Crohn's Disease Forum » General IBD Discussion » Should I start Remicade before moving to Japan or wait?


02-25-2019, 05:34 PM   #1
Spanker
 
Join Date: Feb 2019
Location: Porto, Portugal
Should I start Remicade before moving to Japan or wait?

Hi everyone,

I'm from Europe/Portugal and I'm new to this forum but I have been diagnosed with Crohn's in 2011.

To quickly sum up my history:

- In 2011, start getting pains in some areas but keep taking medication for gases and similar for 1 or 2 months since it was the doctor's first guess.

- Go to the hospital and I have some fistulas and abscesses which result on me staying in the hospital for 1 month taking some sort of antibiotic infusions and eating limited, for 2 months including the time in the hospital, to specific liquid yogurts that would give me the minimum amount of nutrients.

- After that was put on Imuran and then changed to Azafalk which is what I'm currently doing.

- Up until now only had a fairly small issue. For some reason it seems that when I started cycling on a stationary bike it triggered something on my rectum and I started having trouble passing stool. I got a colonoscopy and that problem went away after some medication.


Thankfully nothing major up until now. But even though I felt perfectly fine, a few months ago my blood tests revealed that my iron levels seemed to have dropped quite a bit which could be a sign of infection so I got a few infusions and a CAT scan which showed some inflammation.

Since my iron levels dropped, my doctor has recommended me to start on the remicade treatment.

Which was a surprise since I feel completely fine and have been that way for the last few years but I understand that it might be a prevention to start instead of waiting for my levels to drop.

Finally the point of this thread:

I will be moving to Japan in January 2020 for a year or more which makes me really worried since from what he told me and what I've read it's not something I can stop for a while and go back to it.

So if I wanted to start here and continue in Japan I would have to make sure I could get those infusions in a 8 week period or less when I arrive in Japan.

My concern is that not only it's a new country where I can't speak the language but also how much time would it take for me to be able to get those infusions there.

From my point of view I have these options:

- Start the treatment and continue the treatment there. (Might be really complicated because of the timing for the infusions)

- Deny treatment and when I'm stable in Japan start looking for a place to start the treatment and to be followed.

- Start treatment and come back to my country for the infusion if I can't get it there in time ( This one is troublesome mostly money wise).

I'm more inclined to the second option since I feel perfectly fine and I would keep taking my medication as usual until I could start treatment there.

Please give me your opinion
02-25-2019, 06:10 PM   #2
Scipio
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Join Date: Oct 2015
Location: San Diego

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There is certainly no medical advantage and many possible disadvantages to delaying the start of the Remicade. January 2020 is still 10 moths away. That's a long time to delay treatment, but it's also a considerable amount of time to work out a solution. In my opinion you should start treatment now and then work hard between now and your move to Japan to find out about Japanese health care options for foreigners and identify a reliable source for the drug in Japan.
02-25-2019, 08:22 PM   #3
crohns35
 
Join Date: Apr 2014
Location: Pittsburgh, Pennsylvania
I agree with Scipio totally I would not put it off
Your Dr. Office would probably help you find a hospital or clinic to get your infusions

03-03-2019, 02:22 PM   #4
Spanker
 
Join Date: Feb 2019
Location: Porto, Portugal
I am also very hesitant in starting Remicade which is a long term commitment in various aspects.

It's hard to accept this especially because I have been fine with azathioprine and no new pains or similar have appeared that would help me justify the change of treatment.
03-03-2019, 08:05 PM   #5
crohns35
 
Join Date: Apr 2014
Location: Pittsburgh, Pennsylvania
You have time to get a second opinion that's what I would do if I didn't agree with this doctor

03-09-2019, 07:33 PM   #6
Lady Organic
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I am on Humira and the customer care is incredible. I bet its the same with Remicade. These expensive medication come with very good services and cares. Nothing like any other medication I have taken in the past. Taking this expensive type of medication is a new experience for a patient. If your doctor cant give you the answers right now as how this situation would be handled, you could call the Remicade care center and explain your situation to a representative. I am sure they would know how to make it work for you and so you could start the medication very soon and continue treatment in Japan for a year. these pharma companies really want to have us as patients and they are really willing to accommodate us in many different ways.
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''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: Humira
Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only, Vitamin D + B12 shots
Past meds: prednisone 50mg, 5-ASA (pill, rectal), cortifoam, cortenema, Imuran, Purinethol, methotrexate.
03-10-2019, 11:32 AM   #7
Bufford
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Before starting Remicade, inquire what needs to be done to set up Remicade infusions in Japan so that there is no interruption to your infusion dates. If that can be worked out then start Remicade now. Otherwise if your existing treatment works then wait, because any interruption to Remicade infusions could render the treatment useless.
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