What if you develop sudden GCA symptoms and are not near a hospital?

How do we know we dont have GCA, this is a problem John (my hubby) and i fall out about, he says we will have to stop going on holiday as if i need a hospital mwhen on holiday and there are none what do we do, also if i cannot do our walks each day whats the point on going away, i said we need our holidays and we have to arrange them around my illness, hmmmp he said. I only carry 5mg pred as you say i would need to swallow a lot if i lost my vision.

As i do get pain and earache in my temple does this mean i might have GCA, as when i was checked out at the hospital on Tuesday the consultant who checked me over said as there was no clarification in jaw, no vision loss, i did not have it, not to worry and i could go home,my husband worry i think is that we go were the hospital could be 50 miles away. But like i said, who can say when any illness strikes. hope this makes sense brain not good so early in the morning.Have a good day youself

I guess its all about risk. I'm unlikely to jump off a tall building with a parachute, I am likely to plan a couple of weeks to a month crossing a desert next year, I'd get restless if I was at home.

The risk free approach is to stay at home. The risky approach is jumping off tall building. For me Goldilocks is out in the desert.

Risk is likelihood and consequences. Apparently about 10% of those with PMR have GCA. Which makes 90% that don't. Likelihood is on the low side. Consequences can of course be devastating.

Its also apparently about the same likelihood I have of a heart attack. And just guessing, similar to the likelihood of either you or hubby having a heart attack.

I'm concerned, but not anxious. I'm aware, not worried. Worrying isn't going to change the outcome and in the meantime makes life worse. If it happens I'll know where the nearest hospital is and how to get there. It may be several days drive away. I'll have my pred ready. I'll have my communications. I'll be with other people.

Just me, I see a balance between PMR and Pred and Activity. Not just PMR and Pred. So I do what I can. If I don't do things I'll become less fit. A downhill spiral. I'll become convinced I can't do anything. If I do things I can hopefully do more tomorrow. One step at a time. Seems to work so far.

I would look at the holiday as a goal. Something to look forward to. Build up the walking so I can enjoy it. One day at a time. Never overdoing it, but always trying. If I can only walk 25 steps today that's what I'd do. And aim for 26 steps tomorrow. By holiday time a few thousand steps.

I have to manage myself around the PMR, but I'm blowed if I'll let it take over.

Very well described, Julian. Thank you.

Those of us with PMR without GCA are on a "confidence curve,"  similar to a learning curve. For me it took 8 months to realize this " Ms. PMR's wild ride" is managable and I have some level of stability in my life. Still, now, I am aware that behind the curtain of future, there will certainly be a surprise for me.

I am a pilot of my own life. To the best of my ability, I will prepare for known emergencies and hazards through knowlege, thought and training. PMR temporarily grounded me, but as I gain confidence,and with time, I will fly again, treck in the desert again, ski the mountains again. Maybe not as fast, high or far, but with a pack of pred, I will go.

Is  Hope is a necessary ingredient for recovery?   

Nicely put. I think hope is essential. I tend to think of belief. Belief that the condition will go into remission and fade. Belief that I can do a bit more every day. I deliberately keep my cup more than half full. It becomes self fulfilling.

I had experience of previous chronic conditions. One relatively mild that I still have that comes and goes. One that was life changing. I needed rehab as I wasn't recovering physically from operation as rapidly as expected. What was obvious to me was that the staff were spending a lot of time simply coaching some fellow sufferers into believing they could do things.

As with Danrower I aquire knowledge, thought, training, understanding. That allows me to look forward with confidence. Even with previous experience it still has taken me time to be confident about what my body with PMR is telling me. But time and understanding have provided that. Its a journey.

As with Vickie and Danrower I don't bother with "can I do xxx?" I ask "how can I do xxx?". Very deliberate, all of my life. Very different outcomes.

Of course the risks and limitations and obstacles have to be considered. So they can be mitigated, reduced or removed if necessary. PMR/GCA just adds another risk and limitation. Not a show stopper. I can imagine delaying a venture but can't imagine delaying forever.

Obstacles are there to go round, under, over, through or simply reduced to rubble. They are not there to stop us.

I am certainly not one to just sit at home being scared that something would happen to me, and end up watching my life pass me by. (I'm the silly girl who rode her bicycle across the US twice despite everyone's warnings that I was going to be run over and die. lol). BUT, I do believe in being prepared, so I can go off and do my thing without being needlessly worried. I planned on taking extra prednisone with me, but just wondered if there was anything else I should be thinking about.

Knowing where the nearest specialist is? For the benefit of the local doctors. And your doctor's contact details for the same reason. 

For those of us who are fortunate enough to be able to travel, as long as we are sensitive to the do's and don'ts, it would be nice to have some general advice on what to do.  Even if there's a GP, Specialist, or hospital to get to, we're all too well aware of how unaware the medical profession can be about PMR and GCA.  Even in the most developed cities of the world people have been brushed off or given inappropriate treatment.

My own thoughts are that I would take 60 or 70 mg if I developed a headache like I've never had before, combined with significant visual symptoms, jaw pain, etc.  Then, I'd probably search the forums for direction on what to do next.  I know tapering in these situations been talked about before.  I'd just have to find it.  I'd get to a hospital or medical practitioner ASAP, but would fall back on the forums for validation of the care. 

That's fair enough - except no-one on any of the forums is medically qualified and, even if we were, we cannot SEE. Even a doctor should never express an opinion on the phone in such a situation. So you need to make sure you always have at least one dose of 60mg pred so you have time to find a doctor and/or contact your travel insurance - something that is absolutely essential when travelling away from home, as is that PMRGCA has been declared before travel.

As I said earlier - in the early stages after diagnosis of GCA I think it would be foolhardy to travel to a country where you cannot speak the language or where the healthcare system is poor. The travel alone is enough to cause a flare, particularly if it is long haul and even more so if crossing time zones. I always - even now - write off the first day after a long flight. You have to allow for that, as you have to remember that a cruise or tour will have planned excursions that may be far too much for you. One friend with PMR is able to travel with her daughter who is a cruise doctor and she planned to do the "easy option" days out - even they were far too much for her. I have had an email on behalf of someone on a Med cruise - she thought she was having a flare of GCA, what should she do. Then it is a case of getting the ship to contact the hospital at the next port of call - and pre-alerting them or emergency services to transport you to the nearest medical centre. The ship's doctor should be able to decide if it is a likely problem - but they won't have the medication for more than a day or two at the outside.

If you mean tapering after a single precautionary high dose there is no need - you can go back to where you were. If the doctors you see decide it was GCA then they will decide what is best for the taper - because you won't be able to carry the sort of amount of pred you need for more than a couple of days at the outside and they will be providing the prescription. That is part of the reason you need good insurance because in certain parts of the world you would want to be transferred to a competent centre - possibly even home - for treatment. If you have GCA you will probably feel pretty poorly - really not in holiday mood. Travel by plane might not be possible - airlines can be pretty stuffy about taking medical cases. And medical repatriation is a VERY expensive item.

One additional option is to be registered with something like MedicAlert - who provide a multi-lingual call centre with details of your entire medical history and medications. Then all you need to do is to hand over the phone number and the local doctors can contact both MedicAlert and your home doctors.

But above all, you need to think about your trip in advance and discuss it with your home doctors - is it advisable at all? Will they be available for phone consultation when you are away? Even doctors go on vacation! Often you may find that your insurance won't pay out if your doctor hasn't said there is no reason not to travel so be very clear with them.

And a warning - never depend on the forums for advice in an emergency. Even this site can go down - it was off for some time recently and no-one could access it. 

I know I sound a right moaning Minnie - but these are real considerations if you are worried enough to think about it in the first place.

Thanks Eileen.  I wear a medical alert bracelet and always have medical travel insurance.  Won't leave home without these.  I also have my emergency contacts flagged on my cell phone. My personal physician has access through my contacts to a computerized record of my prednisone history from the date of diagnosis to the current day.  I also carry all my meds on me at al times with a current year calendar of my prednisone history and list of all medications from my pharmacists.  No, I'm not OCD at all, just want to be prepared.

No - wouldn't consider you OCD at all. That is exactly how it should be. 

not silly at all ................ I'll bet there are many who warned of gremlins who wish they'd done it. I've also often been confronted with "I wish I was going too but .......".

Our daughters recently dined out on the reflected glory of their idiot parents' 3 year drive from Aus through Asia to UK (and back).

Its really a state of mind. "How can I ...?" that you first asked is to me a very different and much better question than "can I ...?".