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Commonly Asked Questions

My first IVIG is coming up. How should I prepare? What should I expect?

Bring gum or mints for the taste it leaves in your mouth, a laptop to play games or watch a movie or a book if you like reading. Don’t forget a blanket to keep you warm, snacks, an Ipod and charger. Expect to sleep through most of it.

What is the difference between the methotrexate shot and the pill?

Although everyone is different, in higher doses the pill can cause too many GI problems, as well as nausea. It is also not necessarily absorbed as well as the shot. Always talk to your doctor to see if you are a good candidate for the shot.

What helps with the metal taste in the mouth that comes with solu medrol?

Really strong mint gum, grape juice and other candies. Water tends to make it worst.

At what level of prednisone are there little to no side effects?

Once you are down to 5mg, you will likely not experience side effects from the drug.

I forgot to take my methotrexate, is it OK a day late?

Not suggested but not a huge problem. Try and take it every week on the same day, but if you are off by a day, you will be fine! (best to ask your own  doctor it this is OK)

Hats and sunscreen

Yes they are worth it! Set an alarm twice everyday for applying and reapplying sunscreen.

Invest in some cute hats for sunny days. Using sunscreen will not only help prevent sunburn; it will help you stay clear of other skin diseases in the future.

Teen with CameraIf I can't be as physical as other non JM teenagers, what other activities do teenagers with JM pursue?

There are SO many other activities that you can participate in if you are too weak. You may not be able to do sports, but that does not mean you can’t cheer the team on from the side or try to get involved in other ways. See if there is an opportunity for a team manager. Some sports also don’t require as much physical strength and are easier for kids who are still fairly sick.

There are so many artistic activities that are not only fun but extremely therapeutic. Painting and drawing can even be done from your bed. Horses are also great for kids like us because they build core strength and you are able to let the horse do a lot of the work. I found that many people who ride horses are very caring people also.

Tips for Teens