I would like to travel from Ontario to Scotland this summer but I'm not sure whether this is a good idea. I was diagnosed (sort of, negative temporal biopsy) with GCA and PMR in Oct 2015. I started on Prednisone 40 mg and have been tapered by my Rheumatologist. I am currently on 12.5 mg. The tapering recently has been each new dose for a month. I have been feeling well and have been able to hike and ski almost as much as before my diagnosis. I do get tired more easily and do get some muscle pain with the exercise but it doesn't last long. So I really don't know how I will be in July when I want to travel. I want to make sure I can get insurance so that if I am not feeling well that I will be able to recover the cost of the flight. As well, I would like to have coverage for emergency medical care. One insurer I checked with said that at my age (65) my preexisting condition would have to have been stable for 6 months for them to cover me for emergency medical care. Any suggestions would be greatly appreciated.
Thanks so much.
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Bramwater
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I am a believer in going for it. You only live once. Grab the opportunity but I take your point that it would be wise to have travel insurance. Here in the UK you can always get insurance but it might cost a lot more if you have medical history. I know because after my husband had his stroke the cost jumped up.
By the way I am in Scotland and it is really beautiful. I don't know where you are planning on going, the East or West but beware the midges in the West after May!! Best of luck.
Would think you probably need advice from someone your side of the pond re insurance, I travelled from UK to NZ and had no problem getting insurance (was 66 at time). They seemed more interested in the arthritis I have than GCA.
You seemed to have reduced quite quickly, but you say you have no problems so that sounds good. But it's quite a long haul so do be prepared for extra fatigue and don't arrange much for the first couple of days after arriving.
Bring extra tablets just in case you need to up your usual dose, and I try and get into the "new" time zone as soon as I get on plane. That means one way you'll take 2 doses in under 24 hours, and the other way, you may need to take an extra dose because it will be more than 24 between doses. Hope that makes sense!
I've travelled longhaul many times since developing PMR 12 years ago. No problems so far other than you get stiff in the silly little economy seats you get these days!
The insurance matter is something only your local insurers can answer. Shop around though - they all have slightly different rules and regulations. It may have to be declared specifically, it may increase the premium, you may have to find a specialist insurer, but here in Italy we have an annual insurance that covers everything as long as you have been stable and even things closer to the travel time providing you have a declaration from your doctor that you are fit to travel. But those of us in a different system can't really help a lot.
Don't reduce just before travelling though - delaying trying the next dose down may be the difference between having a great holiday and not. I went back to 5mg from 4mg in order to go to China last year and felt better than I'd felt for a long time.
Having a stuck in the mud situation. Started minor headache but lots of tinnitus same side as as TA. Went to Rheumatologist and took blood. Since I just started on 30/25 we knew it was not that immediate reduction. The CRP was normal. First time in a long time. Did not get the ESR and white count just yet. However the ESR On 2/27 was 30. I'm waiting for March 1 ESR and white count etc. yesterday I went back to 35 MG. probably later I will get the rest of the readings. Since we have decided that the more accurate test was the CRP I would like to think that this is a good thing. And my blood has always been an accurate barometer for PMR and GCA. My thoughts are to stay on 35 for a few days and see if it helps my headache or the tinnitus. The other thing was the left side of my neck muscles were hard as a rock. I didn't think that at 30 mg you had muscle issues. I am starting to have back pain and leg stiffnes but the neck is very tender. The possibility that my usual body is coming through even with this high dose of prednisone is what is happening here. For the time being the herpes are at bay. With all of this going on it is difficult for me to determine if in fact the TA area is muscle or vessel. If we go by the CRP alone then perhaps this is not a relapse and I am just very stressed out because this disease can do this to you without any other outside interference. I do not have to work at 74 and have no real stress except for my illness. It is difficult for me staying on the higher dose because of my many reactions to the prednisones the greatest being muscle atrophy, sugar, fatigue, herpes, blood pressure and the list goes on and let's not forget skin thinning, bruising, bleeding. I'm taking care of myself well with proper nutrition and nutrients What now stay on 35 for a while just to make sure. Take another CRP in a week. See if the tenderness goes away and if so then we know the 35 mg is needed. If it is not better then perhaps this is the stress. Next question if the 35 was not needed can I go back down to 30/25 with a normal CRP?
Nothing is ever cut and dry but your advice is greatly appreciated. Thank you.
Impossible to say really - we can't see you, these are the sort of things the doctor has to advise on I think. The hard muscles may not be the PMR/GCA - it could be something else that responds a bit at higher doses of pred. maybe a physio could do an assessment? I personally don't think it is ever a good idea to drop in too big steps but if you have managed 35 to 30 before it should be OK. But remember - you can have "steroid withdrawal rheumatism", it might be that, the drop in dose WAS too much.
Pro I didn't go from 35 to 30 I went from 35/30 every other day for one month then I went to 30 for one month. Then I went to 30/25 for one month so I am basically doing 2.5 reductioneach month as is suggested. I will revisit that if and when I get to 20. My esr is normal, better than a week ago and crp is normal also better than a week ago. White count 14 not bad considering the pred. Feeling better in general except for the sore muscles. I did forget. about steroid withdrawal and anxiety. I will stay at 30 until next blood test and not do 30/25 just to be sure. Thank you.
thanks for all your advice and encouragement. I am hoping to travel to Aberdeen in July with a friend who is presenting a paper there at a conference and then to travel on to the Isle of Harris/Lewis - hopefully avoiding the midges.
This is not a reply Nap 1 except to say your query has come at the end of someone else's enquiry and therefore perhaps could be possibly missed. Perhaps need to re submit as a total seperate enquiry as you have specific issues you are concerned about. regards Jackie
Hi, I have PMR and GCA and live in Ontario. A friend of mine wanted me to visit her in Arizona this winter so I did some research on travel plans online. Most I found did not cover what they call "pre-existing conditions" i.e any diagnosis that you already have, if it flared up they wouldn't cover it. Those that did cover pre-existing usually required at least 6 or sometimes 8 months of "no changes", which means even in medication, so if you are getting off the drug, as in tapering, it would count as being a change. You would have to stop your tapering before the cut off time.
"Pre-existing Condition Clauses - As mentioned previously, Pre-existing condition clauses are the most important aspect of medical insurance coverage for traveling Canadian seniors. Important Note On Pre-existing Condition Clauses Most pre-existing condition clauses will have a Stable or Treated term to define the excluded conditions. Generally speaking, a Stable clause will require that the applicant has no new diagnosis, new treatment, or change of medication within a during the stability period. A Treated clause will exclude any condition that is currently being treated by medication or other medical treatment within the defined period. A Treated clause is vast inferior to a Stable clause and only extremely healthy travelers who are not taking medications should select a plan with a Treated clause."
The best thing is to Google travel plans (some have no medical questionnaire which would be a bonus) and then actually phone someone and talk to them in person about your particular circumstances. Manulife has a fairly good reputation so I've added a link below to look at.
Your response is very helpful. I did do a bit of research and found the issue about being stable for a period of time which would rule out coverage for me as I will be reducing my prednisone dose over that period of time. I will check out the links you have included. Thanks a lot.
You're welcome. Yes, that is a pain about a change in medication. There might be some plans that don't ask for a medical. You'll probably pay more but it would be worth checking out. Best of luck !
An added bit to my previous post - unless i was to develop GCA I don't worry about my PMR when I travel. I have never needed Medical attention but just increased my dose for a flare a couple of times. I always have lots of pred with me just in case. If the insurance company covers me for a stroke, heart attack or broken bone I'm good to go. I don't try to decrease my dose while travelling unless I an away for several months.
Definitely you must get cancellation insurance, and take it from me don't rely on anything you might think you have through your credit card. We thought we were covered for a very expensive trip and it turns out that the fine print said "to a maximum of $1000 per person". We lost about $18,000 because of our stupidity, the credit card company's lack of transparency and the cruise company's unkindness (I'd broken my leg two weeks after a cut-off date which would have allowed us to rebook). And as the others have said there are various options for health insurance. Do you have any additional insurance (work or retirement benefits) that include some amount of health coverage when travelling? Does your travel agent have any suggestions?
Wow, that was a nasty blow. I do have some coverage which my husband assures me will cover my situation but I am a bit dubious so I will dig deeper into it before making a decision about travelling outside Canada. The problem is that I don't know what this disease will bring in the next few months as I understand that once you get below 10 mg you start getting into issues with relapses, etc.
Ask - and get any assurances in writing and NEVER try to hide anything. And frankly - if it means staying at the same dose, stay there for a few months! That is a seriously silly clause!
I haven't had any particular issues, just had to use the dead slow method once I hit 10 mg. On the other hand, are you likely to require medical treatment for your "pre-existing" condition? It's not like a heart condition or cancer or any one of a number of other diseases that might become more critical than achy limbs? I know the GCA is more of a potential problem were that to flare up - how likely is that if your taper has been slow with no recurrence of GCA symptoms? If only medical care in the US were not likely to bankrupt one within days.....
I was in the insurance business for over 25 years and suggest that you shop around. It certainly is more expensive at 65. We had to go outside of our own agency to get ours. Try Manulife for a quote. You can buy online but suggest you discuss your own situation with them by phone. Most companies just exclude any medical emergencies relating to your specific condition but some refuse coverage altogether if you have certain medical issues or are on certain drugs. One company we looked at wouldn't cover anyone taking prednisone. It didn't matter the reason.
Trip cancellation insurance is the same story. You need to shop around.
Good luck and hope you make it to Scotland and have a wonderful time!!
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