I have had PMR for 5 years and was diagnosed with GCA in September of 2023. I presently am on 4mg of prednisone. I am feeling good and continue to be pretty active and just turned 70 year old. I walk at least 3 miles a day, bike long distances and kayak.
I plan on taking a hike up to 10,000 feet next week and concerned how this might affect my GCA. I have a friend who lost the vision in one eye due to an unusual situation (not GCA) that limited the blood flow to his optic nerve, leaving him permanently blind in that eye. He has been advised not to go to high elevations due to the pressure it may create on his good optic nerve. (He can fly if the cabin is pressurized)
Since GCA also limits blood flow to the optic nerve, I am a bit concerned. Does anyone have any thoughts on this or am I just over thinking this whole thing?
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Mooreby
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I went to 8,400 ft 2 months ago, just for 2 hours. I took a tram from sea level to that height and I would be hiking from there another 2,000 ft. Maybe I should consult my Rheumy and my ophthalmologist. I don't have a whole lot of faith in with of them though. I have a lot more faith on your professional opinions.🙂
As someone who had GCA , not sure I would have attempted that at less than a year after diagnosis.
Mind you as I had lost the sight in one eye due to late diagnosis of disease, I was very precious of the other one at that time -am a bit more laissez-faire about things 12 years on 😊
We aren't professionals - we are a patient-led forum although both of us have many years of experience of patients with PMR/GCA, their experiences and problems.
I actually have far more concern about how you would cope physically with both potential ongoing GCA, which is a serious systemic illness, and having been on longterm pred, albeit at a low dose but that introduces the spectre of adrenal insufficiency. Had you regularly been hiking at high altitude I'd be less concerned.
Where are you going to be? What are the emergency services like there for retrieval should you be unlucky and taken ill? I live in the mountains, almost daily in tourist season a helicopter is called out to rescue someone - and very often it is a 70+ year old who recently arrived from sea level and went up to 2000m/6500ft for a walk. I think most people are unaware of the difference living at low altitude and expect to be able to exert themselves at altitude without acclimitisation - which can take up to 3 weeks. If you live at above 1800m/6000ft, then maybe you wouldn't have any problems - but do you?
I am sorry that I used the term "professionals" but I meant it as a group who is experienced and dedicated to the area. I greatly value the opinion more than the ones with the credentials bc of personal experience and the hundreds of people on this board that share.
I am presently awaiting feedback from my Rheumatologist and Ophthalmologist professionals. Neither could give me immediate feedback. My guess is that they are both busy and they need to do some research themselves so it might take them some time to get back to me.
I want to thank you for your immediate feed back to my question. It did give me pause that I should not be so laissez faire about the hike and that there is need to be concerned about it. I do live at sea level and I will suddenly be at 8,400 ft and then use physical exertion to summit at another 2,000 ft.
I have always wanted to live my life to the fullest and that included living to the max of physical limits. Not being able to do this elevation hike is indeed a blow to my psyche. That I must accept my limits and not do what others do without the disease. I gave up marathon running with the onset of PMR and now with GCA the elevation hiking. It just makes me extremely sad.
I can take the pain of PMR if I have a flare, but I can't take the chance with GCA and my eye site.
I think we probably guessed what you meant - our ‘professionalism’ rather than as professionals.. and no you cannot risk your sight with GCA… but hopefully once through it, and you are still fit enough there will be another opportunity to make the trip.
I did realise what you meant - but there are people now and again who get quite aggressive and accuse us of misleading members,
I'm sorry you feel so disappointed - I do know the feeling because I had to give up my mountains because I just wasn't up to it and it poses a risk to others in some way or another. I would hate to think you got part way and it was simply too much and it made you ill.
If you aren’t sure then you need to check with your rheumatologist.
If your GCA is well controlled.. and sounds as if it is, then the ophthalmic artery/optic nerve should be working okay.
A study done in 2017 looking at seasonal influences in cases of GCA also covered latitude and altitude differences - this excerpt relates - but of course it covers people who reside at a higher altitude anyway… not those that may just ‘visit’ temporarily-
The potential role of altitude as a geographical factor has also been implicated in the incidence of GCA. Nevertheless, a Spanish study assessing altitude at the site of residence of 210 patients with GCA within the Lugo region revealed no difference in disease incidence related to this variable, nor did it account for relapse rates.
I think so too - which was partly why I asked when they last went that high. Great difference in the whole situation if you are regularly at that altitude.
The air pressure at 10,000 feet is about 30% lower than at sea level, and 5% lower than the cabin pressure in an airliner. You'll be hiking, so your heart and lungs will have to work significantly harder to maintain adequate oxygen levels in the blood. The first sign of problems (for those without vasculitis) is usually getting out of breath during the climb, followed by a headache. A friend of mine developed symptoms at just 11,700 feet on Mount Teide, despite taking the cable car to the top! He recovered from his 'altitude sickness' as soon as he began the descent. No-one knows how your injured tissues will respond to the challenge. The only thing for certain is that you should have a plan to turn back at the first sign of symptoms. Pressing on until visual disturbances appear might be too late.
I was just visiting Rocky Mountain National Park last week at about the 11000ft. I have GCA, I am on 15mg of hydrocortisone and Actemra. I am walking 2-4 miles daily. We drove up and walked around, I felt fine but was easily out of breath. I just took it slow and easy, it was so beautiful.
Two days later took a four mile hike at about half the elevation, I was out of breath easily but took it slow, stopped a little more but finished it And was happy I did. Other than the shortness of breath it was great no other issues.
No! We drove to highest point and walked around, I did feel shortness of breath, nothing terrible but I wasn’t climbing.
The hike was couple miles there and back pretty steady incline but we were only about at 5500 ft. I was tired and short of breath, just went slow and rested often. I was glad I did that with my Grandson who was so patient
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