Lupus life expectancy

[Tulipano]

Can you die from lupus? I am newly diagnosed so I feel so scared.

[Silvergilt]

You can from anything.

I know this sounds terribly flippant, and I understand your fear. In a society that is terrified of death, regularly bombarded by warnings about things which will give us cancer, etc etc, even getting out of bed may feel like a huge gamble.

A lot of things could kill you. Influenza could kill people, for example. But take enough precautions and you have a chance it will just make you feel like pants for a week.

Lupus is like that. Sure, if uncontrolled, it can be life threatening but you've already got one thing on lupus: a diagnosis. It's a small step, but a step nevertheless. Now comes treatment and management which will give you a good chance.

There are people on this forum in their 70s. It's an illness but it doesn't have to be a death sentence. Focus on one day at a time and you'll get there. The fear is natural, being afraid is ok...but don't drive yourself mad trying to count the minutes you have left, or you'll miss out on LIVING by worrying about when dying might happen.

I wish you peace.

[Tulipano in reply to Silvergilt]

Thank you so much 💋❤

[Kazunlocked in reply to Silvergilt]

Silvergilt, so very well said. Don't be afraid Tulipano, Lupus is more well known & understood every day. It can be tough, very tough but you will improve. Best Wishes to you. Kaz xx

[Wendy39]

Hello

I totally understand your fears.

Silvergilt has given you a great reply and there's little to add really.

Back in the 1950/1960s 95% of SLE patients died within 5 years of diagnosis.

BUT now SLE patients have a next to normal life expectancy. This is due to increased awareness and education and some great advances in medication etc.

A diagnosis is great. That's a first step. Then you need to comply with your treatment plan and take your meds. Life style management is important too. So educate yourself about lupus and be self aware.

But please do not make yourself more ill with the stress of worrying about this. Stress is really bad for us. Learn how to relax and control this.

I know I make it sound easy but back in 2013 when I was diagnosed I had similar fears and anxieties. It overwhelms you at times. Panic attacks etc. I was worried for my 3 young children, both afraid of leaving them and of passing this illness on to them.

But I'm nearly 4 years on now.

Everyone's lupus journeys are different. Some have mild lupus and it doesn't progress. Some go into remission. Etc.

None of us know where our journey will take us.

So deep breathes and just make the most of your good days. Be kind to yourself on your bad days. Don't feel guilty for taking time out when you need to, that's all part of the self management.

So glad you posted and shared your fears.

You aren't alone.

Wendy x

[Buffy14]

You have received excellent replies already I would just like to tell you that my mother in law was diagnosed with lupus in her early 40s and she is still here now at 84 years old , things are much improved now and no doubt are still improving , who knows one day they may find a cure , take care x

[manna_14 in reply to Buffy14]

u made my day. I am very anxious, I was not feeling well for few months from Feb to may. then I got better for few months and back to where I was.Very anxious now.cant take off lupus from my mind.my kids are small.worried about them.

[JenniferW]

Hi Tulip

Almost certainly not. There are lots of treatments available and doctors are very focussed on early treatment, which means we are all much more likely to live a long life. So try to not to panic. It's not as bad as wikipedia says Take your pills and you should be okay.

My explanation of the scary figures:

After the initial horrified shock of my diagnosis had subsided I started reading around a lot and looked at the Lupus Encyclopaedia. What quickly became clear was that it is a very hard thing to diagnose. Back in the 50's when you read that most people with lupus died within 5 years of diagnosis (as Wendy mentions), the people who got diagnosed were people who were ill enough with it for doctors to be able to see from the symptoms what was wrong i.e. very ill. However nowadays we get diagnosed from blood tests. So people like me who have it mild to moderate and our organs are unaffected will be diagnosed, whereas I wouldn't have been back in the fifties (I also have Rheumatoid arthritis and an underactive thyroid, so my lupus symptoms would probably have been put down to those)

What I am trying to explain is that the high death rate in the past was due to the fact that only people with bad lupus would have been diagnosed at all, so the stats are a bit misleading. Probably a lot of people who had mild lupus and who lived a reasonable length of time never knew they had lupus.

And these days the bit on the leaflets that says you might not have a full life span just means you will die at e.g. 87 instead of 91 because your arteries get furred up just that little bit quicker.

Good luck, Jenny

[CRYSTAL11]

I was diagnosed with Lupus over 25 years ago and I’m still going strong. I have had Lupus for most of my life. It took ages to get diagnosed. Whilst It’s a Nasty disease the doctors keep a good eye on you so any problems can be picked up quickly. There are lots of different medications now with more being found every day. It’s a time when things for everyone are changing and I think the future is looking much brighter for all autoimmune sufferers 😘

[IChoose]

My mother is now 85 and I have lost track of how many years ago she was diagnosed with lupus. She has a rheumatologist, gets regular appointments and blood work, and takes her medications and vitamins as prescribed.

Im thinking that you can apply for disability with your diagnosis.

I recently had diagnosis of heart disease on top of life long respiratory disease. The respiratory disease has set me back my whole life especially debilitated me this year. My cardiologist told me he thinks my heart us getting tired.

I think this year has sent me into a tailspin of combo anxiety and depression and I am seeking counseling especially to help cope with the heart disease issue along with everything else. I'm open about saying I'm frightened.

[Chanpreet_Walia LUPUS UK]

Hi Tulipano,

We published a number of factsheets which discuss various topics with regards to lupus which I hope will provide some clarity: lupusuk.org.uk/publications/ .

The Lupus Encyclopedia states “Recent studies of SLE patients show that 91% to 98% of patients diagnosed with SLE will live ten years or longer”. People who have SLE tend to have a normal or near-normal life expectancy these days, as doctors are able to diagnose lupus at an earlier stage.

Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail] . We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u....

Wishing you all the best.

[Tulipano in reply to Chanpreet_Walia]

Many thanks. I am planning to join the lupus uk as a member. Hopefully that will help me too. Xx

[Chanpreet_Walia LUPUS UK in reply to Tulipano]

Hi Tulipano,

You are very welcome.

For convenience, I have included our membership link: lupusuk.org.uk/join-lupus-uk/ .

All the best