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Length between remicade treatments

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Ulcerative Colitis
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Posted 11/21/2013 1:39 PM (GMT 0)
My third remicade treatment is tomorrow and then I start the 8 week rotation. This week I started to feel kinda crampy and it was only 4 weeks between treatments. What I'm wondering is, am I going to last the full 8 weeks? Is this just because it's still the introductory phase? I really want the 8 weeks. I don't really want to go to 6 weeks or less between treatments. Anyone experience this?
Posted 11/21/2013 4:04 PM (GMT 0)
Everyone is different. Some people are just fine with the 8 week intervals at 5mg/kg. Some do 8 week intervals at 7.5mg/kg and some at 10mg/kg. Others have to do 6 week intervals at 5mg/kg, or 7.5 mg/kg, or 10 mg/kg. It just depends on how your body reacts to it.

What else are you taking besides Remicade? Are you taking Azathioprine (Imuran), it works in conjunction with the Remicade helping suppress your immune system.

I'm currently in between my 3rd infusion (4 weeks ago) and my 4th one. I have unfortunately noticed a little blood occassionally in my BMs now and a little pain has returned. I am also tapering off of Prednisone right now (at 10mg) so I don't know if that is the problem. There are just so many uncertainties about this disease and the meds.

I have an appointment with my GI in a week and a half so I'm going to see what he wants to do. I'm hoping to make it the full 8 weeks and only have to do 5mg/kg, but if it needs to be upped or done at a shorter interval so be it.
Posted 11/21/2013 4:42 PM (GMT 0)
The only other thing I'm on is 10mg of prednisone tapering off. Just started getting side effects with it too. Was totally fine on 40mg but as soon as I got down to 10, moon face, bad acne, and a light mustache. My GI really wants to see how the remicade does on its own first and if it doesn't do 100% he might add something. So far it's been awesome. Yeah I've had some cramps lately but it's NOTHING in comparison to where I was and they go away pretty quickly.
Posted 11/21/2013 4:49 PM (GMT 0)
Hmmm... really hard to say which is the cause for either of you because you are currently tapering off of pred while early on remi. The thing is my body gets angry when I drop my pred dosage, meaning I might see blood in my stool, have increased urgency, have to poop more than normal, etc. That anger should be temporary, perhaps a 3-5 period of bad days and then my body adapts.

If you are coming off of the pred too quickly, say before Remicade has made its full effect then it could be just uc symptoms showing through.

I have been on a constant pred dosage through my first 3 remi loading doses. Now that I am done with those, I have dropped my pred 2.5mgs (to 10mgs now) and will hold here for another 3-4 weeks. After which my GI is doing a flex-sig scope and if things look good then I am dropping another 2.5mgs (to 7.5mgs). Shortly there after I will be having my 4th remi dose. At this point I want to know what med is doing what. And taking things reallly slooow just to make sure.
Posted 11/21/2013 4:54 PM (GMT 0)
I do the Remicade every 6 weeks at 10mg/kg. I currently just tapered off prednisone since I had my surgery back in August. As my prednisone dosage got lower I started to see some bleeding. Granted I have an ostomy but I still pass a lot of mucus through my rectum and do have some slight inflammation there.

My doctor in the past when I was on the 8 week intervals and my symptoms started to come back prior to my next infusion would put me on prednisone to bridge the gap till I got my infusion then would taper off.
Posted 11/21/2013 7:48 PM (GMT 0)
iPoop - I'm also taking Ferrous Sulfate (Iron) because my blood tests showed me being anemic. I hate taking the Iron because it causes cramping in the stomach so it's just another symptom and confuses me more about what's going on with my body. I'll hopefully be off of that the next time I see my GI.

I'm hoping the Remi and Imuran take full effect soon as I would like to be off of pred ASAP, but I know I have to take it slowly. I was taking 40mgs from the end of August until October 21st, then I dropped to 20mgs. Everything was fine, except for headaches at night. 2 weeks later I dropped to 15mgs and 2 weeks after that to 10mgs. Been at 10mgs since yestersay, notcied the blood Friday or Saturday of last week. Very minimal blood with no mucous, but pain is up a little.

Just a waiting game now to see if it is going to get worse, maintain or get better.
Posted 11/21/2013 7:56 PM (GMT 0)
for years I was going for 6 week intervals at 10mgs/KG. I've heard of people going upwards of 10 weeks between infusions. I started at 8 weeks and needed to go down to 6 weeks and double doses but Remicade work great for me at that dosage/interval for almost 5 years once we got the dosing correct.
Posted 11/21/2013 11:18 PM (GMT 0)

MikeSoCal said...
iPoop - I'm also taking Ferrous Sulfate (Iron) because my blood tests showed me being anemic. I hate taking the Iron because it causes cramping in the stomach so it's just another symptom and confuses me more about what's going on with my body. I'll hopefully be off of that the next time I see my GI.

what's the mg of iron you're taking? Do you take it with food? I remember taking Neferix (150mg) of iron and I made the mistake of taking it on an empty stomach and I felt sick for about 4 hours. I started taking it with food and that calmed it down. I did find that the iron pills did nothing to raise my iron levels, I had to switch to iron infusions.
Posted 11/21/2013 11:51 PM (GMT 0)
MikeSoCal, no kidding on wanting to be off the pred. My Pred-iversary is coming up in Jan 2014 (started pred in jan 2013). At 10mgs now shakehead
Posted 11/24/2013 5:30 PM (GMT 0)

blksteeda said...

MikeSoCal said...
iPoop - I'm also taking Ferrous Sulfate (Iron) because my blood tests showed me being anemic. I hate taking the Iron because it causes cramping in the stomach so it's just another symptom and confuses me more about what's going on with my body. I'll hopefully be off of that the next time I see my GI.

what's the mg of iron you're taking? Do you take it with food? I remember taking Neferix (150mg) of iron and I made the mistake of taking it on an empty stomach and I felt sick for about 4 hours. I started taking it with food and that calmed it down. I did find that the iron pills did nothing to raise my iron levels, I had to switch to iron infusions.

325mg 3 x a day. I've tried taking with food, without food, 2 hours after eating, 1 hours before eating and none of it makes a difference. I always end up with stomach cramps about an hour or so after taking it. I'm hoping these pills work, I have to get blood work done tomorrow and then I see my GI the following week to see how my levels are.
Posted 11/24/2013 5:33 PM (GMT 0)

iPoop said...
MikeSoCal, no kidding on wanting to be off the pred. My Pred-iversary is coming up in Jan 2014 (started pred in jan 2013). At 10mgs now shakehead

I thought I was on the right track for tapering off, was down to 10 this week, but symptoms started coming back. Had a little blood, frequency was increasing and the pain level went up. I called my GI and he told me to go back to 20mg. rolleyes So frustrating, this is the first set back I've had since being out of the hospital, things seemed to be going so well.
Posted 11/24/2013 6:23 PM (GMT 0)

MikeSoCal said...

blksteeda said...

MikeSoCal said...
iPoop - I'm also taking Ferrous Sulfate (Iron) because my blood tests showed me being anemic. I hate taking the Iron because it causes cramping in the stomach so it's just another symptom and confuses me more about what's going on with my body. I'll hopefully be off of that the next time I see my GI.

what's the mg of iron you're taking? Do you take it with food? I remember taking Neferix (150mg) of iron and I made the mistake of taking it on an empty stomach and I felt sick for about 4 hours. I started taking it with food and that calmed it down. I did find that the iron pills did nothing to raise my iron levels, I had to switch to iron infusions.

325mg 3 x a day. I've tried taking with food, without food, 2 hours after eating, 1 hours before eating and none of it makes a difference. I always end up with stomach cramps about an hour or so after taking it. I'm hoping these pills work, I have to get blood work done tomorrow and then I see my GI the following week to see how my levels are.

if the levels aren't up, definitely ask about iron IV infusions. It's usually about 6 that are given once or twice a week then a re-check
Posted 11/25/2013 12:56 AM (GMT 0)
MikeSoCal,

I can relate. I was doing great following my first remicade treatment and was so hopeful. Then today, several times in the bathroom and alot of blood each time. This disease is so frustrating.  I had one good week. Hopefully the following treatments will keep my system in check longer.

Greg 

Posted 11/25/2013 4:10 PM (GMT 0)

blksteeda said...

MikeSoCal said...

blksteeda said...

MikeSoCal said...
iPoop - I'm also taking Ferrous Sulfate (Iron) because my blood tests showed me being anemic. I hate taking the Iron because it causes cramping in the stomach so it's just another symptom and confuses me more about what's going on with my body. I'll hopefully be off of that the next time I see my GI.

what's the mg of iron you're taking? Do you take it with food? I remember taking Neferix (150mg) of iron and I made the mistake of taking it on an empty stomach and I felt sick for about 4 hours. I started taking it with food and that calmed it down. I did find that the iron pills did nothing to raise my iron levels, I had to switch to iron infusions.

325mg 3 x a day. I've tried taking with food, without food, 2 hours after eating, 1 hours before eating and none of it makes a difference. I always end up with stomach cramps about an hour or so after taking it. I'm hoping these pills work, I have to get blood work done tomorrow and then I see my GI the following week to see how my levels are.

if the levels aren't up, definitely ask about iron IV infusions. It's usually about 6 that are given once or twice a week then a re-check

Thanks for the info blksteeda, I'll definitely bring that up if things haven't improved.

Posted 11/25/2013 4:13 PM (GMT 0)

I need help said...
MikeSoCal,

I can relate. I was doing great following my first remicade treatment and was so hopeful. Then today, several times in the bathroom and alot of blood each time. This disease is so frustrating.  I had one good week. Hopefully the following treatments will keep my system in check longer.

Greg 

Yea, I'm just over half way between my 3rd and 4th infusions (waiting 8 weeks). Thinking he might want to do it sooner and not wait the full 8 weeks or drop down to 5mg/kg. Just want to make it through turkey day, symptoms have slightly improved since moving up to 20mg of pred, but haven't disappeared or returned to what they were before tapering.
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