LUPUS UK

Lupus /joint hypermobility / recent diagnosis

My 21 year old daughter was recently diagnosed with lupus. Her rheumatologist is sympathetic but has said that 'chasing it with drugs isn't the answer. Fair enough but there really hasn't been anything offered in the way of support /aftercare. She's just been told to follow a healthy diet, drink lots and use suncream! Her main problems are fatigue, hypermobility (daily joint dislocations/subluxations) and lots of minor illnesses, presumably due to a low immune system. My daughter isn't one for support groups but I am happy to do so on her behalf! I would be very grateful for any tips/advice. Thanks in advance.

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Find another rheumatologist.

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Hello, im 28 with Lupys diagnosed unofficially at 16 (officailly at 24), im sorry to hear your daughter has Lupus too, the diesease it self is managable however some help is required my first treatment for Lupus was Chemotherapy, please find another Rhumethologist who will listen and advise you better ♡, so with Lupus its basically were our immune systems are over active where the good attack the good and the bad(basically a civil war in our body) which is why we are normally given immune suppresants and there are quite a few forms of it. I have SLE which is Systemic Lupus Entermatosis (can't spell) . But my main diagnosis is Mixed Connective Tissue Dieseas (overlap of autoimmune disorders. Lupus can be triggered by the sun so we have to were spf 50 at all times even in winter, as a lupus patient this should be prescri(bed) because of this we lack vitamin D too This may help with joint pain and fatigue, although its a side effect of Lupus. Feel free to message if you have any questions or just want a general chat :)

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Hi, thanks for replying. .. it's been a bit of a difficult situation in that my daughter is away at uni so I was only with her for her first appointment. We paid for a private consultation as waiting list for rheumatology was ridiculous. She was seen by nhs a few weeks later but it was the same consultant! I have just been surprised by lack of follow up care, it's a bit of a bombshell to just drop on a young person. At the moment she will just be seen next year, no mention even of blood tests to monitor her situation but she is going to query this. Long-term she will finish uni next year, so she should be referred to the same rheumatology clinic as me ( I have rheumatoid arthritis ), I have always found them really helpful.

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Another vote for the find another rheumatologist for a second opinion! Yes he’s right in that medication can’t cure it but there’s things that can be done to help with the pain and the fatigue to give her a better quality of life. Also it needs monitoring and keeping under control to limit flares and ensure she doesn’t become seriously ill with it.

As for the hypermobility and subluxations .. has she been tested for hypermobility syndrome? I’d push for her to also be sent to somebody who specialises in this as it may be a separate issue - unfortunately once lupus has been diagnosed some doctors use it as an easy covers all explanation and that isn’t always the case. She should at the very least be getting help with physiotherapists Etc to teach her exercises to strengthen certain areas to help with the subluxations and keep her as fit as possible to ease the pain it causes.

Drink lots is a new one on me though .. dehydration as a cause of lupus?? Interesting theory but laughable. Good luck and do come on here for support and any questions - you’ll get lots of help and good advice.

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Hi thanks for your reply, I totally agree with the points you raised, it is difficult as she is away at uni, she will be back home next year, I'm hoping she will be referred to rheumatology here in Suffolk, I go there as I have rheumatoid arthritis and there seems to be much more in the way of advice lines etc. We/ she has been backwards and forwards to docs so many times but seem to be hitting brick walls most of the time. She is going to get on to her consultant again as she is really struggling. I have told her to really tell him how it is, youngsters aren't always very good at being 'pushy'! Thanks again for your input, I have had lots of feedback which had all been very helpful to a novice!

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As a separate issue has she applied for student disability grants? My goddaughter struggled with hypermobilia and they were really helpful to her - they did things liked helped with the costs of printing pages from text books so she didn’t have to carry heavy books all the time and could then afford to just print out the pages she needed. She was given a speech to text computer program (think its called dragon?) that enabled her to dictate her essays rather than have to type them, software that did the reverse and turned text into speech so she could listen to things rather than have to hold heavy books etc. She said she couldn’t have coped without their help - it was basically a student version of the access to work programme. The most helpful bit was the ideas they came up with to help make life a little bit easier which never would have occurred to her. Certainly worth her looking into it if she hasn’t already .. details are on the government website here gov.uk/disabled-students-al...

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HI thanks for your reply ... yes in her first year the uni recommended making an application, lots of paperwork but definitely worth it, she got a better computer, chair, writing aids, lots of different things which did help her a lot.

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Glad to hear it - the colleges and universities do seem to be pretty well prepared for student disabilities thankfully. If she’s struggling with anything else it could be worth her seeing if there’s anything else they can help with as well - I know with ATW I can let them know as I go that I need reassessing for further help any time I like and they are sooooo much more helpful than other government departments :)

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Medication as I understand it keeps your system stable, its certainly worked for me. I was diagnosed with mild SLE in 2005...I'm now 70.... and I was prescribed hydroxy straight away. A lot of the symptoms have eased and I'm currently on half the dose I was on originally, with advice to take more if I felt it was necessary

You need a second opinion if your daughters struggling, why suffer needlessly?

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Thanks for your reply, the overwhelming response I have received certainly points to getting a second opinion. As I have said in previous replies, my daughter will finish uni next year, I am hoping she will be referred to rheumatology here, I attend ad I have rheumatoid arthritis and have always found them very helpful. I know my daughter plans to get on touch with her consultant in the meantime, I will tell her she needs to be much more assertive, not always easy for youngsters though thanks again for your reply.

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Hi lindadunnett,

As other members of the community have said, whilst there are no cures for lupus, treatments can help to reduce lupus activity and control/alleviate symptoms. A first treatment that is often tried is an antimalarial called hydroxychloroquine. It is the safest medication for lupus and tends to be well tolerated with few or no side-effects and it is possible to take it for many years. You can read more about the medications for lupus in our factsheet here - lupusuk.org.uk/wp-content/u...

It may be wise to ask her GP to refer her to another rheumatologist for a second opinion. It may be best to see someone with a specialist interest in lupus. Whereabouts in the country does your daughter live? I can provide you with information about any specialists we know nearby.

If you need more information about lupus and LUPUS UK we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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Hi thanks for your comment, I have received lots of useful advice all saying much the same thing. My daughter is currently at uni in Chichester, we are in Suffolk. Any recommendations would be much appreciated. We have been backwards and forwards to docs so many times, half the time they can't even agree about the hypermobility although her rheumatologist scored her 7/9, pretty clear result to me! My daughter will finish uni next year, I'm hoping she will be referred to Ipswich, I attend as I have rheumatoid arthritis and have always found them very helpful. Thanks again for your comment. I will download the info you recommend.

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Hi lindadunnett,

I have had Dr Shand at Ipswich hospital recommended previously. Otherwise, depending on where you are in Suffolk, Addenbrooke's hospital in Cambridge has an excellent lupus unit.

The nearest lupus specialist to Chichester who I know of is probably Dr Fiona McCrae at the Queen Alexandra Hospital, Portsmouth.

University can be a stressful time and stress is a common trigger for lupus flares, so it is important that your daughter is monitored and given any treatment if needed.

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That is all very helpful indeed, thank you very much

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The rheumatologist's attitude is concerning - SLE is a potentially life-threatening disease. Despite lifestyle changes including eating healthy, using sunscreen, getting a lot of rest, many of us still require medications to keep the lupus under control. Even if her symptoms are currently 'mild', lupus patients need regular monitoring of bloods and urine, as lupus activity could increase and even affect organs if the flare is severe. She needs to be seen sooner than the end of her uni next year (preferably by someone else!)

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Thanks for your reply, lots of people have suggested getting a second opinion, I think we need to look into that. Thanks again!

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Hi, I’m also 21 and was just diagnosed with Lupus in March of this year. As soon I was diagnosed I was started on hydroxycholoroquine and since then my dose has now increased. I still don’t feel like my lupus is well controlled but, like your daughter’s doctor, my rheumatologist isn’t keen to prescribe any of the more dangerous drugs until they are absolute necessary because she says I have a life ahead of me of being on these drugs so wants to minimise it as much as possible. That being said, when I have had disasters (ie ended up being hospitalised due to symptoms) she does allow me to have a course of steroids. I do get where she’s coming from but it can be frustrating, especially when steroids make me feel so much better!!! I definitely think a year between appointments is far too long. Since my diagnosis I’ve seen my rheumatologist every 12 weeks or so and have had contact with her in between when I’ve been really unwell. Xx

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Ps I forgot to say I also have hypermobility. If your daughter ever wants someone her age to talk to I’d be happy for her to reach out! X

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Thank you for your reply, so many people have suggested getting a second opinion, we're looking into that now. Thanks again!

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Hi there.

I’m 24 and was diagnosed at 18. It has been a struggle I wasn’t given any medication until I was about 20.

I was started on medication due to joint pains (plaqunil) but then I was taken off then due to the side effects. I am currently on steriods this wasn’t due to joint pains but due to a bad flare up.

Medications seem to the be a good option short term but in my own experience I feel as though the longer I was on medication the more problems

I developed? (This will be different for everyone)

My advice to your daughter is that she should try and avoid stressful situations, and maybe inform her university of her condition so she can get extended time for assignments? This will reduce her stress. Also another thing that helps me is to pace myself. I try to plan my busy days in advance ensuring that I have time in between to myself.

Hope this helps.

I. X

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Thank you for your reply, she has been given extra time in exams since high school which is great, also she is allowed to use a laptop as she is unable to write for long periods. Stress certainly seems to makes things more difficult, she is in her final year so it's all dissertation and exams but she is learning to pace herself.

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That’s ok. I know how hard it is being young and diagnosed with chronic condition.

I’m glad she is getting support from uni.

I would also speak to her rheumy about when they would give her medication and if maybe if she could have something to help her get through her final year at uni to help manger her symptoms.

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Hi Linda, I just wanted to add my voice of support to getting a more human rheumatologist for your daughter - my first consultant really psychologically damaged me 🙈 It’s tricky when you’re a teenager with Lupus, trying to manage the whole social and education aspect, that you just trust the medical side of things. Later, you wish you had been a better advocate for yourself. I copied you into the comments section on a post I put up featuring two videos I filmed with a friend of mine (Daisy was diagnosed with Lupus at 14) and we cover most topics in the two videos. Hope they are of some interest. Wishing you both so much luck and strength!

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Thank you for your reply, it is so difficult for youngsters on this position, I think they often don't have the confidence / life experience to really stand up for themselves. But in my daughter's case she is getting better at it! Thanks again.

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