How my lupus diet is going -the ups and downs!

Well it's been an interesting week! After having a horrible flare up as a direct result of eating some cheese the week before (took a good few days to get back on my feet) i gave up all dairy -eggs, cheese, cream, milk, yoghurt- and continued to take Naproxen. I started to feel really good in myself as I took control back with my diet, and I felt more hopeful and positive than I'd felt since before the diagnosis!

On Friday I realised that I was running out of Naproxen (been taking x3 a day) and I ordered a repeat -but realised I wasn't going to be able to pick it up until I'd already run out. So on Sunday I experienced what I can only describe as an emotional detox (cold turkey!) and I felt really depressed and overwhelmed with everything. I thought 'oh no what's happened to my hopeful positive mood?!' But fortunately it returned the very next day. Now I've had no pain killers for 4 days, and I'm doing surprisingly well in terms of joint and muscle pain -could the diet already be helping? My body now seems to want to detox itself and I'm feeling sick in the evenings and wanting to eat only very simple meals.

After the emotional meltdown on Sunday I decided to get some help with managing my diet and I've made an appointment to see a nutritional therapist on Saturday.

I saw my consultant on Monday and that was really positive. I explained how the lupus had got worse and worse over the past 6 months and how low I'd been feeling. He noted that my ESR had gone up but also reassured me that it was not progressing in a way that was worrying - I was worrying that I would end up like my mum who has Rhuematoid Arthritis. He reassured me that it wasn't attacking my organs, so he wasn't going to insist that I take lots of drugs. In fact he gave me 3 drug options to choose from ; increase the Naproxen, try Plaquanil again (it didn't agree with me last time) and a low dose of steroids. I asked him what would be the lowest dose of steroids that would still be effective and he said 10mg. So I chose to take a prescription for the 10mg steroids, feeling hopeful that this would only be for 1 month, then decreased by 2.5mg each month until it stopped. I also felt supported that I had a choice in this.

I asked him about treating lupus with diet and he told me that the only scientific evidence so far is that omega 3 oils do help lupus patients. He said each person is different and so something that works for one person might not help another. But he was very supportive of me trying the diet and is interested to hear of what I try and if it works for me.

So my plan is to focus on doing the diet with help from Nutritional Therapist, and just in case I get any horrible flares that I need drugs for in this time, I have the prescription for steroids on standby.

10 Replies

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  • Good luck, keep us posted. :)

  • I have started drinking 8oz of organic tart cherry juice pet day and was able to stop taking naproxen or nsaid's. You may want to ask your nutritionist about it as well. I can literally feel the inflammation decrease after drinking my juice each day!

  • per day, not pet day! :)

  • Hi Ladies,

    i hope today you all feel a lot better!

    Dryaid - please see my post re AGM Meeting as one of the 'top' Specialist' did a speech with regards to Lupus, obviously, but more importantly with regards to medications, treatments and pain relief.

    They advised that with all chronic conditions sensible and healthy eating, mild exercise and positive thinking is the way forward. They were highly against certain supplements, because as well as being expensive they were not proven to work. Not only that most of the products sold in health food shops etc are not even licensed and not enough research has been done on them and how they can affect certian conditions/illnessess.

    11yrs ago - my then Rheum Consultant threw in the big when I took to show him omega 3 oils and glucsoname (hope I have spelt this right lol! helps assist joints and protects for arthritis). He was very annoyed with me and said that I should only be taking prescribed medication.

    11 yrs forward my new Consultant is of the same understanding and it would seem so the speakers who attended the AGM last Sunday.

    What he did say with regards to pain relief is if you take something for 1 month and it doesn't work or seem to be working then stop taking it and try something else. Again with supplements. What he did say was that all people regardless of their conditions should take vitamin c, multi vitamins and pro biotic drinks!

    To be honest my immune system is so messed up - that I won't take anything that I don't feel comfortable with.

    I do eat healthy, cut out red meat - but allow myself a treat now and again - one has to to keep sane! lol and I do some mild exercise - that in itself I feel helps!

    Good Luck with everything and keep us all updated on your progress.

    Thanks, Lulabelle x

  • Fresh caught salmon (NOT farmed raised) - a great source of Omegas. But if you have chosen to eat NOTHING with a face, a true Vegan, then salmon is not an option for you.

    You might want to rethink giving up eggs (as they are not dairy). An Ovo-Vegan does eats eggs.

    Eggs (egg whites specifically) have an abundance of B12, Vitamin A, Iron, Calcium, Riboflavin, Phosphorus, Protein, Selenium. All things needed for a balanced food intake. By removing the yolk the saturated fat concern is eliminated. When you give up eating the flesh of animals you give up the natural goodness that it can provide for your body - that which is lost must be replaced in some form.

    Just one egg white per day can not only help build muscle but also will protect existing muscle from micro-tears from use/abuse/inflammation. Being that muscle mass is difficult to retain with the limited weight bearing exercise tolerance of a lupus patient, in addition to muscle mass lost due to natural aging process, it is wise to protect what you already have as much as is possible.

  • Thanks Nouska, this is very interesting and I am keen to start eating eggs again as soon as possible -after all I have 4 hens in my garden laying them so I want to be able to eat them!

  • Sadly I am allergic to fish/sea foods. Knowing this I still tried supplementing my diet with fish oils... Didn't go well at all, haha!

    Vegetarian glucosamine (from fungi rather than shark) did nothing except drain my bank balance.

    The only thing I do diet wise now is add a spoon of milled flax,wolfberry, sunflower & pumpkin seeds to breakfast cerial. Don't know if it does any good but its tasty!

  • Hi, So many posts appear about diet and lupus that I thought I'd look up something definitive about this issue. Lupus is such an idiosyncratic disease that it's hard to come up with a fast rule for everyone. People who have kidney inflammation, for example, have different dietary needs from those who have gastrointestinal problems without renal involvement.

    According to the experts, there are a couple of facts that seem to be true for all lupus patients:

    1)Keep up vitamin D levels. Careful though; too much vitamin D is toxic. A doctor should periodically monitor Vitamin D in the blood and make sure the levels are in the recommended range. For lupus patients, achieving Vitamin D sufficiency can be tricky because we are also told to avoid sunshine (which is how humans are programmed to get most of their Vitamin D).

    2) Avoid alfalfa sprouts. For some reason these sprouts have been implicated in causing flares.

    A few reliable sites that discuss diet and lupus are listed below.

    ox.ac.uk/media/news_stories...

    lupus.org/webmodules/webart...

    articleid=689&zoneid=93

    lupus.org.uk/what-is-lupus/...

    Like most people, I look for ways to eat that satisfy my conscience (yes, I think about the animals) and the demands of my body. Good luck with that!

  • Alfalfa sprouts ... very dangerous. Bacteria heaven. Salmonella best avoided.

  • Thanks very much for all your comments. I agree that supplements can just drain your back balance and it's hard to tell whether they are actually working. I would prefer to get all I need from my diet. My latest Vit D test shows I'm slightly deficient so I'm taking that, as well as the Tumeric and probiotics.

    I am enjoying the process of listening to my body and responding to what it wants from my food. Today I had another detox kind of day, my body wanted freshly made juice (beetroot, carrot and apple) and smoothies (banana, raspberries, chia seeds and rice milk) and I had a delicious stir fry at lunchtime with loads of fresh veg and brown rice. I've never been into juicing or raw food or that sort of thing, but I am appreciating it at the moment. My body is finding digesting things difficult at this point so this kind of diet is working for me today. Who knows what I'll be eating next week!

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