Newly diagnosed Wegners with Polyangitis

[pamleseelleur]

Hello I am a 55 years old and in October was put on a ventilator for damage to lungs and sinuses due to Wegners. I have been taking steroids and Rituximab which have put it into remission. As my immune system is suppressed I've been advised not to travel as I could pick up infection from flying by being in confined spaces. Has anyone else living with Wegners got around this problem? Also having a lot of joint pain reducing the steroids. Is this likely to improve? I've read about people living with Wegners for nine years or more. Has anyone lived with this disease for considerably longer? Any advice would be appreciated.

[Nadine99]

Well I'm extremely hopeful that my husband will live with it longer than 9 years, he's had it 5 years already!! Someone is giving you duff information, we've flown a good few miles without my husbands WG being in remission. You've been given what sounds to be the correct treatment, very early on in your illness, so go away and do some research, or ask here about this disease.

I apologise if I sound a little miffed but you make it sound as though everyone with WG is going to die!! That is not the case and I'd better be quiet now.

Please do some research, ask some questions but be assured, people live with and manage this disease.

[Jase222 in reply to Nadine99]

A lot of professionals don't understand the disease only get info from a specialist in the field and do research , my doctor said recent finding suggest the disease reduced massively over the age of sixty and in 65% disappeared altogether, my uncle had GPA and was given 4-5 years at most and survived for 23 years . I take every day as a bonus !

[Hidden in reply to Jase222]

The most common age of onset of ANCA associated vasculitis is 30-50, with plenty of exceptions and it is suspected that this is a skewed range due to it going undiagnosed in the elderly (e.g. someone dying of kidney failure late in life).

It's perfectly possible to live a 'normal' lifespan subject to maintaining remission but to suggest that it can 'disappear' is contrary to any scientific evidence I'm aware of so I'd very much like to see any peer reviewed papers which support your doctor's statement.

[jayf in reply to Nadine99]

I'm afraid you are being very unfair on this commentator. As well as rather aggressive. I'm pleased you and your husband travel away without a care in the world. You are forgetting or not aware of the degrees of severity of WG. I hear fear. Fear that comes from some horror stories on the internet. From a disease we know little about. I have lived 10 years with WG. I would be lying if I said I wasn't very frightened at first. It took perhaps 3 or 4 years before I got my mind round this nasty illness. And people DO pass away from this illness. Just like they do from Lupus for example. I am vigilante: Any chest infection with green catarh and I'm on antibiotics.

Last year I got sepsis in both my legs. I was on a very high dose of Pred and had merely scratched both legs.

They went bright red overnight. I got to the Chelsea and Westminster hospital at 7am. Then fell unconscious. I was 2 or 3 hours from shuffling off this planet.

It took 8 days to recover. And it was scary. Mostly for my family.

To sum up, The sufferer who asked perfectly legitimate questions : Don't feel bad about reaching out. I for one understand your fears. Just be cautious. sensible. And live life !!! And of course listen to your body. And don't feel bad about reporting certain 'flags' promptly to your doctor. Onwards and upwards.

God Bless

JayF

[Nadine99 in reply to jayf]

I don't quite know why you've suddenly cropped up with a comment here after a comment I made 2 years ago?? I was only commenting that many people live with WG for many years when properly controlled. And be assured, my husband and I do travel but it takes a lot of care and control plus a lot of tablets and insurance. In fact, we've just returned from a touring trip of North India and my husband who is the WG sufferer is definitely suffering but he will not let this illness stop him from doing something he wants to do, if he can possibly help it. We have to take measured steps on holiday, we have to allow rest time to allow the visiting time, We take things very slowly, we can only go on flat places, he can't do stairs or hills but we get round it.

So no, I wasn't being aggressive, I was being positive and will continue to be for both myself, my husband and all the sufferers that post on here.

[Howget]

I was diagnosed with W.G.. in 1996 and in remission since 1999. I am an active 68 year old playing wiith grandchildren and I play golf once a week. I know you are feeling rather low at the moment as I did but there is light at the end of the tunnel.. Best wishes.

[DevonLottie]

I've recently had rituximab and am still on 5mg steroids daily ... I'm also flying out to lanzarote for some sunshine in two weeks time. I've had gpa (wegeners) for 15 years and travelled round India last year! It may be your lungs need time to recover before travelling? It will get better and you've done very well if you've achieved remission within 6 months of diagnosis.

[Tippon]

There *is* a chance of getting an infection when you're in an enclosed space like a plane, but it's usually only during the period when your meds are being balanced out, or if the Wegener's is active, so knocking your meds off balance. i.e. When the disease is active, the amount your immune system needs to be suppressed can change regularly. If it's pushed too low, you don't get your natural protection against 'normal' illnesses.

To give you an example, I was diagnosed at the end of 2010, and in July 2011 I went on a cruise. My meds weren't balanced out yet ( I had an extremely bad flare up before diagnosis ), and I picked up pneumonia. My case is a bit unusual because of how bad my initial flare up was, but we don't know much about you other than you were put on a ventilator.

As you're in remission, you'll probably be fine, just be aware that there is a small chance of infection.

If you're on Facebook, have a look at the Vasculitis UK group. There are a lot of knowledgeable people on there who may be able to give you more answers

facebook.com/groups/1635100...

[pwc51]

After initial treatment it was 6 to 9 months before I started travelling again. Since then I have travelled regularly on business. One recommendation is not to travel too soon after treatments such as RTX - I did once and picked something up which laid me out for a few days.

I have had WG for 6.5 years now.

[Llinos]

Ive had WG for 15 yrs, Im 47 now, nearly finishing RTX 2 yr treatment ( Final infusion in April I hope,)for my first flare up in 10 yrs Its not a death sentence, in remission I have a fine life. I play sports, go jogging, eat too much, drink too much. Dont stress out and get anxious about the "whats going to happen to me" It will get better, you learn to listen to your body, rest when your tired etc.

I flew several times last year whilst on treatment with no issues, I took face masks with me in case I was sat next to someone with a cough/cold but never used them. Give your lungs time to recover . It will get better. Best wishes

[AllyGY2013]

Visit vasculitis.org.uk as it has a routemap which will give you more information regarding the disease.

My gp told me not to look the disease up on the internet because it would frighten me, when I was first diagnosed. The first thing I did when I got home was go on the internet and yes some of the information out there is frightening and out of date.

If caught early and treated appropriately remission can be achieved with a near "normal" life.

I was treated with prednisolone early on, came off it and was fine for a very short time but am now back on the meds due to a flare up. My joints are very painful, I suffer with my sinuses and lungs, prednisolone helps but as soon as I reduce the dosage the pain and symptoms return so we're trying a very slow withdrawal in the hope that it will work.

Changing my diet has helped too.

As to travelling. I would be and am more careful when I have a flare but I don't worry too much, I catch buses and would go on holiday if I could afford it but am conscious of people around me, have anti bac gel in my pocket at all times and if I know someone is ill I keep my distance.

Enjoy your life as best you can, listen to your body and you'll soon learn what works or doesn't for you.

Sending you good wishes,

Ally

[skipper35 in reply to AllyGY2013]

Hi, when I was diagnosed my doctor did tell family and me to look it up on internet. I guess he knew we would anyway. I found a support group right away and felt so confident even though I was very ill at the time. In fact without treatment I would only have lived another couple of weeks. My life is as normal as it can be but I am vigilant about infections. Rest is my friend and I take a day off from everything when I begin to feel low. I read but unplug from technology. Fortunately I am retired and I know everyone can't have the luxury of caring for oneself but it is crucial.

[Hidden]

There are many people who have lived with ANCA associated vasculitis for in excess of 30 years and are still alive today.

The joint pain could be as a result of disease damage or tapering of steroids. It may well improve as the Rituximab becomes more effective, 3-4 months after initial treatment.

As far as potential infections are concerned but there's risk in any confined or crowded space but aircraft can harbour a higher concentration of rogue matter due to the recycling of air etc. If you do choose to travel, then ask your vasculitis consultant's advice and ensure you have good insurance cover. The latter is readily available (at a cost) through a number of specialist companies but be very careful to be absolutely accurate when you apply as insurance companies have a habit of wriggling very hard when it comes to actual claims.

[Marcus1988]

I'm currently in remission from GPA and underwent exactly the same treatment as you last year ( September). From my experience so far I think if you're relatively careful and do things like keep your hands sanitised and try to avoid being close to people with bad flu's you should be fine. In regards to aeroplane travel perhaps you could get some sort of face mask to help filter the air for you (a minor inconvenience in when compared to getting sick again).

I was just advised by my consultant (Dr Mukhtyar @ norfolk&norwich) to get antibiotics from my GP if I ever start feeling a cold coming on which I've had to do twice and always seems to knock off anything straight away.

I think its about keeping a positive mental attitude as well as making sure you follow your consultants advise as much as possible. Remember everyone's different and just because one person has a weak immune system doesn't mean yours is going to be as susceptible to infections...

keep smiling!

[SandieB]

Hi i have had WG for over 20yrs now, had 1 relapse which was quite severe, i have flown all over and my last trip was to Austria travelling by coach for 24hrs ( August 2015 ) You can pick up infection at the supermarket,doctors and even in the hospital waiting areas. Like Nadine99 i think someone has got it a bit wrong.

Good Luck

Sandie x

[Suzym2u Moderator Vasculitis UK]

My husband John was diagnosed in 2001, just before his 58th birthday, suffered a relapse in 2003 and 2005. It has been a bit of a roller coaster of ride what with one thing or another. But since he was diagnosed between 2006 and 2009 we have flown to India twice, Vietnam, Cambodia, North Africa and Europe.

On all the long haul trips we went with approval of John's consultant and with Travel Insurance. The Travel insurance Company were fine with John travelling as long as he had been in clinical remission for at least 3 months. (no change in drugs or symptoms)

We go to France every year, and have done since 2001, mostly by ferry or train now, for a month or more. But France seem to have an excellent understanding of WG and we have enrolled with the local doctor there and John's blood tests have also been monitored there too.

In 2012, here in the UK, I had the pleasure of meeting a lovely lady who was diagnosed with WG in 1972. She also suffered with saddle nose. She went on to get married and have children after diagnosis. When I met her in 2012, she was planning on going for a nose reconstruction operation as her eldest daughter was getting married.

All the best and good luck

Susan

[jayf]

I'm coming up to 10 years now with WG. Ups and downs and scares sure.

But walking brusquely every day for 15 mins, cutting out sugar completely, no processed foods, lots of water, and any form of meditation whilst AVOIDING any stress if possible, and we'll meet in 10 years!!

Travelling : 'm with you. Every time I have a flare and my pred is jacked up and I'm very very careful of using the underground and buses etc.

When I'm on 7,5mg I'm still careful...but try to lead a normal life.

I ALWAYS have my hand sanitizer on me and use it often. I have travelled...slightly nervously I admit, and always take a course of Doxicycline with me. Any chesty cough comes on and I start the course.

All said, I did get septosemia in my legs last year when I was on a high dose of Pred and nearly lost them and my life. All from a scratch on each leg.

All best my friend,

Jay