out to dinner as a way to apoligize to her for snapping at her that day. And yes I did apoligize. Thank goodness she understands what this disease can do to us.

AM, I was nervous to but it was a breeze. Now all I worry about is dosing off and snoring. They might not let me come back if I do. lol
 
Haha! I don't think I'll doze off this time. I'll be too paranoid about watching for side effects. I've been told by my IBD nurse that I'm fine to drive after too, and that they never pre-medicate. Might be an NHS thing? They said I'd be in for 3 hours, so not too bad. Am missing a university trip for it, which is a pain, but this is definately more important!!
 
I've only just finished the infusion! Still have to sit here for another hour. The drip was going really slowly. I don't feel particularly sleepy, I think everything has gone fine. Fingers crossed it does the trick! I've got my next infusion in two weeks.
 
I've only just got home. It was a really long infusion, I was there for about 4 1/2 hours! Hopefully next time it won't be so bad. Still, it wasn't an unpleasant experience, so no nerves anymore!
 
Glad to hear everything went well for you!!! I have my 3rd infusion next Tuesday! I hope that one goes as well as the other two I've had.
 
The pharm is mixing it now ... the pre med is hung and dripping in as I type this lol... and I'm getting sleepier by the minute ... stupid benadryl sleepiness
 
Gettin another tonite!!!
Wooo Hooo!!!
Its funny that I look forward to Remicade day like its Christmas, I count down the days, and get all giddy and excited. I can even feel my mood increase as the days draw near. Its great, Christmas comes every 6 weeks in my world!! lol!
 
I just had my latest infusion last week. Don't feel much different, really. It seems to be having less effect on me than it used to. Been on Remi since last summer, and was on it once before about 3 years ago. It worked much better before.

They don't give me Benadryl with my Remi, so I always drive myself. Never had any problems in that regard, nor any reactions to the Remi. Though at the Kaiser hospital where I get my infusions, they put us in these big recliner chairs, kinda like La-Z-Boys, so it's sometimes hard not to fall asleep!

Going in for a colonoscopy on Friday. Can you say 6 hours on the toilet Thursday night?? That has got to be about my LEAST favorite thing to do. There must be an easier way... Wish me luck! And hope the anesthesia dose is high enough -- you ever wake up in the middle of a colonoscopy? NOT fun!!
 
Dave07 said:
I just had my latest infusion last week. Don't feel much different, really. It seems to be having less effect on me than it used to. Been on Remi since last summer, and was on it once before about 3 years ago. It worked much better before.

They don't give me Benadryl with my Remi, so I always drive myself. Never had any problems in that regard, nor any reactions to the Remi. Though at the Kaiser hospital where I get my infusions, they put us in these big recliner chairs, kinda like La-Z-Boys, so it's sometimes hard not to fall asleep!

Going in for a colonoscopy on Friday. Can you say 6 hours on the toilet Thursday night?? That has got to be about my LEAST favorite thing to do. There must be an easier way... Wish me luck! And hope the anesthesia dose is high enough -- you ever wake up in the middle of a colonoscopy? NOT fun!!
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Yes I have done that and NOT fun for me-wishing you as easy a prep as can be hoped for and that you have peace of mind and a painless procedure. My thoughts will be with you!
 
imisspopcorn said:
My Remicade was today (2.5 hours including starting the IV and mixing the med)....I don't know why it takes you all so long??? I must smell really bad and they want to hurry me out.:(...Oh well, I'll be back!
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The nurse told me they'll give it really slow just in case there is an allergic reaction, once they know you'll be O.K. they let the I.V. run faster.
 
jpetrone said:
and I'm getting sleepier by the minute ... stupid benadryl sleepiness
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I got permission from my GI to take non-drowsy Claritin before my infusion, and I am not so sleepy. The nurse said that they still givve Benadryl only because that's what they first started out with. Claritin wasn't around then.

Dave07 said:
I just had my latest infusion last week. Don't feel much different, really. It seems to be having less effect on me than it used to.
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Awww, sorry it's not working so well for you. Do you know if you can have your dosage increased?


Congrats everyone else who just got their infusions!
 
1st remi today

I just finished my very first treatment this morning. It took a total of about 2.5 hours from beginning of infusion to the end. It was nice, relaxing, and comfortable. I was wondering, how long before I feel the benefits of it?? for example, my major issue is the severe abdominal pain. I was in my usual pain and discomfort basically all afternoon. I thought that you feel better right away? I must be way off! I also had a major headache after. But that was it. I wasn't given benedryl or cortisone. I am anxious for my second treatment in 2 weeks! :smile:
 
I think, Kacy, that it will take a few infusions before you slowly notice anything. At least it seems to be working that way for me. I had a awful headache after my 2nd treatment.

Good luck and hope it does wonders for you.
 
Colon Blow...

Mountaingem said:
Yes I have done that and NOT fun for me-wishing you as easy a prep as can be hoped for and that you have peace of mind and a painless procedure. My thoughts will be with you!
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Enduring it as I type this, and it's not pleasant. Last time I bought 3 bottles of the over-the-counter Phospho-Soda. Small quantity, not bad to drink, acted fast, got it over with.

This time, Dr told me to pick up Colyte from the pharmacy. It's a big plastic jug that's basically filled with salt, and I have to mix it with 4 liters of water! 4 LITERS!!! You ever try to drink 4 liters of ANYTHING in a short period of time?? Let alone 4 liters of salt water! It's horrible. I'll take the 3 bottles of phospho-soda any day over this. This takes forever to kick in, which means I'm sitting around for 90 minutes with an achy stomach full of salt water.

My Butt Hurts said:
Awww, sorry it's not working so well for you. Do you know if you can have your dosage increased?
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That's part of the reason for the colonoscopy tomorrow - Dr wants to see if it's general inflammation, which could be helped by a higher dosage of Remi, or if it's stricture, which won't be helped by more Remi... we shall see. Literally!

Kacey said:
I was in my usual pain and discomfort basically all afternoon. I thought that you feel better right away?
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Pirate is right. For me it took effect gradually over a few weeks. That's probably why they give us "loading doses" close together initially, then gradually space it out to 6 or 8 weeks. Congrats on getting started! Hope you feel better soon!

BTW, if you all haven't heard of the "Remistart" rebate program through Centocor, you've got to check it out. Free money to help pay for Remicade!

katiesue1506 said:
Hey guys... I wanted to make you aware of a resource... my doctor enrolled me in this rebate program by Centacor and here's the website for it http://www.centocoraccessone.com/

If you qualify for the program they will provide up to $400 dollars in a rebate for the out of pocket costs you pay for Remicade.
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Does anyone here use the Remistart program? How does it work? If you're approved they give you a prepaid MasterCard and put money on it for you and you use that to pay towards the out of pocket expenses?

I just got the insurance paperwork for 1/12-1/31- Ins was billed $29,677.07 they paid $20,457.81 and supposedly I'm responsible for $1,800.00 ... thank goodness with my Ins Co my max out of pocket expense is $1,800.00 or my responsibility would be $9,219.26!!! That would surely result in me saying remi your services are no longer needed!

I would imagine everyone here has some kind of out of pocket expense?

Is mine high compared to other peoples? ... We may have to cross out the Remicade in "Remicade Club" and make it the "Poor House Club".

This stuff is made from mice right? Maybe if I provide my own mice I'll get a discount? sheesh

I attached a PDF of the breakdown ... should medicine and medical care really cost soo much?
 

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jpetrone said:
I would imagine everyone here has some kind of out of pocket expense?

Is mine high compared to other peoples?
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Mine is always $4,867.38 of which my insurance covers all but $40.
 
I have a $25 co-pay.....I only see the breakdown for the IV tubing, Jelco, and pump rental which totals about $500....I have never seen what the actual cost of the Remicade is.....
 
Mine is done adjacent to an Urgent Care...The Urgent care and nurses are all part of my insurance company.....It is this huge HMO....The costs are low but you don't have much choice in picking providers or specialists.

Another bad thing is 3 of the best hospitals in town aren't contracted to accept the insurance....Not much choice, but fairly reasonable rates??? I guess it is a trade off.
 
Jordan, that does seem high. My Dr. told me once that Remicade costs about $30k a year, but not $30k per infusion! I think my Remicade is about $830 per infusion (about $600 for the drug, and about $130 for the nurses' time and medical supplies in the infusion center).

How much you pay though depends entirely on your plan. For me, I pay the first $1,500 of my medical expenses, and then the plan pays 100% after that. So after the first couple of infusions, my out of pocket max will be met and I won't have any more bills for my Remi.

I just enrolled for the Remistart program, so ask me again in a few weeks for more details!
 
Mine used to total 10,000 when I was on double shots. It was 5000ish on the normal dosing.

I know my insurance refused to pay the 10,000, saying it wasn't medically necessary, so they re-negotiated with the hospital and the hospital changed the price to 7,000. Then itwas all of a sudden medically necessary again. :)
 
I paid similiar to Dave. Met my out of pocket max of 2,000 and then 100% covered. I know for my last years infusions I had them done at the local hospital and they billed $26,000 for each infusion and insurance ended up paying out about $10,000 each time.
 
Mine is always pretty low but I think it does get a bit lower durring my infusion only because Im so relaxed.
 
Hiya everyone!
well flamin Nora! it's took me over an hour to read 658 posts! But i'm glad I have, very informative, and I've made lots of notes, thank you all!

My gastro has mentioned Infliximab shots to me when I come off the Preds in April, it sounds like 'the business' and you all seem to be doing great on it!
my only reservation is the imuran/aza, I had an allergic reaction to that stuff years ago, and I don't want to stay on Pred, so lots of questions to ask him in April.
So I might be joining the club! we'll see
Joan
xx
 
WooHoo Medical Costs!!

Wow folks, check us out. With all this Remicade I bet we're easily racking up a couple hundred thousand dollars in medical bills between just the few of us here! It's no wonder the price of health care is going up. Just look at what we're charging our insurance companies.

I have no complaints though. I'm happy to pay my $1,500 out of pocket and know all my medical expenses are covered for the rest of the year. No health insurance reform needed here, thank you very much!
 
Just had my first remi infusion yesterday afternoon after waiting for ELEVEN weeks in severe flare mode. But it all went really well, and with no side effects. So now I am playing the waiting game, hoping it works.

As far as my cost for remi...I know it's around $4000 every time, but with my health insurance through work, my husbands health insurance through work, and our government pharmacare program, I pay...ZERO dollars. That's right folks, I pay absolutely nothing. YAY! That was the silver lining on this dark cloud.
 
I did suffer from blood pressure drops... pretty severe ones (50/80)

Then I started having reactions to the Remicade and my blood pressure would skyrocket. They were sorta like panic attacks. Face got red, heart raced, couldn't breathe well, felt really anxious.
 
I received my first bill from the infusion center. Total was just under 10 grand and my part is $955.65. You can bet I called up and got on the Remistart program. I figured it out that between my meds and my infusions, I will average a cost of $557 out of pocket per month. That's more than my truck payment.
So guess I get to go in and rack up another 10 grand tomorrow morning.
 
I have my Remicade on friday. I actually got dropped from my Aetna on the 1st and now am left with just Medicare. They only cover 80%. I am afraid of whats going to happen :( I know I cannot afford every appointment and treatment even if its only 20% of the bill. My doctor said that he would work with me sice I have the Medicare. I also have more appointments this week with doctors. Specialist tomorrow who is doing a double ballon enteroscopy the following week, Rheumi on thurs, and the remi on fri. Had dentist today as well. These bills that are going to come through the mail are going to be scary :(
I will be calling the Remistart to try to help the extra costs of the Remicade.
 
That stinks Jenn! I think the Remistart will help defray some of your costs.....Your doctor sounds great!
 
Good luck Jennjenn! Medical bills can be scary.

So I had my follow up visit with the gastro doc today after my colonoscopy last week (or whenever it was). Colon is fine, but the terminal ileum is strictured (narrowed) and ulcerated, and she suspects it's heavily scarred. Said she couldn't get the scope into the small bowel at all. The report on this colonoscopy is about the same as the previous two, which makes me think there hasn't been much change over the past 3 years since I was diagnosed.

She is increasing my dosage of Remicade from 5 mg/kg up to 7.5 mg/kg, and she's also shortening the intervals from 8 weeks to every 6 weeks to see if I feel any better.

She seems pretty set on the idea that I'm going to need surgery, and probably sooner than later. I'm feeling a bit of denial and hoping there's another alternative. I can't remember where I heard it, but I remember hearing that surgery patients can have a high recurrence rate, and commonly at the site of the surgery.

Have any of you had surgery? Multiple surgeries? What are your thoughts or advice?

Feeling a little disappointed...
Dave
 
Hey Dave...My disease is where your's is...I had a resection in 2008. The disease came back back within 6 months post-op....I was very ill from the narrowing and having so much pain. I know I waited to the very last minute to have surgery. I think it has improved my quality of life tremendously....I am hoping to get 10 more years before I need any more surgery....You are lucky in that you are on stronger meds than I was on. Hold off on the surgery for as long as you can, but don't be frightened of it. It really was a godsend!
 
Hi Dave.....I have had a resection before it was in 2007. Even though I am still having difficulty and had a complications with my surgeries it has helped a lot. I might have some more narrowing at this time, I will find out tues when I go for my Double Balloon Scope. The doctor said yesterday that if there is a small amount of narrowing that he will be able to open it up and try to relieve some of the pain I am having. Before the sugeries my ileum was so narrow that there was no other choice but to have the resection. Yes try to hold off if you can on the surgery but if it is to the point where there is no other choice and you have the surgery, you will be able to feel better afterwards hopefully.
 
I just got the call from my insurance that I was approved for Remicade injections through Sept. of this year. Start in a week or so.

Hoping it provides some relief.

-JD
 
missing Remicade

Since being dx with CD in July 09, I was also dx with an extremely rare Hemangiopericytoma tumor the size of a golfball in my spine which needed to be removed immediately in Dec 09.

My Crohns was getting under control with Remicade before all this happned and now that my surgery recovery is going slowly but surely I'm looking forward to having my first Remicade treatment again next week. :poo:

......Nervous about allergic reaction that may have built up since my last infusion wasnt since August - what you do you guys think? I'm excited for it to help with Crohns again and possibly some type of arthritis they are testing me for. Please let me know your thoughts, they would be much appreciated as I've been lonely for quite some time in making these decidions about my life. The tumor removal was almost fatal as it was golfballsize wrapped around my spine. :depressed:

Anyways I feel like I'm getting to the point that I can get my groove back but dont want to get too ahead of myself lol. HELP!
 
Awesome Rose City! Yay for you getting approved!

bella_sky said:
......Nervous about allergic reaction that may have built up since my last infusion wasnt since August - what you do you guys think?
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Hey Bella - I think there is a test that they can do to see if you built up antibodies to the Remi. That might give you a clue as to the greater possibility of a reaction or not.
 
bella_sky said:
The tumor removal was almost fatal as it was golfballsize wrapped around my spine. :depressed:
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Eek! I'm glad you're okay!

__



And does anyone know when the Remicade patent expires in the US? I have to think it is in the next few years? I can't find any info in it.

Thanks.

-JD
 
I am going to get my first infusion sometime next week. I am going to do this. Please assure me they can help me if I have an allergic reaction. I am so nervous about this.
 
bella_sky said:
Since being dx with CD in July 09, I was also dx with an extremely rare Hemangiopericytoma tumor the size of a golfball in my spine which needed to be removed immediately in Dec 09.

My Crohns was getting under control with Remicade before all this happned and now that my surgery recovery is going slowly but surely I'm looking forward to having my first Remicade treatment again next week. :poo:

......Nervous about allergic reaction that may have built up since my last infusion wasnt since August - what you do you guys think? I'm excited for it to help with Crohns again and possibly some type of arthritis they are testing me for. Please let me know your thoughts, they would be much appreciated as I've been lonely for quite some time in making these decidions about my life. The tumor removal was almost fatal as it was golfballsize wrapped around my spine. :depressed:

Anyways I feel like I'm getting to the point that I can get my groove back but dont want to get too ahead of myself lol. HELP!
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I am glad that you are doing ok :) I was wondering all this time from your last post a while ago how you were doing. As far as the Remicade I would try it again and see if it is able to help you. The only way you will know is if they try. I dont believe that you would have a bad reaction to it. I just hope that it will help you again if it did before.
 
Lydia said:
I am going to get my first infusion sometime next week. I am going to do this. Please assure me they can help me if I have an allergic reaction. I am so nervous about this.
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I went for my first infusion two weeks ago and yes, they can help you if you're allergic. First of all, they can give you Benadryl/Tylenol as prep meds prior to IV. Then, they can administer the infusion VERY slowly in case you have a bad reaction, it's to a small amount of Remi. If you have it at a hospital they have emergency treatments as well.
I'm sure you'll be O.K., I'm allergic to everything and mine went fine. Best wishes and better health to you!
 
Yes I had an allergic reaction - pretty bad actually but I was able to finish the infusion with lots of benadryl and prednisone many hours later without being admitted to the hospital. And I gotta say the Remicade has definitely made everything else better since then and was worth the scare during the infusion - its all ok. I'm so happy at how on top of things the nurses and all are for treatments - I felt completely taken care of :) - please dont worry. And I plan on going back for the next infusion in May knowing it may happen again, the effects of Remicade are just so worth it!! I wish you all the best and please dont worry so much.

The reaction to me - I felt a tightness in my chest, then face got flushed, then I started coughing and immediately they started me on oxygen and other stuff and was absolutely fine :). Its hard believing how scary things seem beforehand then when it happens and afterwards it doesnt seem so bad. Hope that my story eases some of your worries and concerns - anytime you want to talk I'm here!!
 
I am just waiting for them to call me back with the appointment date. Waiting is hard to do. I feel like I am in limbo.
 
Yeah! They called me today. My appointment is on the 30th. One more week to go. I hope I can come off the steroids as quick as possible after that.
 
So I know I am new here and I don't have a Zone password where these discussions take place, but there is no negative interaction with marijuana and Remicade right?

I just had my first infusion this week and pain pills are doing anything for me anymore and they just back me up further so I want to stop taking them.

Spoke with my doctor about a card and he simply said he didn't really advocate for med mari, but didn't say I shouldn't use it, if you catch my drift.

So I am in the clear right? I've never really been a fan of mari, honestly, but I am really tired of hurting and not being able to sleep.

Thanks.
 
Rose City said:
So I know I am new here and I don't have a Zone password where these discussions take place, but there is no negative interaction with marijuana and Remicade right?

I just had my first infusion this week and pain pills are doing anything for me anymore and they just back me up further so I want to stop taking them.

Spoke with my doctor about a card and he simply said he didn't really advocate for med mari, but didn't say I shouldn't use it, if you catch my drift.

So I am in the clear right? I've never really been a fan of mari, honestly, but I am really tired of hurting and not being able to sleep.

Thanks.
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If I was in pain, I would do it. I wouldnt think they were contraindicated. I am not a professional but I have used MJ with a few of my crohns prescriptions in the past with no problems.

If you are worried make sure someone is with you when you try it the first time.
 
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Lydia said:
If I was in pain, I would do it. I wouldnt think they were contraindicated. I am not a professional but I have used MJ with a few of my crohns prescriptions in the past with no problems.

If you are worried make sure someone is with you when you try it the first time.
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Oh no I'm not worried about respiratory problems or passing out or anything like that (as the implication is with a "sitter") I have just read some things in my internet searching (which I know should probably be avoided with a chronic disease :roflanim:) that mari can weaken the effects of Remicade. I ask because if I am spending this much money on a drug I don't want to weaken the results.

I don't see how that could be though, as there is not real proof of that anywhere and preliminary research seems to imply that mari could actually have a similar affect to the other TNF antagonists.

I know for a fact that it doesn't interact with any of my other drugs, as verified by two separate pharmacists

It is also super telling that my doc didn't say "don't do it," he just said he doesn't "advocate for it."
 
Rose City said:
Oh no I'm not worried about respiratory problems or passing out or anything like that (as the implication is with a "sitter") I have just read some things in my internet searching (which I know should probably be avoided with a chronic disease :roflanim:) that mari can weaken the effects of Remicade. I ask because if I am spending this much money on a drug I don't want to weaken the results.

I don't see how that could be though, as there is not real proof of that anywhere and preliminary research seems to imply that mari could actually have a similar affect to the other TNF antagonists.

I know for a fact that it doesn't interact with any of my other drugs, as verified by two separate pharmacists

It is also super telling that my doc didn't say "don't do it," he just said he doesn't "advocate for it."
Click to expand...

Yeah, my specialist was the same way. He said it he didnt want to get involved, but told me not to do too much or it'll make me dumb. He wasnt for it but he wasnt against it either. I dont see how it would weaken the effects since its anti-inflammatory and promotes healing in crohns from the studies that I have read.
 
Yes, I have read the same things. Thanks for your response.

And good luck with your Remicade! I hope it works for both of us!
 
2 more days. I keep picturing good things for myself. I am going to get my life back just in time for summer. I am going to feel better. I am not going to have that weird chest thing that people seem to have happen. Everything is going to go smoothly. Ther are giving me some cortisone and benedryl for the infusion to prevent an allergic reaction so maybe it will go smoothly.
 
Here I am NOT at my Remi infusion, which is supposed to be today.
Yet AGAIN, insurance denied it because I haven't seen my GI in so long.
I HAVEN'T SEEN MY GI BECUASE MY INFUSIONS ARE WORKING SO WELL, DUH!!! He managed to get me in to his office quickly though, and I should hear if it is approved within 24 hours from the time that they receive his chart, which he said the secretery would fax there. So hopefully I will have it scheduled within a week or two.

Lydia, you're tomorrow right? GOOD LUCK!
 
My Butt Hurts said:
Here I am NOT at my Remi infusion, which is supposed to be today.
Yet AGAIN, insurance denied it because I haven't seen my GI in so long.
I HAVEN'T SEEN MY GI BECUASE MY INFUSIONS ARE WORKING SO WELL, DUH!!! He managed to get me in to his office quickly though, and I should hear if it is approved within 24 hours from the time that they receive his chart, which he said the secretery would fax there. So hopefully I will have it scheduled within a week or two.

Lydia, you're tomorrow right? GOOD LUCK!
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Why would you need to see your doc if you feel good?! Stupid insurance. As if we dont have better things to do when life is going well.

Yep. I go tomorrow. I told my hubby we are having pizza tonight, because if I am gonna die tomorrow I may as well eat something I really miss. ;) I am only half way serious. I wish I could see into the future and know that I am worrying for nothing. lol.
 
I had my infusion today and I didnt feel a thing, except the benedryl for about an hour. Still feeling ok. I hope this works.
 
Good news! My GI doc says the results from the CT Enterography were good! She says there's "not a lot of active Crohn's disease" and she doesn't recommend surgery at this point. I am excited and relieved! I really didn't want to have surgery.

I've also been feeling really good lately. My doc said I didn't need to restrict my diet, and that I should try adding back in the foods I had been avoiding, as much as I could tolerate. So, I've been eating just about anything and everything I want, and feeling better than ever! It's like a dream come true!

Next infusion tomorrow... and every 6 weeks from now on! :ylol2:
 
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Hey Lydia!

Good news! I've been following you, and knew you were bricking it, so glad it's ok!
I hope to join the club, having consultation next week, or I might join the Humira one, still don't know wot to do!
 
Its been only 4 days and I feel pretty good. No side effects that I can tell of. Also the drainage from one of my fistulas has pretty much stopped and my bum doesnt hurt at all anymore, even after a BM. I still have a little inflammation in my colon but no where near as bad as it was. I dont get the breakthrough inflammation that I was getting a night when the pred starts to wear off. I really hope this works out well for me. So far I think its pretty good. I think I am going to taper to 15 mg of pred in a couple days to see how I feel. I have also put on about 8 lbs since starting the pred a couple weeks ago.
 
careful there

kromom1 said:
To everyone on Remicade, are you on other medications, too? My doc wants me to stay on Imuran with the Remicade. I will still be on pred when I start the Remi, too, but will hopefully be off of it for good a couple of weeks later, if the Remi works.

Lisa
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My doctor said it was dangerous to be on Remicade and Imuran at the same time. It may increase your risks of getting lyphoma so you may want to get a second opinion or do some research on your own before taking both meds at the same time.
 
I have a question. How long do you all stay on Remicade for? Do you do the 2,6 8 weeks intervals and then stop or do you continue longer? Do you stay on it for a year or more?

Please answer as I am very very curious! Thank you:)
 
fateful_one said:
My doctor said it was dangerous to be on Remicade and Imuran at the same time. It may increase your risks of getting lyphoma so you may want to get a second opinion or do some research on your own before taking both meds at the same time.
Click to expand...

I did my research. People on both have a higher chance of going into complete remission too. The higher risk of lymphoma with immuran seems to occur only in young males, like children, teens and young adults. I dont plan on doing the remicade immuran combo forever. I imagine I will drop the immuran later on, maybe 6 months to a year from now.

My specialist said I will be on remicade indefinitely. So from now on till I have a problem with it or it stops working. I may come off when I get pregnant, but I wont try for a baby until I am at least off imuran.
 
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I've been on imuran and remicade combination for a very long time... I was on the Remicade when it was in the open label drug trials in Canada the first time... Then had to stop for a few months because they thought I reacted to it... I was put back on again after a year or two when I figured out I was allergic to the Benadryl they were giving me pre-injection to reduce the possibility of building antibodies to the Remicade... was on it for a few years, then had to stop when I switched jobs... once the benefits kicked in, I went back on it. Injection #37 (as near as I can figure) is Thursday April 8th.
I was put on Imuran before I started the Remicade (when I was on the Prednisone for about 3 years straight).
 
I'm getting my Remi RIGHT NOW!! WOOOOOO-HOOOoooooo!!
I'm only 8 days late after all.

Conversation -
Nurse - (bringing me to my chair at 2:30) We had you down as coming in at 1:30. (snotty tone)
Me - yeah?
Nurse - Oh, you knew you were late?
Me - I've been in the waiting room for over an hour.

I swear - it's always something! That is the second time that has happened too. She said she's gonna tell her manager, lol!
 
I am back and here we go again!

I am no stranger to Remicade but...

I am a bit confused though, this time around my doctor says I must never stop taking the Remicade and now stay on it FOREVER! Why? And how many here have been on Remicade continuiously for a year or more? And why haven't my doctors ever suggested this before!?!?!

Well, anyway I am happy to be part of the club again. This time I plan on staying:)
 
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fateful_one said:
I am no stranger to Remicade but...

I am a bit confused though, this time around my doctor says I must never stop taking the Remicade and now stay on it FOREVER! Why? And how many here have been on Remicade continuiously for a year or more? And why haven't my doctors ever suggested this before!?!?!

Well, anyway I am happy to be part of the club again. This time I plan on staying:)
Click to expand...

Its up to you really. If you feel its working and dont want to risk stopping, then keep taking it. It depends what you feel about taking medication long term. Some of us notice crohns symptoms right around the next infusion date and know that they cant risk stopping. I am new to remi so I dont know if that will happen to me yet. Also a lot of people develop antibodies to the remicade when they stop taking it, and they can never take it again because they become severely allergic. I am going to stay on it for a year at least. After that I will re-evaluate my situation and decide what to do.
 
I've been on it for coming on 9 years (with 2 small breaks in there). I was on 8 week intervals up until recently - yesterday was my first day at 6-week intervals. They took some extra blood to send to California to determine the amount of pre-treatment Remicade in my blood, as well as the amount of antibodies if any present - depending on those results, they may be switching me to Humira.
 
Hi all - first post here- I have been on Remicade since fall 2005 - after dealing with (multiple) fistulas for @2 years, on-again, off-again symptoms, 6MP, steriods etc.....you all know the drill....

Anyway - shortly after starting the Remicade, my fistuals went away! Woo hoo!.......I go every 8 weeks for an infusion, and am currently on the lowest dosage. One 'side effect' I have had is weight gain - for the first time in my life I have to watch what I eat not for exacerbating symptoms, but to try not to put too much weight on!

One thing that has developed over the last year or so are rashed - more like a dermatitis or psoriasis.....and more so over the past month....a royal pain in the neck! My dermatologist doesn't seem to think anything of it - I will be checking with my GI on my next visit.

Next infusion is April 26th.......Anyone else here from NY who goes to Albany Med?
 

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