Hi all
Has anyone found cutting out any particular foods (ie red meat or dairy) had helped ? I've been reading quiet a bit but thought I would ask the people in the know
My consultant has started me on hydroxychloroquine but told me it can be 3 months before I feel any benefits. Seem to have been in a 'flare' for months now and getting pretty fed up. I try not to let it rule my life but feel I'm loosing the battle at the moment - so need a new plan of attack !
H
Lupus uk have produced a leaflet which may help you
I try to avoid E numbers witch means ready meals etc and being careful where we eat out etc you may be completely different but a good dose of e numbers can cause a good flare in me
Thanks
Hi, I try (mostly) to stick to a diet of fresh produce, avoiding excess amounts of red meats and animal fats, things like sausage and bacon and any processed foods seem to make me generally feel worse. Also full fat dairy like butter and milk don't help me, I use skimmed milk and eat fat free yoghurts.
I read a book on lupus and other autoimmune illnesses which advised to only eat foods that swim, flew or grew! i.e. white meat and duck etc, lots of fish and veg,fruit etc.... In the main this helps me, I'm no saint and do deviate from time to time but I really feel worse if I'm not eating healthily.
All the best I hope you find what works for you.
Thanks good to hear what works for others
Hi everybody. I had the same issue with diet and what i should eat and what to avoid. In general my diet was always well balanced and very rich in fruits and vegetables. I had the same talk with my consultant about diet and what can help in order to improve.
Whole grain products, fruits and vegetables are something that helps. It is a diet that everybody should have and not just because you have lupus or anything else.
The whole grain products give you a bit more energy than the whites so i am guessing they are a good choice.
But in general what he advised me is to avoid ready meals (everyone should not just because you are sick) and try to stick to a good diet and exercise.
I was recently diagnosed with lupus and sometimes i wake up a bit tired and i always have for breakfast bran flakes and wholemeal toast. it helps a lot.
Because i am on hydroxycloroquine as well, i found it useful to have some milk before or take them with a glass of milk. It helped eliminate that feeling of having a full stomach.
hope this helps
I find it helps to avoid sugar, sweets, bought cakes and biscuits and all ready meals/processed food if I can, and I limit gluten and fried food. Am mostly vegetarian, occasional fish or chicken. Most veg is organic and I cook 'from scratch'. Cook in large amounts and freeze for when at work and for evening meals. I bake low sugar cakes with fresh fruit in them as treats or similar puddings. Shop bought 'treats' give me fatigue - too much sugar and fat probably. If I eat off a sensible diet my symptoms are much worse. Xxx
IMO it's one of the best meds available for treating it 
I had to quit chloroquine & couldn't take Plaquenil/Hydroxychloroquine and am now stuck with nada, due to heart ailments that don't allow NSAIDs... went off low dose pred. when finally dx'd with MCTD after 30 years of SLE dx! (they finally got it right: combo of sle, Scleroderma + polymyositis).
If I could I would be back on chloroquine in a heartbeat! but due to retinal side effect of the drug in a rare few 
I can't take it anymore...and now my vision is irreparably damaged.
Had I tolerated Plaquenil instead I would be okay today....and the eye issues with it are reparable too! It's worth every day of the wait for it's benefits... JMO
Regarding diet: over my lifetime of being ill, since age 11 and I'm now 61, no foods except alfalfa sprouts (which were a trigger for flares for me), but no other foods affected me one way or the other and still do not so I go with 'moderation' with everything I ingest.
Lupus is so variable and unique to the individual that it's not wise to compare.
Still, I do recommend trying the Hydroxychloroquine as antimalarials are well known to help with the joints, muscle aches and skin issues that can occur with SLE.
Good Luck!
yup I was gonna say alfalfa sprouts...
had the same issues with diet after being diagnosed with lupus nephritis following nephrotic syndrome and remissions n relapses.As i'm studying and needed a lot of energy i was recommended to have 2 egg whites a day,corn flakes,2 glasses of low fat milk,avoid oily food,no potatoes,no red meat ..can have chicken and fish,reduce salt intake and 6 glasses of water a day
To make it easier have cooked meals at home and avoid fast food,junk foods..
These things save my day after taking heavy medications.
Take care..
Hi, plaquenil took nearly 5 months before I noticed a significant difference and now my joint pain and fatigue are so much better. Last XMAS I could hardly walk due to the pain and this year I'm back running( not far, admittedly but running nevertheless!!) So hang in there, be patient and hopefully you'll feel the results eventually
With regards to diet, I read somewhere that the 'nightshade' vegetables ( potatoes, tomatoes, peppers, aubergine) can sometimes increase joint inflammation and pain due to a chemical called solanine in them....not sure how true that is but I avoid them ( I never liked potatoes anyway!) as much as I can. I still eat cooked tomatoes ocasionally but never fresh ones and like I said my joint pain is so much better....could be the plaquenil or a combination of both. But I'm happy to avoid those foods.
Good luck, there's lots of different things to try and you'll find what works for you.
Take care xxx
I read a report a few years back which suggested that any food/drink which contained aspartame should be avoided - so any diet/reduced sugar foods/drinks. It was quite a damming report on the product and suggested it was a very dangerous chemical that should be avoided by everyone, but particularly those with health issues. The report claimed that aspartame was known to be very dangerous but since the product/manufacturers were huge contributors to the American economy, nobody would take on the task of trying to get it completely banned. So whilst I still have the odd diet coke (with a little vodka!), I no longer drink it as a rule and avoid any products which contain it and, whether it be a coincidence or not, my Lupus has been quite well controlled for a number of years now.
The Lupus Foundation of America is another useful source of information, or at least views re diet. The following link should take you through to their 'master list' on nutrition:
Best
Great stuff thanks very much
Both olive oil, an unsaturated fat and high in Omega3-fatty acids, and fish of all kinds, are very good for your cholesterol readings
(by decreasing triglycerides) as well as
lowering your BP and
reducing your blood clotting; and
fight your inflammation levels;
Fish in different forms, such as canned salmon, tuna and even herring (all being fatty fish and so having more omega3-fatty acids) and best of all, fresh fish like tilapia,
(the Mayo Clinic site has the goods on tilapia (my favorite!) which was slammed by Snopes)
cod, sole, snapper, halibut, and salmon, tuna and herring if available -- as all are loaded with the fatty acids that go right to work on inflammation and heart/vascular health.
I also take omega 3 supplements with 1000 mg. DPH and 2000 mg. EPA, the 2 best acids of the lot so says my rheumy and for me, yes, they do help greatly with the swelling and pain in especially knee and shoulder joints. as I can tell when I run low or even run out and miss a day! Makes all the difference for a good quality day of life.
Lynny, from my reading I'm with you 100% in that diet sodas are the worst thing possible to ingest. I don't and never have had a liking for them anyway so no affect to me directly but from all the info available, everyone with SLE or any sister autoimmune illnesses should avoid them -- as should the average 'joe/jane' :).
Slomo, I also agree with the eating of fresh foods, produce & meats; excluding all pre-packaged meals and those packaged with nitrates or other preservatives
and yes, always cook from 'scratch' Better product and better flavors!
Achilleas, I agree with the 'multigrain vs. white flour' products, including breads, wraps and cereals. You get less carb count & sugars and more substance and feel satisfied faster while eating them. I find they also have more flavor and so add to whatever being served with.
Belee, you have a very valid point with the tomatoes in particular (I've read conflicting info with spuds and peppers). BUT cooked tomatoes in any form whether fried, sauced or sauteed are the way to eat them, to benefit from their chemical lycopene, an antioxidant... especially good for prostate cancers, as I found out with my husband's bout. He got through it with 3 months of radiation and a diet I kept him on for almost 2 years and still incorporate the foods 5 years later:). There is/was? no chemo for PC, just surgery if you are a candidate by your biopsy numbers, and he wasn't so it was radiation which did do some damage to his tissues
Mayo Clinic quote: "Side effects of radiation therapy can include painful urination, frequent urination and urgent urination, as well as rectal symptoms, such as loose stools or pain when passing stools." :end Mayo Clinic quote BUT it gave him freedom from cancer!
Good luck to you all with your diets and meds. When in doubt? Moderation!
Thank you for taking the time to give so much advice, have to say I am finding this site a godsend as my family and friends have little knowledge of lupus so I feel quite isolated at the moment, good to know you guys are out there
I would echo what others have advised here. I noticed a real improvement when I gave up gluten and reduced my sugar and dairy intake. Processed foods always make me feel worse. I eat oily fish to increase my omega 3 intake and I take a fish oil supplement, and I eat liver (it's not that bad!) for the iron along with other meats for the coQ10 (an enzyme that we all need that helps with metabolism to increase energy levels) and plenty of fresh fruit and veg.
I've noticed a slow but sure decrease in my symptoms over the past 18 months since being on this diet and I now hardly take any meds. I still have the odd flare and I just take the occasional nurofen or naproxen if the pain is bad, but generally I don't even need to any more. I know that I'm better at this time of year in the winter months when the UV is low, but I only had 2 flare ups this year, and I really feel like I'm in remission at the moment, so I think the diet is going well
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