[Closed] Lupus - Any positive stories?

Treatments are coming through.
Unfortunately NICE will not approve one of the most recent - Benlysta, but if you can persuade your doc then you might get it.
My cousin has had it for about 10 years and 2 kids later she is still going well.
It does have a major impact but with continuous treatment and hopefully advances in treatment it can be arrested or slowed.
Unfortunately no treatment to restore function yet though.
Good luck and keep positive

Flannery O'Connor, an author whose work I both admire and enjoy had lupus at a time when effective treatments weren't available. Reading some of her short stories is good for the soul even if it won't help the illness. A member of our triathlon club tested positive for drugs used in treating lupus so they they obviously don't leave you feeling too bad.

Juliana Furtado the former pro mtber and inspiration for Juliana/Santa Cruz women specific bikes, was diagnosed in'97, which ended her racing career, but she has it under control and still rides her bike.

Good god you guys have been through the mill! First Guillain-Barré and now lupus?
I have no stories good or bad but just wanted to wish you all the best :/

The daughter of a friend of mine had it when she was a young teenager. She is currently doing a gap year before going up to university and I understand she was much improved and virtually free of it. They live in Germany, and whether this makes a difference regarding any potential treatment I don't know. The important thing is that her father, my friend, is much relived that his daughter seems to have got better.

I was in halls with a chap who used to DJ all our parties he was enthusiastic but really, really shit. In his second year he got lupus and took a year out - when he got back he was still DJ-ing but was now really good. That's positive, right?

I'll go positive:

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Have a friend who has apparently suffered. She doesn't talk about it much so don't know all the details (found out when following a mountain biking accident I was with her in the ambulance and she was giving the crew her full medical history; otherwise I'd be none the wiser). I do know she has had 2 kids and completed 2 full Ironmans since being diagnosed though.

My wife has lupus. Generally she lives her life as normal with the added 8 weekly tests and constant change of vitamins / rejections of medicines etc. she gets bouts of depression, she has time where her joints are in massive pain and sometimes one of her legs or her fist seizes up. I came home and found her stuck to a door handle once after her fist seized when she tried to open it, funny but not funny.

However she's continued to be a wonderful mum to our two kids which were naturally high risk pregnancies. Shes the common sense yin to my indecisive yang, and more adventurous / explorative. She lives life and is relaxed about it, knowing that bugger all else could be worse than living with an Incurable infliction. More than that she's a qualified sports therapist with top standard qualification in sports massage and reflexology - despite the fact that you'd never notice at the time but she treat a person then come home in more pain than they started with.

I was capable of half her attitude tbh.

A very good friend has lupus. He was diagnosed 12 years ago whilst in Australia. He got very good care when he was out there. Bit of a mixed bag when he came back to the UK, but he's now looking and feeling great. He's the fittest he's ever been, works in the ski resorts most of the winter, travels during the summer months.

One side effect of the steroids he takes is that he's build like a brick privy. Another is that he will pile on the pounds if he looks at chocolate or beer.

Kryton... Touching read there my friend 🙁

Sorry, drlex, on further examination...

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MrsMonkeyboy was diagnosed with lupus about a year after we had our daughter (7 years ago). And although there are many many people out there with lupus who manage to live pretty 'normal' lives im afraid her story is [s]pretty[/s] very negative. Like I said though its not necessarily typical so please don't think this will apply to Mrssosoxo - all cases of lupus are different and for alot (most celebrity cases for a start) of people it doesn't stop them in living an active, normal life.

The diagnosis took years as at first as our gp just thought she was a hypochondriac, it wasnt until a complaint about the gp to the practice manager that led to a consultant appointment. Even then the consultant was reluctant to put 'lupus' on her medical records without long term reviews. So we had about a year or so of not really knowing what was wrong and the sleepless nights and tired days of a young baby to deal with.

To be honest though once she did get diagnosed things happened pretty quick. I guess the first thing she did was a Google search of lupus and she freaked out completely, however it was a bit of a blessing in disguise as it did prepare her for the worse that could happen and gave a base line of 'at least its not as bad as it could be'.

Now 7 years on and multiple different courses of drugs, with violent allergic reactions to some of them (followed by a ride in an ambulance, a AE visit and redecoration of the mother in laws bathroom). She must have spent about 2months+ in hospital after catching various conditions - Lyme's disease being one of them (which the drs got all excited about as bad cases are pretty rare).

Shes found the steroids very hard to deal with and has struggled to come off them and the side effects caused - she's found the weight gain very hard to deal with. She had a 6month course you of chemotherapy 2yrs ago to suppress her emune (sp?) system, which although not as full on as cancer treatments, was very very hard six months and took alot of help from family and friends. She'd also suffered from depression prior to the lupus but its obviously not helped.

Her family have also found it quite hard to deal with and have a bit of a head in the dirt, emu approach to illnesses, especially ones that arnt outwardly visible, which has caused additional stress and pressures. my parents have been great though.

She now has it fairly under control thanks to the right cause of drugs, although she takes about 20 or 30 pills daily for the lupus and the various related conditions. However she hasn't been well enough for fulltime work and has found that very hard to deal with as that obviously puts additional financial pressure on a family - I don't mind but she gets very stressed about money and feels like its her fault. She has had to manage her physical activity on a daily basis which was a lifestyle change, 10 years ago we'd go on walks in the country side over weekends etc. Which we still do now, however the next day has to be a rest day.

There is quite a positive support group on facebook and she's made many friends through lupus UK and other forums and web sites. For her the best thing she did was to research as much as she could and read up on lupus as she found that the GPs were pretty useless, its got to the point where she knows 10x more about lupus and the associated conditions than her local gp. The consultant is better but tend to be a bit flat about the condition and she always leaves the appointments a more depressed.

Im sure mrsmonkeyboy would be more than happy if you or Mrssosoxo wants to email questions etc. Or meet up for a coffee if your in the Gloucester / Stroud area. (Email in profile).

chojin - Member

Good god you guys have been through the mill! First Guillain-Barré and now lupus?

It's been a right laugh!

All, thanks for your replies, it certainly gives us something to think about.

monkeyboyjc

I haven't read your post tonight, as I'm scared too, but I will read it once all of this sinks in.

Thanks one and all from the Osoxos.

My mum had. ..I don't want to finish my story.

Hope mrsosoxo will be ok. Positive vibes.