recommendations for a book to answer some of my questions?

[crazyk]

I was diagnosed with Lupus and APS last May. I was told that both were mild and the APS is nothing to worry about as I'm not planning any more pregnancies! My rheumy is very much of the opinion that if the bloods are ok the Lupus is not active regardless of symptoms. My GP however thinks my Lupus is more active than my rheumy thinks. My symptoms I think are mild - mainly fatigue, brain fog and some joint pains that are tolerable. I have many questions - can the APS become worse? what sort of symptoms should I expect when the Lupus is not flaring? What exactly is a flare - will it feel very bad if the Lupus is mild? plus many more. I look at this forum a lot and have learnt much and had many questions answered. I'm sure it will continue to be a very useful resource (as well as the Hughes syndrome community). Can anyone recommend a book that might help as well?

[Barnclown]

Hi crazyk: when I was diagnosed 2+ years ago (and the rheumy told me I'd had SLE all my life), I knew nothing about lupus: literally had never heard of it. we could be sorta similar in some ways: The consensus of my drs is that my SLE & sicca symptoms/sjogrens? are not currently organ threatening, so my condition is relatively mild, although also relatively debilitating.

Hope this is not too much info, but: I am 60 this year. My rheumy is v lupus experienced and diagnosed SLE on the basis of physical examination & medical history. I have 6 monthly rheumatology appts. My gp is very interested & supportive. Since my diagnosis, we've been doing a lot of what i'd call spring cleaning, eg clearing up a major long term jaw bone infection, aggravated by my lupus. Otherwise, plaquenil 400mg daily (+ 20mg amitriptyline daily since last autumn)has taken the edge off my aches & pains, skin rashes, nasal/mouth ulcers etc. For years i've had to rub topical steroids and antibiotics in various places, and have effective routine daily/weekly treatments to follow for symptoms in virtually all the holes in my bod. but my chronic fatigue/brain fog/predisposition to vertigo rumble on as they have for years. My most disabling issues are in my feet (and hands) due to osteopenia/hypermobility/simultaneous raynauds & erythromelalgia/mortons neuroma. I also have lichen sclerosus & angina bullosa haemorrhagica. Also, I'm a des daughter and unable to conceive. Like you, and so many of us, I've had a lot to get my head around. I cope a lot better when I more or less understand my conditions and treatment options

So, the first thing was that I found lupus uk , joined up and went to my local group meetings, and started to visit this forum when it got going.

Meanwhile I found these books, mostly from the lupus uk website. They've all been really useful, each book explaining a bit more about some aspect of lupus that another book sorta skims over:

The London lupus centre patients guide to lupus, by g Hughes

Lupus, diagnosis & treatment, by Lupus uk

Lupus, a guide for patients, by lupus uk

The lupus book (and also The sjogrens book) both by Wallace...he works in the USA, so aspects of diagnosis & treatment are a bit different from in the uk, but that's ok

A lupus handbook, by a g Moore (got this from amazon. This book has a very useful bibliography)

Also, Lupus uk produces a great series of little leaflets covering many aspects of Lupus: you can get them through the website

The websites that I've found the most reliable (other than lupus uk) are:

The raynauds & scleroderma association

Lupus foundation of America

New Zealand dermalogical society (DermNet)

A. G. Moore's website: noplaceforrumors.com

I've gone on & on. Hope not too much info

Good luck & take care

[marypw]

I'd recommend the G Hughes book Patient's Guide to Lupus - really good and pretty straightforward. The Wallace book has been revised recently and is available via Amazon - it's a bit more expensive and very thorough, although some of the science is a bit tough (and I'm a scientist!) - do make sure you get the up to date one.

Do try your local library - most libraries can get stock from other libraries in the same county even if it's not in your local one.

It's fine to look on the internet, but be cautious there is some wacky stuff out there and ignore anything that's old, because lupus recognition and treatments have improved hugely in recent years.

Take care xx

[roobarb]

Hi crazyk

I've got a growing collection of lupus books, but the ones I refer to regularly are 'The Lupus book' By Wallace & 'Talking about Lupus' by Triona Holden & Dr Graham Hughes.

These are both great reference books for looking up symptoms & tests. As previous stated The Lupus Book is a bit more scientific, but I have come to understand it more over the years I've had lupus.

I also find lupus experience books helpful like Despite Lupus by Sara Gorman, & she also has a great blog. Although many of these type of books are written by people who have the more serious, life threatening organ involvement. So maybe hold back on those for now. Unless, like me, you prefer to know the warts & all scenarios!

Like you, we all want to know what to expect from our lupus. But this is the most difficult question to answer, because everyone's experiences can be so different. You need to learn to listen to your body, & know what triggers your flares, eg sunlight, stress, noisy & busy environments.

Here are a few tips I would give to anyone learning to live with lupus...

1. Do not feel guilty for having this illness & not being able to do what you used to, or even what you want to anymore. It is so corrosive to your health & well being.

2. Always try to remember that this is a fluctuating disease. You can go from good to bad quite quickly. But you can go back to good again as well. If the bad times out weigh the good times, it's time to get in touch with your health professionals.

3. Try to find the positives in everything. This can be a toughy, but it is possible, & this is where you need the support of other lupies. This sight is great, but also join your local support group if at all possible. Mine have been amazing.

4. Educated you friends & family with leaflets & DVD's, or take them along to meet fellow lupies too. There is a great DVD from lupus UK for the newly diagnosed which might be helpful for you. Or for something more light hearted, get them to watch 'The Spoon Theory' on Youtube.

I hope this helps, very best wishes. X

[crazyk]

Thank you all for your replies. I have a medical background and always want to know how things work medically so I think I will try The Lupus book by Wallace and The Patient's Guide to Lupus by G Hughes for starters and see how I go. Thank you roobarb for your helpful tips. I must try and get along to my local support group but that's easier said than done when you have 2 young children!

Anyway, thank you all again for your comments and support.

Take care x