LUPUS UK
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18th birthday

Hi everyone

I wish I wasn't here but I am and am probably going to be needing your support. My son has just been discharged from a horrible week in hospital starting on his 18th. He has been diagnosed with SLE after being ill for 2 weeks (swollen joints, coughing, fainting, bursitis, effusions....)Weird to think he was in a bike race 3 weeks ago. He is an athlete and trains for British Cycling foundation programme.

Anyway he had kidney biopsy on Friday and get results Tues then start treatment. On steroids just now. Haemoglobin is 70 with transfusion cut off being 60 but they don't like to "transfuse young people with chronic kidney disease" cos it reduces their chances of finding a suitable donor for transplant in the future. All scary stuff.

It is rare I see to be a young male with SLE.

So at the moment all we want are positive stories. Can't cope with thoughts of a terrible future. He is so positive and always has been. Noone should take that hope away.

He is bothered most at the moment with a horrible cough, weight loss (gone from 56kgs to 52 in two weeks), and obviously intense fatigue.

This is a hideous disease and as a nurse (althiugh mainly Paediatric) I didn't realise how severe it could get.

Thankyou in advance for being there. We live in the north of Scotland x

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Hi Deegraham,

I live in Scotland as well and have another auto immune disease but lurk in this group as well.

The best advice I can give you is to make sure your son is under the most experienced Consultant he can find.

Aberdeen Royal Infirmary have a very good multi disciplinary Vasculitis and Lupus clinic which has input from both Nephrology and Rheumatology.

If your son has kidney involvement I would ask about the possibility of biologic drugs such as Rituximab as they can be life changing in acute, auto immune disease.

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Thankyou.

He has a good rheumatology team ( one of our very good friends is a consultant rheumatologist in Lanarkshire and he gives them the thumbs up) and with swift diagnosis I am already impressed. Althiugh it's the renal team that are leading his care due to his kidneys. He most probably will be starting on mycophenolate. That's what we have been told. But we haven't had biopsy result yet. The renal team seem very good too. As a nurse in the same Hosp I feel he had been getting really good care..... So far :-)

Not sure about all the drugs- rheumatology is not an area I am familiar with - but I will get familiar I am sure.

We live north of Inverness.

Many thanks for replying!!

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A good overview of treatment as well as mortality and morbidity.

arthritisresearchuk.org/hea...

The BSR have published an evidence based guideline on the treatment of Lupus, I can't get access to it online but perhaps Lupus UK or someone on here can give you the link.

I was a nurse as well and had a 4 year diagnostic odyssey, I lost my job and driving licence along the way. I now volunteer with Vasculitis UK.

Rare disease is a game changer, unfortunately we need to become experts ourselves and check that our treatment is in line with the most recent research.

There is no doubt that Dr's like Prof Ian Bruce in Manchester or Prof David D'Cruz in London will have much more experience than anyone in Scotland. Prof David Jayne at Addenbrookes in Cambridge is an authority on Lupus Nephritis, they are always happy to offer help and advice to Consultants around the UK. Something worth bearing in mind.

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Starting rituximab Tues :-)

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So glad to hear this!

It's a wonder drug for so many patients.

I hope your son has a quick remission.

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I wonder if it's because he is so young and disease so rubbish in kidneys?? Anyway I am delighted 😀

Thankyou

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Thanks x

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I think the key point to remember is that although lupus is not curable it is very manageable for most people. A lot of people say their first flare up is the worst then, with the right doctors and the right medications he can still do a lot of what he wants to do and it's right to remain positive. He may have to learn to not push himself too much which is hard in someone so active and young but he may get long periods where he feels very well. I've had lupus for years and have had many times when I could still play sport/be fully active etc and the lupus just sits gently within me. Obviously some times are not so good but there are some great new treatments.

So so hard for you though as his mum. One of my sons become very ill very quickly with a rare autoimmune disease when he was 10. First 3 months of thinking he would die, next few months of watching him struggle to re- learn to walk, eat etc, a few more in a wheelchair and a few years of having to re-learn how to control his bladder and get fit again. It was the hardest thing I've ever gone through and far harder than having lupus myself because you would do anything to swap places with your suffering child. BUT he's now 14, he's not at all traumatized by it (I am!) he wants to be a neurologist and is a county cross country runner and if I look back to how I felt at your stage I'd never have thought we'd get to here so please do know I am thinking of you and willing your son towards a long period of remission. The young are strong and brave. The thing I found helped him was to tell all his friends and their parents how to help him. Especially at your son's age, his mates might not realise that they can help just by being there for him and changing their activities for a while so he can join in - even if it's just them coming to sit and chat together/play xbox by his bedside. He will need to feel a part of normal life I expect but will be too tired to do much.

Lots of love to you and him. Let us know how he gets on.

xx

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Oh thankyou so much you have no idea how this has encouraged me. I am sitting here with tears running down my face because of your message. I look at him all skin and bones and wonder if he is dying? Then I berate myself for being negative and try to take some of Fin's insane positivity in life for myself.

Thankyou thankyou. I can go to sleep with some more hope in my heart.

Huge hugs of thanks to you

Dee xxx

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Oh Dear..I am here for support...I have a daughter, now 29 with medical issues since she was 4..she is great now...anyhow I know what it feels like to have your Child ha e health issues . At 62 and just DX'd I am still studying and learning....Right now from what I have read, We have to know all we can about Lupus... I am thinking of You and Your Dear Son

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Hi, I have Lupus and I am an ex nurse, so like you seen a few things but its different when its your kids. As has been said Lupus is manageable as long as you try to keep a step ahead. Easier said than done sometimes, but once he gets to know his own symptoms and body he will start to manage. Being young he may have difficulty accepting it at first and push it to its limits, as you know, but we all do that alittle.

My son 29, has just been diagnosed with Grave disease, he dropped four stone and had to move back home. I worried more about him. He is doing well now, once the medication is sorted for these conditions and you learn to balance life alittle, things change but settle.

All the best for both of you.

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Thankyou so much! It's so good to hear positive experiences. Hugely appreciated xx

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Hi Dee, How is Fin doing the last couple of days? I have been thinking about you both a lot.

I know it can be really hard to think about the positives when you're in that situation of fear and worry about your child but I think there are positives: he's got a diagnosis (massive step in the right direction towards early and successful treatment), you trust his medical team (and are medically knowledgeable yourself so can make sure you get the right people looking after him) he's got a really positive attitude and he's got a great mum. It's absolutely awful you're both having to go through this but there is light at the end of it. I look back on those dark days and tell people it was like Sam and I were shut in a big black box with no way of knowing how to get out; other family, friends and medical professionals helped (some hindered - he was misdiagnosed initially) but really, as a mum, it feels very much on our shoulders doesn't it? I cried most days looking at what he had become so quickly from a completely healthy boy (unable to walk, incontinent, couldn't even eat solids or smile for a while) and worrying about his future but he, like Fin, once he had recovered enough to communicate, was very positive. They were assessing him after a few months to see if he was psychologically damaged by it and said did he ever think 'why me' and he answered (he's a very mathematical boy!) 'well no because it's 1 in 200,000 who get it so why wouldn't that 1 be me, it has to be someone, that's how odds work!'. I bet Fin's positive attitude will mean that he gets back to his cycling as soon as he is over this flare, even if it will be hard for him to learn to accept not being as good as he was for a while, he has a massive advantage already being an athlete - both in body and mind.

My thoughts are very much with you both and please remember to look after yourself as well as him. I realised it made me feel much better and be much better looking after him all day if I took some time to go for a long walk and talk to other people about how you feel about it but also other everyday things.

Lots of love

xxx

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Thankyou so much for your words. Your son sounds amazing and his attitude is quite similar to Fin's! I am so glad he has come out of that awful dark place when he was so ill. It must have felt like there was no way out. And although Fin can still walk talk and eat (maybe less than usual) I am trying to not think about the future because it's not gong to change anything. It could be awful but it might be so different!

Had renal appt yest and he has the 4th out of 5 grade of renal involvement. So they are whacking him with IV steroids for the next 3 days as a Daycase. He is already on oral pred.

He started mycophenolate yest and our consultant is going to speak to lupus experts to see of a) they are happy with treatment he is getting and b) is there a trial he could benefit from being on. Lovely consultant who I feel we ate very fortunate to have.

Fin is already looking better from the pred - no joint issues, cough improving and perkier.

I am so thankful for the NHS and swift diagnosis. Lupus nephritis can go undetected, as it had here, for quite some time, so we don't know what scarring has been caused which is irreversible. May find out.

Taking a day at a time. Life for my British Champion 2017 at Paracycling ( he has club feet so was eligible for this) is going to be different and hopefully God will give him new dreams and desires if he isn't going to Tokyo 2020.

But, never say never. I just so don't want him to lose his insanely positive outlook on life because of Lupus.

Support from people like you is amazing. I haven't even asked how you are! So sorry.

With love and thanks to you xx

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Hello!

Fin had his first infusion of rituximab today and no reactions thank goodness!

He has gone up to full dose of mycophenolate today too so hoping he copes.

Great news at renal clinic today. No scarring on kidneys so while they are classed as class 4 just now they could improve hugely. Lungs have lupus too so ct in two weeks but he thinks they will improve too.

Tiny bit of weight gain and less protein in his urine today

All so much better that this time last week.

So thankful for everyone's thiughts and prayers

I know it can change but so grateful for some good news today xx

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That is great news! I have been thinking about you both a great deal and soooo pleased you have some positive news. With no scarring, a young body and being able to tolerate both those drugs he must have the best chance of great improvement. Is he still in hospital or outpatient visits now? How are you coping?

xx

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Thankyou! He was discharged after 6 days but has been in as day case for the IV steroids then the rituximab

How long have you had lupus for? And what are your flare ups like? Noone has talked to us about these yet probably because he is still in the acute phase. Got first rheumatology appt end of the month. But see renal weekly.

He is determined to continue as if nothing has happened and in spite of hours haemoglobin only at 77 instead of 130, he think he will be in his bike this week......his bp is still only about 90/40!! Hard to say no I guess he needs to find his own limitations. His mother saying no will not help!!

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I suppose for his mental health it may be good to get back to cycling for a bit even if not the best for his physical health? Although I suppose it may then really hit him that he does feel too fatigued to do what he used to? Poor lad. Hopefully his iron levels will fairly quickly get back to normal. My blood pressure is always very low in a lupus flare (it was 72/36 in hospital recently) but comes back up a bit when it's more under control.

I think with lupus, we are all so different but for most of us it's very much relapsing/remitting with many good periods (even completely normal periods - some people for many years) inbetween the flares. Mine came on much more slowly than Fin's so took a while to diagnose about 6 years ago. I don't have any renal involvement, mine tends to attack joints, heart (although since hydroxychloroquine this has been much better) and nervous system. I think, as Fin and you will, we learn to read the signs of what is starting a flare and learn to rest/increase medication etc so he will probably never be as poorly as he has been this time as he will be well monitored by the hospital too. I tend to get minor flares about twice a year with joint pain, fatigue etc then the more major 'organ' ones every few years (but I think mainly when I overdo it or forget/ try and stop taking the medication!) although my auntie who has lupus nephritis had major kidney involvement like Fin then felt completely fine for many years and she seems to get an attack on average every 6 years - but quite quickly controlled now.

It may be worth posting under a new heading of lupus nephritis so you can hear from people with that involvement?

x

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Thankyou xx

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Hi Dee,

Thinking of you and Fin. Having an 18 year old boy myself, your posts have really touched me.

Much love and prayers xx

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Thankyou xx

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Hi Deegraham,

I’m glad to hear that your son has such a positive outlook and attitude towards life!

We published a factsheet on ‘LUPUS: and the Kidneys’ which you can read here: lupusuk.org.uk/wp-content/u...

Around 10% of lupus patients are male; here is the link to our factsheet on lupus and men lupusuk.org.uk/wp-content/u...

We published a blog article on managing fatigue which I hope you and your son will find useful: lupusuk.org.uk/managing-fat...

Some lupus patients experience dryness of the mouth which leads to sore throats, coughing and difficulty swallowing dry foods. To read our factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ click here: lupusuk.org.uk/wp-content/u...

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 chanpreet@lupusuk.org.uk . Also, you may like to check out the South and East Scotland Lupus Group’s Facebook page here: facebook.com/South-and-East...

It is advised to speak to you son’s doctor about the weight loss he has been experiencing.

Please keep us updated, wishing you and your son all the best.

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Thankyou so much. Thaddeus leaflet about men was really good. x

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A wee update. Fins consultant spoke with a uk and world lupus expert. He is intruding rituximab on top of the mycophenolate. Fin has been having 3 days of IV steroids to try and whack the kidneys. The rituximab can make you feel crap and adminisered IV over a few hrs twice in 8 days then 6monthly.

So that's where we are at nursery now. Constantly changing but always from expert advice. Feeling OK. I like plans!!

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