Why are we reminded about our lifespan being reduced? - NRAS

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Why are we reminded about our lifespan being reduced?

Jaxine
Jaxine

I really can t get my head around lifespan for RA sufferes! 10 - 15 years off our life, I understand there are many variables to consider - but if modern drugs are keeping RA controlled and risks are reduced so why are we still reminded that life expentancy is shorter? Lots of people who were diagnosed at a young age are still living with RA and have a great life. Is it irrelevant what age you are diagnosed with it whether you are 26 or 56? It seems to me it s the drugs that may cause irreparable damage. Just feeling anxious about it all at the moment, I'm normally so positive! But I guess there are times where our positivity is not sustained. My consultant made it clear to me that being sero positive means I have an aggressive form of RA so needs to be treated so, which scared me abit to be honest. I'm 56 so the thought of only being 70 is scary! I was told I had no further joint damage, my bloods showed inflammation is down and I dont have any other health conditions. Sorry guys dont want to appear insensitive to those who were younger when diagnosed my heart embraces you.

216 Replies
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I've read on several trusted websites that people with RA can expect a "normal" life expectancy (and they also stated that RA use to have a reduced life expectancy of 7 years). I guess there are alot of variables like smoking etc etc.

My nan had severe RA and was 92 when she passed. I'm looking more at the 92 rather than the 70 xxxx

It does get your mind whirling though, im trying to not think too much which isn't that hard for me 😁

Wow! I have never read ' 7 years' every day website says 10 to 15! I'm just feeling drowned and sorry for myself so sorry! Tomorrow I will bounce back x

I read this recently that they use to say reduced it by 7 years but over the last decade or so with the new drugs (and they are constantly researching new ones) RA patients have a "normal" life expectancy.

I have a few friends in pharmaceuticals and the race is on to find new drugs for RA as there is alot of money to be made especially as they are long term drugs.

Funtastic about your nan. And great you don t overthink! I'm an x social worker studying psychotherapy prior to my diagnosis so 'thinking' was a prexuiste of my job. X

Where are you reading that? Something old?

It used to be true before the modern drugs but now it’s no longer the same that that just having RA reduces your lifespan.

But what is true that unless you look after yourself you can have a greater risk of getting heart disease, for example, and that can reduce your lifespan. And of course we have the same risks as anyone else with smoking, being overweight, eating junk etc.

If you look after yourself, manage to work with your rheumy to find a treatment regime that keeps the disease under control and follow normal health guidelines then I think there’s absolutely no reason why you can’t live to a pretty ripe old age.

I reckon I’m fitter and healthier that many people my age!

Jaxine
Jaxine in reply to helixhelix

I think I do not have a great rhemy I have not spoken to the consultant I was introduced to for over a year, I have battled on by myself for a considerable amount of time, maybe that is why I'm being pessimistic! 18 months later and I'm not fixed. Hey ho, I just have be more optimistic. X

Please don't worry. I think Marion and Helix give the main points. It is worth remembering that some medical research is poor quality - I have read some research articles that are full of contradictions and sentences that actually don't make any sense. I try to make it a habit not to read anything pre 2015 - times have changed!

Populations used in research have varing health care systems and access to them, this will affect local data and life expectancy not just from RA.

We are very fortunate that with free access to medical care, with progress in testing, medicines available (and continuing to be developed) that normal life expectancy with RA is expected, assuming that people adhere to the drug regiemes that are devised to help them.

I do so hope your feeling a little more reassurred. x

Jaxine
Jaxine in reply to RosieA

I think when I am controlled I will in deed ( after 18 months) will have a better outlook x

Hiya I agree with all the above, here's to getting treatment and enjoying a long pain free life!!

Jaxine
Jaxine in reply to allanah

Agreed look forward to that! X

I agree with all the others who have posted and intend to try to live a long life. I'm looking after myself as best as I can and, with the help of my RA drugs, my aggressive and sero-positive disease is coming under control. Long may that continue for us all.

Jaxine
Jaxine in reply to Lolabridge

Looking forward to my drugs being controlled too x

My Nan had RA most of her life and they didn’t have the meds then as they have now but she lived into her 80s ,

Jaxine
Jaxine in reply to essexgirl

Bless your nan x

Mine too, none of the meds available nowadays just brufen & paracetamol. She was in her mid 80's when she died back in the 1980's, & not from RD or OA. This is when Googling isn't always helpful, you need to be aware of how old the reference is. If we're otherwise fit & well, well controlled (so our vital organs are healthy) eat a sensible diet & exercise as often as we can, all our Rheumy's suggest, there's no reason why we can't expect to live as long as someone without RD.

Jaxine
Jaxine in reply to nomoreheels

Great sound advice nomoreheels. I hope you get those heeks on again soon 😂😂😂

nomoreheels
nomoreheels in reply to Jaxine

I have! Wedges & block heels but nevertheless, it's great! Actually it's because of how my feet are now, I've not to wear flats.

Jaxine
Jaxine in reply to nomoreheels

The balls of my feet always ache, especially on getting up in the morning it feels like I'm walking on a sea of golf balls. I wear thick soled supergra s and converse they are so comfortable and look good too.

Don’t take offence but it’s best not to do too much reading if you’re going to worry about what you read, especially if it’s out of date information. There’s lots of horror stories out there. Worrying needlessly won’t help your health either. Step away from Dr Google and go and do something enjoyable 😁 🤗

Jaxine
Jaxine in reply to KittyJ

It does not seem out of date which is why I worry! Of course I agree with you but I have just become more anxious recently. I need to slow down x

KittyJ
KittyJ in reply to Jaxine

But if it’s saying RA will knock 10-15 years off your life it is. Where are you looking? I would agree you need to slow down, the early years of being diagnosed are difficult and we look for solutions but scaring yourself won’t help. I hope the replies here will make you less anxious. Look after yourself x

Jaxine
Jaxine in reply to KittyJ

When I Google RA and lifespan it all comes up with the same. Even just gooling RA it explains how our life is shortened by it however, it does explain that with controlled meds life can change. But obviously for me at the moment having gone through so many meds already I'm just feeling negative. I will bounce back! X

helixhelix
helixhelix in reply to Jaxine

I wrote a post a couple of years ago about sifting out some of the rubbish that comes up on google. You might already do all this, but just in case it helps you

healthunlocked.com/nras/pos...

Jaxine
Jaxine in reply to helixhelix

Thank you Helix I will read it now x

Jaxine
Jaxine in reply to Jaxine

I've just read your post. It s so very hard for the newly diagnosed or even the long term suffragettes to master and ciphon out the misguided, random scientific gobblegook that are not backed up with gold print scientific evidence. Amateurs who hold the belief that their credentials surpass the experts in their scientific field. It is too easy to become despondent ( hence my post) and scarmongured when already feeling vulnerable in search of our quest to be become educated on this disease. We need to have access to only the pertinent, factual and backed up evidence based material on RA. We need ourselves to have medical degrees to ciphon out the smelly bollocks! I hold a 2.1 Science degree and I'm grappling all the time to ciphon out the bollicks v the anadotedly scientific evidence based thesis.

helixhelix
helixhelix in reply to Jaxine

Yup, it’s a minefield...and I get so cross when I see vulnerable people being fed rubbish by some of the newspapers, magazines and journals. And a lot of it is just lazy journalism as they don’t make any effort to check facts or provide the right context.

Jaxine
Jaxine in reply to helixhelix

Which is indeed extremely irritating for the 'lay person'

Rashford20
Rashford20 in reply to Jaxine

Nice degree plug there

Jaxine
Jaxine in reply to Rashford20

😂😂Worked my ass off for it, just thought I'd get it out there!!

Rashford20
Rashford20 in reply to Jaxine

Jaxine BSc

Jaxine
Jaxine in reply to Rashford20

Yes I specialised in Economics and Psychology.

Jaxine
Jaxine in reply to Rashford20

Yea it wasn't Quantum Physics😂😂

nomoreheels
nomoreheels in reply to Jaxine

Can you provide a link Jaxine, where you read this please?

Jaxine
Jaxine in reply to nomoreheels

Helix wrote a post 2 years ago, look at Helix s message above she forwarded the link.

nomoreheels
nomoreheels in reply to Jaxine

I have, I remember it actually Jaxine, unusual for me! I think it's sage advice & I did respond to it back then saying as much.

Jaxine
Jaxine in reply to nomoreheels

I didn't read it back then, probably feeling too sorry for myself to read others posts!

Have to agree with all of the previous posts. My GP gave me some great advice when she first suspected that I had RA and I was waiting to see a rheumatologist - don't read anything other than from very trusted and informed sources and don't read anything older than 5 years as treatments have come on leaps and bounds and are still improving.

Jaxine
Jaxine in reply to Boxerlady

I only read trusted web sites, wondering why all of them come up with the same information. I need to stop googling! X

lovemydoggy
lovemydoggy in reply to Jaxine

Just Googled it. Here's the quote. "It is possible for RA to reduce lifespan by 10 to 15 years." Emphasis on POSSIBLE. Not probable, and treatment as well as healthy life choices are huge factors. Lessening stress will do you good, and remember possible can apply to anything.

Jaxine
Jaxine in reply to Boxerlady

But great advice Boxerlady, I'm obviously not reading the trusted sites!

It can be worrying but things change so much. Treatments are improving. I don’t personally feel having RA would decrease my life expectancy. I try to live each day as it comes and not think too much about the unknown.

Jaxine
Jaxine in reply to crashdoll

As I do too, but just recently because I'm not controlled i have started to feel anxious x

My great aunt had severe RA for as long as I remember. I was a child, but I guess she must've been in her mid-50's at the time. I'm 59 so I'm speaking of the 1960's. She was always stooped and had very deformed joints. She was treated with gold. Anyway, she lived well into her 80's and died from cancer. She pretty much had no treatment and it didn't decrease her lifespan. I have another aunt with multiple autoummune diseases including RA and she's 76 now. Always refused treatment so she's not feeling well, but still functioning. I don't understand why she won't take medication, but.......Dr. Google has scared the sh**** out of me more times than I care to remember. So have some actual doctors. I agree with others as well. I've never read or heard that it decreases lifespan by 10 to 15 years.Ive read patients can expect a normal lifespan.

KittyJ
KittyJ in reply to lovemydoggy

Oh gold injections, a distant but horrible memory 😖

Kags1068
Kags1068 in reply to KittyJ

Ah Yes, the dreaded Gold and the sore bum cheek!😉

Jaxine
Jaxine in reply to Kags1068

I don t mind a sore bum just hate sore joints😂😂

Jaxine
Jaxine in reply to lovemydoggy

Google RA and even this website comes up with life span. I need to stop googling x

lovemydoggy
lovemydoggy in reply to Jaxine

Hmm... I've never gotten that result in my reasearch, which I did incessantly a couple of years ago. Definitely, stay away from that. No matter what you google scary stuff comes up. Literally, I think anything health related. Hang in there! ❤️

Jaxine
Jaxine in reply to lovemydoggy

Thank you Lovemydoggy, I think the way forward is to stop googling!

Jaxine
Jaxine in reply to lovemydoggy

It always comes up if you Google it. I will stay away x

Jaxine
Jaxine in reply to lovemydoggy

Wow it s amazing your Aunts were able to live their life without drugs funtastic! If I'm off mine for even a short period a time the devil comes knocking at my door. It s strange because a lot of people have conveyed the same thing ' not read or heard about this 10-15 year life shortancy'. Every website I've been on conveys the same even the more up to date and reliable ones even this one! Hence why it scared me! Yes you're right expect a normal life when controlled by drugs. Happykindagirl you made a very interesting and pertinant point. Thanks you for sharing with me x

lovemydoggy
lovemydoggy in reply to Jaxine

I know my living aunt suffers badly, butshe presses on. My great aunt seemed like superwoman. She was able to do physical labor her whole life. Just from looking at her I would imagine she suffered through some serious pain, but she was a tough cookie. The big take away from both is a long life! 😊

Jaxine
Jaxine in reply to lovemydoggy

Why didn't your Aunts take the medication? Sorry I'm just being a nosy parker!

lovemydoggy
lovemydoggy in reply to Jaxine

She's got a medication phobia. I mean, serious fear of anything. She won't take an over the counter pill for pain. No acetaminophen, no naproxin, etc. She suffers terrible migraines, but won't take anything. No antihistamines for a cold. Personally, I prefer to minimize my suffering. I do think she may take a mild antacid occasionally. So to make a long answer short, she'd rather suffer through anything. I don't understand it.

Jaxine
Jaxine in reply to lovemydoggy

Good for her! But I would take rat poisoning if it got rid of my pain!

lovemydoggy
lovemydoggy in reply to Jaxine

I'm not big on suffering either, but to each her own I suppose.

Jaxine
Jaxine in reply to lovemydoggy

Of course!

If you check the date of information you read on line ...it will probably be years old.

I was diagnosed 20+ years ago .....just after I retired ...Luckily I didn't smoke, exercised playing tennis three hours a day , & wasn’t over weight...I’m still going strong.....but I am lucky enough not to have any diseases that used to be associated with RA...but more likely to have been caused by smoking or obesity.

In the last 10 years drugs to treat RA have come on by leaps & bounds....so stop reading the scary stuff, watch your weight & listen to your rheumatologist....& you just might get that Telegram from the Monarch!

Jaxine
Jaxine in reply to AgedCrone

I know I will get through this, I'm just being negative at the moment. I love this forum because I feel I can be open and honest without judgement, it s just a horrible time for me at the moment. X

AgedCrone
AgedCrone in reply to Jaxine

Please try to stop worrying needlessly. I was about your age when I was diagnosed...with Sero+ RA, & I was furious that my retirement had been ruined....but here I am furious with Covid because I can’t fly off somewhere warm....I know the drug I am on now could stop working tomorrow, & if it does I will try something else......but I will not be beaten & stop living my life to the full, by what I read might/could/will be round the corner.

Try to be positive.....don’t let “what if” spoil your todays....& stop reading scary information that does not apply to you! 🍸🍾

Jaxine
Jaxine in reply to AgedCrone

Thank you AgedCrone, sound advice you're absolutely right of course. Yes I was supposed to be going on holiday with all my 4 children this week it was planned ages ago. At least they are all having a wonderful time without me 😂😂😭😭😭

Rashford20
Rashford20 in reply to Jaxine

Think of the positives, even if there is a small chance your life span is shortened fit and healthy people will wake up today and get hit by a bus.

Spose it’s not really a positive

Jaxine
Jaxine in reply to Rashford20

Yep you're right. Don't think about yesterday it s gone, dont think about tomorrow it hasn't come, live today in the present.

We can worry ourselves too much by reading and worrying about life expectancy or we can seize the day and live in the moment. Ok some of those moments may not be great if you are trying to understand why your body is reacting this way, or you are in pain or suffering. Life is a lottery as is RD, which comes in all shapes and sizes and affects people so differently. As others have said they have known family, friends and others with RD who have lived into their 80's and beyond. My mum was 78 and had it from the age of 28 and it wasn't the RD that shortened her life. I think while it's hard at the beginning to come to terms with and accept this disease that has entered our lives unannounced and certainly not wanted, but having hope and the realisation that each day may present new things hopefully good but sometimes not so good....finding that balance and making the most of times when they are good and knowing when to rest, curl up and be kind to yourself. I have come to learn over the 18 years of being diagnosed not to waste energies on reading into or worrying about life expectancy and perhaps other things Dr. Google and co will bring up about RD. It is so important to read, educate and understand from reliable sources about RD, but I am not RD it just happens to be part of my life. Take care Jaxine x

Jaxine
Jaxine in reply to Pippy25

Thank you I will be kind to myself, just having a blip!

Jaxine
Jaxine in reply to Pippy25

By the way a great, thoughtful and lovely post Pippy. Full of understated positiveness. X

Pippy25
Pippy25 in reply to Jaxine

Thank you, wasn't having a great day myself yesterday but today I'm ok and that's the nature of this beast we are dealing with. It can be a case of sunshine and showers and on the days the sun shines get out there and enjoy/ make the most of life...and if the showers come, rest be kind to yourself and take things as they come.

Jaxine
Jaxine in reply to Pippy25

I made the decision today that when I'm feeling great I will embrace life (hard at this time with Pandemic) but nothing stopping me laughing, singing, listening to music, dancing around my kitchen! But when I'm not well I will rest watch a good film and forget about my anguish as another day i will be dancing again! X

Jaxine
Jaxine in reply to Pippy25

Great positive post by the way Pippy, full of great advice and your personal account of your mother. Thank you for taking the time to give me clarity. X

It is however, the reason that treatment is so aggressive. I'm struggling to get my head around it at the moment.

For lots of other reasons I feel totally ineffective as a human being at the moment and I just don't know what to do for the best. What's the point in living longer if you feel like crap all the time? RD is already taking up so much of my time, physically and mentally. I have children to look after.

We are only at the beginning, everything is new, its a big shock, right now might be THE worst you will feel with RA and once you find treatment (and you will) you can get ontop of things.

I know i feel my body is out of control but I'm so glad there are drugs to deal with it, they will take some time for our body to get use to them but I think they've got to be less harmful than the disease or ot would be counterproductive to give it to us!

The stage we are in now is temporary, , we are on our mission to find our drugs that will get "us" back to being us. Ok maybe slightly different but we won't feel like this forever. I totally understand what it's like and I've had to have a conversation with my children that they've got to do more for themselves whilst I sort myself out! If you can't drive somewhere (and I know you live remotely so driving is a big part of your life) then alternatives will have to be made or it just can't happen for a while. Be kind to yourself, and make people realise you just can't do it all at the moment but you will be back !

I can hear you are anxious and scared, just let it all out here , we understand but don't think you are in this alone; Sorting our minds out is a big part of the battle, we can do this xxx

Liz

Thank you, that s exackly what I'm doing, there is no one who understand the impact of RA than you lovely people x

Hi Liz,

Thank you for your message. Very comforting to read the words you convey. ' The stage we are in is temporay' very wise words. Bless you for taking the time to offer me solice. Xx

Jaxine
Jaxine in reply to Brychni

Yes that s exackly how I am feeling at present. I don t mean to make others sad, I just find solace sometimes saying it as it is!

I find it's good to get things out x

It really does right! My Friends, family are all in good health and just don t get! I'm lucky my hubby is amazing but sometimes it s good to talk amongst the guys that know what it feels like x

Hate taking steroids! They reduce my inflammation and give me more energy but my God after 5 days I'm still weeping and feeling sorry for myself I get really feisty too! I'm normally positive, hence my post!😂😂😂😂😭😭😭😭

helixhelix
helixhelix in reply to Jaxine

devil’s tic-tacs. Hate them, and so does my OH!

Jaxine
Jaxine in reply to helixhelix

Love that expression I'm going to use that from now on!

KittyJ
KittyJ in reply to Brychni

Brychni but you’re not going to feel like crap all the time. The early years of diagnosis are the most difficult whilst you find a treatment that works for you and even if a treatment doesn’t put you in remission it can make a lot of difference to your daily life. I know it doesn’t help you to say we all understand and we have been where you are but we do understand and are here to support you however we can. It’s quite natural to feel like you’ll be like this forever and struggle but one day you’ll be the one saying to others what I’m saying to you, it can just take some time to get there and until you do then life might have to change for you to manage but not forever 🤗

Jaxine
Jaxine in reply to KittyJ

Thank you kitty. I think its predictable I'm on a rollercoaster of a ride and I'm feeling very weepy presently Im generally so positive but for the last few days I've been feeling very sad for myself. I will bounce up promise x😂😂

Jaxine
Jaxine in reply to Brychni

H Brychni, so sorry to hear you're feeling awful at the moment. Must be so difficult when younger and looking after a family, my heart really feels for you. It can be very distressing when you're feeling dreadful. Bless you x

Jaxine
Jaxine in reply to Brychni

Hi Brychni,

So sorry that you feel dreadful at the moment. Must be so hard when your younger and bringing up a family. I have 4 children so totally understand how you must be feeling. I do hope you feel better soon and get the right drugs to enable you to move forward. Bless you xx

What ? this is just not true is it Dr Google or something you've read in a magazine or newspaper because its's written by someone clearly using out of date information. RA is not life threatening; you'll definitely die with it but not of it. Please don't believe that it's anything more than a blip in life's rich tapestry. Treatments work for the great majority of people and I for one do not suffer with RA I simply live with it and live well too. I get so upset reading this type of post because you appear to be saying that you're quite well and think the RA meds are harming or negatively impacting on your life span. It doesn't make sense. The meds will give you hopefully remission if not then you need to discuss the impact with your medical professional to work out if changing to another will be better. I was diagnosed along time before 50 and am now considerably older and expect to be around for a good while longer in remission and growing old disgracefully. So don't get depressed being positive I think is an advantage as its a diagnosis which is unequivocal and treatable.

Jaxine
Jaxine in reply to medway-lady

Don t get upset with my post, this is not my intention. I'm just not controlled after 18 months so I'm feeling sorry for myself. I have faith in this forum, I feel I am able to write positive messages but with those sometimes comes anguish, resentment and feeling at a loss. This is just me talking about my journey, nothing more , nothing less x

medway-lady
medway-lady in reply to Jaxine

I'm not upset with you but the people who gave you this misinformation. The thing is it's not a new or unique journey, I like many others have lived with RA for many years and it could be much worse. I'll support anyone but not indulge in supporting a myth. Say you had a diagnosis for something which may well be terminal or had treatments which have dreadful side effects then yes it will be depressing but for RA it's mostly just time and 18 months isn't that long, especially in the present situation with difficulties in accessing treatments. So try to look at the positives and look forward not dwell on the what might or might not happen as in fact you could get run over tomorrow or be driving the car that runs over someone else. All life is precious and so make the most of yours as you don't know what will happen tomorrow and above all remember a lot like me have lived a long and fulfilled life with RA and bought up families, worked in high powered jobs and played sports, danced, laughed and cried because we are all in the same boat. We will all die and are destined too, from the day we are born but it's not going to be tomorrow or next week or next year with RA. Enjoy tomorrow and try not to concentrate on diagnosis as there are many good medications and in remission life is just well, normal.

Jaxine
Jaxine in reply to medway-lady

Yes I agree. I've always thought about how awful it must be getting terminal cancer dreadful! But sometimes ' it s apples and oranges' unfortunately, we still have our cross to bear. But I agree with your sentiments.

Brychni
Brychni in reply to medway-lady

RA comorbidities aren't myths, though. I keep this in mind when I get the collywobbles about mtx.

Jaxine
Jaxine in reply to Brychni

Yes the drugs are a necessary evil to feel ourselves again.

RosieA
RosieA in reply to Jaxine

It's good to get these things off your chest and you are right that this is a safe forum in which to express your deep concerns and fears. I have a similar problem in that after a year I have not got a definitive diagnosis as my disease is emerging and therefore am now on my third DMARD and still on steroids. This I gather is not unusual.

I have inflammatory arthritis, sicca, UCTD and now some lupus like issues. Most days I'm O.K, yesterday was a major melt down. The day before I had spent a few hours outside with some friends, I was well covered as I am photosensitive, after they left I felt dreadful. The next day I had a meltdown, I stood and realised I just didn't know what to do with my body. I now realise that any extended time outdoors makes me feel absolutely horrendous and I loose the next day. Horrible. So yes we really are all entitled to days when it all just seems too much and the best thing is to get it out of our systems. Honestly, don't worry about the life span data. Very often old data is used - sadly not all medical research / articles are robust.

Here's hoping we both wake up feeling more positive. x

Jaxine
Jaxine in reply to RosieA

I'm so sorry for how you have felt recently. I really do understand your feelings of anguish and sadness, we try to be positive, but sometime when we are battling a debilitating condition it can be hard we put on a brave face, whilst suffering inside. Of course we need to cry, scream and shout out with rage, we are only normal. Thank you for your post x

Brychni
Brychni in reply to Jaxine

😘

Brychni
Brychni in reply to Jaxine

Jaxine: I fully understand. It's a fine line, isn't it, between being informed and frightening yourself to distraction. I was diagnosed in March so am still learning and finding out that there is a lot more to my diagnosis than I thought. Knowledge is power and what I have learned will form the backbone of decisions I make about medication etc. Burying my head in the sand won't achieve anything.

Jaxine
Jaxine in reply to Brychni

You are extremely new to RA and will take time to step back and accept your condition. It took me a while to accept this disease and I went through many emotions initially sadness, grief, anger and finally acceptance, however I still find times in my life where ai repeat this cycle. It s just living with RA as each day can be so different. When I feel great I get out there and live life, when I feel dreadful I rest. X

Brychni
Brychni in reply to medway-lady

Patients don't die of RD but they are prone to co morbidities which are life shortening.

This is from NRAS

nras.org.uk/data/files/Impa...

Jaxine
Jaxine in reply to Brychni

Yes exackly that s what I was referring to. One does not die from RA but from other conditions associated with RA heart disease, lung disease ..... these can have repercussions on our health. But as we know there are many variables and we just have to remain healthy with a positive mindset.

Jaxine
Jaxine in reply to Brychni

However, as everyone has conveyed with the new drugs on offer RA can be controlled keeping the disease strapped and gagged! With regular check ups testing our bloods, x Rays and scans if anything untoward is seen then measures are put into place immediately. We are at least lucky that we do get offered regular checks that most people with RA do not have, however, i think I rather take my chances and not to have RA! But tough luck it s chosen me! 😂😂😂

medway-lady
medway-lady in reply to Brychni

I don't think your reading that in the same way as I do as it clearly to my mind says same risk as Diabetes for heart etc and its dated 2012 thats 8 years old. Please note that a lot of people me included have other conditions which of course cause other issues but thats not RA on its own.

Brychni
Brychni in reply to medway-lady

Hi medway-lady -

that's exactly what I said in my post "it's not RA that kills patients, it can be the comorbidities."

I too have other conditions and those in combination with RD and what that could lead and the knowledge of that makes me not complacent or resigned but proactive. Yes, sometimes it's not certain what's for the best when faced with strong medication but I personally believe that we should have a full which helps us make the right choices and look after ourselves.

medway-lady
medway-lady in reply to Brychni

Yes I agree but my Clinic does do all the stuff in the report and so does GP. I simply believe that in reading all the various stuff out of context and it was published without actual statistics so how many is say 25% is it 5 , 50 or 500. It's possible to assume stuff and I have no doubt frighten someone when in reality staying active, and being well controlled means we will live a relatively normal life. It's not the same for eveyone but knowing about a risk associated is very different to saying our life expectancy is less because of RA. It seems to me now the biggest risk is Covid. Risk is also about risk v lesser risk. So a medication has a risk associated with it , as in my case AKI but left without it the risk was of stomach ulcers. So despite it being a very safe drug it hurt me, its still safe as I'm one of a very few. less than 10 in the UK. We are lucky in this day and age to have the NHS where around here at least , our GP's have implemented the annual review of RA patients and frankly as I said before I have too many check ups and blood tests, I see RA Consultant alternating with RA specialist nurse every three months in normal times. I'd hope it was the same all over the UK. BTW I'm not complacent but have had RA for a long time and have had surgery to correct a damaged foot, I do stay as active as I can and I do trust the doctors I met along the way. I stay positive and enjoy a glass of wine or even 2 and take each day as it comes. I know my biggest risk as I've had a life expectancy and quality report by a Nephrologist for a Barrister for a forthcoming action. The exact statistics for my personal risks even then are something like "best quess" and " a study in Canada" and " in my opinion but it is by no means certain" you get my drift! x

Jaxine
Jaxine in reply to medway-lady

Yes when I wrote my post I should have also made it clear that my worry was not a shortened life span a consequence of having RA, i was more concerned with the potential problems associated with RA. That similar to lupus RA can be potentially damaging attacking our organs ie heart disease, lung problems, cardiovascular. But my post has brought to the fore many excellant responses and provided me with much solice, after all that is the reason why we are here on this forum sharing our anxieties, sadness, pessimism when drugs don't work but also when we feel great, positive and joyous.

On a separate note I had my annual check up and was farcical to say the least! I was bombarded with questions totally irrelevant and was out in 2 minutes. I felt the whole thing was to impede the goals of the doctors 'a quick check list to be put in the drawer'. I asked 2 pertinant questions to no avail. I also asked if she could take my blood pressure as the precious weeks it had been high ( I've always had low blood pressure) God the look of distain on my doctors face! It was if I had asked her to an internal! She told me to make an appointment for my blood pressure.😡 sorry I don t know about AKI?

Brychni
Brychni in reply to Jaxine

Hi Jaxine - was the check up at rheumatology? x

Jaxine
Jaxine in reply to Brychni

No it's done at the doctors surgery by GP s. Waste of time in my opinion, it was useless hence I can t remember too much about it, apart from the distain on my doctors face! I noticed it more because that was the only time she looked at me.

Brychni
Brychni in reply to Jaxine

I'm really irritated by it and it wasn't even my appointment! I think you should say something.

I really, really, really hate complaining. First of all I'm half British and they/we don't complain, but the other half is the polar opposite: German. the German in me is coming to the fore the older I get! I just can't bear the half arsed attitude over here. To go for an annual check up and not even have your blood pressure taken without having to request it is ridiculous and just sloppy. And the thing is that you're not the only one, some of us have really good experiences with health care but most of us face problems somewhere in the system. Aaaarrrrrgh! The problem is that the NHS is so loved and cherished that it has become acceptable that it is shit and run badly and so we can't moan about it.

I regularly speak to my elderly aunt in Germany and when she asks about my health issues, appointments, blood tests etc she will always make suggestions like 'Why don't you ask the doctor' or 'Why don't you go to the clinic' and I have to explain that even without covid getting appointments within a week, at some surgeries in some parts of the country is nigh on impossible and that we can't just get an appointment with our specialist willy nilly. She just doesn't get it.

I have been lucky, early diagnosis etc but one GP did make me feel very small and asked such impertinent questions that at the beginning of my third appointment with her I had to warn her very politely not to ask me about the state of my marriage again. But I've also had the most arrogant, most rude consultants to deal with where my son is concerned. We had an appointment with one who didn't even look at my son's legs. He didn't even get out of his chair. When I asked the GP to re refer my son as his veins had become much worse he was also really dismissive and basically refused and also wouldn't look at the veins - he told me to take photos over the next 6 months. It was when my daughter was being seen by the consultant about her issues (she had been referred by the podiatrist) and he asked to see pics of my son's legs that things got going. He said "Oh dear, I think we need to get your son in too." I told him I'd already tried and been refused and he looked so angry! He immediately fired off a letter and my son got a his appointment within a week.

It's all so inefficient. There doesn't seem to be any urgency. It's infuriating. Nothing ever happens or changes. and don't get me started on the filth in the maternity department where I had my son and daughter and the cockroach I found in the hospital when I had my eldest son. Crumbling buildings...

Rant over!

medway-lady
medway-lady in reply to Brychni

My nan was German and my mums brothers are still there in Aschenburg au Main. An aunt is a nurse and their hospital is incredible. My goodness can Germans complain and the trains run on time, police do police and don't get me started on the length of stay in the single rooms in hospitals never more than 3/4 full. As my aunt said when we were talking about MRSA, that we do not have this in Germany. But they pay more, have more doctors and nurses because they regard them more highly. Or at least thats the way it appears to me when I've been there over many years. A lovely country.

Jaxine
Jaxine in reply to Brychni

It s fine you are entitled to rant and feel free to share your anguish. We are all here listening x

Jaxine
Jaxine in reply to Brychni

Good for you x

Jaxine
Jaxine in reply to medway-lady

Yes I understand there are people here with additional conditions and I was in no way being insensitive to their plight! Not sure what paper you are referring to ' 8 years ago' I read many and some recent.

medway-lady
medway-lady in reply to Jaxine

The one linked to is 8 years old some of the medications now in use may not have been used then. I know in 8 years I've had 3 medications and that have kept the RA in remission. So research isn't always up to date but your RA team will be up to date (hopefully) and will guide you and advice you. Being informed is good being mislead and frightened isn't. All these types of things are subjective and a lot depends on our very different needs.

Jaxine
Jaxine in reply to medway-lady

Very subjective and literally a waiting game.

You could get run over tomorrow or die a different way today tomorrow next week , it is what it is

Jaxine
Jaxine in reply to essexgirl

😂😂😂😂😂 I literally say ' IT IS AS IT IS' all the time! I'm just having an 'off day's x

essexgirl
essexgirl in reply to Jaxine

🤣🤣🤣

One thing I’d like to add too is this. When researchers look at data, it’s not usually just European data, or North American etc...its global. It will encompass countries with poor health outcomes too which will of course, skew results. When comparing average lifespans of say UK and Nigeria, they’re vastly different due to their healthcare regime.

The treatments we enjoy and are lucky to have are not available in so many countries worldwide, so their RA will go mostly untreated. Inflammation levels will remain high which effects the heart.

I was diagnosed just over four years ago and did exactly the same. Googled it and panicked. I imagine that’s the same for us all. Lots of people on this forum are in fine fettle in their 80s. Once you find what works for you and you’re feeling better, you’ll be too busy living to give it more than a passing thought ❤️❤️

Jaxine
Jaxine in reply to HappykindaGal

Hi Happykindagirl,

You're absolutely right, I didnt think about Global statistics makes so much more sence! Thank you for bringing that to my intention. Wonderful post xx

HappykindaGal
HappykindaGal in reply to Jaxine

It's really hard not to worry isn't it. Particularly when you're feeling lousy and thinking there's no end to feeling that way.

Jaxine
Jaxine in reply to HappykindaGal

Hi,

Yes that s my only problem at the moment, I've had so many intermissions where I've had to come off drugs and take a gruelling 4 weeks of steroids. I literally hate taking them as they effect my usual happy go lucky and positive mindset. Just need to find that perfect drug that likes me enough to hang around a bit longer 🤞🤞

HappykindaGal
HappykindaGal in reply to Jaxine

It's tough definitely. I took pred for two years until finally, Benepali which changed my life. Took three attempts to get off the pred though - that was a barrel of laughs

Jaxine
Jaxine in reply to HappykindaGal

Wow you were on it for two years? Gosh I can t wait to get off it after 4 weeks! How come you were on it for so long? It really is very bad to be taking it on a long term basis . But you must have needed it, think I would have turned into a tiger!

HappykindaGal
HappykindaGal in reply to Jaxine

Without it, I couldn't function at all. Couldn't get below 5mg a day. In the end, they switched it to biologics.

It's precisely why I think it's important to be informed. I was freaked out at first and then I just thought I should make sure I stay healthy, continue with my exercise, make sure I maintain a good weight, eat well etc.

Jaxine
Jaxine in reply to Brychni

Nothing like drinking too much winea nd eating everything naughty sometimes. I'm cooking a roast dinner this eve for 2 ( all my 4 children on holiday, i should have been with them😭😭) dam Covid and my suppressed immune system! But I shall sing, dance, drink wine and forget all my troubles x

Brychni
Brychni in reply to Jaxine

Lucky you Jax - I can't drink because of the migraines - in fact I used to just accept that it would result in 2 days of hell but now in the last few years it has started to affect me with the first sip. I would dearly love to get sh** faced occasionally 😂. In combination with RD and migraines, lack of alcohol has completely ruined my social life - no one wants to socialise with someone sipping coke! These days I get dressed up for hospital appointments and blood tests - God knows what the medical staff think of me!!

Enjoy your evening! xx

Jaxine
Jaxine in reply to Brychni

I have suffered from migraines all my life, they are debilitating! Mine were always hormonal and lasted 3 days. With drugs I always get small head aches and drinking wine does not make any difference now so I may as well enjoy feeling silly I'll get one anyway! But migraines are just horrible really feel for you x

There are lots of variables at play as you say and modern medicine perhaps helps.

To be honest, I try to focus on the present. We simply don't know what might happen in the future. The current pandemic has taught us that, if nothing else.

Anxiety is a terrible thing and taking control of it is very difficult. I found mine got much worse while I was taking steroids. Free from steroids I am more able to rationalise.

I hope you find peace.

Jaxine
Jaxine in reply to Brushwork

Hi Brushwork,

Yes agreed, I'm currently on steroids and they always make me overthink, become more anxious, paranoid and very weepy! I'm generally happy go lucky and think more rationally about RA. I've Recently googled alot to get a clearer focus and perspective on drugs and the new drug my consultant is thinking of putting me on ( which I'm not going to take) so complications associated with RA has been playing on my mind. Thank you for your message x

I am trying my best to prove them wrong! I suppose at best it gives us all a chance to improve our lifestyles.

Jaxine
Jaxine in reply to BoneyC

You go forth and prove them wrong!

Hi Jaxine. Don't waste any energy thinking about this. This kind of information is totally pointless and unnecessary. No-one knows how long someone is going to live, with or without RA, so how can you knock any number of years off. It isn't even possible to predict. What is 10 years off an unknown number? It is ridiculous. Apart from that any one of us could have a car accident, have a tree fall on us, be struck by lightening etc. Don't give it another thought. x

Jaxine
Jaxine in reply to Sheila_G

Hi Sheila,

I know you're right, I haven't researched RA for 18 months so Google started to scare me. I'm relatively new to RA so it s still a mine field. Thank you x

I love helix helix ‘s reply. so positive! I agree with what she said that ‘It used to be true before the modern drugs but now it’s no longer the same that just having RA reduces your lifespan.’

I attended a lecture given by Prof Peter Taylor. His presentation showed one Scandinavian study presented an encouraging result showing patients with RA actually has a slightly longer life span than ‘normal’ people because RA is known to be related to other diseases so more attention is paid, problem found and treated earlier. Obviously one study can’t conclude everything but it is a heart warming news to a RA sufferer like me.

You will be fine Jaxine ! I am in remission for more than 2 years now. At present I’m working closely with my Rheumatologist to reduce my medication which has been tapered off 5 times in the last 3 years.

Jaxine
Jaxine in reply to Cien

Funtastic news about your RA Cein! Funtastic findings from Peter Prof Taylor too. It makes sence doesnt it, with frequent bloods done so many other conditions can be picked up early. I remember at the beginning of my journey I too felt optimistic about this in particularly, so its funtastic that you bought my attention to this. Thank you Cien xx

I know it is difficult just having this rotten disease. My thinking is quality of life not quantity and have enjoyed 17 years of relatively pain free due to new meds. And hopefully will have more...I am 68 at mo. I know the meds are dangerous but will take that chance to be free of horrendous pain and not needing a wheelchair. Enjoy your life!💓

Jaxine
Jaxine in reply to Evie3

Thank you Evie, funtastic you've had a relatively pain free17 years Excellant! Quality of life however, can only be achieved when RA is controlled and pain therefore diminishes, looking forward to that! X

Evie3
Evie3 in reply to Jaxine

Everything crossed for you x

At some point during lockdown I did an online life expectancy through an NHS link. Can’t recall which. I honestly put in obesity and RA. And got a result. I then redid it taking the RA out and I got 10 more years. I then put the RA back in and took the obesity out and got one more year. So their algorithm still appears to give a heavy weight to RA, on average, reducing life expectancy. Pondering it I felt that the figures weren’t yet able to show the impact of the new generation of medications. After all people would have had to die to get included and if they aren’t included yet they can’t suppress the RA effect yet! I was very lucky to be diagnosed in 2014 compared to a work colleague at the time who had been diagnosed 20 years earlier. She has a great deal of joint damage and has in the past been a wheelchair user. However in the period from about 2007 she began on various new drugs which have transformed her life. Such that she is active, mobile and working again! I firmly believe that because the new generation of meds (biologics) greatly reduce the damage by RA to our systems, that the overall life expectancy of RA patients will rise dramatically. Surely there must always be a lag while the new figures build up.

By the way, in lockdown and shielding, I found the fact obesity only seemed to lose you a year very reassuring!

I feel very fortunate to have developed RA in this new era.

Jaxine
Jaxine in reply to Arthurthecat

Yes you're right Artherthecat,

I myself have been extremely grateful that being diagnosed only 18 months ago, therefore like you, I am extremely lucky that drugs have moved on so much and have made a huge difference in controlling RA. I just need to find a drug that does exackly that! Onwards and upwards Arther x

Hi there!

I have an Arthur the cat too! 😁

Jaxine
Jaxine in reply to Kags1068

😂😂😂😂😂

Great replies everyone. If anything is going to reduce our lifespan it is the drugs and the attitude of our health care practitioners.

I started RA at 45 and now 71. Getting the right treatment regime is no. 1 . It has taken me years and now settled. Also along the way some health staff upset me with their attitudes. Now I have a fantastic nurse and have seen a top proffesor in RA treatment.

RA does not make you more vulnerable we're no different to anyone else where lifespan is concerned. Going to bed each night I am so careful climbing the stairs as I know at least three people who lost their lives just doing that and no RA.

Jaxine
Jaxine in reply to Nain68cariad

Hi Nain,

I would live to have my own Prof what a delight! How did you find him? So pleased after years you have have found your golden ticket x

Totally understand how you feel. I'm on an 'old' drug not one of the newer ones and do worry about the unseen damage it may be doing to my organs in my body which are never checked, let alone regularly, alongside the possibility of reduced life expectancy of RA anyway.. It doesn't help when an RA consultant on a recent TV programme said she went into Rheumatology because it affects every organ of the body!! So I can see why you are concerned. I'm afraid atcthe moment there seems to be no choice for us other than to put these concerns to the back if our minds as best we can and pray for a cure in our lifetime!

Jaxine
Jaxine in reply to Dobcross1

Hi Dobcross,

A cure would be wonderful! However as most people have conveyed and certainly reassured that living with RA in our present day has increased a person s quality of life due to the new gold drugs. I'm just feeling negative at the moment due to an 18 month journey grappling with that ' gold drug' that will be best suited to me. X

Your organs are checked. An X-ray on lungs, heart and lungs through listening, kidney and liver by blood test etc etc. Please don't frighten yourself your probably better looked after than someone without RA. A cure but a lot of diseases have no cure, but RA can be put into remission and for most that is what usually happens. Not for everyone but for most.

Yes liver, kidneys monitored via 3 monthly blood tests. I had a chest xray before starting medication but have never had heart or lungs checked at any appointments with Rheumatology (my GP has nothing to do with my RA care). It doesn't bother me unduly but is just an underlying thought.

Most people its shared care and the GP does check blood pressure, lung and heart if you go to them if you experience a bug etc . I've always been checked so perhaps its down to the clinic and GP but if your otherwise healthy there may be no need. I get fed up with so many checks and blood tests far too many I think. If your worried after covid, as these days things are not normal anyway, ask your GP if he/she is prescribing he must do a check I think it's every year to continue to prescribe.

Jaxine
Jaxine in reply to medway-lady

Thank you Medway,

My white blood cells were low last week, but one week later back up. My inflammation down, no progression when scanned. Think I need the x day for heart and lungs. How often are we offered this? But certainly you're right we are def looked after!

medway-lady
medway-lady in reply to Jaxine

Here every time I go to the GP they listen to heart and lungs. Its no good to worry too much about one test. The kidneys are often just checked by blood pressure, before blood. And function fluctuates depending on the heat, how much you've drunk, even time of day and is completely normal. We are all different and weight height are also a factor I have cronic kidney failure and it was found by the young RA registrar. They do know what they are doing you just have to trust them. We're not medical but I'm sure some members are nurses and will know a lot more. I know had he not looked at that blood test result that day, booked me a bed and spent nearly all trying to find me along with a nurse who rang the house phone every hour I'd have died. So please don't stress the NHS isn't perfect but it does work and it does look after people with real problems.

Jaxine
Jaxine in reply to medway-lady

Thank goodness you were diagnosed and treated on time. Why did your kidneys fail? But have been such an awful time for you. X

medway-lady
medway-lady in reply to Jaxine

Omeprazole but its so rare the number of people in the world its happened to is minuscule. Its 9th most prescribed drug in UK and I didn't take it for long so just bad luck. It was just one of those things, a curved ball otherwise with RA I led a normal life with RA and was very fit. Because of being fit and active I survived with a new sort of normal life but its a valuable lesson in that what seems to be so bad really isn't, its just blip that can be treated without too many problems. And whilst steroids are valuable they can cause a lot of anxiety so give yourself time and try not to dwell too much on what might happen but concentrate on the positives. It's a lovely day and as we head towards colder ones its nice to go for walk and enjoy some company at a safe distance of course. xx

Jaxine
Jaxine in reply to medway-lady

I will def take note of that drug! That's awful! I constantly coughed for 6 weeks on MTX, my doctor sent me for a chest scan ( thank god) which showed up lung tocxicity. I was immediately put on 50 mg of prednisone per day. I was a wreck on that dosage. I swear my lungs have not been the same since!

helixhelix
helixhelix in reply to Dobcross1

If by “old” you mean traditional DMARDs, then these are modern drugs too. The old treatment was only things like aspirin.

Jaxine
Jaxine in reply to helixhelix

I can't imagine what it must have been like being diagnosed with RA back then and only bring prescribed aspirin!

helixhelix
helixhelix in reply to Jaxine

I’ve been particularly interested in artists with RA, and one of my favorites Edward Burra ended up unable to walk far even with a gazillion pairs of socks. So his sister would drive him places where he could paint landscapes. His main drug was whisky, mixed with morphine. And even so, lived to 71 and died after not recovering from breaking his hip .

Jaxine
Jaxine in reply to helixhelix

Wow! I've not heard of that artist what year was he born? How lovely that he continued to paint landscapes in the comfort of his sisters car that s passion for his work and love of his sister.

helixhelix
helixhelix in reply to Jaxine

1905....

Jaxine
Jaxine in reply to helixhelix

Wow! I love Art and everything it stands for it s literally my passion.

I was told that I had a limited life expectancy when I was first diagnosed - mid 50s! Now at 79, I'm very envious of the improvements in treatment that have occurred during my life span and wish some of them had been available earlier.

But the reductions in life expectancy are mainly due to the effects of the disease on things like the cardiovascular system and the lungs, as well as the limiting effect of painful joints on the level of activity we can do. So you might be adversely affected but with modern treatment not by much.

Jaxine
Jaxine in reply to oldtimer

Yes I am very lucky to have been diagnosed 18 months ago. With the 'Golden age' of drugs, I need to be very thankful for that. X

Jaxine
Jaxine in reply to oldtimer

Do you know what old timer ( change your name you do have life experience but you are beautiful. And I totally respect what you are saying. I think I would be so feisty on this forum if I was you, you've lived with RA for years it must really annoying when people like me get so upset being diagnosed with the drugs that are on offer now!

Sorry to hear you’re feeling so down at the moment Jaxine and completely get where you’re coming from. When I’m feeling like that I get right into google to search for a new handbag or a nice comfy pair of shoes. 🥰 Stay off the negative stuff till you’re feeling better able to cope with it. Xx

Jaxine
Jaxine in reply to LinaM

I bought myself an amazing rug yesterday it made me very happy! X

LinaM
LinaM in reply to Jaxine

Hehe ... well done ! There’s nothing like a bit of retail therapy to clear the doldrums X

Jaxine
Jaxine in reply to LinaM

We have a house in Cornwall in Mawgan Porth that we let out. I love interior design I'm literally at my happiest when I'm surrounded by beautiful fabrics and design.

Dont know if this is a help, but my lovely mum had RA from before she had me, and was a few weeks of 98 when she died in her sleep. As you say drugs are worrying. She was prescribed such a lot, and when put in a home with dementia, she was taken off everything and did not seem to change in condition at all.

I often reflect on this as i swallow my morning dose!

Take care Sopsx

bienassis
bienassis in reply to Sops

Very interesting about your Mum in the care home and being taken off drugs without suffering any change. Sometime ago I read that most care home residents when admitted to hospital as emergencies, were suffering from over medication, When the drugs were reduced, they recovered. My GP has much the same attitude to drugs for his elderly patients. Most drugs can at least be reduced in dosage, if not eliminated.

We are all in the habit to some extent of taking too many drugs - often just because they are there. I'm not talking here about the essential life saving drugs for diseases like diabetes, thyroid problems and the like, or our own disease modifying rheumatoid drugs, but the battery of unnecessary pills and potions promoted by the pharmaceutical companies and others.

Some years ago when I was going through a long remission, I mentioned to my GP whether I could stop the Methotrexate. He didn't advise that, but said I should cut out the NSAID I was taking. An excellent piece of advice. I've never taken it since then, without mishap!

On the whole, doctors are much more aware these days of handing out potent medicines like sweets. NICE has been giving advice to GPs for some time about over-prescribing.

bienassis x

Sops
Sops in reply to bienassis

Hi, i agree with you. I have a cupboard full of white NHS bags and think it is far too many.

A friend of mine used to be my GP, and in later life we sang together and became friends.

He hardly ever gave a prescription to anyone, but would write notes to hand to the patient

-Sore throat? Boil some sage leaves and drink the herbal tea

-Anything ‘down there ‘ rub in /on organic natural yoghurt.

-Case of the vapours, learn to sing and join a choir.....

-For anything else eat raw garlic daily

Would have to say his surgery was never too busy to be seen!

Sopsx

bienassis
bienassis in reply to Sops

Loved your reply! I'm afraid for too long doctors had been quick to prescribe, among other things, antibiotics for just about everything; and patients began to expect it. Eventually, NICE issued GPs, and other doctors, guidelines on the prescribing of antibiotics as these drugs were becoming unworkable because of the frequency of prescriptions. Now, I believe, in most surgeries there is a notice warning patients not to expect an automatic antibiotic prescription.

Common sense, and a little thought, is all it takes to understand the reasoning behind this approach.

Nothing like garlic, is there?

bienassis x

Sops
Sops in reply to bienassis

No, my friend is i think a garlic addict! But he is a lovely man.

Stay safe Sopsx

I agree with Marion. I was told when diagnosed (1967) that, with luck, I might live until 70!

But that was then; much has changed since in the way of drugs and also knowledge. I am 85 and looking forward to my 90th birthday.

Also, if your general health is good it all helps. Eat healthily, and stay positive - the future is not bleak.

bienassis

Jaxine
Jaxine in reply to bienassis

Hi Bienassis, how wonderful reading your post! you have lived for years with this disease and you sound so positive. I was born in 1963 so feel awful to be complaining as I was diagnosed at 55. Bless you x

Jaxine
Jaxine in reply to bienassis

Wow Bienassis , Funtastic you are a legend!

KittyJ
KittyJ in reply to bienassis

Bienassis I was never told much at all let alone life expectancy at diagnosis. There was not the means to find out information then as there is now, I bought quite a few books 😊 The internet is great but sometimes it gives you too much knowledge.

bienassis
bienassis in reply to KittyJ

The doctor who told me about my possible life span was a young Registrar in the Rheumatology Dept. He was young and enthusiastic, and anxious to air his knowledge!

Kitty, you are right about the Web sites - they are minefields to negotiate. Best to stick to the official ones, like NHS Choices, Patient UK, and of course the NRAS information site. Also remember that knowledge about this wretched disease is always increasing; especially its links with stress, the brain and nervous system, and their effects on the immune system. That is now a whole new field of research.

When I was diagnosed, apart from the news about my life span, there was no other information available. And when that's the way things are, you don't worry too much. Now, with so much information available, it can cause anxiety. But as the saying goes: The alternative to knowledge is ignorance; and that won't help anyone.

Have a good weekend.

bienassis x

KittyJ
KittyJ in reply to bienassis

I think I was given a leaflet 😂 but I can understand how people get very anxious reading all that’s out there now.

Enjoy your weekend too x

Kags1068
Kags1068 in reply to bienassis

Hi bienassis

Interesting discussion about the lack of information then versus possibly too much information now. As always, a happy medium would be good!😉

When I was diagnosed, my mum was given a pamphlet called "When you child has arthritis" by Professor Barbara Ansell. I wasn't given anything. I have to say though, that leaflet scared me! I still remember now all the pictures of sad, puffy faced children with various horrible splints and braces and walking frames, etc. Not exactly inspiring to look at, but that's all there was then. Funnily enough, a couple of years later my local Consultant actually sent me to see Professor Ansell in Middlesex at her juvenile's clinic. She wanted to admit me to her ward "with the other youngsters like you." As nice as she was I was having none of it having already been on the local adult rheumatology ward twice by then for 2 weeks and then 4 weeks. I knew once they'd got me I might be stuck there for ages and I wasn't going to fall for that one again - haha!! Thought I was being very clever at the time! 😁😁🙄

bienassis
bienassis in reply to Kags1068

Kags, when you were a child was the juvenile version called Still's Disease? I remember a friend's child in the 1960's had Still's Disease, and at the time little was understood about it. The poor child suffered horribly, and later went on to the full blown adult's disease.

There is so much more that can be done now thanks to the better treatment and the understanding of how drugs work. JIA is the subject of much research; and the way the drugs are given, taking into account the growing process and the child's development, is an extraordinary advance on the old ways. Nevertheless, an awful experience for a child to go through - and of course for the parents.

But you sound very positive and have come through it well, and can even joke about it. I have always feared that my daughter might inherit it - my grandmother died in agony in 1939 with RA - so it is in our genes. Isabel is now 60 and shows no sign of developing RA so far. I just keep my fingers crossed!

Keep well.

bienassis x

Kags1068
Kags1068 in reply to bienassis

Thank you! I think I always try and joke about it (whenever the mood permits), as somehow it seems to have helped me to do that. I know that wouldn't work for everyone but we have to try and work out what suits us don't we? I've found that it can put others at ease too if they're not sure how to mention it.

Yes, thank goodness so much more is understood about JIA now and they take all sorts of things into account with children including, hopefully, psychological aspects too, which to this day have never been mentioned to me! I guess we just had to get on with it!😉

Your poor childhood friend - how scary and painful it must have been for them. I first attended the rheumatology clinic in January 1983. I think by then the disease was called JRA (Juvenile Rheumatoid Arthritis). Then after a few years it seemed to morph into Juvenile onset adult type RA. I think it's only in the last few years I've noticed I'm referred to as JIA, which tickles me as I'm 52 next month.😄 Perhaps once you are JIA you are always JIA! I think I remember the odd older doctor mentioning the phrase 'Still's Disease,' but I assume it was already getting a bit out-dated by 83?

I can certainly understand your fears for your daughter and I'm very pleased she is ok so far. Fingers crossed that continues. The fear of passing it on was certainly a part of my decision not to have children, although I certainly wouldn't in any way criticise anyone who made the opposite choice! Like you, there are a couple of family members - although only distant cousins - who have RA. The memory of what your poor grandmother experienced must be very upsetting.

Anyway, that's probably enough of me rabbiting on! It was nice to meet you and I hope you keep well too. 😊

bienassis
bienassis in reply to Kags1068

Just a quickie, Kags. Your decision not to have children because of the disease, was much the same as my decision not to have another child - Isabel is an only one. My first symptoms (although not recognised as such at the time) appeared when she was 3 months old, and when she was 7 years old I had the severe flare-up that led to the diagnosis. We had recently moved and thought now that we were settled in our first house we would go for a second child - and then the blow fell!

Heigh ho!

bienassis x

Kags1068
Kags1068 in reply to bienassis

Hi again

Don't worry - you can write as much as you want as far as I'm concerned!

I'm sorry it happened that way for you, just when you were thinking about a second child. That must have been hard. I can see why you decided not to though, as it would have been very difficult to take care of another child too.

There were several factors for me. I'm grateful that I wasn't particularly maternal as I think it made my decision easier. I had to have bilateral hip replacements at 19 which was one complication; then at 23 my eyes became seriously affected and I had to start other DMARDs (including steroids) as well as MTX and it would have been impossible to have stopped them were I wanting to conceive. When I met my hubby at 27 the eye problem was still present and I'd lost the sight in one eye by then so there was no way I was going to risk the other by decreasing drugs. Apart from all that, it was just the practical side of how on earth would I manage physically. I'm not sure I could have picked up a newborn let alone one any heavier! Plus, how would I cope with various hospital stays and ops? It just didn't seem fair to anyone.

Finally, I have to confess that I'm not very good with children! I seem to manage better with furry things - hence my 2 cats!!😉😁

Karen x

bienassis
bienassis in reply to Kags1068

Dear Kags (Karen)

You really have had such a long, hard time; by contrast, my life has been quite simple. You would have found it exceedingly difficult to bring up children with all those problems, and, as you say, not fair to anyone. I've seen mothers struggling with young children and rheumatoid disease at the same time, and it's not easy to watch. After my first serious flare, when Isabel was 7, I was admitted to hospital for 3 weeks "bed rest" - a common treatment at that time. My husband coped with the help of a very good neighbour. He was commuting to London so it was quite difficult for him. Fortunately, the rest in hospital worked well, and there followed 10 years of remission with the help of "gold" injections. Isabel was 17 by then.

I think you are a bit like my daughter! she doesn't have children, and has never been attracted to the idea. She has a couple of godchildren; and now they are adults she has a very good relationship with them. Once she said to me "Mummy you never go on about wanting grandchildren - thank you for that." It would never have occurred to me; although some mothers do think they have a right to them, I know.

As for your furry friends! We only have one at the moment; he has trained us well and leads us a merry dance. But he is adorable! And just now with this covid crisis our life does revolve around him. He doesn't like visitors too much, so that suits him and, apart from my hospital visits, we are here most of the time.

I was interested to read your post; and so sorry you have suffered so much. And you handle it all with great courage. Needs must, you would probably say, but not everyone could do the same.

Do take care, and enjoy the rest of the weekend - sunny and warm in this part of Kent.

Marian (bienassis) x

Kags1068
Kags1068 in reply to bienassis

Hi Marian

Thank you so much for your very kind words. I appreciate it.

As you say, we all do our best to try and muddle through it all as you obviously have too!

It's nice to chat with someone who remembers the 'old' days of Gold and bedrest! That's what I primarily spent my weeks in the rheumatology ward for - along with various tests and physio etc. Don't know about you, but I always found that once admitted they were reluctant to let you go ........! I'm glad you had help from your neighbour. That really is invaluable at times. I'm also glad you had such a long spell of remission on the gold.

Funnily enough, I have enjoyed watching friends' children grow up too and am a god-parent. I've had the nice pleasant bits without all the (very) hard work!😊 Thankfully, my parents/in-laws etc have never brought up grandchildren with me either so I've never felt any pressure, so I can appreciate what your daughter means.

I'm pleased you are part of the cat slave club too! They really do train us don't they? We are much the same - around most of the time so they get (and demand) lots of attention! Ours are 2 brothers and they are devon rex/siamese cross, so a bit of a lively, noisy handful. Wouldn't change it though (mostly)! We are completely at their mercy, but they definitely give you a purpose and keep you going especially through the shielding/lockdown as you found as well.

Anyway, enjoy your the rest of your weekend too. Sounds lovely where you are. We are in north Warwickshire and it's nice and sunny here too so I may venture outside for some lovely fresh air.

Very best wishes

Karen x😊

Jaxine
Jaxine in reply to Kags1068

Hi Kags,

I was interested in reading your post. I have two daughters so I am myself worried that they may inherit RA from me! I've read that they are now at a much higher risk as a consequence. My daughter had a few aches and pains a few months ago, they did go away thank goodness but it s always on the back of my mind!

Kags1068
Kags1068 in reply to Jaxine

Hi Jaxine

Yes, I can certainly understand why you would be worried about that. If I'm honest I don't really know anything about how much more risk they could be at, but I was asked about family members a lot early on and once took part in a study where someone came to our house and took histories, and my parents and I had to all provide a blood sample. That was some years ago though. Also, there have been a couple of family members (cousins/cousins children) who have had vague symptoms and were tested for RA straightaway because they mentioned a family connection. Thankfully, so far they are all fine.

I hope the odds will be firmly in your daughters favour and they both remain completely healthy. 🤞🤞

I just wanted to say I’m glad you posted this Jaxine. With everything that is going on in the world right now, I think all our anxiety levels are heightened anyway but my personal experience of steroids is that they definitely make me feel more vulnerable and anxious - that feeling of ‘something bad could happen at any minute’. So please take comfort that you will ride this feeling out as you are able to say goodbye to the steroids (which I will be keeping my fingers crossed is soon!). Big hug xx

Jaxine
Jaxine in reply to Monkeysmum

Thank you Monkeysmum, I start tapering down tomorrow thank goodness! Just anxious to start another new journey of meds x

Monkeysmum
Monkeysmum in reply to Jaxine

Will be hoping for the best for you. X

Jaxine
Jaxine in reply to Monkeysmum

Thank you Monkersmum. Xx

J1707
J1707 in reply to Monkeysmum

Steroids do that to me too

Monkeysmum
Monkeysmum in reply to J1707

I’m sure we must have been twins in another life, lol 😂

J1707
J1707 in reply to Monkeysmum

😂😂

Deeb2908
Deeb2908 in reply to J1707

I had forgotten steroids can make you anxious too so after big doses recently and the sulfa issue maybe that is why I am more anxious and low mood.

Was starting to taper off 10mg but that went out the window when sulfa was kicked off the and out the pill box! 🤪

J1707
J1707 in reply to Deeb2908

You could be right it may not have helped

Jaxine
Jaxine in reply to Deeb2908

Yes I'm tapering down now, it's ridiculous breaking a 5 mg tablet in half! I still have not heard from my consultant as to next step, so chances are I'm going to be without anything by the time that happens. I m going to give my injection another go, I have no side effects from it and I do believe even with drugs flare ups can be expected.

Jaxine
Jaxine in reply to Monkeysmum

😂😂😂😂

Hi Sopsx,

Bless your mum! My father had Chrones disease being diagnosed at 26. He didn't receive the golden age of drugs we have today. When he experienced a flare they would operate cutting away the obstruction in his intestines. Years of steroids and not the biologics that are used today to treat Chrones consequently both his kidneys packed in. One year later he was diagnosed with dementia . My father died 18 months ago.

But it was funtastic that when your mum was taken off all meds there was no change in her condition. Thank you Soos it does help x

Sops
Sops in reply to Jaxine

hi Jaxine, so sorry to hear of the awful times your dad had to endure. My mum had tamaxifam for cancer remission and meds for arthritis and spondylitis when at her house.she was registered blind and unable to walk. She was lucky if she saw an aspirin in the home and that was if I insisted.. she has been admitted to hospital twice with pneumonia and was basically fed cups of tea when placed in a remission home.where she remained. I fought the system until exhausted and lost every appeal.not easy. Sopsx

Jaxine
Jaxine in reply to Sops

Hi Sops,

how utterly dreadful for your poor mother. Feel proud of the devotion you showed though you didn't stop fighting!

Sops
Sops in reply to Jaxine

no i did not. My dad passed at 58 years when i was 21, and mum was a widow for 40 years. I have been on my own for 12 years e saw a lot of each other although the poor car clocked up some miles, Bless Her,

Sopsx

Jaxine
Jaxine in reply to Sops

Gosh your father was so young. You have been through alot x

Sops
Sops in reply to Jaxine

Yeah, i am a widow too

Jax I’ve enjoyed reading your post and all the positive replies. I too was only recently diagnosed at 55years old (June) and gutted that I have this crippling disease....im sero positive with antiCCP of 340, also told aggressive but being sero negative can be just as aggressive I’m sure.... and I too have looked online at that dreaded number. My partner looked at me as if I was daft saying how on earth can you predict If the RA cuts your life when you really don’t know what age was for you anyway. I know a lady who has had RA since she was 28.....she’s had a lot of drugs, a lot of replacement joints etc.... quite badly turned joints.... she’s 78, active, happy and real positive gal for me to chat to when I feel sorry for myself...she inspires me 😊

Jaxine
Jaxine in reply to Piglet007

Gosh to have a friend like that! Gosh you really are a newbie my post must have been the last thing you wanted to read! I remember when I got my diagnosis 18 months ago, I was a wreck!That made laugh about your husbund s reaction, as my my hubby was exackly the same! I looked back at him and said' it s alright for you, you dont have this discusting disease or the worry or u ncertainty of dying too young'! Hence my post went straight up! 😂😂 it always however, baffled me as how someone aged 25 who got diagnosed 40 years ago (where the drugs were no way near as golden as they are now) and still living active happy lives compared to say me 55 years at diagnosis and being told I've only got 15 years left! Looking at average age morbidity and taking 15 years off my lifespan. Does seem crazy when I think about it.

My rhemy nurse did tell me last week that as I am sero positive my RA is more aggressive. I did read about the sero neg/sero pos and it does read that sero positive is more aggressive. However, as you say I am not decrying those diagnosed sero negative! Carry on being inspired.

Hi

I have been Sero positive RA for 46 years, I am now 73 and still looking to keep going into my nineties, it's all to do with keeping a positive attitude, keeping everything moving, when pain allows, and knowing when to rest.

I'm sure also the new drugs theycwre developing will help keep it at bay

So just forget about it and do as much as you are able x

Jaxine
Jaxine in reply to myranicholls

Wow you look fab! You've had RA for a long time lovely to hear you with such a positive post. X

I have RA, PMR, APS, Type 1, COPD , Lupus, and Heart Disease. I Have had 2 strokes, a heart attack, and 3 pulmonary embolisms. I am 63 this month but, if the medical statisticians are to be believed I died 3 or 4 years ago, at least. These expected lifespan predictions are absolutely ridiculous. There are just so many variables that would have to be taken into account and so many other factors which would have to be considered that any such prediction would be completely worthless. If you were to just pick a number at random it would be as accurate as these so called expert opinions.

Jaxine
Jaxine in reply to mickam

My God what a journey you've been through! You're absolutely right Mickam. X

Hi Jaxine

Just thought I would add to the mix. I was diagnosed at the beginning of 1983, a couple of months after turning 14. I'm 52 next month. No medical type has ever suggested anything regarding decreased life expectancy to me. I have agressive sero-positive disease. I had both hips replaced at 19, and many other orthopaedic ops since, and most joints are pretty damaged. I've also lost the sight in one eye and had several eye ops too. I'm OK though. Still shuffling on ......!

As others have said, back in the 80's I can certainly testify there were not many DMARDs. It was Gold injections, Penicillamine and after a while Salazopyrin. If those didn't work, it was steroids. Things got better after Methotrexate arrived in about 1989/90. As a result, people perhaps did get more of the other complications then, but still didn't necessarily die earlier! Most of the people I met at the clinics in the 80's were long term regulars and all got to an older age. I will say though, when I attend clinics nowadays, generally the people look so different to back then. Often I look at them now, and I can't tell if they are there for rheumatology as they look so much better and 'normal.' Believe me, back in the 80's you could tell by the level of deformity, etc. Now though, the drugs are so much better and I'm certain that people have far less chance of getting the kind of damage & complications that were more common then.

I know it can spook you to suddenly read such things, but as everyone has said, it has to be kept in perspective. Also, I think if you read things like that when you are having a bad day, it seems so much worse. If you were feeling better you may well have shrugged it off.

We all seem to find a way to cope. Often better than we may initially think. It takes time to adapt and get used to it - especially when you are feeling rough. You will though. x

Jaxine
Jaxine in reply to Kags1068

Omg! Literally my whole body embraces the age you were at diagnosis Kags. It must have been literally shite for you. Here's me complaining about lifespan! Wow you are an inspiration and I mean that in more words that i could possibly try to convey. Respect for you and the journey you have taken. Thank you for your kind words incredible. Xx

Kags1068
Kags1068 in reply to Jaxine

hi Jaxine

Well, thank you for sending me such a kind reply. Yes, I can't deny being diagnosed at 14 wasn't crap, but you find a way through don't you as what else can you do? Let's face it though, as you've found out an RA diagnosis is still crap at any age! 😳

Please don't apologise for feeling scared by certain things - we all do and as I said, things always seem scarier when you are feeling rough as sometimes you can't see an end to it.

You will get there and you will feel better than you do now. I'm just sorry it's taking a while for you xx

Jaxine
Jaxine in reply to Kags1068

Thank you Kags for offering me your kind words. I was 55 when diagnosed, i was an adult who even then found it so difficult to get my head around it all. But 14! goodness you were so young and it must have robbed you off your childhood in so many ways. I feel it does put things into perspective regardless of my own journey xxxx

Kags1068
Kags1068 in reply to Jaxine

It's bloomin difficult whatever our age, I think! It's a big thing to take on. In a way I'm not sure I grasped the enormity of it all for a while when I was younger. I was convinced for a time that it was going to 'burn out.' I think it's well and truly sunk in now though!😉😄xx

Jaxine
Jaxine in reply to Kags1068

Yes I can understand that, our nativity when we are younger. X

Kags1068
Kags1068 in reply to Jaxine

Yes, exactly. In hindsight it perhaps wasn't a bad thing xx

Jaxine
Jaxine in reply to Kags1068

It s bad enough when you at 14 experiencing hormonal change without the anguish of being diagnosed with RA!

Kags1068
Kags1068 in reply to Jaxine

Haha - yes, I wouldn't argue with that!😉xx

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