Lupus in the family

[Bessy01]

Hi first post I have SLE diagnosed 2010 aged 52 yesterday my daughter was diagnosed with the same she is 34 her consultant said it was rare to have two from the same family is he right?

[PMRpro]

Strange - this is what LupusUK says:

"There is no doubt that lupus runs in families suggesting a genetic contribution to the disease..."

lupusuk.org.uk/medical/gp-g...

How much experience has he in the field?

[Bessy01 in reply to PMRpro]

Don’t know I see another consultant. The consultant I see is very interested in Lupus and is in constant contact with the research centre in London.

[PMRpro in reply to Bessy01]

I suppose it is too much to hope that your daughter could go to yours? She certainly needs better care than from someone who doesn't know there is a genetic factor involved! In England you do still have the legal right to see the team who you want - and that includes the London centre if you can travel.

I'm sure Paul and co can help with finding someone good more local if your daughter lives a long way from you.

[Bessy01 in reply to PMRpro]

She lives round the corner and goes to the same hospital. It was her first visit yesterday so we will see how she goes on..I’m going shortly for my appointment so will mention it to my consultant.

[Johnnyb10 in reply to Bessy01]

Hi in my case my brother died of lupus in1978. I was diagnosed in 2011 and was told had probably had lupus for 5 years previous. Not sure link has been proven but I am sure it can play a part

[Paul_Howard Partner LUPUS UK in reply to PMRpro]

Hi PMRpro , I personally don't like the way that first sentence is phrased. We certainly do observe some families with a higher prevalence of lupus (or other autoimmune diseases), but this is still fairly uncommon. Most studies show that around 1 in 20 people with lupus will have a close relative who also has the condition - the link you referenced also reflects this suggesting around 3-10% of family members of a lupus patient also developing lupus.

Therefore I would agree with what Bessy01 's doctor said, it is reasonably uncommon for two people from the same family to develop lupus, although it is certainly not unheard of.

[PMRpro in reply to Paul_Howard]

Fair enough Paul and I bow to your far superior knowledge of lupus - but it isn't just LupusUK where similar information is to be found.

Although there are limitations which are obvious, this systematic review and meta analysis

bmcmedicine.biomedcentral.c...

agrees - as I understand it not just for polyautoimmunity (different diseases in one person) but also for familial autoimmunity (different ads in one family) and familial autoimmune disease (multiple cases of an AD in one family) . They specifically mention SLE. They also mention support for the concept of a common origin for AD, a belief I've held for a long time. Given how often patients with lupus are misdiagnosed (for want of a better term at least) surely there may be an iceberg of families with multiple family members with an AD of some sort who haven't been given the same label but in fact there are close similarities in their disease?

[Paul_Howard Partner LUPUS UK in reply to PMRpro]

There is an increased likelihood that close family members of someone with lupus will develop some form of autoimmune disease other than lupus too. Some of these could certainly present with similar symptoms.

[Blessedeyes0511 in reply to PMRpro]

This is not rare at all. My older sister has lupus too. My cousin just tested positive for antiphospholipid disease and has positive ANA which they are figuring out. There is definitely a genetic component. Good luck! How is your daughter doing?

[Bessy01 in reply to Blessedeyes0511]

She is ok now she knows what she is dealing with at least we talk about how we are and know what each of us is feeling.

[Fennella02]

Definitely a genetic link. I got SLE some years before my father developed aggressive RA but it's always mentioned in my notes.

[Leave-me-alone in reply to Fennella02]

I am the same I have lupus and mum have very aggressive RA.

[GlasgowHen]

Hi best, I have lupus diagnosed years ago and my mum who is 66 was diagnosed this year. From my experience there is a genetic link

[Ianrussell69]

Chi prototype sure my dad had ctd my sister is having tests for autoimmune. My daughter possibly has ctd and I was told I have lupus but now thankfully it looks like ctd so yes I think it dose run in the family

[shaunalouise26]

I gave lupus and other CTD, so do my mum and daughter. Other daughter has coeliac. All autoimmune. X

[diane1428]

My consultant says it cannot be probed but I’m the third generation and my daughter is the fourth

Regards Diane

[MoyaP]

My Aunty has it, I have it and my Niece has it. I don't think it's just a coincidence.

[Buffy14]

I wish I knew the answer to this my daughter has been having flares like mine for 5 years now and noone is taking her seriously , no diagnosis as yet , they admit she has something but have told her lupus isn't hereditary , my daughter feels she is being fobbed off as someone who just thinks she's got lupus because her mum has it . The thing is my ex husband's mum has lupus aswell , my daughters paternal grandmother and so she has lupus in both sides of her family . They say lupus is genetic but not hereditary , I don't get that , what's the difference ? My daughter doesn't get affected by the sun at all which makes me think it may not be lupus , she is always worse in the winter months . She hasn't had a flare since last February luckily , I'm hoping she won't have any over the winter as she is pregnant now with her second child , her flares started after the birth of her first child .

[Paul_Howard Partner LUPUS UK in reply to Buffy14]

Hi Buffy14 .

The distinction between whether something is hereditary or genetic depends on the number of genes involved and how the condition develops.

Conditions are considered to hereditary if the disease is determined purely by genetic factors. Examples include sickle-cell, cystic fibrosis and Huntington's disease.

Lupus is not strictly a hereditary disease, because whilst there are certain genes that are linked with the development of the condition, they also require an environmental trigger. A child of someone with lupus may not inherit the genes to predispose them to lupus, or they may but then not experience the environmental triggers which actually trigger the development. Studies looking at identical twins have shown that if one has lupus, only 25% of the time will the other twin also develop it despite identical DNA.

Light sensitive rashes occur in around 60% of people with lupus, with around another 20% saying that they experience some other form of light-sensitive symptoms such as headaches, fatigue or joint pain. Therefore, not experiencing lights sensitivity doesn't rule-out lupus as a possibility, but it may make it less likely.

[Buffy14 in reply to Paul_Howard]

Thank-you for that explanation .

[ExtremeDuvetDaze]

My Dad had SLE and I’ve been diagnosed with UCTD and more recently CREST !

I hope your daughter gets some answers soon.

Diane x

[Hidden]

Lupus also is a part of HLADR2 and DR3

So it can run in family

[roony13]

I have SLE and hypothyroidism, my daughter has coeliac and hashimoto's. I have 2 cousins on maternal side, one with discoid lupus and the other also with discoid and now showing kidney problems. These 2 cousins are siblings. My maternal aunt had systemic sclerosis. There is definitely a link in my family for AD.

[Bessy01]

Thank you all for your comments I will see what my consultant says next week and report back.

[caninecrazy]

i believe it does run in families as my twin had lupus, i have it (and other immune related conditions, my younger sis has lupus; her twin our brother has ME and our cousin has lupus x

[Lorska1]

My Mum died aged 43 of lupus in 1995. She has 3 sisters, 2 of them have lupus. My mum had 2 daughters (including me) and both of us have lupus. My nephew has another auto immune condition but not lupus. I am sure that genetics play a big role xx