Moving From Humira to REMICADE

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Tony H

Tony H

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Dec 9, 2012
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Hi in the hospital for the last few days from a bad flare , on iv steroids and iv antibiotics , I was on Humira for the last year and it was very effective until the end of July and went downhill from there , so I'm a bit nervous about the change , hopefully all will go well .
 
I love Remicade so far. I was on Humira for 4 months and it did nothing for my disease. As soon as I started the Remicade it immediately stopped the pain and my hemoglobin started to rise. I had to have a couple high dose iron infusions (Injectafer) too. They give me Remicade in combination with Cellcept to prevent antibodies from developing. Hopefully it will work as well for you as it has for me!
 
So today I got the all clear from my biopsies , and then got my first infusion about 4 hours ago , keeping me in hospital overnight (out early tomorrow) and so far so good ,
I had a dose of piriton beforehand so had a nice snoozy experience ,
I feel a bit wiped out but hopefully this will pass and Ill get a good night sleep
 
Tony H said:
So today I got the all clear from my biopsies , and then got my first infusion about 4 hours ago , keeping me in hospital overnight (out early tomorrow) and so far so good ,
I had a dose of piriton beforehand so had a nice snoozy experience ,
I feel a bit wiped out but hopefully this will pass and Ill get a good night sleep
Click to expand...
Hope all good things for you.
 
Hi Tony H,
I hope all goes well for you and that you feel better soon. Best wishes.
:rosette1::getwell:::rosette1:
 
Finally "released" from hospital , was feeling a little drained but no side effects , bm's have slowed in intensity and frequency , feeling a little braver about passing wind :ywow: , I am really lucky to have had a great GI team who took care of me in the MUH in Cork City ,
 
Tony H said:
Finally "released" from hospital , was feeling a little drained but no side effects , bm's have slowed in intensity and frequency , feeling a little braver about passing wind :ywow: , I am really lucky to have had a great GI team who took care of me in the MUH in Cork City ,
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Glad you are better.
 
Well, we're almost on the same schedule! I just had my first Remicade infusion last Friday after Humira failing me.

I was hoping to catch up on some sleep as I had read that the infusion may make you sleepy but they also gave me 100mg of hydrocortisone and that kept me up all night, bummer!
My next infusion is in 2 weeks time. I assume you're on the same schedule of loading doses in week 0,2 and 6 before you go to 8 weekly infusions?

I hope it works for both of us!
 
Layla said:
Well, we're almost on the same schedule! I just had my first Remicade infusion last Friday after Humira failing me.

I was hoping to catch up on some sleep as I had read that the infusion may make you sleepy but they also gave me 100mg of hydrocortisone and that kept me up all night, bummer!
My next infusion is in 2 weeks time. I assume you're on the same schedule of loading doses in week 0,2 and 6 before you go to 8 weekly infusions?

I hope it works for both of us!
Click to expand...
Hope it helps you both
 
Layla said:
Well, we're almost on the same schedule! I just had my first Remicade infusion last Friday after Humira failing me.



I was hoping to catch up on some sleep as I had read that the infusion may make you sleepy but they also gave me 100mg of hydrocortisone and that kept me up all night, bummer!

My next infusion is in 2 weeks time. I assume you're on the same schedule of loading doses in week 0,2 and 6 before you go to 8 weekly infusions?



I hope it works for both of us!
Click to expand...



So do I , my next is on the 11th , I think /hope it's starting to have an effect , a lot less cramping and less trips to the toilet , I'm still on 40mg prednisone for another 5 days , then reducing by 5mg weekly .
 
Tony H said:
So do I , my next is on the 11th , I think /hope it's starting to have an effect , a lot less cramping and less trips to the toilet , I'm still on 40mg prednisone for another 5 days , then reducing by 5mg weekly .
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I felt relief IMMEDIATELY with Remicade. I was almost in disbelief. I thought the first few days were a fluke because I had cleaned out for a colonoscopy and upper endoscopy 2 days before and my system was just getting ready to freak out with food. But no, it didn't. Now i've had my 2nd infusion and still doing fine. I've tapered to 15 mgs Prednisone and still no/very little pain. Are you taking it in combination with 6mp/azathioprine/methotrexate/cellcept?
 
aypues said:
I felt relief IMMEDIATELY with Remicade. I was almost in disbelief. I thought the first few days were a fluke because I had cleaned out for a colonoscopy and upper endoscopy 2 days before and my system was just getting ready to freak out with food. But no, it didn't. Now i've had my 2nd infusion and still doing fine. I've tapered to 15 mgs Prednisone and still no/very little pain. Are you taking it in combination with 6mp/azathioprine/methotrexate/cellcept?
Click to expand...



Nothing else for now , had a bad reaction to 6 mp so that's out
 
I felt immediate relief with Humira but only during the loading doses so say the first month or so. When the dosage was increased to once a week that helped a little too but just not enough.

I'm really hoping Remicade will be different. I'm fairly good today so hoping it's the remicade kicking in, fingers crossed.
I'm also not an anything else, a bad reaction to Aza and constant nausea on Methotrexate so just Remicade for now.
 
Layla said:
I felt immediate relief with Humira but only during the loading doses so say the first month or so. When the dosage was increased to once a week that helped a little too but just not enough.

I'm really hoping Remicade will be different. I'm fairly good today so hoping it's the remicade kicking in, fingers crossed.
I'm also not an anything else, a bad reaction to Aza and constant nausea on Methotrexate so just Remicade for now.
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Good luck. Yeah, i had a reaction to methotrexate and couldnt tolerate 6mp/imuran so we ended up with Cellcept (500mg twice a day) which has been totally fine. My doctor said it does basically the same thing as the other three...to prevent antibodies to Remicade so it can work better/longer.
 
Thanks, I'll look into Cellcept, never heard of it but who knows it might be available here too.
 
a better day today again , only 2 bm's and the gas is gone down a level as well , my wife can take her gas mask off , or can she? :stinks:
 
Not too bad today a few loose bm's but no bleeding ,
heading up for a dexa scan later ,last time it showed osteopenia ,
hoping for improvement but not hopeful with all the pred I have taken
Anyway it's a nice day out so at least I'll get to se some of that .
 
Tony H said:
Hope you feel better as well Layla .
Click to expand...

Thanks! I was feeling very optimistic for the first couple of days and even had a little salad!

But back to taking Imodium or codeine now to "stem the flow". Almost can't wait for the second dose, hoping that will have a more lasting effect.

Hope the dexa scan doesn't show things getting worse. I had one to recently and it also showed osteopenia, I'm taking lots of calcium hoping that will help some.
 
Back from the scan ,, it was a full mri scan which was an unusual experience , will be nice to get an update on my density , last time I was showing as osteopenia ,
had a much better afternoon today , no bm since 12.45 , still feeling a bit unsteady but a definitive improvement ,
the codeine helps slow things down all right .
Hope thinks go well for you as well .
 
doing a little better again today , firming up slightly so thats good , just one thought I seem to have a little dry throat , no pain or phlegm , just wondering if any one else had this on remicade ?
 
Good to hear you're doing better! I don't have any throat issues or heard about them, may not be related?

I was good for the first few days but back to blood in stool and general tiredness etc. In hindsight I think the hydrocortisone made me feel better. Not the Remicade, yet.

Hopefully the second dose will have a more lasting effect!
 
Just an update had a bad night last night . I'm in a&e now waiting for fluids.
 
24 hours on iv fluids , antibiotics and hydrocortisone feeling a bit better but still having one bm at least an hour , my GI will be able to see me tomorrow but the surgical team are hovering , at this stage I think I would nearly welcome it , at least the view from my window is good

view of my Beautiful City Cork by the River Lee
 

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Tony H said:
24 hours on iv fluids , antibiotics and hydrocortisone feeling a bit better but still having one bm at least an hour , my GI will be able to see me tomorrow but the surgical team are hovering , at this stage I think I would nearly welcome it , at least the view from my window is good

view of my Beautiful City Cork by the River Lee
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Nice picture
 
Hi Tony,
I hope all goes well for you and you feel better soon, and get home. Love the photo, I am a keen photographer myself.
Best wishes.:getwell:
 
Thanks Honey , seem to be all rehydrated today , so better able to deal with the cramps and bms , just waiting for the big guns to arrive and assess me , I'm on tender hooks waiting because the surgeons were hovering around at the weekend giving me options
At least im in a nice room with a lovely view so that does help .
 
Hi there,
hope the news is good and you start to feel better, and stronger. I was in hospital for sometime a few years ago because of side effects of meds. It is a necessary evil until they make things improve for you, but one would rather be at home! Get well soon.
:hang:
 
Had a good afternoon yesterday , night not so good , upping the dose of remicade this morning , here hoping .
 
thanks Ron im up early , you're up late the joys of ibd , how are you doing at the moment ?
 
Thanks, Tony and Layla. Knowing people who have made the switch makes it easier.

I'm thinking seriously about going to Remicade just so I can retire. Humira is still working, but I can't afford my after Medicare portion after retiring. Plus I'd have to come up with 7 or $8000 in January and February just to blow through Medicare's catastrophic coverage.

I know it's not smart, and I know there's risks, but I have been on concrete factory floors for 42 years and I have bone spurs and arthritis in my feet. Big Pharma greed shouldn't prevent a person from retiring, damn it.
 
Hi Tony, I have been reading your posts today because my GI is talking about switching me from Humira to Remicade because the Humira doesn't seem to be working on me. I was on it years ago and ran into insurance problems and wasn't able to get it, so I was off for over a year. I just got back on a few months ago and I haven't seen any difference in my symptoms on it this time. I was diagnosed in 2010, but had never been sick before in my life, so all this doctor stuff is really new to me. I hope things get better for you soon. I feel like I am flying blind in the dark with all of this, and then I see you and you have been dealing with it for so many years and my issues seem so small. My prayers are with you.
 
Hello,

I went from remicade to humira. I went to humira because I had an allergic reaction to the remicade. Otherwise remicade worked really great for me.
 
I had the remicade infusion yesterday , doubled it to 10 mg/kg , had a better night , only one at 4 am , then 2 more from 7 to 8 am , and all quietish since then , I'm still on the iv antibiotics (flagyl and piperacillin ) and hydrocortisone ,
I feel very weak this morning , I presume its the remicade effect ,
thats the end of my update , hope everyone is feeling a little better .
 
Hope the doubling of the dose works for you!
My second dose has been delayed because of a junior doctor strike so I don't get it until next Tuesday! Which is a bit of a pain as I'll be working on Wednesday so I hope I'll get some sleep this time.
I'm otherwise fine, getting by on immodium and/or codeine.
 
Layla said:
Hope the doubling of the dose works for you!
My second dose has been delayed because of a junior doctor strike so I don't get it until next Tuesday! Which is a bit of a pain as I'll be working on Wednesday so I hope I'll get some sleep this time.
I'm otherwise fine, getting by on immodium and/or codeine.
Click to expand...
I hope good things for you.
 
Layla said:
Hope the doubling of the dose works for you!
My second dose has been delayed because of a junior doctor strike so I don't get it until next Tuesday! Which is a bit of a pain as I'll be working on Wednesday so I hope I'll get some sleep this time.
I'm otherwise fine, getting by on immodium and/or codeine.
Click to expand...

Has a much better day yesterday ,cramps have all but gone and the time between my last two bms was nearly 8 hours, so the double remicade looks like its kicking in ,
sorry to hear your second infusion has been delayed , hope it goes as well as mine "seems to have"
I dont know how you can work when you are feeling so unwell , best wishes from a lovely night in Cork ,
nice to know you have been here and liked it , its a nice compact little city with lots to do all within walking distance .
 
Tony H said:
Has a much better day yesterday ,cramps have all but gone and the time between my last two bms was nearly 8 hours, so the double remicade looks like its kicking in ,
sorry to hear your second infusion has been delayed , hope it goes as well as mine "seems to have"
I dont know how you can work when you are feeling so unwell , best wishes from a lovely night in Cork ,
nice to know you have been here and liked it , its a nice compact little city with lots to do all within walking distance .
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I guess I'm really lucky in that I don't have that much pain. I did when I was initially diagnosed, the cramps were killing but now it's really just D and fatigue with the occasional cramp. Oh and some pesky fissures. Just heard today that I'll also be having an iron infusion when I go for the next Remicade, hopefully that will help with the fatigue and breathlessness.
I also don't look ill at all, my bloods are mostly good and am not losing weight, but inside the strictures are forming and I'm losing a lot of blood, hence the Remicade.
I only work around 3 days a week, I couldn't cope with full time work, haven't for years. Have you?

Are you still in hospital? If so, I hope you'll be out soon, despite the view :)
 
Hey Layla , still in hospital , hasn't been the the best 24 hours , bms are frequent again , at least 10 yesterday and 8 and counting today , the latest from the docs is that if it gets much worse that surgery is looking more likely ,
haven't worked in years , you think you can go back and all of a sudden you are back where you started again , charging for the toilet
Really hope that the iron infusion and the remicade will give you some relief .

the view is still great but as they say its a nice soft day today, (its raining)
 
Well surgery it is , , my GI was just in and Im just waiting on the surgical team to set the time , a bit shocked but if all goes well my quality of life should be a lot better .
 
thanks Ron appreciate the support , will be seeing the main surgeon monday and if all goes as planned , surgery as soon as possible .
 
Tony H said:
Well surgery it is , , my GI was just in and Im just waiting on the surgical team to set the time , a bit shocked but if all goes well my quality of life should be a lot better .
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Hey Tony, sorry to hear that!
But yes if it helps your quality of life it's worth it.
I had surgery 2 years ago now and what a relief it was to be able to eat without fear of strictures.

Hope it all goes well!
 
Hey Tony. Sorry to hear about your set back. Man , they did same thing to me. Released me too early... You take care. never. Ever. give up.
 

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