I'm a bit of a worrier and no-one else to talk to, so hoping you kind folks can help put my mind at rest.
Going on holiday tomorrow for 3 weeks to Bolivia. I've taken out travel and health insurance, which is specific to the kind of travel, birdwatching in remote area so any medical emergency might need to cover rescue. It's a long story, but I am not insured for existing conditions, i.e. asthma and PMR, due to either blood tests or believe it or not, waiting for dental fillings etc, means I have been unable to take out extra cover for any of the existing conditions. I know it is not ideal, but I screwed up at the beginning.
I'm not worried about the asthma, never been hospitalised and if I were to get a chest infection that wasn't covered, I could pay for that.
I'm not even worried about the PMR being a problem, as it is controlled by pred, but if I were to get GCA while I am away and need treatment, they might use the PMR as a get out from covering the GCA treatment. My CRP and ESR have never been raised, even before I started on pred and they were still normal 2 weeks ago. I saw an opthalmologist in May and she gave me the all clear. No other signs of GCA. No blurriness or headache. I do have a bit of a funny jaw, but that has been there for decades and seems to be due to my bite.
Am I just magnifying the worry and need to get this into perspective? i.e. there is a slim risk of getting GCA, but fairly unlikely. My anxious brain is just seeing a row of rolling dollar signs spinning in front of my eyes and worrying that if the worst happened, would I be able to pay? Though I will have enough pred with me to take the max dose if necessary, if the wrost happened.
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Gimme
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Can you shop around for the additional coverage it seems like you really should have? Hubby was sick on a cruise and the bill for one visit to ship's doc was exponentially higher than our provincial medicare covered ($18 vs $800), so we were very happy to have the additional medical coverage.
Post Office Travel Insurance covers most pre-existing medical conditions. Get a quote today to see if we can cover you. If you have a serious pre-existing medical condition that Post Office Travel Insurance cannot offer cover for, the Money and Pensions Scheme (MaPS) have launched a directory listing companies that may be able to help you. The directory can be accessed by either clicking here or calling 0800 138 7777."
It's because I am awaiting treatment so that they won't insure any existing conditions. I am a bit stuck with the companies that I can use, because of the type of holiday. I won't be trekking, but some parts of the trip will be very remote, so you have to take out adventure type insurance. I know I know, who in their right mind would pick a trip like this with PMR, but I booked it long before I got sick, and I worked out that I can pick and choose some rest days from the itinerary if I need them. It is likely to be my last big trip of this kind, sadly.
Well, there's insurance, and then there's insurance. My example of our travel insurance helping with an unexpected illness aboard a ship, where the real scam was the cost of the appoinment. Or another time when we didn't have the cancellation insurance we believed we did (long story) and thereby lost $18,000 because I broke my leg two weeks before we were due to leave. It would have been even more but the insurance we actually had covered $2000. Insurance is one of those things you don't need until you do. The problem here is you should be allowed to obtain insurance, even based on the various risk assessments. You might have to pay a small additional premium, but as you can't get it at all, that's really the fault of an inflexible industry. Your chances of needing to call on an insurance payout are likely even less than what happened to my husband.
I'm no medical expert, but it took 5 months for my diagnostic of GCA/LVV to emerge from first consultation to final dx. Treatment was only started once I'd had a biopsy. I think you should be fine for 3 weeks as long as you seek medical advice asap on returning IF symptoms occur, which hopefully they won't. Enjoy Bolivia!
Thank you, I know some people on here have got sudden GCA with no warning symptoms, but when I mentioned it to my doc months back, his answer was that I would get warning signs long before, which I don't have.
It's probably me getting myself in a tizzie, as I am prone to do, pre-trip nerves, and pred doesn't help with that.
Thinking about it, I reckon I might be able to get hold of pred fairly readily without a prescription out there, if I needed it.
Sorry, I don’t quite understand the grounds for not insuring your PMR and what do you mean by “due to blood tests”? Can you explain? It may have some bearing on the plan to take high dose Pred when out there, if needed.
Sorry if I didn't explain very well. It's become a bit of a saga. It was me trying to be succinct. I booked the holiday this time last year before I was told I had PMR. I had had bloods taken and so when I called the insurance company to add on existing conditions, which are not covered by the standard insurance, the insurance company would not insure me for any of the existing conditions because I had blood tests outstanding. I probably should have cancelled the trip there and then, but I didn't. Since then, I have been in a position that I have had tests of one sort or another outstanding, so still could not get insurance to cover the asthma or PMR. When all the tests were done and I tried again to take out the extra insurance, I started getting trouble with my teeth. Another ongoing saga with several teeth needing root canal, filling, crowns etc which has been ongoing for months and the insurance company will still not insure the PMR or asthma while the dental work is ongoing. I thought it was just a bum insurance company, but all the other companies ask the same questions, so it must be to do with the way health insurance rules work.
My concern is that if the PMR is not insured and I were unlucky enough to get GCA whilst I was away, they might say that the GCA is also not insured because I am more likely to get it if I already have PMR because they consider it to be a related illness. I already know that if I am not insured for the asthma, they will not cough up if I get anything respiratory related while I am away and I think the PMR/GCA scenario would apply in the same way.
That is the long explanation of why I am not insured that I was trying to avoid. The upshot is that I would not be insured for GCA treatment if I were to get it while I am away, so if the worst happened, I could be faced with an enormous medical bill. I don't know if it is me catastrophising, since at the moment, I have no reason to believe that I have GCA and the chances of me suddenly getting GCA some time in the next 3 weeks are so small, considering that I have no signs of it anyway that I should just stop worrying about it something that most likely not happen.
Maybe probably makes it more confusing. My question is about the likelihood of getting GCA, not the insurance. I can't insure myself against PMR/GCA as things stand.
My question is about the likelihood of getting GCA, not the insurance.
There always a possibility once you have PMR of getting GCA…. some studies state between 16–21% of patients with PMR may develop GCA….particularly if left untreated.
Take plenty of Pred with you just in case required, but don’t get paranoid about it….just be mindful of any symptoms… and enjoy yourself.
Oh dear, yes, I had a similar issue while waiting for a dermatitis referral which wiped everything else pre-existing too. It is tough when you are having to chase the rainbow pot of outstanding results. I think it is a racket.
To be honest, nobody can tell you what your risk is as an individual. On the plus side you have enough Pred to cope, you know what you’re looking for and it is only 3 weeks. If it were me, I’d also be wearing an FFP3 mask while in transit to Bolivia to try not to get any respiratory infections including Covid which might not show themselves for a few days after you have landed.
When you are back with lots of photos, if you have any money left, get those teeth sorted! It doesn’t do to have pockets of infection/inflammation with a frisky immune system.
Am guessing they didn’t insure at the time because with outstanding blood work they figured diagnosis was not confirmed and you could’ve had something horrible (or from their perspective expensive!). I would think that situation is changed now that you have confirmed diagnosis and all blood work done. Is there a way to push back on the insurance company?
Sorry if I am not making much sense. I'm not thinking very clearly. I think I've managed to convince mysef that I am going to get sick while I am away.
Yes, you are absolutely right. I've been in headless chicken mode today and dealing with last minute emergencies. Not least, the boiler springing a leak, so I got a bit overwhelmed.
You are making sense, it’s the insurance companies that are not making sense. I travel to Australia often because of family living there. I have never been asked about pending dental work. I have PMR and GCA/LVV and always carry an emergency supply of Prednisalone. I think our insurance is fairly generic although they know about my principal conditions. I think I would be more worried about toothache to be honest, particularly in view of your eye examination in May. I am reassured by mine every 6 months. It would be a shame to cancel such a beautiful sounding experience but that is your stark choice. I agree that GCA suddenly appearing is unlikely and that you have possibly got into a state that a lot of us are familiar with. The choice has to be yours. Can your dentist help at all?
I think the issue may be because Gimme’s trip is a specialist journey… I.e. a bird watching trip off the beaten track which may involve helicopter rescue…. not quite a bulk standard holiday.
Glad I live where I do - our insurances cover for pre-existing conditions provided a doctor cleared you as fit to travel before going. I used to panic like mad in the early days of OH having his shopping list of conditions until it sank in , as long as he was fit when we travelled, we were covered. Never do understand UK cover - or lack of it. But I do pay quite a hefty premium compared with the UK.
The dental stuff is fine and the least of my worries. It has all been made comfortable, for the cosmetic work to be finished off when I get back. And the dentist gave me antibiotics to use in case of emergency. I don't have any active infection that I am aware of. Over the last 3 months, several of my teeth started to crumble, and it happened sequentially, got one fixed and then another. Flipping nuisance, more than anything.
Thanks for comments. I've calmed down a bit now. I have all my stuff ready and had a glass of wine, so thinking more sensibly.
Most likely, I will be fine, and I counted my pred stash and I reckon I have enough to do 7 days at 60 mg. At no time, will I be more than 4-5 days from a major city. If I did need to fly home because of illness, I could afford a flight. I know exactly what to look for in case of GCA, thanks to the lovely opthalmologist and what to do with the pred. So I have given myself a stiff talking to and I am going to stop scaring myself.
Thankyou. ha yes, now that I am unwinding, I am starting to get excited. I'll put some photos in our gardening group on facebook when I get back. Fingers crossed that I will get to see condor.
Well, I am mindful that someone asked previously about the effects of altitude on PMR and pred. Since I will be sleeping at 11-12,000 ft for a few days and spending some daytimes above that height, I should be in a good position to report back. I'm sure I'll get through, one way or another. I fully recognise that I won't be able to be quite so gung ho as I might have been in days when I was younger and fitter, and I have plans for getting more rest than I might have taken in the past. I have quite a lot of experience at high altitude. The thin air affects everyone, regardless of fitness, unless you are acclimatised, so it may turn out to be to my advantage.
Another tip. If your body is not used to high altitudes, you might want to ask the tour guide about oxygen tank avail. I mention because I have had wretched altitude sickness.
I'm not expecting to have problems at 12k. We do an internal flight to 8.5k and then spend 2 or 3 days driving up, to give time to acclimatise. I've spent a fair amount of time at high altitude in the past and I reckon I will be OK. The mistake that a lot of people make when they are not used to is in not drinking enough and not taking enough rest. You also have to move much more slowly until you have acclimatised.
Glad to hear you’ve calmed down and let the excitement creep in. Your trip sounds fascinating, and I commend you on your adventurous spirit. You have the extra pred and are armed with the knowledge of GCA symptoms. Enjoy your trip and can’t wait to hear about it when you return.
It is so inspirational to learn that folks with our conditions are still able to explore and participate in life (however that may look).
Thank you. tbh, I might have bitten off a bit more than I can chew this time. 🤣 I really don't know how well I will manage the full itinerary, although I increased my pred by 1mg a week ago to make sure that I get through and I do feel a lot better for it. I will take time out to rest if it gets too much for me and I am also going out 2 days early before the tour starts officially to recover from the jet lag. Our guide has been told that I have some issues with fatigue, so I am sure that I will be well looked after. I have travelled with him before when I went to Peru, so I know him already.
As a fellow adventurer..this trip sounds amazing..I am envious! Please, really try not to worry..the odds are quite against it, I'd say. You have the pred and know what to do , that is how I'd look at it. Have the time of your life!
Sounds like a wonderful adventure ahead of you, and I hope all goes well! I was just diagnosed with GCA after a year of PMR. This summer I took a six week dream trip to an art school in Provence France. It was a dream come true and I had a wonderful time and I have no regrets! I do regret being talked into an Alaskan cruise by my favorite aunt and cousin after I got back. That was not a smart move. I got Covid on the cruise and I do wonder if that’s what triggered the GCA. So I agree with one of the commenters above that you should be extra cautious about protecting yourself while traveling (mask, hand sanitizer, etc.) and if I may advise one more thing, based on experience: be extra proactive about rest and pacing yourself; error on the side of caution in that regard.
All that said, I hope you have a fabulous time and come back healthier than when you left!
I have a few medical issues I had to give to travel insurance companies, & was refused by many! I tried over 40 (who knew there were that many!) I didn’t want to travel without full cover. A chest infection can easily lead to hospitalisation…I’ve been there! I found two companies who had reasonable cost & who would cover it all. I think your insurance company is being difficult, I really do! I’m waiting for root canal work, too. The two that worked for me were Medical Insurance Compared, which gave me a few options (each one with full cover), & Forces Solutions (but they didn’t ask about my time in the Royal Navy at all, so think it’s open to all)! Why not try another insurance company & switch? Travel without the burden of ‘hospital worry & money’? Just a thought! I have polymyalgia, fibromyalgia, sciatica, trochanteric bursitus, high blood pressure, familial high cholesterol, hypermobility, osteoarthritis, essential tremor, spinal tumour (benign), Orthostatic (wrong word, I think, only diagnosed last week) hypotension, & sorry, can’t think of other 2, too many to remember!! S x
If I were in your situation I’d think, ‘well, there’s an outside chance I may get GCA. BUT, it’s more likely I won’t.’ If we lived daily by worst case scenarios, we’d never set foot outside the door. Try to put the issue to one side; you’re not going away for months, it’s a holiday in an amazing part of the world with opportunities to do incredible trips and sightseeing. Do what you feel up to doing and most importantly, enjoy yourself. You’ll look back on this run up and wonder why you got in a tizzy! Have a wonderful time.
Hi Gimme, I didn't even try to get insurance for PMR when travelling as the worst intervention required would be to take extra Prednisolon, which I always had on me. I think you are giving the insurance providers a lot of credit when you assume they would be able to connect the dots between PMR and GCA given that some doctors can't. Yes, there is a chance of GCA emerging for a percentage of PMR patients, but it is a different condition and you don't currently have it. You have done everything you could to cover yourself, enjoy the holiday, which, by the way, sounds amazing. I hope you share some photos with us. Vx
Yes, that is true as there is a small risk you could develop the illness. They are few and far between though and it depends where in a particular country you are heading and what sort of exposure youa re likely to experience. You can always go without - but you MIGHT then find you are restricted on your return to the UK or entry to countries through which you are travelling in the event that there is an outbreak while you are in the country. But to be honest - it is mostly the less developed countries or where the sanitation is basic and at our age - do you NEED to go there when you are on pred and have a dodgy immune system?
Have a wonderful trip! I am so glad you are going. We decided to have One Last Big Holiday and go to South America, but at the last moment I felt we should not go; thankfully I listened to the inner voice, because otherwise we would have been stuck in Lima during Covid! Do what you can when you can!
I ve been to bolivia. It’s a country of contrast. The difficulty you may have is the altitude problem which affects your breathing. We adjusted after a week but you just have to move slower.If you can speak Spanish it helps but it is the South American Spanish. It’s hot and humid in Santa Cruz but drier higher. Check out the seasons as there are rainy periods and dry. If you are with a tour company pick their brains as they will have tour guides who know the system. Just make sure you do have enough medical supplies. Maybe take your repeat prescription list you could maybe ask if it could be translated for your trip .hope this helps. Our daughter lived in tarija for several years. They found the locals helped with advice on stomach upsets and insect bites etc. You may have to buy your water as we had to boil or buy water due to some parasites.
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ha yes, now that I am unwinding, I am starting to get excited. I'll put some photos in our gardening group on facebook when I get back. Fingers crossed that I will get to see condor.
History of PMR/GCA?
GCA and PMR 
PMR morphing into GCA
Holiday insurance
