Rheumatoid life expectancy - positive notes please - NRAS

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Rheumatoid life expectancy - positive notes please

94 Replies

I am on methotrexate injection and humira and I am doing extremely well. I am only 54 and have this huge fear of dying of this damned disease. Does anyone believe that by being on the drugs early it helps our chances of longevity? I am aware of the reduction in our lives but I need to hear positives posts about this disease. Thanks and thanks for allowing me to join.

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94 Replies
farm123 profile image
farm123

I am 51 and had this disease since I was 19 and I always thought my life expectancy would be less. Last year I lost my husband and he never had this and was 50 so you never know what will happen and just have to make the most of every day. Sorry perhaps not quite the positive you were after.

in reply to farm123

I also lost my husband when I turned 50 so I know your pain and sadness. I am actually a very positive person and have since remarried and have a three year old grandson and I think this is where my fear has arisen due to happiness. I don’t sit and wallow but I have a huge amount of loss in the last five years and I think that’s where it’s coming from. Thanks so much

medway-lady profile image
medway-lady

News to me, as far as I'm aware we all die like we all pay tax! lol seriously I think we die not of it but with it. RA is not cureable but it is controllable. so whose advised you we'll die early. I know people in the nineties with it and don't believe it makes any difference to longevity but of course that might depend on whether the person continues to remain actiive, weight and smoking in other words all the usual risks.

Then again RA does put people at higher risk of other auto immue conditions and related things so maybe their is a risk. But please don't worry as life is all too short to spend time being anxious over things we can't change.

thelmar profile image
thelmar

Hi Gasl

Welcome. Approximately 13 years ago I was diagnosed with RD. When the Rheumatologist told me I burst in to tears. I thought I had been given a death sentence as some years earlier a colleague had died as a direct result of RD. She had suffered for years. My Rheumatologist was really good and said that in the intervening years there had been so many advances that I should put such thoughts out of my mind. He recommended NRAS to me and the information from them was very different to the things I had been imagining. It’s still a horrible disease but modern drugs help an awful lot of people. Just keep in mind that people who are feeling ok are busy getting on with their lives, not writing on here.

But do be sure that you will get all the help and support you need on here.

Regards, Thelma

in reply to thelmar

Thanks Thelma, I am an ex nurse and I when I was training my biggest fear was RA. Also, I am very busy with my three year old grandson and I have just remarried and I think that’s where my fear lies, because I’m very happy. That might sound crazy but there you go. Thanks so much

Luci22 profile image
Luci22 in reply to

Joining in the conversation; so why was your biggest fear RA, out of all the other diseases out there? Curious as I have not known much about this aspect of the disease.

in reply to Luci22

I can’t answer that as I have no idea. When I did my nurse training we went into thing very in-depth and mayb it was the way ra was taught to me, the deformity all those years ago, the pain, etc who knows. When your doing your training you usually find there’s always one disease. My friends was lupus and low and behold she got lupus. Maybe premonitions. I honestly can’t explain it x

Luci22 profile image
Luci22 in reply to

Ah ok, so not that it was the worst one out there but just a personal thing, I see!

Shalf profile image
Shalf

Hi Gasl, There are no guarantees in life whether we have an AI Disease or not. Many people with illnesses have outlived people without any Illness. It's the way life is. Yesterday is gone, tomorrow isn't guaranteed for anyone. Live for today. I did exactly the same as Thelma when I was told I had RA. Of course it's a shock and of course we worry for our future, it's natural to do so. But, somewhere along the line we learn to accept, we have to. This forum has been truly a god send for me, without the understanding and support I don't know where I would be. I hope you experience the same. I am confident you will. Stay strong and keep smiling. It's OK to feel doubtful sometimes. Sending hugs - Suzie xx

in reply to Shalf

Thanks Suzie, I have had the disease for 11 years and for the first time I’ve had a wobble. I get what your saying as I lost my first husband and became a young widow but I have remarried and I do live life to the full. I just needed the reassurance. Thanks so much

Shalf profile image
Shalf in reply to

Needing a bit reassurance is perfectly understandable. Most of us know this. No one fully knows the lives each of us have now or what we have gone through. A small piece of a much larger picture. Respect is the key! 3 year olds are so much fun. I bet he keeps you on your toes! :) Even happier times ahead I'm sure!

Enjoy every moment xx

in reply to

I am sure that we all have lived with RA for a while before we have done something about it. Keep smiling 💐

in reply to Shalf

For me it was a relief when I found out, what scared me is what else that they found out on the way

helixhelix profile image
helixhelix

Like others I really think things have changed hugely. It used to be that people with RA died about 10-15 years earlier than we should have done, mainly from heart disease. However all the recent research says that's no longer true IF the disease and inflammation is controlled. And that's a big reason to be on these drugs as by them controlling the inflammation you reduce your risks big time.

Yes there are new risks if you are on biologics, so you need to keep alert to any warning symptoms and signs of infections - but compared to the quality of life you should get then these risks are reasonable.

If your GP doesn't already do this, ask to have a cardiovascular check up once a year, and then forget about it and get on with your life.

in reply to helixhelix

My RA nurse told me, when I came off humira after having serious flu that was actually badly treated by the hospital, I had a choice of heart attack or humira. I’ve been back on the humira for over a year and I’ve never been so well. I am off to the States on holiday next week for two weeks and won’t take it for two weeks due to the flight and increased risk of infection and then recommence when I get back. Thanks so much

helixhelix profile image
helixhelix in reply to

Enjoy your holiday! When you get back, if you still feel fearful maybe you should talk to your GP about getting some talking therapy? It's not good to live in daily fear.

in reply to helixhelix

I will be grand thanks. I was just having a wobble. Thanks so much x

My mum is still going at 84 and has had RA since her 40s - and I’m intending to follow her lead! She’s had health challenges brought on by RA and the drugs including a heart attack but got through them all. Don’t worry about it, live the life you can X

Shalf profile image
Shalf in reply to

Now that's positive! ' And I'm intending to follow her lead'. And I'm following yours Jenny! Good attitude! 😁 Well said X

in reply to

Thanks Jenny-H that is great news. I do live my life to the full but now and then I get the fear because I have such loss in my family. Good luck to you and your mum x

in reply to

We do all get down, we are dealing with a lot - hopefully concentrating on the now and doing all we can to feel the best we can gives focus and helps reduce the fear X

in reply to

Xx

hawker955 profile image
hawker955

Do not despair Gasl, it is no fun having this disease if untreated but ?Humira and Methotrexate in my case were a silver bullet and life continued as normal. I have continued being an active competitive racing cyclist despite RA. Without my Humira; life would be far, far less tolerable! By the way I have been on Humira since 2009 but methotrexate was stopped when I needed surgery for a separate problem. Like you I was diagnosed in my ffties, at 55 in fact. Goodluck.

AgedCrone profile image
AgedCrone

Hi Gasl.....I was diagnosed 20 years ago around your age.....on Dmards from the start....still going strong.....few ups & downs, but leading a good comfortable life.

I firmly believe getting on to the right drugs as early as possible leads to a better result than relying on steroidsto ease the pain, but really not delaying joint damage.

Yes...you can have some nasty reactions to Dmards, but once your rheumatologist finds the right combination for you things settle down....you say you are doing well on Mtx & Humira......so please stop worrying & enjoy your life as much as you can.

in reply to AgedCrone

Thank you so much, I was having a wobble. I had a serious bout of flu an hour and have ago and that’s where this started. Thanks so much x

AgedCrone profile image
AgedCrone in reply to

Well....I had flu in January.....never had it before ...decided it was THE END, but of course I got over it.

BUT........in lateFebruary I came out in a rash.....it was pinky purple blotchy ....looked AWFUL,but it didn't hurt or itch......it was only on my torso...nowhere else.

Went to GP.....she shrugged & said wait & see. But it got worse & worse.

I took the initiative & after a month I saw a dermatologist privately as by this time my torso was completely covered.....Drug Induced Lupus had been mentioned ...so I was very fearful.

I had a biopsy & it turned out to be 99% certain it was a Post Viral Rash....following from the January flu....nothing to do with my RA drugs at all.

So if you should get similar rash....don't panic. Mine lasted 12/14 weeks, which is exactly what the text books said it would. It didn't cause any problems, in fact I went to Tenerife for month ....had to keep covered up...but I felt fine.

My skin is fine now....no scars or after effects!

So get on & live La Dolcd Vita!

bpeal1 profile image
bpeal1

The occupational health doctor I saw (who was very clued up on auto immune conditions) told me people die with RA (ie it’s not curable) but not from it.

in reply to bpeal1

Thanks so much x

Fra22-57 profile image
Fra22-57

Try and think positive else you will ruin the life you have.Enjoy everything g you do and share with loved ones and friends.

I have loads of auto immune diseases and others and yes I have had very dark thoughts and depression but realised I was making others around me low too.

I don't think I am going to live less.crikey last century my ancestors wouldn't of reached my age

in reply to Fra22-57

Thanks. I do live my love to the full, I am very busy and go away a lot, I remarried a year ago and have a wonderful grandson. I don’t share these thoughts with anyone that’s why I came on here. Thank you so much and I hope you stay well. Auto immune is horrible x

BoneyC profile image
BoneyC

I'm only 54 and had the disease 47 years but I'm still alive!! I can't do anything to get rid of the RA but I can make lifestyle choices to reduce the risk. My cardiovascular score this year was 2.5, so I'm not concerned at all. I made a Will years ago to provide for my family so what's to worry about? Some of my ancestors lived well into their 90's in Victorian England, with no NHS!

in reply to BoneyC

Thanks so much x

helixhelix profile image
helixhelix in reply to BoneyC

Wow, 2.5! Well done! You must have great cholesterol & blood pressure readings!

BoneyC profile image
BoneyC in reply to helixhelix

Cholesterol about 4.5, BP on the lower side, BMI 21.

E_2b profile image
E_2b

Ok Gasl!

Google Roadback foundation....

Its the infection theory and arthritis

Briefly my story I was diagnosed in Feb 2015 and commenced Methotrexate 10 weeks later after being extremely ill I ended up in hospital with a life-threatening bleed. I refused biologics and further treatment.

After this I found a road back Foundation doctor commenced the antibiotic approach, found I had an infected root canal where a dentist had left a piece of equipment in my root canal, looks like the infection triggered the RA.

I am since fully cured since December 2015 since said tooth was removed.

Leave no stone unturned.

The doctor helped me was Dr Sean Dunphy carrigaline Cork Ireland.

Best wishes and kind regards on your journey. Enjoy the grandchild!

Shalf profile image
Shalf in reply to E_2b

Wow! Another interesting story re dentist issues! There were a lot of people of the view that this triggered/caused their AI Disease.

E_2b profile image
E_2b in reply to Shalf

Hi Shalf thanks for your cheery reply.

Cheers 😊

MissMinto profile image
MissMinto

Hi Gasl, welcome to the group.

I understand your fear...loss wobbles your foundations and can suck the joy out of happiness, but don't let it!

My mum had RA and lived to the ripe old age of 87 - the biologics etc weren't available to her but she still had a good life. I've had RA for the last 20 years (I'm 61) and it is a hideous thing ('the disease that keeps on giving' somebody on here once said) but the choice of drugs available has really changed outcomes for most.

As a side note - my dad was convinced he'd never outlive his own father who died at 63. Despite us all telling him to let it go and stop being so obsessed, he died...at 63.

The mind is a powerful thing, so if I were you I'd start planning what you might wear to your lovely little grandson's wedding - mindfulness, gratitude and positive thinking all the way!

in reply to MissMinto

Thank you so much and oh believe me I see myself at my grandsons graduation. We all have a story and our stories can rock our world for a wee while and that’s what happened to me. I don’t discuss it with my family. Thanks so much xxx

CarolyneJA profile image
CarolyneJA

Get flu and pneumonia shots, stay as active as you can.

Mandalou profile image
Mandalou

Hi Gasl

You say you are going to America on holiday next week for a couple of weeks and will stop your Humira due to the flights and risk of infection.

I'm not sure this is the best plan of action?

Why have you come to this conclusion?

Mx

in reply to Mandalou

I have taken advice from my ra team and due to the drop in my immunity and the infections risk on an 8 hr flight it’s easier to stop it for two weeks

Mandalou profile image
Mandalou in reply to

Hi Gasl

Of course - taking advice from your RA team is 100% the correct thing to do.

I say this with all respect and please don't think it is done without a huge amount of experience in the field of aviation/travel and personal experience of RA but you are no more likely to get infected with anything on an eight hour flight than going about your everyday life.

I'm assuming your RA team must believe that your RA is so well controlled currently and inflammation markers are so low that two weeks without Humira won't exacerbate your disease.

Its interesting to me that they think just two weeks without it is enough to boost your immune system enough to protect you from infections.

When having surgery the doctors recommend Biologics are halted for two weeks before and two weeks after.

I'm talking out loud really, I'm interested in people's thought processes and how anxiety manifests.

We are all victims of it to a certain extent when suffering with the unpredictable and individual path that RA takes.

In your post you sound desperately concerned about prognosis of RA long term but then ask for positive responses.

So with the info you have posted about travelling on holiday I'm going to give you a positive response and say IMHO you must put thought of infection from an aeroplane situation completely out of your mind.

Have a great holiday.

Mx

MissMinto profile image
MissMinto in reply to Mandalou

Hi Mandalou,

Sorry to butt in but risk of infection on a flight is very real and even moreso for those who are immuno-suppressed.

I suspect Gasl's team advised her to stay off the Humira not so much to boost her immune system but more likely to reduce the degree to which she's immune-suppressed.

Anti-bac wipes and hand gel are a must on long haul flights according to this article:

skyscanner.com.au/news/flig...

in reply to MissMinto

Thank you that is it in a nutshell. Xxx

AgedCrone profile image
AgedCrone in reply to

As ex cabin crew......one of the best precautions you can take on a long flight is to smear Vaseline just inside your nose.....I know it sounds daft but it really does stop a lot of the bugs being inhaled.

in reply to AgedCrone

That’s weird that’s what I was going to do. I must have read it somewhere. Thanks for that information. It invaluable xx

AgedCrone profile image
AgedCrone in reply to

Have a great holiday...pack an empty bag for all the shopping!

Where in the States are you headed?

in reply to AgedCrone

4 days NY then to Niagra falls, then New England and Boston thank you xx

nablur profile image
nablur in reply to

Enjoy!!!

Mandalou profile image
Mandalou in reply to MissMinto

Hi MissMinto.

I think to get overly hung up about Micro bacteria and minuscule organisms that surround us in every day modern life is a slippery slope that can fan the flame of paranoia in susceptible individuals.

Washing ones hands in soap and water is probably the most sensible and practical advice both to prevent and protect.

The SKyscanner article is a little sensationalist I found.

Gasl is a nurse as they explain in their posts- so should be well informed from personal experience of the likliehood of infection in any highly populated public places.

For me and I stress FOR ME , I wouldn't be interrupting my biologic treatment because of a long haul flight ( I explain why below) as MY assessement of risk quite plainly differs.

Also I have stressed that taking medical advice is of course 100% correct.

Im not being deliberately argumentative and directing this at a personal level I'm writing to express my views as a point of interest for others who may read this. After finding Gasl's post interesting and thought provoking.

I feel I am qualified to have an opinion on long haul travel as I am long haul senior cabin crew and have flown professionally for over 31 years without a break save the 11months it took to get myself (gratefully) back to work and stabilised on Biologics after the explosive disabling onset of RA in 2015.

Have a nice weekend.

Mx

in reply to Mandalou

I am not hung up on micro bacteria or minuscule organisms, however I nearly died of the flu a year an a half ago and was taken off my humira for 6 months so that my body could fight infection, this was not only real but very scary. I respect that you have worked long haul but I’m afraid aircrafts are a huge cause of infection as you are in a tin can with dirty air con and I have nursed huge amounts of people who have literally come off flights extremely unwell and some have not made it and it was due to illness caught on flights. Now your immunity on these flights may have built up and that’s why you have been lucky . Coming off humira for two weeks makes absolute no difference to my ra in any shape or form but it doesnto my immunity and that is a fact I’m afraid. I only came on heat to receive positive feed back for a fear that I was having, it does not mean I am a walking wreck. I am very busy, very happy and just wanted to know peoples thoughts on mortality and the change in mortality for ra with the new drugs and I have been happily surprised by most of the replies I have. The reason I asked for positive feed back is because negative ones are tooooo easy to find.

Mandalou profile image
Mandalou in reply to

Hi Gasl

I just dont understand why you have to jump down my throat and be so defensive when I have been perfectly polite. It offends me that you can’t see me as a person too behind the keyboard with an illness just like your own.

Im sorry if I touched a nerve, you seem to be well content with all the positive reinforcement you are receiving here after such a traumatic time personally.

I appogise if my thoughts didnt follow the path you were expecting the thread you started to take.

I must remember to always in future comment with nothing but soothing strokes.

Have a wonderful holiday.

Mx

in reply to Mandalou

Where on Earth was I jumping down your throat? I was replying to your comment in a very adult and repectful manner. There is no where in my reply that jumps down your throat. Having a different opinion and expressing ones opinion does not make it jumping down ones throat. I thought we were all adults on here. Anyway this is not the site for me. I have had such beautiful and helpful comments on here but I am not hanging areound for a fight, it’s not my style and certainly not why I came on here good luck to you

MissMinto profile image
MissMinto in reply to Mandalou

Hi Mandalou,

We are all qualified to have an opinion of every aspect of living with RA, with the caveat that all opinions are expressed politely and kindly and mindful of the fact that each person's experience varies greatly.

I'm sure your intentions were pure, but the wording of your first "I'm not sure this is the best plan of action" and subsequent comments could be perceived as confrontational in tone.

I suspect Gasl's experience as a nurse gives her a respect for the air-borne viruses that can't just be dealt with solely with hand-washing.

That you are still able to work and only lost a year of your life before biologics brought everything under control is a truly wonderful thing and you are very fortunate (as you are clearly aware).

However many people on here have had their whole lives blighted for 20, 30, 40 years or more by RA and (unwillingly) had to give up work years ago - not just because of the disease, but because of the dreadful side effects of the medications taken to control it.

When your immune system has been hammered into the ground by years of immune-suppression and you catch anything and everything going, it's not surprising that germ phobia creeps in.

in reply to MissMinto

Indeed and I have decided to leave this forum due to comments of the other person. I didn’t come here to be quizzed, spoken to unkindly ( there’s enough of that in the real world) and be accused of jumping down someone’s throat when it was clearly the other way. Round. I have said this in a previous post, I have been on a mesothelioma ( disease my husband died of) for six years and not one cross word has been spoken and I actually mean not one. Thanks for your support and take care of yourself x

MissMinto profile image
MissMinto in reply to

It would be a shame to leave Gasl, to miss out on all the positive advice and support - I think it's just bad luck that your first post wasn't a great experience. X

Mandalou profile image
Mandalou in reply to MissMinto

Hi MissMinto and Gasl

Its a real shame but you don’t know or understand me at all. Im not a troll but have been a supportive active member here for several years and have got to know and respect a whole host of Forum members.

I shall bow out of this thread as clearly my attempts to try and become human not just an anonymous keyboard tapper have been utterly misconstrued. I guess I always try and talk individually to the person and never respond without giving names or signing off so when Im replied to without these courtesies I see it as impolite in the same way as my words seeming to you to be confrontational can be taken so , this was despite me stressing that wasn’t what I was doing.

One can only give suggestions and advice for what one reads from personal experience and the typed word is always open to interpretation and at least the Forum members here are sophisticated enough to read between the lines.

Anyway its given people something to read on a rainy Sunday afternoon.

Cheers

M.

Shalf profile image
Shalf in reply to Mandalou

You did nothing wrong Mandalou X

in reply to Shalf

I disagree but i find it interesting it is you two who have come at me when I have neither been rude or blunt and only defended myself. There is a huge difference between questions and being questioned. Now I came in peace on here and I will remain that way but I would ask that your two do not ask or answer anything I have to say and then we can all remain civil. Thank you

Shalf profile image
Shalf in reply to

You do likewise! Ok!

in reply to Shalf

I have asked you earlier to leave me be. I didn’t ask you to step in to protect the person I was talking to. We are supposed to be adults on here. There is something quite amiss about you and the other person. Now leave it!!

AgedCrone profile image
AgedCrone in reply to Mandalou

I flew for 25 years ..thankfully didn't get diagnosed until after I left.

I reckon lifting all those heavy teapots before we had trolleys gave me the OA in my hands!

But I wouldn't have missed a day of it......but wouldn't want to be doing it now!.....too much like hard work!

in reply to Mandalou

I have no fear of travel and I have no fear of my drugs etc. The only fear I have or had was life being shortened due to ra and it may sound irrational to you but I have lost a huge amount in the last few years and this is where it may have manifested itself. My husband died is asbestos disease, my brother killed homself and my father fell off a roof and died soooo I probably thought having a chronic condition I want going to be lucky with it and so I wanted to hear peoples positive slant on RA as I am nurse and only see negatives at times. So what I wanted was to take the good from everyone’s strength here. Now so far as the plane, there is a higher risk of infection in a plane due to the air on that is circulated round the plane this is why people take ill on planes, get colds, get d and v and chest infections. This is unfortunate a fact and my discussion with my ra team was not out of fear but as a normal discussion. To stop the humira for two weeks will have no direct influence on my joints but will just allow my immunity cope with some

Infections you can pick up on an aircraft.

Hi gasl , last rheumatology meeting I went to said there’s no reason with modern drugs and if caught early not to have same life expectancy as peers, contrary to what they used to say ... reasons to be cheerful, just need someone to come up with cure & i’ll be made up 😃

in reply to

Thanks so much for that information Kerensky. Great to know x

in reply to

Hi Gasl

Welcome aboard

Please don't worry

We're all very different .

I find that meditation helps me detach from the monkey mind . There's some excellent meditations that are great for pain relief and posativity .

I do hope you can find some peace because worrying takes up so much precious energy 💖

VeronicaF profile image
VeronicaF in reply to

do you watch mooji reikimaster? just you saying monkey mind,I know what you mean by that although not doing too well with that with this diagnoses

in reply to VeronicaF

I know it’s not easy is it 💜 . I’ve never heard of Mooji x

nymima01 profile image
nymima01

Hello everyone - I write and read here for my daughter who has RA. She has had it since she was in her 20’s, but wasn’t diagnosed until this year. She is 42 yrs old. Suddenly everything that has happened to her all the years in between made sense. She could barely walk by the time one of her doctors made a referral to an RA specialist. We were at our wits end because she couldn’t work when she had flares. They were horrendous as many of you all know. Well, now she has been on Humira for about 6 months and she is doing great! She has her life back and she has renewed energy to go about her daily life with her 11 yr old son. Her doctor is great. He listens to her concerns. She doesn’t dwell on the fact she has RA and the possible problems that go along with the disease because she is proof positive that before she was diagnosed, she was a basket case every few months with every flare up you can imagine. Even UC - ulcerative colitis! Now that everything is under control for 6 months so far, life couldn’t be better. She has a new job and renewed faith and she rolls with it. I am the one who does the research - not her! Lol. She is happy being in the “state of being” she is in now. Enjoy yourself and feel confident you have it better than what people didn’t have in the past. It’s a GOOD THING! Love and light!

Cheylann profile image
Cheylann in reply to nymima01

Exactly what I said. Live in the moment, be happy and don't worry about dying from arthritis. You could get hit.by a bus. A bit ridiculous. So pleased to hear about your daughter. It's encouraging as I'm about to start MTX.

Boisestate1 profile image
Boisestate1

My brother was in excellent condition but died of RA at the age of 57 nonetheless. He tried all the biologics but his organs were gradually weakened and then destroyed. Terrible but being honest...we need a cure for this disease ASAP.

nymima01 profile image
nymima01 in reply to Boisestate1

I’m sorry for you and your brother. It’s a difficult condition to live with. My favorite cashier at my local drugstore has been struggling with RA for over 20 yrs. I’ve known her all this time. She is barely able to walk and is bent over, but she still goes to work. God bless her. Love and light to you and your brother.

VeronicaF profile image
VeronicaF

Please don't go, I think its important to share even scary thoughts and feelings, it is very scary condition

some of these threads have helped me not to be so scared and that was down to you putting this thread yup

so thank you

I was diagnosed 31 years ago aged 36. Now 67. I have lots of serious conditions on top of RD. Cancer didn't get me, and I'm sure RD won't. My Gran lived well into her 80s and she had it 60 years.

nablur profile image
nablur

My only advice is do not drink the water from the aircraft. That means the coffee and tea too. Bring your own water, all that you might need for the flight.

Those tanks are NEVER

cleaned. And you can bring dégermer wipes for your seat and tray.

Micktheclicky profile image
Micktheclicky in reply to nablur

I don’t think that it’s possible to bring your own water onto an airplane any longer ?

Rubyroo1 profile image
Rubyroo1 in reply to Micktheclicky

Some of the airports now allow you to take empty water bottles through security and have a water bottle filling station air side, so you could do this and take water on the plane.

Micktheclicky profile image
Micktheclicky in reply to Rubyroo1

Thanks, I’m not sure this applies in the UK , I’ve never seen a water bottle filling station on an airport here . They normally charge you for everything they can until you are out of the airport the other end of the journey 😡

Rubyroo1 profile image
Rubyroo1 in reply to Micktheclicky

They do have them at Heathrow and Gatwick now, just a little hidden away.... and free too. Hidden probably so you buy bottled water though :-)

helixhelix profile image
helixhelix in reply to Micktheclicky

It's a faff, but you can get your empty water bottles filled up airside, info here

moneysavingexpert.com/news/...

nymima01 profile image
nymima01 in reply to Micktheclicky

You can buy bottled water after you go through security.

Cheylann profile image
Cheylann in reply to nablur

Why?

Stacymurphy813 profile image
Stacymurphy813

I have had RA for 30 plus years and I am 47.

Follow the direction of your doctors with regular visits and blood work. If you do this you can catch things early. DO NOT LET THIS DISEASE ROB you of anything !!! We all will die at some point, but you can't worry about the unknown!!!

I have had both knees and hips replaced with revisions on all 4 joints. To date, I have not found any meds that work with the exception of the dreaded prednisone. That is alright with me because I will find a way to settle this down and it will not beat me. Stay positive and be good to yourself.

Best wishes and prayers to you and your family!!!

in reply to Stacymurphy813

Thank you so much. I feel far more reassured by the majority of people’s comments. I do live my life and always have but I had a wee wobble so thank you so much xx

VeronicaF profile image
VeronicaF

Hi Gasl, I think the problem is not you or your thread, its a very sensitive subject, and something in all the back of our minds we get scared of, I dare anyone not to have thought of this subject but I think everyones differenet in how they deal with it in their emotons, (please excuse spelling and grammer)

and that changes too in how strong you feel on the day, like tonight its not the condition getting to me, but I was a treary mess this morning.

so I think everyones answering differently in how they cope and deal with this subject.

I don't know if I am making any sense??

I don't most of the time but I mean everything in a nice way and hope it comes across like that xxx

in reply to VeronicaF

Thank you so much and I’m sorry that you feel so tearful. This runs deeper. There two people who are determined to cause grief and it’s not right. It’s vile but hey ho that’s ok. I hope you feel better xx

DelicateInput profile image
DelicateInput

I don't know if I can add much to the huge number of responses.

Those with RA with reduced longevity are usually smokers. Smoking causes two serious conditions in those with RA:

a) Smoking furs the arteries but long standing RA also causes inflammation in the arteries. I do not know if the RA drugs prevent or reduce this. Although atherschlerosis is very treatable with stents and surgery nowadays, it must be infinitely better not to smoke.

b) Smoking (and environmental factors) cause COPD, and infections also seriously damage the bronchi and lungs. RA can also cause bronchial thickening, which is also a symptom of lung damage caused by COPD or bronchiectasis. In addition, the drugs prescribed for RA suppress the immune system which makes people susceptible to lung infections. These will cause further lung damage each time in those with existing lung damage. Some people with lung damage may not be able to take RA drugs. I certainly had difficulty with a longstanding lung condition and had to try them on/off. I could never sustain a long period on them.

Also, obesity causes inflammation in the body which will exacerbate RA and may mean you need a higher dose of drugs. Obesity is very bad anyway and will lead to diabetes which is also a serious life-shortening condition. It is difficult to exercise if you have RA but all you can do is try to keep moving. You can, however, watch your diet and omit inflammatory food and drinks.

If you are mindful of all this, and do not smoke and keep your weight within normal levels and also exercise, I doubt your life will be shortened. However, I think smoking really is a killer.

in reply to DelicateInput

Thanks. I am a non smoker and I look after my weight and I eat really well. Thanks so much for your input really helpful xx

nablur profile image
nablur

Yes. You buy it after security check.

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS

Hi all

Unfortunately, I have had to delete some comments on here, as once again a handful of site users have fallen out and taken over a post. I will deal with this further when I am back from holiday.

I also thought this article might be of interest. I think when it comes to lifespan the key points to note are that: a) While some factors will be outside of your control, some lifestyle factors can be managed to reduce risks. b) The picture is looking much better now than ever before, with people tending to start medication early on and with more medications available, giving a better chance of successful treatment. c) Overall statistics will only tell you so much, and we speak to people on the helpline in their 80s and 90s who have had RA for a long time and are still doing well.

nras.org.uk/how-is-lifespan...

Victoria

(NRAS)

chavaudret profile image
chavaudret in reply to Victoria-NRAS

Hi I have just read the article , I have scaring on my lungs having a ct next week ,

I have been on sulphasalazine and hydroxycloriquine for 26 years and did well, but I refused methotrexate and an antiviral after being treated for a viral infection which took 2 years to clear on interferon ,in 2007

during that time I didn't take arthritis meds as the whole thing seemed contraindicated

and i restarted sulphasalazine in 2008,

now Ive been told my inflammation is out of control crp 62

Im a bit confused about prognosis for fibrosis can you enlighten me , there seems to be so many different lung conditions , and advice , I have been on dr google and this site

I have been told the scaring could have been caused by out of control inflammation and they want me to go on methotrexate, which seems odd ,as I have had previous hepatitis infections, Im confused and scared any advice from any members would help ,dr google says 3 to 5 years for fibrosis and I find my rheums hard to trust x

Cheylann profile image
Cheylann

Never knew u died any earlier than anyone else. Don't worry about dying and live and enjoy the time u do have.

Lee1945 profile image
Lee1945

The good news, given to me by my late husband, is that YOU will not know that you have died so why worry about it!??

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