Young people

[Bertiered20]

Hi, my son, who is 12, has recently been diagnosed with SLE. I understand it’s fairly uncommon in younger boys. Are there any other parents of young people with Lupus here?

[SurferGuy]

Lupus is uncommon in males of any age. I believe 1 in 10 Lupus patients are male. I'm one of them, although I'm on the older side... but my wife would say I behave like a 12 year old

What are his symptoms Bertiered20?

[Bertiered20 in reply to SurferGuy]

Hi! He is getting very fed up of doctors telling him how unusual he is! It started with the Malar rash and joint pain last September. Our GP was very good and after ruling out more obvious causes, tested for Lupus. He was initially treated with oral steroids and cream and is now on Hydroxychloroquine. He was doing really well but over the past few weeks has had some more symptoms. Can I ask what symptoms you have?

[whisperit in reply to Bertiered20]

Yes, I'm surprised he got diagnosed that quickly given that he's a young man. Sounds like you have a smart GP - hang onto them if you can

There are some parents on here - Mom2Danni is one who has been active in recent months, I think

Hope things go well for you all and do keep in touch x

[Bertiered20 in reply to whisperit]

My GP is great, he’s a community dermatologist too so had an interest but he definitely went above and beyond for my son. 😊

[Forgot2mention in reply to SurferGuy]

Ha ha, don’t most men. Mine has decided to build a model railway in the loft and he is 62 going on 12. Far too much time on his hands.lol

[tree_shadow]

Quite fortunate for him to be diagnosed as that should allow the doctors to prevent him getting some of the more pernicious effects! My symptoms include pneumonia and my lungs filling with liquid if not deliberately and significantly immune suppressed. Under medication (MMF/prednisoline) I get mild flares such as mouth ulcers, joint paint, light rashes, mild pleurisy. I am also male. But I am happy to live with the mild flares than increase the significant medication I am on, even heavier. I have to shield.

[Bertiered20 in reply to tree_shadow]

Thanks for replying and stay safe. x

[Bertiered20]

Thanks for the link, it’s interesting to read more about the ANA test. I’m still learning as my son’s diagnosis is recent. He had an emergency appendectomy when he was 7, I have read there could be a link between appendix problems and auto immune conditions.

[SurferGuy]

It's great that he got diagnosed so quickly. This should hopefully mean the disease being controlled very quickly resulting in less complications in future. I do though think that your son's dr's shouldn't be stating how rare this horrible thing is in males. It'll just make him feel really down and conscious. BertieRed, later today I'll put up a post specifically for your son. It'll give him a positive view of hope and that he can continue to be a dude

My initial symptoms were severe joint pains and fatigue. This became a little more controlled for the first 2 years but then got worse again, at which point I was given steroids. I remained on 5mg for a few years. But unfortunately after the 10 year mark, even though I was feeling better with only mild joint pains, I was diagnosed with nephritis. This is now under control.

I undertook a trial of Benilumab last year. I was either on the actual drug or a placebo. Although the way I felt after the trial, I'm certain it was the real thing. Either that or the placebo effect is sensational!!! I'll post a link to my diary which is currently on another Lupus site.

After the trial the pains did return and protein levels increased again. But now I'm feeling a lot better physically. Not so sure about the kidneys though as due to CV I haven't had an appointment to check protein levels for a few months.

I'm back to getting myself into shape. Starting lifting weights a couple of weeks ago to gain strength. Might go for my first run in 11 years (yes that's two ones - ELEVEN!!!)

So, with the right care, hopefully your son should be able to continue being a typical annoying, grumpy, active, trouble-seeking guy

[heatherevans28]

Its unusual but happens. Those patients are unlikely to be on this forum though because of their age. These forums can be a blessing but often they only show the patients that are struggling most, so can be quite daunting. The majority of people with lupus live very full and active lives.

Lupus UK has lots of amazing information for you to access, and read with your son. They also have a young person's facebook group (which is fully private) & meetings that he can join once he's old enough to use facebook. There are other organisations that cater for young people with arthritis, but who will often allow youngsters with lupus to join as well. They organise weekends away and sessions about different topics. This can give him a community and place to discuss any worries in a safe way.

The other tip I have is to slowly give him control of his condition from a young age. It will hopefully let him develop confidence in managing it himself and minimise any issues as he grows up.

If you have a specialist nurse then they should be able to help with guiding this, but if not then ask his consultant. It could be as simple as him collecting his prescription (although you will need to sign for it), or telling you when he needs to takes them. As he grows up I would recommend getting print outs of his blood tests so he can track and understand them himself. I did this aged 19 and it was invaluable. Lupus UK has a style symptom diary he can use to track his own symptoms between appointments if this is of use to you.

There is an app aimed at young people called the "PainApp". It was developed by Birmingham hospital for children with chronic pain and teaches skills such as pain management and pacing. It also let's the user keep a diary of how they are feeling and how much they have done today in terms of school, playing with friends etc. Its a really good tool.

I was diagnosed at 19 so used some of these resources personally until I was 25, but I met lots of people who had been diagnosed much younger. It's called junevile SLE when its diagnosed as his age.

All the best xx

[Penguintaz]

Hey there bertiered20

I am sorry to here your son has been diagnosed so young but positive means he get the right treatment and the doctors have more time to figure out his spesfic treatment plan!

I was diagnosed at 19 and am still young at the age of 23. I am a girl but the youngness I can relate!

It will be hard but you will just need to supportive and also firm. It is a very lonely feeling to be diagnosed with such a condition when your peers are mainly healthy.

One thing I really suffered with was fatigue, at the age of 16-19 I would fall asleep at like 8pm and all my friends would say how weird it was but never really realised I had a problem till my health got really bad.

At his age I think a hard thing to understand will be limiting his time in the sun/ wearing sunscreen. Very important for patients with lupus, I am lucky to have minimal photosensitivity, can cause headaches and joint ache. but I get sun burt very easily and always have. Do be sympathetic that he will struggle with brain fog which leads to being more confused and forgetful and tiredness but try not to let him take advantage to get away with not doing homework or chores, he'll have to one day learn to live on his own with his condition.

Also learning that he may have to go a bit easier with physical activity, not that he can't do it but maybe take more breaks when he does feel tired. The other kids are at an age where they may not fully understand why he has to rest so make sure you understand his condition and keep explations simple. Don't talk down to him about his health, try to help him understand more complicated terms or why the doctors need to do certain things.

As he gets older another thing he'll have to learn is not staying up to late and not drinking much alchol. I personally never drink much but the few times I have gotten drunk I feel awful the next day! Almost bed bound with pain and brain fog is overwhelming. Sadly some of the things he will have to learn from life experience and all you can do is warn him haha.

Maybe as he gets older encourage him to make his own account here? We are mainly ladies but all are welcoming

[Pmeh]

Uve got a brilliant doctor took me 2 years too get diagnosed I'm also on hydroxychloroquine I get really bad side effects 😓 which have only started past few months

[Kevin53]

You have a brilliant GP. One of the simple differences is the men go through puberty; whilst the females have children and menopause as well. There are lots of other factors.

It’s so important that it was diagnosed early. My daughter was 15 and was also picked up by the GP. She is now 33 years old, married (my son in law is brilliant) and a solicitor. Over the years she has learned to manage lupus to keep control of her life. Lupus UK can offer plenty of support there’s also a charity called raiise.co.uk that can also provide lots of support for students in school. Best wishes Kevin