Stopping and Starting Remicade??

[Porkpie84]

Hello everyone,

Im due to recieve my first infusion of Remicade on the 23rd of November. Got the usual feelings of nerves, anxiety and excitement. All sorts is going through my head in hope I've made the right decision. Could the magic juice give me the much desired gift of remission? Will I get to do a victory dance after recieving follow up colonoscopy results? I hope so! These are all the questions I am asking myself Sure you can all relate.

I have an important question to ask though and I'm really hoping you Crohn's boffins can help me out. I'm newly diagnosed to Crohn's after recieving an emergency bowel resection in May this year. 5 months after surgery the Crohn's is back at the point of anastomosis with vengence. My GI favours the aggressive approach and has put me on 100mg of Imuran daily and wants me to have the loading doses of Remicade. My terminal ileum is stricturing already you see. After recieving answers from my GI my confidence grew in his methods and I accepted the dual treatment. He said I may only need the three loading doses and that I may not need to continue with the maintenence doses. That seemed fine at the time but now I have a question thats burning in my mind. And its this 'If I stop the Remicade after the loading doses (provided I go into Remission) will this mean I have ruled out further treatment with this drug in the future?' What does everyone think?

I know it may seem stupid to be pondering this but I have to be medicated for this condition for life and at age 27 I dont want to significantly exhaust my possibilities. I'd like to think that if I did stop the Remicade after three doses then I'd be able to return to it in the future if needed. Things I'm thinking are...

• If I stop the Remicade after three doses due to good results then how likely is it that I would retain remission with Imuran alone?
• Do you NEED to stay on Remicade indefinitely if you go into Remission whilst being treated with the drug?

All this is very complicated and I'm aware no one has all the answers but any info or stories would be much welcomed I think I'm just concerned at this notion of building up antibodies to the drug so soon. But the flipside is that I'm concerned about recieving Remicade for the forseeable future on a regular basis. The side effects are obviously a concern and I think that concern is exarcerbated when coupled with taking Imuran also. Do people think its a good long term treatment??

Just wanna thank everyone in advance. I know I'm a waffler but this forum is so liberating. Everyone is soooooo supportive.

Becky x

 

[rygon]

hi ya, im 28 and just had my 4th remicade last thursday. For me it has been a wonder drug. After my 1st infusion I felt quite a bit better, then since then ive been slowly getting better. With my 3rd infusion, my D had pretty stopped and so has the bleeding which ive had for 5 years.

About a week before my next infusion i do notice my symtoms coming back a little but apart from that its been amazing just having a normal life again.

There was something a read (maybe on the NACC website) saying you have a better chance of remicade still working if you stay on it rather than only taking it as and when is needed

 

[davidr]

I always thought that stopping and restarting Remicade led to a higher risk of allergic reaction, but never really looked into any studies on the matter. Turns out, it doesn't--at least not for reintroduction after an initial three-infusion induction regimen.

AIR rate was 17% in both groups, and SLR rate was 26% in the Continuous group and 15% in the Reintro group (not significant). The lack of concomitant immunomodulators and/or pretreatment with hydrocortisone were associated with AIR development (P=0.002).

http://www.ncbi.nlm.nih.gov/pubmed/19417683

If you will stay on Imuran (an immunomodulator), it looks like it will further lessen your risk of an adverse reaction should you resume Remicade in the future.

 

[Dave07]

Don't stop - just keep going

Porkpie84,

I'm no doctor, but I can speak from experience that it's better to just stay on Remicade. Don't stop and restart.

I was diagnosed in early 2007 and started Remicade almost immediately. My symptoms went away entirely and I felt 100% normal. It was wonderful! Except that without symptoms I began to question the diagnosis (I was in denial), and ultimately chose to stop receiving Remicade, without consulting a doctor.

Well a few months later, my symptoms returned. I went to a new doctor, restarted Remicade and expected full remission again. No such luck. Remicade's effectiveness has been significantly less this time around.

I have been back on Remicade for about 1.5 years now and feel about 80% improvement compared to the miracle results I had the first time. I also receive a higher dose of 500 mg (previously 300 mg) and a shorter interval of 6 weeks (previously 8 weeks). My Dr. made both changes because I wasn't seeing much improvement in my symptoms.

You may respond differently to Remicade after stopping and restarting, but for me the reduced effectiveness was unmistakable. I would recommend staying on Remicade as long as it works.

(As a side note, I have read about potentially serious side effects (I think it was cancer) when using Remicade with some other drugs. I don't remember the specific combination, since I'm not on anything else currently, but it may have been Imuran. I suggest doing your research and talking to your Dr. before making any decisions.

Good luck.

Dave

 

[davidr]

The problem with Remicade is that it can lose its efficacy even if you stay on it. My first dose put me into remission within a couple weeks, but 6 months later I started flaring again before my next infusion. It wasn't until I was put on combo therapy (Remicade + Imuran) that I went back into remission. Unfortunately, combo therapy also doubles your risk of lymphoma vs. Remicade or Imuran alone, so you'll have to make a decision if it comes to that.

 

[SarahAnne]

The problem with Remicade is that it can lose its efficacy even if you stay on it. My first dose put me into remission within a couple weeks, but 6 months later I started flaring again before my next infusion. It wasn't until I was put on combo therapy (Remicade + Imuran) that I went back into remission. Unfortunately, combo therapy also doubles your risk of lymphoma vs. Remicade or Imuran alone, so you'll have to make a decision if it comes to that.

Why would your doctor give you an initial dose of Remicade, and not do another one until 6 months later? The initial loading doses are usually at 2, 4, 6 and then every 8 weeks so that the drug can build up in the system and be effective. I've never heard of a doctor waiting that long in between a first and second dose. I'm not surprised the remission didn't last. Did he give a reason?

 

[davidr]

I didn't get the rest of the loading doses because the first one put me in remission, so I jumped right into the 8 week maintenance doses.

 

[Porkpie84]

Hello everyone,

Thank you so much for all your replies. Its really given me food for thought and been very helpful. Its wonderful to hear that Remicade has given so many people relief from Crohns

Davidr thank you so much for the info you sent. I guess the difficult thing is that there is alot of different information and experiences out there. I can find out as much info and stories as I can but ultimately the frustrating thing is that my experience with the drug could be totally annoying. What a difficult disease this is! I really hope I can use Remicade in the future without problems.

I have already started Imuran 50mg daily (soon to be increased to 100mg daily in 2 weeks time) and start Remicade in a weeks time also. After deeply considering the increased risk of cancer I decided to go ahead with the combination therapy. This was my thought process...

From what I know having Crohns increases your chances of getting bowel cancer so sadly some form of cancer could hit me at some point anyway. I also found figures that stated the combination of the drugs increases your chances of getting the fatal lymphoma from 1-2 out of 10,000 to 4-6. So although statistically it triples your chances, numerically it isnt that alarming. I guess when I balanced this info against the possibility of getting further complications with Crohn's if untreated I decided it was worth the risk. Unfortunately I've already had one bowel resection this year and the Crohn's is back at the point of anastomosis with vengence

Having said that though, I dont want to continue on the combination of drugs if Imuran alone can do the job. I think my GI plans to give me the loading doses and then leave me on Imuran providing I get improved colonoscopy results. I just hope that this means I can return to Remicade in the future if I need to. Its a miracle drug and kind of reminds me of a 'get out of jail' card in monolopy - im scared i'll use mine too soon! haha

The main problem with me is that at the moment my Crohn's isnt symptomatic apart from bloating that can cause significant discomfort. This obviously makes me very lucky but my GI says that this wont be the case for much longer. I am intimidated by the drugs but know I have to be sensible about getting it treated. I now know from the emergency bowel resection I had that gave me the diagnosis of Crohn's that this drug came for some remain hidden. I didnt have any noticeable symptoms until 2 weeks before my op when I had excruiating pain in my abdomen and a massive loss of appetite. I feel so sorry for people who battle with painful symptoms on a daily basis and hope to avoid having them in the near future. Its so weird how this disease can affect everybody so differently.

I also thought about how just living can be a risk - crime, car accidents, natural disasters, other illnesses etc. If we looked at the statistics of risk that involved day to day living then we would never leave our front door. But I guess we leave out front door every day because the benefits of living make it worth it I know its all abit philosophical but I took this mindset when I made the decision. I know how painful this disease can be by looking at others on this forum. The chance of improving my Crohns and avoiding further operations in the near future have made me want to take the risk.

But I love coming on here and asking questions! Its a lovely community of knowledgeable people.

Many thanks! xx

 

[davidr]

It's good to see that you're doing your own research!
I hope the Imuran alone is enough to keep you in remission.
Please let us know how it it all works out for you!