Traveling with PMR

Posted by kmb181 @kmb181, Jul 31, 2022

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

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

klmint | @klmint | Jul 8 11:35am

GCA PMR
Anyone had any issues with flying?

Colleen Young, Connect Director | @colleenyoung | Jul 8 7:37pm

In reply to @klmint "GCA PMR Anyone had any issues with flying?" + (show)

@klmint, I moved your question about flying when living with Polymyalgia rheumatica (PMR) and giant cell arteritis (GCA) to this existing discussion:
- Traveling with PMR: https://connect.mayoclinic.org/discussion/traveling-with-pmr/

What concerns you about flying?

abbeyc | @abbeyc | Jul 9 7:30am

In reply to @johnbishop "Sometimes at the low doses just going up 1/2 to 1 mg can make a difference...." + (show)

For how long do you then stay on that upped dose ?

John, Volunteer Mentor | @johnbishop | Jul 9 7:41am

In reply to @abbeyc "For how long do you then stay on that upped dose ?" + (show)

I had the most trouble tapering in my first occurrence of PMR during the last six months of 3 and half years going back and forth between 1/2 mg to 1 mg until I could finally stop taking prednisone and not have significant (for me) pain.

When I had to up my dose from 1/2 mg to 1 mg, I normally stayed on it for a few days to a week before trying to go back down to 1/2. I only went up if my level of pain in the morning was a 2 or more on a scale of 0 to 10.

jabrown0407 | @jabrown0407 | Jul 9 7:50am

I have traveled and it can be difficult. Flying and car rides are both hard on me. I haven't tried the train.
My advice would be to arrived a day or more early, plan to rest, then do it. This gives you a chance to recharge yourself.
Enjoy what you can and try to rejoice in just being there to share the moment.

klmint | @klmint | Jul 9 9:18am

In reply to @colleenyoung "@klmint, I moved your question about flying when living with Polymyalgia rheumatica (PMR) and giant cell..." + (show)

i don't know if the altitude and pressure changes would affect me. potential of Heart attack stroke increase? potential of an incident affecting other passengers. just starting with a one hr flight to see if ok. my rheumatologist told me not to fly when first diagnosed (Oct/23) but i think ok now as long as he can contact any medical team if something happens when i'm away I just got out of "medical jail" in late April. so basically Can/USA only for now. thx