Advice For Taking A Long Trip With Copaxone

Question

For the past year (since long before my diagnosis), my best friend and I have been planning a trip to Spain to do a pilgrimage called the Camino De Santiago, which is a 480 mile walk that takes 30 to 40 days to complete. Thousands upon thousands of people complete the pilgrimage every year, and we are in our mid-30's and have been looking forward to meeting people from around the world and having a great time during the trip.

A couple weeks ago, I was diagnosed with RRMS. It was pretty out of the blue for me, but I'm going to start Copaxone to try to reduce the progression of symptoms. My symptoms up to know have been mostly sensory, with a small amount of leg weakness, but nothing that would hinder me from making the pilgrimage. I need to figure out how to travel with the meds. I have reviewed the Shared Solutions website and understand the procedures for flying with Copaxone, but I still have to figure out how to pack it for the walk, and I also know I will need to take a sharps waste container to store my used syringes until I get back home.

Does anyone have any ideas for traveling with a large quantity of Copaxone? I read on the Shared Solutions site that the drug should be refrigerated, but can be kept at room temperature for up to 30 days. I know I might need to try to make arrangements to pick some up in Spain since I will need a 40-day supply in order to stay on it for the entire trip. Alternatively, I might need to go off it for a period during the trip if I can only take a 30-days supply. If anyone has any experience with making a trip like this while on Copaxone or a similar DMD, I would love to hear your advice. Thanks :)

Lulu54 · Accepted Answer

Good for you to not let this deter your plans.  A 40 day walk and all those miles is a significant undertaking.  If I'm figuring your distance and timing, the pace should be doable, but you might encounter difficulties along the way.

I just did a google of this and got suc ked into looking at the photos of this beautiful route.  What an impressive goal to have set and obviously needs advance planning, whether you have MS or not.

Please have a serious discussion with your MS nurse - they will have more time to talk this over  with you than the neruo - and review all the options.  They can advise you about copaxone dosage.  Have you also considered climate conditions for this trek?  Heat is the enemy of most of us and fatigue can set in pretty quick under the wrong conditions.  A bit of advance planning can help you understand and compensate for that possible problem.

Should you encounter medical problems while on this pilgrimage you would need to supply some contact information for your doctors.  Be sure you get all the information, including your list of meds, to carry with you. You might consider putting this on a small usb drive that can go into a computer - you can even put a copy of your passport and other essential information on this and carry it in one small item.

You don't mention much disability, but do yourself a big favor and plan on using a walking stick.  Even able-bodied hikers use them to stabilize their steps.  

Most of all, be sure to take lots of pictures.  This is going to be quite the experience for you and your friend and so much to take in you can't possible remember it all.  A small notebook to note dates and locations will also come in handy.

But please, do consult your medical team and have them help you finalize the medical details for this wonderful trip.

be well,
Lulu

rendean · Answer

One  other suggestion to Lu 's great advice , is to carry an extra copy of your prescription signed by your MD so that in case something happens to the meds you take, they can be replaced with less hassle. I know one of other travelers does this.

An alternate sharps container can be a sturdy sided water bottle or sports drinks which are a little thicker.


I'll have to go look up this pilgrimage, it sounds fantastic.

Enjoy!

Ren

Lulu54 · Answer

Be sure to call SS and let them know your travel plans.  They have hard sided cases for the syringes that protects them fairly well.  Also, SS had been handing out these little tools that cut the needle off the syringe, letting you throw away the body.  

If you can't get it from SS, you can buy  this at

http://www.amazon.com/Bd-Needle-Clipping-Device-Packages/dp/B001IKKHYA

JaneK1975 · Answer

Lulu: 

Thank you for all the brilliant advice. We have planned our trip for May-June, which is a season with pretty mild weather (we have never been hot weather people anyways). Pictures will be plentiful.

Using a walking stick on the Camino De Santiago is a tradition, so I would have taken one anyways. Now that I have this diagnosis, I am looking forward to buying an awesome walking stick for the trip and keeping it for the rest of my life.  If I need it in the future to help me with MS symptoms, I can carry it along with wonderful memories (and great stories to distract people who ask me about it).

Love the USB idea, and thank you SO MUCH for advising me to let my neuro know about my plans and take doctor's info with me on the trip. I'm so new to this, I honestly might not have thought to do those things. Your comments made me think of a question about MS nurses, but in the interest of clarity and simplicity, I'm going to post it on another thread (after searching past threads for the answer, of course).

I really appreciate your help. Thank you for taking the time to write to me.

Hugs,
J

Advice For Taking A Long Trip With Copaxone

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