How serious is Rheumatoid Arthritis

[Jen864]

Hello, this is my first time on here!
I'm just wondering how serious Rheumatoid arthritis is? As my Aunt (age 60) has recently been diagnosed with it, and has literally not stopped talking about how serious it is, and is basically making out as thought she's an extremely ill woman now. I was feeling really worried about her, until a friend who's Mum also has it, told me it's not a death sentence or anything, but will be uncomfortable for her. So now I'm confused about it. Should I be worried, or is it not that bad? Many thanks in advance

It can kill. A similar disease, psoriatic arthritis, killed my father when he was 54 - the inflammation caused heart issues and he dropped dead.

The medication can kill you of infection, organ failure or lymphoma.

It's a shitty thing to have. More so when people say it's nothing serious and their 76 year old grandma had a dodgy hip and they're fine since a replacement joint.

It's pretty bad. My FiL's quality of life was very shit in his early sixties because of it. He was lucky that some very heavy (unpleasant side effects, etc) drugs worked for him to manage his symptoms. They don't work for everyone.

I have it. It was diagnosed when I was 56 and I'm 61 now. Caught early there are many, many treatments. Mine has been managed very well with one drug called hydroxychloroquine.
When I was first diagnosed I was quite worried, visions of ending up crippled in a wheelchair. That could still happen but shouldn't if it's treated properly and frankly I have other more serious health concerns atm.

Most of the time I have zero symptoms.
The illness flares up sometimes - known as a flare. Joints hurt, aches and pains especially first thing in the morning and fatigue. The fatigue is actually the hardest part to cope with. In my case a flare usually subsides after a week or two.
When first diagnosed it can take a while to get the right drug and then they take a while sometimes months, to work. When they do they are excellent.
Your aunt could be in a lot of pain and feel very fatigued but she will feel better once treatment starts to work.

The way to describe how you're feeling is somewhere along the lines of

Hit by a bus.
Reversed over by the bus.
Shovelled up and dumped in a cement mixer full of sharp rocks.
Having not slept for ten years.
And run an ultra marathon every day.
With full blown flu.

Whilst doctors have been saying to you for 5 to 30 years that 'it's your age, dear', 'it's looking after children, dear', 'you need to get some exercise, dear', 'you need to lose weight, dear' and, best of all 'you're depressed, dear. Take these antidepressants and have you ever considered counselling?'

It can vary from person to person. Some people I know have it quite mildly, some more severely. Some people don't respond very well to the drugs, some do. The drugs have quite serious side effects, depending what you are on. You can be in constant pain even with all the medication. It is a serious illness that can be well controlled but isn't always.

I would give your aunt a break. It's a big diagnosis to adjust to.

btw my mum has it. It was a big deal when she got it and definitely changed her life for the worse. But she has accommodated it now. The drugs work for her.

It makes getting treatment for other conditions more complicated sometimes.

Another family member had it in its most extreme form - basically it ended the life she had previously had in her mid-thirties. By the time I knew her in her forties she was always in pain and she had had virtually all the joints you can replace replaced.

On the plus side apparently if you are having chemo it can have the side effect of dampening down your arthritus pains! (some chemo drugs are apparently similar to some RA drugs)

It varies hugely from person to person.

But if you have just been diagnosed it is a massive thing to get your head round.

My friend has it and it's changed her life. She went from being active and outgoing to struggling to do simple tasks like get dressed. Some people respond well to the medication but not all.

My Dh's aunt has it and though she's on the right medication now and is doing well her hands are very damaged by it.

I have boring and predictable osteo-arthritis in my knees, one knee particularly shit - I can't go up stairs. And it has hit me like a bloody truck at almost 50. I feel bloody dreadful, and even though it's minor (!) I have cried multiple times. Never again can I ride a bike, climb, ski or the pain is unbearable.

Sometimes you just can't predict how something is going to hit you. We are all going to get old, we are all going to get 'something' and none of us are going to like it.

Thank you for your replies everyone. I've got a better understanding of it now. I'll be sure to give her lots of TLC.

People often make the mistake of thinking it only affects joints and mobility. However it also can affect other organs of the body, for example the lungs, heart and eyes.
It can be a horrible disease. I am lucky that the modern biologic drugs have worked for me, lucky that the NHS provide them to me at a huge cost, and lucky that replacement joints can replace damaged joints. Some people have a mild version, some people kid themselves they can control it with diet and exercise. You cannot, the latter obviously improve your general health but specialist drugs are the way to stop joint and organ damage.

@LayAllYourLoveOnMe On the plus side apparently if you are having chemo it can have the side effect of dampening down your arthritus pains!
I don't think having cancer is ever a plus. I've just finished chemo. I had to stop my RA drugs beforehand and it's true the steroids ( not the chemo) damped down all auto immune stuff. However now chemo has finished I have to wait for the RA drugs to take effect again and I'm currently in the worst pain I've ever had with RA.

I was diagnosed 2 years ago mid 40s. Mine is mild and no joint damage yet. It’s tiring, I can’t absorb b12, can’t lose weight, have low metabolism. In the first year I could do one big thing a day and then be wiped out for the rest of the day. That’s improved a bit now. My joints ache and feel stiff, I have weakness in my hands and arms where I was strong before. My whole body is sore really so I don’t like being touched anymore. The meds plaquinil/hydroxychloroquine can make you blind so I have to get a yearly eye check. Damage to sight can’t be reversed.

It hurts and it doesn't go away.

Sorry to hear that Skap. Hope it isn’t too long before the RAdrugs kick in again.

Mum also has it, told me it's not a death sentence or anything,

RA itself won't kill you, but complications as a result of it most certainly can.

How does it feel? I have severe RA and I explained it to someone as it feels like someone hitting your joints very hard with a lump hammer and then deciding to keep doing it. At times it has been the worst pain I have ever experienced. It's not to be under estimated by any means.

I've just started biologic drugs and I am hoping that after 3 years of trying other drugs, the biologic will work. I've certainly learnt that I can give myself injections, it's second nature now.

If your aunt says she is in severe pain, believe her, because until it's under control, she possibly will be.

It runs in my family, both sides sadly.

Uncontrolled inflammation is dangerous and three members of my family have had multiple heart attacks because their disease was very badly controlled.

I've had lots of eye problems when mine wasn't controlled.

That on top of feeling like you've been run over repeatedly by a tank at times can make it a miserable disease.

However getting effective treatment can be a game changer, it won't help damage already done but it will help to slow the disease down to help to prevent any further damage.

Glad to hear you're going to give your Aunt lots of tlc because all too frequently we're made to feel like we're being overly dramatic and precious. Lost count of how many times I've been told they have a sore finger joint and everyone is tired.

I get the sore finger and everyone is tired Villanomme. I also get told it must be the weather/spring/autumn/summer/winter (yes, all of those).