Hello, wondered if anyone has had anything similar or has any advice. Went to GPs day due to fly on holiday to Middle East as felt I had a UTI and should get antibiotics. They said they’d never seen a urine result like it (didn’t match any colours on their leukocyte or nitrate charts) and has blood and protein so gave antibiotics but then said because I have ‘special medical needs’ 🙄 and can deteriorate very quickly and am on so many drugs, I couldn’t fly until they knew exactly what it was. I said I’m sure it’s just a little infection and wasn’t get to let another health thing of mine ruin my children’s holidays again and they said they were writing in bold on my notes, going against drs instructions and that my insurance was now invalid! I said I’d get the blood test results then decide but the bloods didn’t come back in time so went on holiday anyway with the antibiotics.
BUT I now have obvious blood in urine and frequency (annoying my husband having to have loo stops!) and abdo pain so probably should see a dr here 🙄 (but feel fine and non - lupusy apart from that)
Does anyone know if there’s any way around the insurance invalidation issue? Anyone claimed and the company not asked the GPs?? We had to pay £800 last year for my son to have an injection and antibiotics overseas last year - obviously insurance paid but that’s quite a lot to pay myself.
I do understand why they made the decision but do think they should have spoken to rheumy first to decide as they are very nice but don’t know much about lupus and as many of us find, I either get the ‘we can’t see it, it must be imagination’ or (more often) the ‘you’re dying, go to hospital, too scary for us’ (seriously there is one who looks at me in such fear - I told her she’d send me to hospital even if I said I’d come about a veruca - we did laugh!), so I think invalidating insurance of someone who’s more likely to need it seems a bit counter-productive (except for medico- legal reasons and getting patients to do what they’re told!!)
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Melba1
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Horrendous Mel, have no advice to offer (no overseas travel post-dx) - other than trying the Lupus UK specialist insurer (01223 446 914) for an interim policy - but immense support, hugs, well-wishes XOX 😚😚😚
Thank you! Ironically I feel very well except for the urinary problems so hoping my emergency antibiotics will kick in (although GPs initially refused to give me emergency ones because they said ‘it’s too dangerous for people like you to be able to self treat’ 😬 did ask what that meant and they said the chronically diseased and immunosuppressed etc - rather than the think you know it all, don’t listen to drs anymore I thought they meant! 😂 x
I would get my urine checked there get antibiotics & not claim off insurance. Always excess of few hundred anyway & not worth claiming. I always take ciprofloxacin with me that covers most infections as it’s broad range antibiotic . It always covers me until I get home
Also you can buy in some countries . In Spain they are really cheap not sure how much they would be where u are, but worth a try . I can’t go anywhere without them .. all the best hope u feel better soon x
Ah thanks very much, that’s the one I’m on at the moment but only 2 doses left! Was going to wait for the results of the bloods/ lab urine tests but probably just need some more soon! X
This is only my opinion but you need to take into account where you have travelled to. If you were in France or Spain for instance you may be able to arrange some sort of emergency assistance without taking out an extra mortgage. Also you might have alternative ways of being able to return home quickly.
But you are somewhere in the middle east. I think with drug laws that apply there you should do things by the book. I would be wary of not playing things by the book in such a location.
Only advice I can offer is to drink lots of clean water to help flush the kidneys. Maybe load up on garlic, (natural antibiotic), and vitamin c containing foods. Stay off sugary things. And take as much rest as you are able.
There may be a local person who can offer advice. But I would be wary of potentially infringing any laws in the middle east.
Yes, thank you! I feel the same as not at all familiar with the laws here, although Oman is much more relaxed than other Middle Eastern countries. Just going into the desert tomorrow though so thought best to get sorted before we’re in the middle of nowhere with no medical care 😬 x
Overnighthearinglost - This sounds like great advice for Melba1 about doing everything by the book. I didn’t know about the properties of garlic, you learn something everyday.
Melba1 - If you have problems abroad and have complications and need to be air ambulanced home it can be very tricky, and can cost you thousands. I was flown home from Austria many years after a serious head injury while skiing and although the flight costs were covered there was a lot of things that were not covered because of things in the small print. I fully recovered but accident cost me over £3000 in 1986 so I suggest you look into this very carefully. One insurance company I use cos I have health issues now when I go on the odd trip is PayingTooMuch.com, they are good for people with any medical conditions.
Good luck in your quest, Cranberry Juice is great for UTIs.
I am fine now and recovered within 6 months from a fall half a mile down a mountain and broke no bones, I got helicoptered off, all their charges were paid. All costs were paid except for all the excesses for different sections of the policy I had to claim for and for my husband’s hotel bill as he had to move locations to be close to the hospital (a 7 day holiday became 14 days, my accident happened on day 1).
I expect the total insurance cost was several thousand pounds.
As for the UTI issue you have, I thought I’d share some information with you, I get bloods and urine monitored monthly as I take mycophenolate mofetil and during the last 6 months the doctor has been concerned about the urine results, I have now been for a kidney scan and I am still awaiting the results. Keep drinking plenty of fluids and I hope your infection clears up soon and perhaps you will get some good local medical advice.
That’s bad luck, it happening on the first day too 🙁. Do they think the MMF has caused your kidney problems or is the lupus? I’ve never thought I had kidney involvement but then asked for my hospital records recently and found I’ve had blood in urine and raised urea at admissions and no ones told me, my GPs or rheumy 😡 so I may be wrong!
What symptoms/ urine results have you had?
Hope your scan is ok and it’s just a weird drug effect that will wear off as your body adapts. I had all sorts of strange blood results after rituximab but they did wear off x
I have Myositis with a Scleroderma overlap, diagnosed in 2014.
The mycophenolate can cause problems and a doctor at my practice wanted me to change my medication recently she doesn’t understand the condition as it’s so rare, my expert GP has just retired. I told her nothing changes unless my consultant says so, she had no idea I was awaiting kidney scan results, obviously not reading my notes. By the way I’m on prednisolone too.
My symptoms tend to be groin pain and frequent loo visits but more at night, sometimes blood in urine and usually mixed growths. Sometimes I don’t have symptoms at all.
Back to insurance when I first got ill one of the questions on my policy was any changes in medication, unplanned hospital admissions , anything that changes can cause problems with cover. I’m probably sounding over careful but thinks it’s worth it.
Ah that sounds very like my symptoms on and off for a while. Hope it’s not something extra for you.
Hmm think I’d fail that policy question as have had 4 unplanned hospital admissions in a year and lots of messing around to get the meds right! Comforting in a way that I probably wouldn’t have been covered for bladder/ kidney issues anyway 🙄 I’ve told my poor dad to be ready with his credit card if I need to be admitted here 😐 x
I wanted to let you know that blueberries can help with bladder issues and uti' s too. As well as eating plenty of garlic.
I hope this helps to calm things for you? I think it's great advice to try and avoid known bladder irritants , caffeine and carbonated drinks as well as sugar ? This may help with the frequency and urgency of needing the loo?
Oh dear your post is a salutary warning about flying against medical advice..... if your doctor genuinely thought your condition might detererorate he would be negligent not to advise you not to fly wouldn't he?
If you had already declared your previous medical history on your travel insurance application you could still have claimed under the cancellation clause....& gone at a letter date.
I know disappointing your children would bear heavily on your conscience, but please do bite the bullet now. If you have a holiday rep...ask his/her advice, failing that the female hotel receptionists in Oman will know how much a consult with the hotel doctor will be, or the name of a pharmacy where you will be be able to get advice on which drugs you may be able to buy without seeing a doctor.
But if you feel worse do see a doctor straight away......remember if you are really sick & a doctor there will not sign you off fit to fly, the airline will not accept you on board, & having to stay behind would cost far more than seeing a doctor now.
I do hope you manage to get things sorted out very soon, & that you manage to get some medical assistance.
Thanks - I know but the problem is that if I listened to Drs they wouldn’t let me do anything! If my rheumy had said a definite no I wouldn’t have gone but the GPs do tend to panic with me - they’ve called ambulances, other times sent me to hospital when I’m certainly no worse than I’ve been previously and this time I feel better than I have in a long time, except the bladder issues!
Yes thanks for the advice, I will try and get into the nearest town and find a pharmacy tomorrow. We’re travelling around ourselves so not doing hotels or tour reps which makes it a bit harder but lots of friendly kind people with reasonable English to ask. I’m hoping the blood/ urine analysis will come through tomorrow so we can target the bacteria but when the dr marked the tests urgent all over, the phlebotomists said (whilst chatting and drinking tea) sorry love we don’t do urgent here!! 😂 x
Good to remind us! My friend, who was admitted to the hospital in Italy, had to be cleared to fly home. The travel insurance company was extremely helpful — navigated the system, held three-way telephone calls with doctors, and got her home. It is a big responsibility for both doctors and the airlines to authorize travel after an incident. They can never be absolutely certain a person will not need medical attention, so it is a big responsibility to take. I learned how important travel insurance is.
My husband has never recovered from me becoming really ill on a plane home from South America and them saying they needed to divert and putting a call over the tannoy for a doctor. Not sure what type of dr as neither of us spoke the other’s language and I was too ill to communicate anyway - but he had a case full of needles and drugs and injected me with a few things 😬 never found out what but my husband was just relieved as they didn’t divert and this man sat next to me the rest of the journey!
Yes, when a passenger gets really ill, it is traumatic for everyone involved. Even the doctors (if there is one) on the flight do not necessarily have the means to help the patient. You and your poor husband must have been terrified. Glad you had a good outcome. I have a trip planned and just looked up the definition of pre-existing condition with medical travel insurance. It is defined as a change in condition or diagnosis within a given time-frame before travel. They do look at your medical records. I am not sure what you write or the doctor writes would make a difference. So let’s hope you can get a reasonably priced prescription to take care of things until you get home. And just have fun!
I know you really wanted to be able to join your family on vacation. But a doctor’s first concern has to be your health. To my mind it, it would have been highly unethical for a doctor to allow a patient to travel if he felt there was any chance of a problem becoming significant. Most travel insurance does not cover pre-existing conditions, so it seems the insurance company would figure out out that you had the condition before you left if you were to submit a claim. I think your best bet is to seek the best care you can get overseas and just view it as part of your vacation cost. It is unclear to me what insurance companies see as a pre-existing. It makes travel anxiety-provoking for people with chronic illness. I have a policy for a cruise that is non-restrictive and will look into it for you. Hope your vacation is a healthy one!
You can get insurance for most things from Saga and there are other companies thataccept medical conditions so long as you don't fly in the face of medical advice. It's the only way to go. I fell recently in Italy and fractured my nose, all covered.
Blood in urine is not just an infection - there are other causes - been there in the past- so wish you well soon.
Yes I think they are duty bound to do so and GPs are so frightened of us lupus patients it makes them very cautious. Our current policy excludes lupus anyway as it’s pre existing but I’m just not convinced at all this is lupus (as I’ve never had kidney involvement in many years of lupus so possible but unlikely) so if it’s just a UTI that even a normal person could get, that wouldn’t have been excluded - but is now! Hopefully just some more antibiotics but glad I came as Oman is amazing! Sure they’ll have great healthcare if necessary but expensive 🙃 x
I am going to get this clarified, but it sounds like if your lupus has been stable within 60-180 days, that would be covered. Is it the SLE diagnosis or a new diagnosis that is being covered? If I am understanding this correctly, if you needed an increase in prednisone prior to your trip, that condition would not be covered. On the other hand, if you were stable on your medication but got a new lupus symptom on a trip, that would be covered. It sort of makes sense to me. Otherwise, no one with heart disease, diabetes or systemic connective tissue disease could benefit from medical travel insurance. I am curious how others understand the guidelines.
I’m not sure either, I suppose every policy differs but I’m sure there are some specific policies for the chronically diseased. Your theory that being stable for a few months prior to travelling makes sense. Unfortunately with me I’ve been up and down on steroids several times and only started methotrexate a few months ago so don’t think I count as stable yet.
It’s a risk but I think it also depends on the dr treating you if they want to bend the insurance rules a little by attributing your symptoms to something other than the lupus. I’ve had that done before, which doesn’t feel dishonest as the symptoms might not have been the lupus. My son last year just had an ear infection on holiday and the dr was very dodgy! Charged the insurance company £800 for just an injection (that he hit a nerve with 😬) and antibiotics but said to my husband to just pay £600 and he’d write £800 so we and the dr would benefit from the insurance company - basically we’d get £200. We were horrified and said no but the dr said he does it all the time as insurance companies make loads. And that’s why premiums are so high and those of us who often need medical help overseas aren’t covered, because of dishonest drs (and patients) playing the system 🙄.
Anyway my experience of being hospitalised in most continents is that my local English one was one of the worst! It was in the midst of the flu/ vomit bug but literally poo and vomit everywhere and 6 of us in one bay, some lying on the floor. They were very kind and doing their best in very difficult circumstances but I was treated more quickly and efficiently (and cleanly!) in a little rural African hospital. Although they did give me a drug that I found out was banned in England and the US!
Feel quite safe in Oman though, if their infrastructure, manners and cleanliness is anything to go by, medical treatment should be ok. Hopefully it’s costs are in line with their petrol prices!! 🙂
Where are our going on your trip? I don’t we should let lupus stop us travelling in the stages we feel well enough. Be good to know about suitable insurance though x
No, You will not get any insurance claim you but in, happened to me with just a cut on my leg and Hospital said NOT to go. I did and ended up attending hospital for 2 days and ended up with a badly ulcerated leg that has only Just cleared up from 8th June. If you DO put in a claim it is highly likely you will be Black-listed and find it Very expensive to ever get insurance again
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