travel insurance - am I in remission - Vasculitis UK

Vasculitis UK

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travel insurance - am I in remission

Rodelinda profile image
9 Replies

The sticky question for me attempting to book travel insurance is “ Am I in remission?” I had GPA diagnosed 8years ago and was extremely unwell initially. Poor renal function then but no dialyses and GFR normal for my age now. I am 73. I am very well usually. I have continued on treatment but unable to completely stop the meds. I am on Prednisolone5mg daily and Azothiaprine 50 mg every second day ( as my WCC tended to be low) I have no symptoms but if I reduce the Prednisolone to 4mg then I get nose bleeds. I would say I have a pharmacologically induced remission but not full remission. How do I answer that question please?

9 Replies
citygirl1234 profile image
citygirl1234

Hi, my doctor said remission for ANCA vasculitis is usually defined as having a Birmingham Vasculitis Activity Score (BVAS) of zero, which means you have no symptoms or lab results that indicate your vasculitis is active. Your BVAS may be on your last clinic letter. If you’re unsure, I’d check with your doctor or specialist nurse. You can be in remission and still be taking medication, not everyone is able to achieve drug free remission.

My GPA is not in remission and it has never prevented me from buying travel insurance.

Rodelinda profile image
Rodelinda in reply to citygirl1234

Thanks so much I have real trouble getting access to anyone at the moment. I have Travel Insurance but it is astronomical

citygirl1234 profile image
citygirl1234 in reply to Rodelinda

I know the feeling. If you can’t get hold of a specialist nurse, you could try calling or emailing your consultant’s secretary. If you still get nothing, your hospital’s PALS department should be able to help you if you tell them you can’t get in touch with anyone from the department. It’s a bit tedious but should work.

I’ve found the same to be honest but you can shop around to knock off a bit off the price. I went skiing just before the pandemic and my friend couldn’t match the premium I paid even by saying she had a broken leg, broken arm and hip! That said at least I could get cover.

whitefishbay profile image
whitefishbay

How timely as I am trying to renew my yearly travel insurance (£200 is my renewal figure). I am sure I don't really have PMR now but as you say how do you put that in the online form. (I am on 1/4 mg pred)? I have mentioned my heart surgery (atrial septal defect) which I had in 1971 before you were born. I am afraid if I don't mention it when I need it they will say I didn't declare everything. Ridiculous really.

Rodelinda profile image
Rodelinda

Thankyou all - not before I was born !!

eh66 profile image
eh66

My insurance didn't ask that question - they were more interested in medication and day patient visits. My consultant letters say in remission but I still have slightly raised antibody levels. Each insurance company appears to have their own criteria. Mine were also interested in my BMI.

Grannybean profile image
Grannybean

It's really a question for your consultant, but I was told that I was in "clinical remission" (from GPA) a few months after diagnosis, hence I always answer the "are you in remission?" question with "yes". Having said that, most companies still won't touch me. If you have kidney involvement there is a question asking how often you see a renal consultant - if your Vasculitis consultant is a nephrologist (as they all are where I'm seen) that is a killer question.

Rodelinda profile image
Rodelinda in reply to Grannybean

Thankyou --agreed on all those--and age doesn't help either

Nadine99 profile image
Nadine99

Really odd we're always looking at travel insurance and have never been asked if in remission although we always put Vasculitis rather than GPA. Maybe I'll check that out next time

This time our insurers the Post Office told us to leave out triple heart bypass and i made sure it was recorded

It's a minefield out there

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