PMR and travel

Posted by jodev68 @jodev68, 6 days ago

I am wondering if anyone has traveled outside the country while tapering? If so, would like any travel recommendations. Thank you.

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Hello @jodev68, My PMR is in remission but when it was active I didn't do any long distance traveling. There is another similar discussion that you might want to join to learn what others have shared:
-- Traveling with PMR: https://connect.mayoclinic.org/discussion/traveling-with-pmr/

I'm not sure but I think @dadcue has mentioned traveling outside of the country and may have some travel related suggestions when you have PMR.

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It depends if your concern is more about running out of prednisone while traveling or having a PMR flare while traveling.

Another concern is being immunosuppressed while being treated with prednisone. You might want to take Covid precautions but you can't protect yourself from all infections.

Travelling outside the country isn't advisable. Just don't let your doctor document that it is "against medical advise" because that might void any travel insurance that you might be able to get.

I have had flares, infections and no Prednisone while traveling. None of those situations were good but sometimes travel outside the country is important. My rheumatolgist now prescribes "Prednisone as needed" when I travel but I haven't needed any Prednisone in more than 4 years. I just do my monthly Actemra infusion before I leave and return home in less than 4 weeks to get my next Actemra infusion.

I have a TransPacific cruise to Sydney, Australia coming up in October. No reason to go there except I have never done a TransPacific cruise or been to Australia. I have never crossed the Equator so I also get to see what the southern hemisphere is like.

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I did travel to Europe for 2 weeks while tapering this spring. I was a little concerned, mostly that I would otherwise get sick since flu and other respiratory illnesses were circulating at the time. 1 week was for work and the other for fun so I came across many different people in the 3 countries I visited. Here are some things I did that made me feel better and more prepared. 1) I made sure I was up to date on vaccines. 2) I had bloodwork done and visited my doc a week before traveling to make sure I had a clean bill of health. 3) I had my doc prophylactically prescribe tamiflu and paxlovid just in case I got flu and covid. 4) I timed my tapering so that I was stable on my current dose for 2-3 weeks before leaving and didn’t change my dose while gone. 5) I brought enough prednisone for 3 extra weeks in case something happened. 6) I told my wife the dosage I was taking in case of emergency. 7) I timed my first day dosages in Europe so that I didn’t go more than 24 hrs since taking prednisone the day before. 8) I kept my prednisone on me, not in a checked bag. 9) I took a daytime flight to Europe so I wouldn't be exhausted and lower my immune system. 10) I chose flight seats in the aisle and turned air on as high as it would go to minimize airborne particles from people coughing. I wish you the best of luck. My time out of the country was liberating and reassuring to know I wasn’t tied down by PMR but that I took reasonable precautions to feel good.

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@johnbishop

Hello @jodev68, My PMR is in remission but when it was active I didn't do any long distance traveling. There is another similar discussion that you might want to join to learn what others have shared:
-- Traveling with PMR: https://connect.mayoclinic.org/discussion/traveling-with-pmr/

I'm not sure but I think @dadcue has mentioned traveling outside of the country and may have some travel related suggestions when you have PMR.

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Thank you so much @johnbishop.

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@brian326

I did travel to Europe for 2 weeks while tapering this spring. I was a little concerned, mostly that I would otherwise get sick since flu and other respiratory illnesses were circulating at the time. 1 week was for work and the other for fun so I came across many different people in the 3 countries I visited. Here are some things I did that made me feel better and more prepared. 1) I made sure I was up to date on vaccines. 2) I had bloodwork done and visited my doc a week before traveling to make sure I had a clean bill of health. 3) I had my doc prophylactically prescribe tamiflu and paxlovid just in case I got flu and covid. 4) I timed my tapering so that I was stable on my current dose for 2-3 weeks before leaving and didn’t change my dose while gone. 5) I brought enough prednisone for 3 extra weeks in case something happened. 6) I told my wife the dosage I was taking in case of emergency. 7) I timed my first day dosages in Europe so that I didn’t go more than 24 hrs since taking prednisone the day before. 8) I kept my prednisone on me, not in a checked bag. 9) I took a daytime flight to Europe so I wouldn't be exhausted and lower my immune system. 10) I chose flight seats in the aisle and turned air on as high as it would go to minimize airborne particles from people coughing. I wish you the best of luck. My time out of the country was liberating and reassuring to know I wasn’t tied down by PMR but that I took reasonable precautions to feel good.

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What great advice! I hadn’t thought of being prepared like this for travel!

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I did two trip to Europe while tappering. My only concern was could I keep up with my wife as we typically walk 10-15 miles per day on vacation. No issues other that I had a few episodes with flares after eating the wrong foods. Also found that a good sauna session did wonders for PMR/pred tapering pain.

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@johnbishop

Hello @jodev68, My PMR is in remission but when it was active I didn't do any long distance traveling. There is another similar discussion that you might want to join to learn what others have shared:
-- Traveling with PMR: https://connect.mayoclinic.org/discussion/traveling-with-pmr/

I'm not sure but I think @dadcue has mentioned traveling outside of the country and may have some travel related suggestions when you have PMR.

Jump to this post

I have. Just very careful to take extra med just in case they are needed.

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I did not leave the country, but I spent 6 weeks visiting friends and family in another part of the US last year. I will not be taking any travel of that length anytime soon. Here's why. While I was there, I noticed some jaw pain. In communication with my rheumatologist, she was worried about GCA. We tried to get testing done where I was and we were not able to. Because GCA is such a serious condition, she put me back up to 20 mg of Prednisone. When I got home I had the testing done and I didn't have any GCA after all. It has taken me 9 months to get back to where I was before my trip. In retrospect, my trip at that time was not worth the setback. But obviously everyone needs to make their own decision.

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@brian326

I did travel to Europe for 2 weeks while tapering this spring. I was a little concerned, mostly that I would otherwise get sick since flu and other respiratory illnesses were circulating at the time. 1 week was for work and the other for fun so I came across many different people in the 3 countries I visited. Here are some things I did that made me feel better and more prepared. 1) I made sure I was up to date on vaccines. 2) I had bloodwork done and visited my doc a week before traveling to make sure I had a clean bill of health. 3) I had my doc prophylactically prescribe tamiflu and paxlovid just in case I got flu and covid. 4) I timed my tapering so that I was stable on my current dose for 2-3 weeks before leaving and didn’t change my dose while gone. 5) I brought enough prednisone for 3 extra weeks in case something happened. 6) I told my wife the dosage I was taking in case of emergency. 7) I timed my first day dosages in Europe so that I didn’t go more than 24 hrs since taking prednisone the day before. 8) I kept my prednisone on me, not in a checked bag. 9) I took a daytime flight to Europe so I wouldn't be exhausted and lower my immune system. 10) I chose flight seats in the aisle and turned air on as high as it would go to minimize airborne particles from people coughing. I wish you the best of luck. My time out of the country was liberating and reassuring to know I wasn’t tied down by PMR but that I took reasonable precautions to feel good.

Jump to this post

"My time out of the country was liberating and reassuring to know I wasn’t tied down by PMR but that I took reasonable precautions to feel good."
---------------
I like your spirit! Prednisone and PMR took control of my life for the longest time. It has been liberating to take back some control of my own life.

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@dadcue

It depends if your concern is more about running out of prednisone while traveling or having a PMR flare while traveling.

Another concern is being immunosuppressed while being treated with prednisone. You might want to take Covid precautions but you can't protect yourself from all infections.

Travelling outside the country isn't advisable. Just don't let your doctor document that it is "against medical advise" because that might void any travel insurance that you might be able to get.

I have had flares, infections and no Prednisone while traveling. None of those situations were good but sometimes travel outside the country is important. My rheumatolgist now prescribes "Prednisone as needed" when I travel but I haven't needed any Prednisone in more than 4 years. I just do my monthly Actemra infusion before I leave and return home in less than 4 weeks to get my next Actemra infusion.

I have a TransPacific cruise to Sydney, Australia coming up in October. No reason to go there except I have never done a TransPacific cruise or been to Australia. I have never crossed the Equator so I also get to see what the southern hemisphere is like.

Jump to this post

Thank you for your helpful information @dadcue. I’m concerned with having a flare up. My doctor cleared me to travel. If there is an increase in pain he recommended that I increase the prednisone.

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