gpa vasculitis

[poppet2]

I have been suffering this disease some 11 years and am seeking recommendations for best travel insurance which covers pre medical conditions? I will be cruising to Norwegian Fjords. Thanks in anticipation.

[Main1234]

hi

The which report this month reviewed travel insurance. Indureandgo was listed as a specialist insurer with pre existing medical conditions. Need to be Black and Gold not Budget policy. No maximum age.

All clear scored well with no maximum age. Platinum and Gold Plus policies were best buys.

Just Travel Cover worth checking, Gold and Silver cover . Maximum age 79.

Also mentioned Barclays travel insurance, Co op travel insurance and Nationwide Building Society are also mentioned.

Happy travels

[poppet2 in reply to Main1234]

Thank you Main. I did try All CLEAR TODAY which seemed pricey but there again I haven't been abroad since 2018 which was pre covid but will try get 1 or 2 others to compare. Thanks for your info and will follow up tomorrow.

[Dazler99 in reply to poppet2]

Hi,

I have also been suffering with Vasculitis GPA. I have a packaged current account with Nationwide which cost £13 per month and includes worldwide travel insurance.

There is an option to upgrade the travel insurance by declaring pre-existing medical conditions. I declared my Vasculitis, high blood pressure & high cholesterol and paid an extra £162 upgrade to receive worldwide travel cover for a full year.

Good luck with your insurance and I hope you enjoy your cruise.

Regards

Dazler

[Investigator1]

Hi poppet2 I have GPA, Hypertension and on Stations for Cholestrol. I declared them all and the best insurance (that included Covid Cover) highest ranked was Holiday Extras. I was with Virgin who were charging me £140 for an annual policy now want £219, I finished with Staysure because of the absolute awful carry on with claiming. So just took one out (Currently on Holiday in RSA) with Holiday extras offering same Excess at £163 for annual policy. My AMEX also covers me for anything paid for by that including travel. Nick

[emmachamberlain in reply to Investigator1]

Hi i hope you dont mind me asking? But ive only recently been diagnosed with ANCA- positive GPA. I have a severe saddle nose from it and lost my hearing, im currently having infusions which will last up to 2 years. I was meant to fly to america but told even in remission this is very bad for those with severe Vasculitis. Ive barely left my house fpr nearly 2 years and i now struggling walking and with day to day stuff i used to do, i have no point of care and worried and the uncertain future i have ahead. Are you able to live a normal life? Ive been told i have to avoid crowds, cant travel and that i will always have to treatment as my immune system is attacking organs and will always need to be suppressed, im guessing the variations of GPA may make it different for everyone?

[Frosty_nights89 in reply to emmachamberlain]

Emma I’m Marc I have iga vasculitis they tell me there’s no cure its has caused my kidneys to stop functioning properly so I’ve had chemo and a cocktail of pills the consultant said I could travel if I wore a mask and protected myself against mosquitoes but the heat made my legs swell up which caused me to struggle walking so not a nice experience. try and stay positive and live the best life you can

[Vik1975 in reply to Frosty_nights89]

After many quotes I got in touch with avanti, which was really expensive. They put me through to paying to much. The oremiym was halved

[emmachamberlain in reply to Frosty_nights89]

I am so sorry to hear about the effect this illness is having on your life, its been so hard and can be so isolating,. I met a lovely lady at my last infusion who directed to me this site and its taken me a long time to reach out, Im really grateful for your quick and helpful response. My legs have been really bad so it your message has helped to confirm for myself that flying and trips abroad are not safe for me at the moment. Thank you Marc

[Main1234 in reply to emmachamberlain]

Hi I’m sorry you are having a rough time, it’s certainly a disease that carries on giving. Because it’s a rare condition it’s vital you have a consultant/ care from someone who has expertise in vasculitis. The help line can help with support and signposting you in the right direction.

There is also a good face book page that many find supportive as well as this site.

My partner has GPA vasculitis and after a raft of treatments he has a good life.. different than before but still good. There is hope with good treatment.

America is hard to visit due to insurance but many, us included have visited. If you are not stable at the moment your consultant may be concerns with you flying especially with ear involvement.

Maybe post on this site with a different title and you may get more responses.

Good luck and keep posting .?

[emmachamberlain in reply to Main1234]

I have had no point of care since this crazy journey began for me, Im really lucky that my doctor was able to recognise the symptoms, sadly due to her friend having the same illness and severe facial deformity I have. Through Vasculitis UK, my doctor has referred me to a Vasculitis specialist, but the waiting list is so long. If it wasn't for the extensive research have done and the support from Vasculitis UK & America I would't have a clue.

The worrying thing for me is the lack of treatment or care, the infusions team were shocked as they didn't know who to call with regard to new symptoms and whether to continue treatment, I am fighting hard though and through my research, extensive studies on bloods and going through my own medical records, I am hoping to make a change, so doctors are better educated on the irregularities in blood results (mine ongoing for 12 years) so they are not missing important signs and also know what test need to be done in order to find rare autoimmune diseases like this.

Can I ask the type of ANCA (the blood test that confirms you Vasculitis) your husband has please, there is a few different types and i didn't know if this made a huge difference?

Thank you so much for your message xxx

[Main1234 in reply to emmachamberlain]

If I remember correctly it was CRP, ANCA and ESR. and some others I’ve forgotten as he had so many! He was treated quite quickly approx 8 weeks after symptoms appeared as he was so unwell.

Good luck

[emmachamberlain in reply to Main1234]

Thank you x

[Dazler99 in reply to emmachamberlain]

Hi Emma,

I am really sorry to hear about your problems. I have had so many blood tests, infusions and different drugs since I was diagnosed in September 2022 with GPA. I can assure that there is light at the end of the tunnel so try to remain positive.

I recently found a brilliant video which fully explains all the treatments you can expect when diagnosed with GPA. I found it reassuring that I had been given all the treatments mentioned to deal with this horrible disease. I hope the link works and you find it useful.

youtu.be/nFdIvb9HTxc(Not working as expected?)

[emmachamberlain in reply to Dazler99]

Thank you so much for your time and support. x

[emmachamberlain in reply to Dazler99]

This is amazing thank you! Also really helpful for research I have been doing and the people to speak to me. Thank you x

[Investigator1 in reply to emmachamberlain]

Hi Emma, I am in a bit of a different situation to you, I guess I am one of the lucky ones, my GPA is under control at the moment and has been since I started doing Rituximab nearly 4 years ago. I do everything I can to live a normal life, I decided after Covid I would be careful not Anal. I go abroad about 5 times a year. I don’t avoid crowds and I only wear a mask occasionally, I have colds and although it takes a few weeks I shake them off, I have had mosquito bites and they go. My route has been to expose myself a bit to thinks to help fight them off. Many on here May say it’s risky but it’s helped me live as normal a life as possible. Do take care. Nick

[emmachamberlain in reply to Investigator1]

Thank you do much for your time and help, it means a lot, its really good to hear of people living normal lives and 12 years on, in some cases. How long have you had Vasculitis and what organs have you had effected by it, if you don't mind me asking? Could I ask what ANCA type you tested for in your bloods, im wondering if this makes a difference in how the illness effects us? With regards to travel, how much has the Vasculitis affected your legs and hearing as these are both concerns for travelling for myself. Sorry to ask so many questions. I want to live as normal life as I can without being a burden to those around me (getting unwell and ended up needing more support or ruining peoples holiday's if I got unwell lol). Thank you so much Nick. Sending love x

[Investigator1 in reply to emmachamberlain]

Hi Emma ask away as much as you like, it’s what we are here for. My kidneys initially were affected but started returning to normal after the first Cyclophosphamide and I have good function now. My eyes took a bit of a hammering with Episcleritis and after catching Covid (twice) I had to have laser treatment to repair retinal tears. The usual sinus problems but they cleared up. I am ANCA PR3 Positive, at diagnosis in December 2019 I was off the scale (+177) but now I am around 2.5-3. My joints are generally ok as I do absolutely everything to remain active. I cycle and power walk and in between if my ankles, knees and hips are hurting I have an exercise bike however I think those issues are more down to the treatment rather than the condition and I also like a few drinks of a weekend or when on holiday. Please don’t think I am being blasé about things far from it, I have had a lot of soul searching to do and I have had some dark times but it’s my personal belief that this life is not a rehearsal and we are on the GPA journey whatever, it’s not our fault and it’s not other peoples problem so we have to make the most of what we have even if it hurts.

A couple of years ago I had a particular nasty episode that nearly finished me off. I was suffering badly after treatment one Christmas but made the effort to go out and buy people individual presents. Even though this person knew I was suffering they texted us to say they didn’t like their present and were giving it away. That hurt and it made me ill, I wasn’t producing much cortisol at the time so it affected me badly. What type of person would do that you ask? A nobody is the answer. The most shattering thing for me during my journey has been the ignorance and selfishness os some others. Get over that Emma and you can beat anything. Nick.

[Dazler99 in reply to Investigator1]

Emma,

Myself and Nick have so much in common with this disease and our treatments so between us I am sure we can help you with information you need.

My ANCA positive reading at diagnosis was 140 but i am now ANCA negative. CRP was 74 and now down 50 and now down to 2.

I know from reading Nick’s messages that we have both pushed ourselves physically to try to stay fit as possible with positivity to fight this disease.

Stay strong and fight it!!!

Dazler xx

[emmachamberlain in reply to Dazler99]

Thank you so much for your help and support! I have so many questions, to many for you? Its really interesting though what you both say about your bloods and ANCA readings and CRP. For so long the doctors were sending me for the same blood tests, bringing up all sorts of irregular markers but they were never looked into further. Im not sure if the bloods they are doing now ( the ones I can see in the NHS app) cover all the things they should be, whilst monitoring the treatment effects and Vasculitis itself. I've become quite knowledgable in bloods and the tests but struggling to find the ones that need to be done regularly to monitor this? I have basically been guiding the doctors I have seen as to what to do.

Thank you so much xx

[emmachamberlain in reply to Investigator1]

Thank you so much, im sorry to hear all you have been through! I to have spent a lot of time soul searching as processing this, it has changed/ruined my life and everything I did and planned to do. Its becoming more concerning for me with the management and care (or lack of) i've received for many years. I am also ANCA PR3-Positive but the last time that was checked was back in 2022, it was my doctor who first noticed the signs of the flare up I had and after over a year later I was able to guide the rhemuotolgist's as to what test's they needed to do and I was finally diagnosed. The flare up was caused by the medication's I was given and the amount of time I was on them with symptoms that my body wasn't agreeing with them. The long term medication they have given me since a young girl, going through my medical records of over 10 years, it is proving the likely cause of the vasculitis and the long term symptoms Ive had . The flare up caused severe rashes all over my legs and a hard painless lump came up on nose near my eye, this turned into a cyst I had to have cut and drained twice, then cauterised after having a biopsy (leaving a scar on my face). No one knew what it was meaning it was left for so long its caused a severe saddle nose deformity, I almost had full loss of hearing and my vision and lungs were/are being affected. I have severe arthritis in all my joints and the steroids and caused even more weakness in my legs and knees.

I am very active and although I can't face the public and my friends like I once did, I used to run one of the biggest events in my hometown, worked as an events manager and club manager, responsible for the full license of the venue. I have done charity events since my diagnosis but i just can't do what I used to, physically and mentally. Do you mind me asking how old you are? I am 34, I was diagnosed officially 2022 and started the infusions in May, i've had methotrexate and mycophenolate already which has affected my hair (luckily I had a lot of hair to lose) causing a lot of it to fall out. Im currently working with a liaison service and together with my lovely advocate lady we are hopefully going to get me to a specialist and I can get some support. If it wasnt for my doctor, the Vasculius foundation and people like yourself, things could be so much worse. thank your time and sorry for the long message x

[Investigator1 in reply to emmachamberlain]

Hi Emma, I’m 62 now, I was diagnosed when I was 58. My wife has been my beacon really. Without her I may have been in a lot more trouble mentally. She has a knack of being caring and understanding without fussing (I don’t like fussing) she has a lot of patience too but she knows I do my best to get on with things and have created my own norm. I really do wish you all the best. Nick.

[emmachamberlain in reply to Investigator1]

That is a little reassuring, thank you so much! It's all so confusing, i've been told different things by different doctors, thankfully the Vasculitis foundation and lovely people like yourself have been able to make things a little clearer. Thank you!

[AtopicGuy]

Comparison sites are the best: I use Confused.com, but there are many others. You put in all your details and answer the medical questions just once. It then searches dozens of insurance companies and provides a list of the best deals to choose from. Make sure you specify it's a cruise. If going as part of a group, getting everyone's cover at the same time works out cheaper. I do this for my elderly neighbours as well as family.

[EdieBD]

The pricier the better!!! You want the best insurance money can by. Last fall I was medically evacuated from Costa Rica. TravelGuard paid, for my hospital stay, my emergency surgery, and private Learjet evacuation from Costa Rica to the U.S. (which alone cost $45,000). All the best to you. Safe travels.

[EdieBD]

Forgot the most important part. Buy the insurance within the first couple of weeks of your first travel day, as it will likely cover pre-existing conditions. Have an attorney friend look the policy over, with fine tooth comb, and expect the insurance to resist right up front, should anything happen. Best to travel with a friend. I was all alone when disaster struck. No fun.

[tinytigger]

I also have had Vasculitis for around 12 years and we have just booked a Holiday round the Med and booked a Insurance with Avanti with very little fuss not cheap but very Comprehensive and they were very helpful.

[poppet2]

Thank you everybody for your advice. I will definitely be following up on few of these for some quotes and will look forward to my cruise.

[Katie18]

I use All Clear and have churg Strauss

[Silentcorner]

Ive cruised a few times and use Staysure or all clear