Sorry - this is a bit of a long post, but might be interesting for some...I was recently introduced to a local(ish) GP who has Lupus and spent a couple of hours over coffee with her yesterday. It was an incredibly exciting conversation and left my daughter (the Lupie) and I feeling encouraged and inspired, so I thought I'd share a bit of the story.
She is 43 and has had Lupus since she was 15. It went undiagnosed for quite a long time and she had very severe symptoms, several hospital admissions and problems with several organs as well as 'the usual'. She ended up missing a year of school, but still managed to go through medical school and qualify, which is an incredible achievement in itself. She has also done a PhD (not sure what in).
She didn't respond well to Hydroxychloroquine and I don't know all of her medication details, but basically she went on very high dose steroids, which she has been on for 26 years, which has now affected her bone density so she's on medication for that (and other medication to deal with the effects of etc. etc....).
A couple of years ago she was at a conference and talking to someone who was into Functional/Integrative Medicine (more recognised in the USA than here) and nutrition. She started researching it for herself and took on what she calls a 'clean' diet. Again, I don't know all the details, but it definitely excludes gluten, dairy (although she does now take a bit of milk in her coffee!), refined sugar, etc. (Having read some books on how to reduce inflammation and address auto-immune issues myself, I think most of the key nutritional recommendations are very similar.). She also started taking probiotics as well as something called digestive enzymes (I think), in order to support her gut/digestive system to heal, preventing things getting through to a cellular level where they shouldn't be (and thereby trigger the immune reaction).
Through those changes (and she also runs alot), she has now managed to reduce her steroids from super-high to just 1g a day, which she is planning to come off in the next couple of weeks. So she will be on no Lupus medication at all (although presumably still taking things for Osteoporosis). She was incredibly well, positive, high energy, etc. Whilst she is very restricted in what she can do for patients within the constraints of the NHS system, she has recommended it to some of her patients with chronic conditions, with some very positive results.
She is now studying Integrative Medicine and although she intends to continue to work as a GP for the forseeable future, I'm hoping she will also set up an Integrative Medicine practice in due course. I think people who are fully medically qualified and can then also add to that knowledge and experience by drawing on other elements of healthcare (nutrition and other types of complementary therapy) is a very exciting direction, which is very very difficult to find in the UK.
Our personal experience is that diet and other therapies have made an enormous difference to my daughter, who has been feeling 100% well again recently (still on Hydroxychloroquine though). The medication is essential, but we have to also take other steps to support our bodies to heal themselves, and a 'clean' diet is a zero risk starting point which can make a massive difference.
Hope that's of interest, and maybe encourages a few people to try dietary changes. It's taken about 6 months on the gluten/dairy/refined sugar free diet for my daughter to get back to feeling 100% and once you get used to the shopping and cooking (lots of fresh veg, spuds, rice, fish, meat, GF oats, smoothies, almond/soya milk, etc. - as good quality as you can afford, organic if poss) it's not difficult.
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yakamalayo
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I had anemia connected to Lupus when 9 and a flare at 26 but went undiagnosed till 35 I also follow a gluten free diet and went veggie at 10 yrs Ivwas very active and fit when younger I now only take Hydroxichloroquine but have begun alternating the days have been fairly well the reintro of gluten wipes me out but I did my diet through a specialist and it significantly affects my fatigue
Thanks for your post. Very encouraging. I don't have lupus- instead they think I have undifferentiated connective tissue disease... I have found diet changes have helped improve my symptoms. I found a book by an American functional doctor- Amy myers. I gave her advice a go, followed her diet for 2 to 3 months and felt loads better. (basically very similar to a paleo diet) I started to reintroduce stuff back in...the joint pain started again... I think it's mainly wheat/gluten and refined sugar that affects me. Although I'm cross with myself that I have pain again I feel more determined that it's the diet changes that made a difference (rather than the hydroxychloroquine) and feel less embarrassed by being fussy and instead saying "I can't eat that it makes me ill". So now gearing myself up to the diet again- and this time I'm going to stick to it!! Think I'll have a last chocolate bar and glass of wine tonight and go shopping for meat/fish and veg tomorrow morning!!
My daughter's been on it for about 9 months and we've found replacements for almost everything so she doesn't feel she misses out, although some cost a bit more. So chocolate - no problem... Green & Black's dark chocolate is completely free of dairy (and obviously gluten which isn't in chocolate anyway) and uses raw cane sugar or something similar (cocoa butter isn't dairy BTW). I'm sure there are others and i think I saw one in Aldi that she could eat the other day, so cheaper options too.
She definitely drinks alcohol, despite sugar content (on the basis that it's fermented and turned to alcohol?!). But she wouldn't drink any grain based ones like beer (not sure about whisky). She's fine with wine. Obviously she's pretty careful anyway in the light of everything.
Loads of easy replacements and some weird ones - bizarrely, using capers instead of cheese (e.g. in a pasta sauce) works because it adds the saltiness. Likewise bacon (or chorizo - most doesn't have milk in but some do) works. Olive oil and pepper instead of butter on baked spuds is great - we've all converted. Etc. etc. So she doesn't really feel she misses out at all, and it makes such a dlifference to how well she feels that it's really worth it.
Altering diet seems to be an interesting and controversial idea. I changed my diet after a bout of gastritis to avoid dairy. I have found quite a difference in my overall well-being. I have been a vegetarian for over 20 years so looked into a vegan diet and am slowly moving over. It's not as restrictive as it sounds but so far am pleasantly surprised by how much better I feel. I always think nothing ventured nothing gained....
I read this along with Lupus UK's August blog re one member's experience of changing her diet. For me it is particularly interesting as it is coming from a GP, and one who is open to the benefits of both conventional and other types of approach. Do you have any more detail on the digestive enzymes by any chance?
Sadly I don't - I'd never heard of them before. She goes to our local healthfood shop so you could ask in yours. Someone above mentioned Amy Myers book which I haven't read, but have read similar books on diets to address auto-immune conditions and I think there was information on digestive enzymes in them, but it was getting a bit too complex for me, so we just started with the basics (gluten/dairy/refined sugar). Sorry I can't help more, but I'm sure Google can!
I can totally relate to your story. Great post & great discussion: 👏👏👏👏!
Here's why I feel this way:
All my Drs tell me they are sure the fact I've been on an anti inflammation diet & supplements for most of my 60-something years explains how I've coped with my infant onset lupus with only emergency treatment for decades. Of course, I've also conscientiously managed other aspects of my life: meditation, sleep, exercise, alternative & complimentary therapies etc, and I increasingly needed to manage diagnosed secondary conditions with topical steroids etc, but my main mode of coping with lupus was lifestyle management.
However, despite all that, by my late 50s progressive multi system debilitation due to my version of sle had reached the point where my deterioration & degeneration + my host of diagnosed secondaries, was unmistakably down to primary SLE. At that point, I was finally diagnosed by a brilliant highly lupus experienced rheumatologist & then we discovered that I'd been diagnosed with lupus as a teen & infant, but no one told me...so when I moved to the UK @ 21, the NHS took me in unaware of this medical history.
Anyway, in 2011, daily lupus treatment with oral systemic meds began. I responded positively immediately to my treatment plan, which has been enhanced over the past 4 years to the point where I'm now feeling better than I have since my 20s in the 1970s-1980s. Meanwhile, of course, I am continuing the lifestyle management that has stood me in good stead all my life. But gosh am I delighted in my 60s to feel so well thanks to relatively low therapeutic doses of hydroxy, myco, amitrip, prednisolone tapers, and various prescription topicals. In the case of each of these meds, my positive response has been immediately positive. I feel vvvv lucky.
But, (there is always a but Isn't there), this year my case has become more complicated because we now know I have also been managing early onset immunodeficiency all these decades (even before starting prescription immunosuppression). This accounts for my history of repeated complex persistent infections. Fortunately I continue to respond vvv well to most antibiotics...but immunology now has me holding home emergency antibiotic kits & lab sample equipment, + i'm on high dose, long course antibiotics whenever an infection arises. Of course, all my life I've taken probiotics etc etc. but managing the antibiotic reactive IBS that has developed over the years has meant running yet another regular maintenance regime alongside all the multi system regimes required due to my version of SLE...yet, still, I feel vvvv lucky
So, am v glad you started up this thread, yakamalayo
Many thanks to you & everyone involved in this discussion
All v encouraging...and I need all the encouragement I can get...cause this sort of intensive lifestyle management + compliance with so many multisystem NHS treatment plans consumes a lot of energy & time....decades of this, relentlessly....but the rewards are great, and the risk benefit ratio is reasonable, considering the seriousness of my diagnoses
Thanks for sharing that. It sounds like a very long and arduous ordeal so I'm very impressed that you still describe yourself as vvvv lucky. A positive outlook is so essential isn't it.
That is such an interesting and inspiring story to read. I'm a great fan of healthy living and keeping active. I also know a lady who has had severe lupus for most of her adult life which she combatted with exercise until she developed LEMS (Lambert Eaton Myasthenic Syndrome) which is also auto-immune and causes the muscles to tire excessively quickly. This very nearly cost her her life as swallowing and her respiratory system among other things simply gave up. She faced life in a wheelchair on big doses of prednisolone. With huge amounts of determination, exercise and very strict diet, she has defied the medics and put both the SLE and LEMS into remission, takes no prednisolone and runs marathons!! inspirational.
Blimey, marathons! That's remarkable! I wish some really serious scientific research into diet/lifestyle and auto-immune diseases would be done, but of course there's no pharmaceutical profits to be made, so no-one's funding it (excuse my cynicism).
The lovely GP told us about a patient of hers, a teenage boy, who'd suffered with extreme eczema for years (and consequently bullying, depression, etc). She asked his mum if he drank alot of milk and she said they could keep a cow in the garden he drinks so much. None of the medical specialists/dermatologists/etc had ever asked about his diet before, despite in the even vaguely alternative world everyone knowing about common links with dairy and eczema (don't they?)!
On the news this morning they were talking about trialling the use of moisturiser for babies to try to reduce the numbers who develop eczema, which is apparently 1 in 3 (which sounds crazily high to me, but it was on the BBC so presumably it's right). They've also trialled some sort of light treatment, silk babygrows, etc. But they didn't mention diet. DUH!
Anyway, that's a bit off topic, but when will the medical world take seriously the connection between diet and health?!!!
Dairy and asthma, too, I was on steroids, etc. for six years until a naturopath suggested I stop dairy in 2001 and I did and now rarely have asthma attacks - traffic fumes and other toxic chemicals can cause some mild reaction, but not like it used to.
I also had eczema and hay-fever until I stopped dairy foods.
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