Traveling, going off Remicade, scared, need some advice

[magnitek]

Hi all! I was diagnosed with Crohn's when I was 14 years old. I'm 34 now, so that was 20 years ago. Last year, I had a very bad flare up, where I couldn't eat or drink for 6 weeks and ended up in the hospital weighing 130lbs (normal weight is 175 lean). For those 6 weeks, we had tried prednisone and lialda. When I got to the hospital, they put me on Remicade and 6-MP. I got better almost instantly.

However, I'm traveling to Spain for 6 months to study and I'm not sure what to do about medication. Basically, I spoke with my doctor and we discussed Humira (which I could travel with), but he doesn't want to start me on a new medication like that just before I leave. His suggestion is that we could up my 6-MP dosage, and use that solely to keep me in remission, but it's a gamble.

I'm really scared of having a flare up while I'm overseas, but I don't want this disease to keep me tied to the United States. No international health insurance seems to cover it.

Does anyone have any suggestions or experience?
Has anyone taken Remicade overseas?
Is it affordable in Spain? Does anyone know the cost?
Could 6-MP really keep me in remission?

 

[eleanor_rigby]

Personally I wouldn't go off the remicade. Where are you currently living?

 

[Lisa]

If remicade is working for you, I would try to stay on it if at all possible.

What dosing interval are you on? If you are on an 8 week schedule, is it possible to tweak your schedule so that you get an infusion just before you leave, and then travel back twice? Not sure how it would work trying to get an infusion in another country.....

 

[GI Jane]

Remicade was an amazing medication for me until I became allergic. Keep on it for sure. Can you have the medication flown over to your location. Pre scope out a clinic that would do the infusion. My husband is medically trained so he could do this since you're past the allergic part worry.

Is there finances to fly back to see family in US and do your infusion and fly back. 6 months isn't that long and my infusions were every 8 weeks after awhile so only two flights back.

Remember make this decision logically not emotionally. Make a trip book plan with a 3-ring binder. Scope out what you'd need print and put in book. Make calendar pages on when you'd need the infusions. Take care my thoughts and prayers are with you.

 

[aypues]

I did study abroad twice in Spain, before they even had Remicade!
Nowadays I am on it and I 100% would not switch if it's working.
Here's a link to learn about the healthcare system in Spain. You may be able to get it there:
http://www.expatica.com/es/healthcare/Guide-to-health-insurance-in-Spain_439814.html
What city will you be in? I can possibly get an IBD doctor referral for you there. Or if it's easier just fly home. But I know how it is, you want to be in Europe the entire 6 months doing things, not spending your traveling weekends flying home for medical care.

 

[magnitek]

Thank you all for the responses! Here's an answer to some of the questions you've asked:

1. I'm 34 years old and from the United States, and therefore not eligible for Spain's health care system.

2. My visa is a single entry visa and therefore, I may not go back to US during my study trip. If I do, I lose my visa.

3. It's happening 23-Apr, and very little time to tweak anything. It was an amazing opportunity that I have and it will not come again, dates were not adjustable.

4. I would love to have an IBD doctor referral for Barcelona who speaks English. And takes GeoBlue international insurance.

5. I'm not allowed to take Remicade across border into Spain from US. Also, my insurance company wouldn't approve it (this is something I looked into).

What I was really hoping for is if someone knows what Remicade costs out of pocket in the country of Spain. Does any know this or can find out? I may be able to pay for it. I tried calling places, but no one speaks English and I don't speak Spanish (yet, it's what I'm going to study).

Also, is there an international health insurance that covers biological treatments? I have coverage here in the states.

 

[aypues]

I have emailed my doctor's office for a referral in Barcelona. I hope they have one.
I just checked my insurance for the coverage out of the country. I have Blue Shield of CA Platinum PPO. It says they cover emergency and urgent care services...not sure Remicade would count. They have preferred international providers and have a whole website with 25 providers in Barcelona. Have you looked into what your US insurance covers while abroad?

 

[magnitek]

Thank you. I appreciate it very much.

It turns out that after my doctor's appt today, that he is taking me off Remicade anyway due to side-effects getting worse (bad skin rashes on my face and back with skin pealing). No dermatology cream is working (I also see a dermatologist).

Regardless of that though, my Insurance company in the states doesn't cover anything except emergencies. My international coverage (GeoBlue) covers anything necessary including pre-existing with the exception of biologic treatments such as Remicade or humira.

I would still love a recommendation to a doctor in Barca that speaks English and can do blood work and monitor me on 6-MP. Thanks again.

 

[aypues]

Ok, so I have a note from my doctor for you, Brigid Boland, MD:
"There's a well known IBD physician in Barcelona - Julian Panes (I do not know him personally), but he is at the Hospital Clinic Barcelona and Barna Clinic. http://fighting-ibd2016.squarespace.com/julian-panes/"

I hope this works out for you. It looks like he may speak English - the whole website is in English and there is full contact information. Let us know what happens!