Traveling with PMR
I am thinking about taking a cross country trip, for the first time in six years. My close cousin is getting married.
Most days my PMR pain is still high, even on 6-8mg. of Methylprednisolone. It gets a little better as the day goes on, but most days I have to push myself.
I am trying to decide between flying, or taking the train in a roomette.
Can anybody weigh in on the pros and cons of these options?
I am worried about not enjoining the trip if I’m in pain, but I have already missed out on so much in life.
Kathy
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CORRECTION: I had tapered down to 10 mg. 🙁
I’ve had PMR since 2011 and have not let it stop me traveling. All in USA and Canada. I’ve flown a have a dozen times , many long thousand plus mile car trips. Camping, hunting and fishing trips. One flare on a hunting trip, I was pretty slow that year…. I’ve seen 3 rheumatologists at Mayo Clinic and the trip there is 6 hours and never was a mention of traveling too far. During my first year a friend came to me a said he heard I had something serious. ( his wife had been fighting cancer and other ailments for some time) . I said no! I explained briefly what it was and said it cause a lot of discomfort but I will not die from it. If anything the medicine will kill me, as I was also on Methotrexate.
Thank you for your encouragement. My hesitation is that I have a trip planned for Switzerland at the end of May, 2025, and a number of years ago, my mother had GCA. It would really trouble me to get GCA while travelling. In addition my PMR is now considered a pre-existing condition and my travel insurance will not cover anything related to that.
I am on my second big trip since getting PMR in March 2024. It took doctors 2 months to diagnosis PMR. Started at 15mg prednisone and went up to 20mg. Felt pretty good tapering slowly to 12mg. First trip ok but sore after long flight to Alaska. Second trip started on December 5th with long flight to Thailand (about 20 hours). I felt better than expected at around 12mg dose. Doctor said to taper by 1mg every 3 week. At 10mg had alot of finger and hand pain and tingling.
Also neck and shoulder pain from carrying heavy day pack. I have found myself feeling better walking as much as possible and avoiding certain foods. Got case of travelers diarrhea and PMR symptoms increased. Went back to 10mg from 9mg. Feeling better but still have morning hand and wrist soreness.
Good luck to all.
Thank you for your comment. Do you increase your dose back to the previous dose every time you have a setback?
I understand your dilemma. A thought. Ask your Dr. to give you extra prednisone in case of a problem. Also I think Europe is more a tune to PMR/GCA and you could go to an ER there if you have an issue… I hope it works out for you. Whatever your decision. Be at peace with it.
Yes. I emailed my Rheumatologist and was told to go back to previous level for 3 weeks.
is a fully refundable ticket purchase an option ??
I am usung ecredits which will expire. The cost of the tour is $4500 which wil not be covered by insurance if any health issue ocurs related to PMR since it is a pre-existing condition. Most importantly, I am concerned if I got symptoms of GCA, as my mother had that and almost went blind just before being diagnosed.