If this RA is genetic as most people think then I feel extremely lucky to have been diagnosed at 75 years,.
As a child growing up, I can only remember my mum being doubled up in pain and having to go on her hands and knees and climb slowly upstairs to bed. She died when I was 21 of cancer . I am 80 now and the help I receive is tremendous as compared to how it was in the early 40s
With all of this progress being made in today’s scientific labs , especially gene therapy, how come that they haven’t come up with a cure yet. I was disturbed to read that the pharmecutical companies are afraid that they will lose money and people will lose their jobs once people like us will no longer have to rely on dmards and steroids,. Surely health should take preference over wealth????⛑⛑⛑
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Lostitat75
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My mother and grandmother had RA. I was diagnosed at 41, and had rapid onset, and total immobility for two years. My sister has never had any symptoms (though her daughters have); she’s a year older than me. As always, it comes down to a range of factors… I think there is a genetic predisposition, but that doesn’t necessarily mean you will get it. I have a history of sustained trauma, so that may have triggered things. I certainly put my Fibro down to that, which went ‘unlabelled’ for about a decade.
Pharmaceutical companies make lots of cash as well as lots of medicines… we have a Global Pandemic atm, but they are not producing a patent free vaccine to countries in need.
Altruism is not their driving force unfortunately.. because of that ‘Covid’ will go on for years. We are not safe until the whole world is safe.
Also, again because of cost, I have been on DMARDS for ten years, and am functionally extremely disabled. People on biologics seem to actually have a life.. this does seem unfair, I won’t be getting those years back…
These days cost is not so much a factor where Biologics are concerned. Now that Biosimilars are proving so effective the cost of both has come down dramatically.These days your DA score is most likely the reason you haven’t been prescribed a Biologic drug......if you feel you need a change of medication......have you spoken to your Rheumy team & received a satisfactory answer?
If we don’t discuss a change of drugs with our doctors....they just presume we are doing OK on what we are taking.
Though not Ra in the family a lot of OA and severe cases of it. So maybe a gene factor could be in play for some. Many f the severe OA have been checked for RA as that bad.
As I understand it RA is not genetic but there is a genetic tendency. So it is probably lots of different genes which make it slightly more likely you may develop it.
Nobody in my family had RA before me, however my Daughter was diagnosed with JIA a couple of years ago at the age of 12. Oxford University are currently looking at genetic links, our rheumatologist (we are very lucky to have the same one) asked if we’d be willing to take part in the research as although they believe there are genetic tendencies it’s very rare for a mother and daughter to both have it. Still waiting to hear back from Oxford university to find out if they want us!
We have a range of auto-immune conditions in our family. They have been a few of us with RA...
As for the Pharma' industry, they are too powerful. However, scientists are competitive and proud of their discoveries, so I rather think they'd be looking to publish results of trials that resulted in a cure for a disease that affects many millions in developed nations alone, it would bring them fame and a place in history. If a genetic switch to 'off' had been found for RA., we would know, but it would be a very, very costly treatment, at least for a start.
I’m adopted and it was assumed mine was brought on due to stress. I think stress was the trigger.
I do know my biological mother and brothers. My mother had rheumatic fever at a young age and had part of her lung removed. My brother has psoriatic arthritis so looks like there could be a genetic link there somewhere.
No one in my family had RA. I was diagnosed in my 40's. My two daughters diagnosed in their 20's. I believe we have a genetic predisposition to it and stressful events brought it out 😔, my eldest daughter doesn't have it.
An interesting question and one that is often discussed. My father had RA and died at 72 from the side effect of the drugs but he had probably had it for many years before diagnosis as he was very Doctor phobic. My brother has psoriatic arthritis. I believe that RA is commonly referred to as familial (like MS - and other autoimmune duseases - which is also in my family) and until the link to a specific gene can be established it cannot be referred to as hereditary. The chances are that if it is in your family it can then be triggered by other factors - hormonal, environmental or stress. Unfortunately until the link to a specific gene can be established it will be impossible to find a cure. I am just grateful for the advances in treatments available.
Yes, I believe it can be genetic although there is no history of it in my family. I think my mum possible had it but it was never diagnosed. I heard this about the pharmaceutical companies 30 years ago. A friend of mine whose son was a medical scientist in Scotland was part of a team that discovered a cure for the common cold and they weren't allowed to develop it for the same reaaon. It always comes down to money doesn't it. Greed will be the death of us, literally.
My father was diagnosed at 75 with RA and now he’s 80 it’s completely in remission. In contrast I was diagnosed with connective tissue disease with both RA and lupus symptoms. Mine seems to be a lot worse than my fathers.
My fathers first female cousin had RA. He didn't have it. Nor my mother. My autoimmune disease effected my heart. My daughter has EDS. No one in the family has EDS. She says it's a mutation. She is the first one. Doctors say she had it all her life. Her anxiety and depression is caused by that too. I had signs of RA. It really reared its ugly head after a a bad flu. Sometimes it needs a trigger. The very best to all 🙏
This is an interesting question- I think it maybe a genetic link but something has to trigger it off. I was diagnosed 6 months after giving birth via a caesarean 20 years ago aged 43. My other family members do not have it but My Mom had it quite cruelly. I have read that it is not inherited so we need to find out what triggers it in our bodies.
My parents didn't have RA, I was dx. in 1971 age 6, but I have first cousins on both paternal and maternal sides who had children dx with RA. My grandparents had 'rheumatism', 'the screws' as my nan would say, but who knows they might have had RA.
My grandmother on my dads side had RA . I have 8 aunts and uncles who all had 4 plus children and I’m the only one who has RA.
My mum, 2 of her sisters and their dad my grandad had RA. I was diagnosed at 44 and I think my have been brought on by the sudden death of my mum. I’m mow 71 and been on biologicals for last 10yrs which have made such a difference to my every day living x
It seems a very complicated issue as to it being genetic or not, but in my case, I think it is and that it is on both sides of the family.
My Mum was always in pain but always tested negative with blood tests and I remember that when I was little she was told she had fibrositis (which I believe was the earlier name of fibromyalgia). My Grandfather on that side, used to talk about how his mother used to struggle to walk and used to cry out with the pain she was in but no one seemed to know what it was except for saying it was old age.
On my Dad's side, my Dad had very bad psoriosis, gout, cellulitis and an underactive thyroid gland and was always complaining about pain in his ankles. That sounds as if it could have been PsA. His sister also had psoriosis and cellulitis and was bent over double because her spine had more or less given way, she died suddenly at the age of 64. Another sister had cellulitis, an underactive thyroid gland and migraines. Most of the family had migraines (my Dad didn't) and several had cellulitis in their legs. The unfair thing is that none of my cousins seem to have inherited all of this, apart from one cousin having migraines and another one having cellulitis. In my case I have RA, PsA, OA, fibromyalgia, an underactive thyroid gland, asthma, migraines, cellulitis, gout, psorisis and eczema (and a few other conditions that I won't go into now).
All we can do is to carry on and try to put a smile on our faces, but it is very difficult and for the last few days, there have been more tears than smiles on my face. I am also having a lot of breathlessness now and have to go to the hospital for breathing tests on Tuesday.
Well I was diagnosed at 57 and there was a family aspect my dad had psoriatic rheumatoid arthritis. Rather than calling it a genetic disease it would be referred to as familial.
Interestingly mine developed when under extreme stress at the time and deffo the trigger.
Agree not in pharmaceutical companies interests to find " cures" which is true of a vast amount of conditions.
However I also believe (so my opinion only) that conditions like ours are hard to provide a one size fits all treatment, due to how individually it effects us.
All the best and as you say thank goodness for the amzing progress made in treating us.
My sister, one of my brothers, and my grandmother had/have it. I was diagnosed age 39 (I'm 63). I'd been on biologics for years, though not for three years since I moved up country, as they don't believe I have RA here. Anyway, I think mine was triggered by two C sections, and a bad flu. Certainly stress makes me feel worse.
I am an identical twin, and I have RA, and my twin doesn't! I pray she does not get it either. I wrote to professors who specialised when I was diagnosed and they said lifestyles: environmental etc., plays a part. I believe my triggers; 1) a visit to the dentist having a hygienist do my teeth the next day I felt as if my teeth were on fire 2) I had my own business very demanding and stressful 3) a life full of stress raising two kids alone post-divorce - - 4) I use to get cold sores pretty often the Epstein bar virus… -
Being identical, it would have great to do clinical trials!
I totally agree with all your post Lostitat. I am 65 now and I remember visiting a lady in our village who was confined to a wheelchair and alone all day except for when her carers came and got her up and put her to bed. I often think of her and feel so thankful of the drugs we have. Best wishes.
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