Anyone Try Remicade?

[Daniel J. Kuntz]

I have had my first two treatments of Remicade and it has been over two weeks isnce my second treatment. I really just do not feel any better. My history is that 26 years ago I had my colon removed for Ulcerative Colitis and had a J Pouch installed. I had terrible problems with it for about fifteen years when I finally had surgery for an ileostomy. Things really did get better, but suddenly I had all sorts of problems with adhesions. I had some serious surgery and in the process my doctor discovered that all aong I had had crohn's disease rather than Ulcerative Colitis. The symptoms persisted and after trying Imuran, which made me feel much sicker, the doctor put me on Remicade. I do not feel much better yet and I am wondering if I just need to give it more time. Does anyone have any advice for me? Anything would be great!

Thank you very much

 

[butt-eze]

It's different for everyone. I had four Remicade infusions and don't recall noticing a difference until the second infusion. I would keep your fingers crossed that it will help soon. Horrible advice I know!

 

[Jeff D.]

I started it about two months ago and I have felt better since hours after my first treatment. I feel almost one hundred percent and I have gained a lot of weight back sonce starting it. I hope it starts to work for you.

 

[Kev]

Hey Daniel.. Welcome to the forum.. your story really caught my eye, as it seems my case could mirror yours. The jury is still out whether I have UC, CC or CD. As for the Remicade, many on here have gone that route, and my suggestion is you give it a lot more time... there are several folks who post/keep a daily diary on their experiences with remicade or other treatment. Take a look around, see if any ring a bell with your early experiences. one thing that you should consider is that starting remicade, then dropping it if results aren't as fast/spectacular as youd' hoped... well, that can become a real pitfall.
Re-starting Remicade is not a foregone conclusion... very often, it can be a one shot only deal.. Depends on the bodys' antibody response. So try your best to give it your best shot. discuss it with your doctor.. don't throw the baby out with the bathwater. Hey, if you and your doctor reach the conclusion it isnt' going to work, there are other alternatives.. and there are folks on here who are trying them and posting their experiences.. humira logs, LDN logs, even SCD or naturapathic approaches.. you arent' alone, and we try to help each other out here whenever we can. Anyway, once again welcome. keep posting.

 

[BWS1982]

This is definately a similar situation to me, I had my first Remicade infusion on 1/22/08, felt a good bit of difference within several days, but I should note that I was also on several other treatments due to this time being a hospitalization. They had me on 2 antibiotics, Solumedrol (sp?, it's an IV version of prednisone), and also they had a few other medication changes. I can't attribute a single factor to any of the improvement due to them throwing so much at the disease; they called it shotgun therapy, I was doing so bad and suffering to the point that a scientific approach where they could know what was helping was not of concern. It could have been the Remicade, maybe the steroid IV, maybe neither and it was all the antibiotics. That wasn't their concern.

Now the important part of the story is that I then had my second infusion on 2/5/08 and for the 2 weeks prior (since the hospital) I was doing better than I'd been in months, BUT, then the second infusion came and 5 days after that I started getting worse again, not as bad as before the hospital but almost. The one major thing that changed other than getting my second Remicade dose that day? I went down on prednisone from 40mg to 30 mg per day. I believe it could have been that, could have been that I also wasn't receiving the anitbiotics from the hospital, so many factors I'll never know. Now this week I get my third dose, on Thursday.

Keep note what my GI said, that I'm in the loading phase for Remicade, and to not judge it's effectiveness yet, meaning that some of us may not see results earlier on like others (like Jeff above).

Also take note of what my Dr. said about the Imuran, that it works synergistically with Remicade on the immune system, meaning that it pairs up with it to work better than either component alone. I've been on Imuran for 3.5 months and it should finally be in full swing I'd think...

I hope to God that the Remicade works, its cheaper than the Asacol (oddly enough, due to how much insurance will cover), and I'm sick of the failed treatments. I don't mind getting an infusion every 8 weeks for the rest of my life if it means I can be in remission.

 

[TammySue62]

Hi and Welcome
I had excellent results when I was on Remicade.I got the infusions every 8 weeks for 7 yrs.Then it just stopped working for me.You need to give your body more time.Some meds take longer for different people and some act quicker.Thats the puzzle (my opinion) with having CD trying to figure out which meds will work for you and your body.
Be patience it will all work out for yah

 

[soupdragon69]

Hi Daniel,

Good to see you posting. As you have seen there are a fair few of us that have tried or are on remicade..

I have been on it since May 07 and it took until my third infusion to start to feel ANY difference at all. My gastro cons moved my infusions from 8wkly to 6wkly in December 07 as I cannot tolerate imuran or any drugs related to pentasa. I am really finding things are starting to change more now albeit slowly with the move to 6wkly.

I am prepared to wait for any more improvement but its been a really tough road at times so understand why you feel as you do even though I have managed to avoid surgery to date.

Hang in there! Things will improve whether its via the remicade or another option, you just have to find what suits you best thats the exasperating part!

Thinking of you

 

[pnp26]

Hi I am new here but I have been on remicade for about 5 months, I noticed a change the very first day and thought I was in heaven but the last week or so I have resorted back to my old ways, I have had crohns for about 7 years now and have only had a remission for a month or 2 at a time and I thought this was a miracle, i am hoping it is just a glitch and things will return to normal soon, good luck

 

[Digits]

I was on Remicade from 2002 to early 2007, (every 6 weeks) when it stopped giving us the results it was giving us, and switched to Humira. In Feb. 2008, i was switched BACK to remicade (have yet to hear anyone else do that, lol) and i noticed no GOOD changes, but i noticed many side effects, such as the muscle weakness, headaches, dizziness, etc.

Now i get a dose every 4 weeks (dunno why so soon apart) and i have just completed my 2 in 2 weeks dose. I dont feel much better, but i know i will soon, it just takes time.

 

[TammySue62]

I was on Remicade from 2002 to early 2007, (every 6 weeks) when it stopped giving us the results it was giving us, and switched to Humira. In Feb. 2008, i was switched BACK to remicade (have yet to hear anyone else do that, lol) and i noticed no GOOD changes, but i noticed many side effects, such as the muscle weakness, headaches, dizziness, etc.

Now i get a dose every 4 weeks (dunno why so soon apart) and i have just completed my 2 in 2 weeks dose. I dont feel much better, but i know i will soon, it just takes time.

I have stopped Humira because of certain side effects.
Can you (ME) go back on Remicade? Iwas on it for about 7 yrs untill it just stopped working for me that is why they switched me to Humira which I hate and did not find a big change. My pain level is from hell tho.Joints muscles back stomach all ache

I will inquire about switching back to Remicade

 

[Digits]

I have stopped Humira because of certain side effects.
Can you (ME) go back on Remicade? Iwas on it for about 7 yrs untill it just stopped working for me that is why they switched me to Humira which I hate and did not find a big change. My pain level is from hell tho.Joints muscles back stomach all ache

I will inquire about switching back to Remicade

Im not sure, its probably different with everyones condition. My SED rate and other blood tests werent improving after 4 years on it, so we switched to Humira, then back to remicade specifically for Fistulas i had acquired, because remicade targets it.

but it never hurts to ask!

 

[TammySue62]

Im not sure, its probably different with everyones condition. My SED rate and other blood tests werent improving after 4 years on it, so we switched to Humira, then back to remicade specifically for Fistulas i had acquired, because remicade targets it.

but it never hurts to ask!

Ok Thanks
Yes I have several fistulas and remicade did settle them down.Humira seemed to do nothing for me

 

[BWS1982]

wish me luck

I didn't want to clutter the forum with a brand new thread for this, but I feel bad about seemingly hijacking this thread with this too, but I hope the "TS" doesn't mind....

Got my third Remicade infusion tomorrow morning at 10AM, wish me luck fellow "genetic victims"!!

I'm a little nervous for 1) they always have a hard time w/ my veins, took them 3 tries last time and my arms were half black and blue from bruising and it hurt like hell while the nurse "dug around" with the needle as if that was going to help 2) I still could have a negative reaction if my body decides to reject this one and finally 3) This is all my hope riding on the final straw, I know there's humira and other experimental options, but I'm sick of failure, I haven't seen the usual results from Remicade just yet, only minor improvements, the dr is seeming to get frustrated and talks of even doing an "abreviated scope" (whatever that involves, I don't know) to see what the hell's going on in me.

God Willing....

 

[MERF]

So, Benson, how did it go? I hope this one kicked in and you're off and running (and, no, I mean absolutely NO pun!). Please let us know.

MERF

 

[BWS1982]

Well, it's been a little over 48 hours and nothing major in change yet, perhaps a little but it's hard to say, I will have to wait a few more days to narrow it down. My condition goes from almost great one minute to feeling horrid 8 hours later, and I can never tell what does it. The overall is my only basis for judgement, as in how often do I get that "horrid" occurance, and how "horrid" does it get....as for that, I may be seeing improvement, but it's very soon to tell.

The infusion itself went smooth as butter, IV went in on first try, was in and out in 2.5 hours.

Thanks for asking

 

[MERF]

Keep us posted! I found that I could best judge how I was responding by how soon I "hit the wall" during the day.

Again, keep us posted!