What nutritional vitamin supplements should be taken for SLE?

Many herbs can interfere with prescription drugs, or can be dangerous if taken in large quantities. It is important that you consult your GP before taking alternative herbal therapy, or dietary supplement.

Please read Anne’s story for a cautionary tale.

Very few long-term research programmes have been conducted into the efficacy of these herbal alternatives, and physicians are reluctant to recommend any specific remedy, particularly as lupus symptoms vary in the individual.

Another difficulty with some complementary therapies is that the exact dose of the active ingredient cannot be predicted or guaranteed. Complementary therapies may therefore add an additional complicating factor that your doctor needs to be aware of, so please check with your doctor before taking any supplements at all. Cod Liver Oil and vitamin E are taken by some patients. However, they should not be taken in conjunction with anticoagulants such as Warfarin.

The general advice given to patients is to have a broad, general and nutritious diet, with a slightly increased intake of oily fish such as, mackerel, salmon and sardines, and perhaps a little less red meat. Alfalfa sprouts are to be avoided, as they are thought that they may exacerbate a 'flare' of lupus. It is advisable to keep within the recommended calorie intake which is roughly 1,900 calories per day for women and 2,500 calories per day for men. These figures are based on adults with a sedentary lifestyle wishing to maintain their current weight.

The Lupus Research Team at St. Thomas’ Hospital conducted a pilot study to test the effects of a standard calorie controlled diet that is usually recommended from the dieticians department, compared to the South Beach (low glycaemic index) diet.

The principle of the low GI diet is that certain foods increase the blood sugar very rapidly as these sugar containing foods are easily digested. Thus low GI foods would include proteins such as fish and meat as well as vegetables and certain fruits such as strawberries. High GI foods would include any foods containing refined sugars such as biscuits, many breakfast cereals and sweets. Paradoxically dark chocolate which contains very little sugar may be taken in moderation. By keeping to low GI foods, weight loss may be achieved. Very few side-effects were experienced by patients on these diets. One striking advantage of both diets was that severe tiredness improved significantly with the weight loss. Keeping to a healthy weight will also minimise the risk to cardivascular health that is increasingly important in lupus patients.

Ann's Story - a warning to us all

I was diagnosed with lupus in 1988 but looking back at some of the things that happened in the years prior to that, it would seem that it’s been around for most of my life. After a couple of years during which I was quite poorly and felt like a walking toothache, our super team at St Thomas’ sorted me out and got the lupus under control – special thanks to Dr Hughes, Dr D’Cruz and Sister Angie Barwick, my GP, Dr Warren who keeps an eye on me and not forgetting all the love and support from family and friends.

As other lupus patients will agree, if you are ticking along reasonably well you don’t rock the boat if you can help it. I’m very careful about what I put into my body, so when I was shopping in a health food store a couple of years ago and spied a herbal detox remedy, I checked the box for any warnings. Having satisfied myself that there was nothing to indicate that the remedy should not be taken by people on prescribed medication, I thought I’d try it in the hope that it might alleviate some of the side effects of my medication, eg the fluid retention and puffiness.

I followed the instructions and took the remedy - which tasted very much how you’d imagine horse urine (the polite version) to taste. I didn’t feel any different than usual and, fortunately for me, the timing of this coincided with my routine check up at the lupus clinic. One of the lupus symptoms I have is a low platelet count, which is controlled by medication. The platelets’ job is to clot the blood and a ‘normal’ person should have a count within the parameters of 150–350 or thereabouts. At that time mine had been running somewhere between 40–70; the point at which I need to adjust my medication is if the count goes below 20. On the day of my appointment, the blood test results showed that my platelet count had dropped to 16. I’d had no prior indication of this as I don’t bleed or bruise when my platelets drop and therefore it could have had potentially serious consequences for me if I had cut myself, banged my head, or had a prang in the car etc. 

This may have been just a coincidence but the only thing I could think of that I had done differently was to take the herbal detox remedy. Having been warned by Dr D’Cruz that it really was not a good idea to take herbal remedies as they can have an adverse affect when taken with prescribed medication, my dosage was increased for a while and my platelets returned to a safe level. 

I’m ticking along quite well now apart from the occasional hiccup which we all have from time to time. Last year I took part in a Research Diet Study for lupus patients run by Dr Yeo. I followed a Healthy Eating Plan for six weeks. The plan is made up of 7–8 portions of fruit and vegetables, 3 portions of milk and dairy foods, 8 portions of bread, other cereals and potatoes, 2–3 portions of meat, fish and alternatives, 2 portions of fatty foods and 1 occasional sugary food per day. I think I presented a bit of a challenge as I’m vegetarian and avoid wheat and cows milk (I use soya or goats milk). Initially I was horrified at the list of food I had to consume per day but this was not a problem as I soon got to grips with the portion sizes given in the plan. For me the best way to go about it was to write down a plan of my meals the day before and I divided them into breakfast, mid-morning, lunch and dinner. During the course of the study we found that whereas I thought that certain foods upset me, I am in fact sensitive to the content of some mineral waters I’d been drinking with my meals and by process of elimination have found a couple of brands that suit me. Also, we discovered that the high fibre content in the peel of some fruit and vegetables was the cause of some discomfort I’d been having after eating. I now peel everything – problem solved. 

At the end of the six weeks I felt really well with more energy and had even lost a bit of weight. I have continued with the eating plan as it seems to work for me and is now a way of life. It’s easy to follow because you soon get into the routine of what you should be eating/portion size etc and it can be adapted to suit if you go out to eat.

With my increased energy, after first checking with my GP, last August I joined a Fitness/Leisure Club, I was given a personal fitness assessment by my instructor, Karl who designed a personal program for my gym workout which includes a warm up, cardiovascular training, strength program and cool down. My workout is geared to what I can manage and is regularly reviewed and adjusted if I’m having any problems. Karl has given me lots of help and advice and tells me to listen to my body and if I’m not feeling that good to just walk through my program or continue with yoga and swimming as far as possible. It does work and I’ve felt better afterwards.

When I joined the fitness club I could just about do a width of the pool - all on one breath without getting my face wet. This has increased to seventeen lengths and I’ve set myself a goal of twenty. It does help that the pool is all the same depth so I’m not worried about drowning myself. Also, I now breathe while I swim (but still don’t get my face wet). I also enjoy aqua aerobics sessions, which are a jolly good workout without putting too much strain on the body. I’ve been doing hatha yoga which has helped with my flexibility and mobility; after a class my body always feels very relaxed as if I’ve had a massage. The instructor, Karen Goss has built up a file on me and makes a note of which positions I find most comfortable. A pattern is emerging and it would seem that I’m at my best when I’m upside down. Karen is carefully building my confidence and coaching me towards doing a shoulder stand and when I’ve achieved that – a head stand! 

I hope what I’ve written is helpful, I count myself as one of the lucky ones as I’m able to work around the lupus and enjoy life – keep well and best wishes to all.

- Ann Wilkes Kendall, June 2005

A word from Anne's Gym Instructor

In early August 2004 I had the pleasure of meeting Ann Wilkes Kendall. My name is Karl Allen and I am a Gym Instructor at Clarice House. We take a general assessment of the person looking to use the gym and then set up a fitness program designed to suit the needs of the member.

Ann was booked in for the assessment and program with me. The experience can be nerve-wracking for the participant, as discussing personal health issues with a complete stranger can be an uncomfortable experience. At the time of this assessment I had only been qualified a matter of months and I was not entirely comfortable with this process either. Ann is a warm and friendly person and made me feel at ease – as well as I (hopefully!) made her feel. Ann described to me what an uphill struggle she had maintaining a steady exercise program due to a condition she has called lupus. She explained how the lupus affects her, including how it can leave sufferers feeling drained of energy and full of aches and pains and how the medication to control it can cause weight gain and puffiness.

Any person who exercises regularly knows the hard work it takes to lose weight. For someone to do all this and then suffer the symptoms of lupus and put on weight due to the side affects of medication must be demoralizing. Not for Ann. Although she must feel fed up about this, I sensed a fighting spirit and a will to carry on that impressed me greatly.

I found through the body composition machine that Ann had higher levels of fat and lower levels of muscle than the normal recorded range of someone of her age, weight and height. I explained that through regular gym exercise, with weight bearing activity, the percentage of muscle in her body would rise and in turn should result in a lowering of the fat percentage. I remember telling Ann that this is a difficult thing to do for anyone but would be especially harder because of the condition she has. I believe that to be realistic with someone about where they are is better that setting unreachable goals and I believe Ann appreciated that realism. What I did say though was than Ann could make a difference through determination and perseverance. I encouraged her not to attach herself to her weight and fat percentages but to concentrate on the little things that count such as the way she felt after exercise and the new found energy she may get from doing the exercise. I explained that these are way more important than the figures on the scales and I urged her to concentrate on how she felt about the exercise rather than what it was changing statistically.

Ann’s blood pressure was perfectly normal, as was her peak lung flow (maximum oxygen expenditure on breathing out). Satisfied than Ann was safe to use the gym, I explained that I would set a workout plan that would consist of some cardiovascular machines and weight bearing activities. I felt it important than Ann worked as many muscle groups as possible in her plan without it being too demanding. Ann suffers from painful joints, so to get those joints going through their normal range of motion with correct technique should help the pain. If a muscle or joint is sedentary and is not used often enough, there is an increased risk of arthritis, osteoporosis etc so I encouraged Ann to maintain those strength sessions 2 x a week in order to lubricate the joints and with luck ease the pain.

I placed Ann on the free runner (a striding machine), the treadmill and a bike. These are three tried and trusted machines and I set up specific plans on all three: a fat burner plan on the treadmill, (brisk walking with hills) aerobic training on the bike (varied levels of resistance) and a manual workout on the free runner. I also introduced the rower, which is a great calorie burner. Unfortunately, this exercise proved to be hard on her back, so we skipped that!

Since starting her program Ann has made it to the gym as often as she can, even coming back to swim when she had a nasty fall on the ice which left her unable to do gym work. I feel that now is the time to really move Ann on to the next level, change her exercise routine more regularly and keep a closer monitor on the levels she is set on the machines. With her determination and strong spirit, I believe this can definitely be achieved. I have noticed how she has improved her times on the machines since she joined and this is something we will be continually looking to improve as we move Ann forward. 

While we may have the odd spell where Ann is out of the gym, I am confident that Ann will remember how I told her that it is important not to focus on time lost but regain focus on what is happening now. I have every faith that is what she will do.

- Karl Allen, 17th June 2005