Traveling with PMR

GCA PMR
Anyone had any issues with flying?

@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?

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

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.

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.

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

I have PMR and I am doing pretty good. I started Methylprednisolone in early December at 16mg/day (4 mg of Methypred = 5 mg prednisone). After 30 days my dose tappered to 12mg Methylpred. It is now about 3 weeks since I am on the lower dose and I am still doing pretty good but when I wake up in the AM, I can feel PMR symptoms, mostly in the upper arms, shoulders & neck. The symptoms go away completely within a couple of hours.
I have a trip booked for Switzerland on May 28th. I buy travel insurance but it will not cover PMR if I have a problem before or on this trip. PMR is now a pre-existing condition for me. My full payment is due Feb 27th. I cancelled a trip I planned last December because that is when the PMR developed. I received a full refund. That would not be the case if I get any bad surprises like GCA before or during my May trip to Switzerland. Has anybody travelled while medicating for PMR?

"Has anybody travelled while medicating for PMR?"
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Yes ... I took a trip to Europe but I took along plenty of extra prednisone. It was my excuse to take more prednisone and my rheumatologist agreed. I was a bit melodramatic and told my rheumatologist that they would have to carry me off the plane. I was convinced that I would be very stiff and in excruciating pain after the 8 hour flight to Europe.

I don't know if PMR was the problem or adrenal insufficiency. I find trips of this nature to be very stressful. I took extra prednisone and did fine on my trip.

I'm doing a month long trip away from home right now. Technically I still have PMR except it isn't treated with prednisone anymore. My rheumatologist writes a prescription for prednisone as needed when I do these trips in January. I go somewhere warm which has some benefits for me.

Hello @aisp3b,

I combined your discussion with an existing discussion of the same title:

"Traveling with PMR"
- https://connect.mayoclinic.org/discussion/traveling-with-pmr/

Here you will meet members @dadcue, @kmb181, @johnbishop and @kmeikle1 who may be able to share their more recent travel experiences with you.

I've had PMR for a little over a year, and am currently on a 6 week warmth seeking trip to the south to visit family and also see if the warmth helped the PMR. I won't likely try something like this again even though the warmth has been beneficial. I had tapered down to 20 mg of pred before the trip but had to go all the way back to 20 (on rheumy advice) due to a concern about GCA and that is very disheartening. I did what I could to make the trip manageable, including purchase of a Lab Cushion seat for the long plane ride and a Rx for a low dose anti-anxiety med some travel is always stressful. Both of these things helped but not enough. I found finding medical help difficult while on the road and I had to spend several days in recovery mode on several days for various reasons.
That being said - this is only my experience and I'm weighing my own costs / benefits. I love my home and friends and the setback wasn't worth it. But I'm a little high strung anyway so the trip set me up for trouble. And I haven't been dealing with PMR for years and years, so I wish I'd just been more patient.
I hope this is helpful.