What is Lupus?
Patient Stories
Anne's Story - a warning to us all
A lot of people would prefer to take a 'natural' remedy than take medicines prescribed by a doctor, but not all 'alternative/natural' medicines are as harmless as they seem! Here's Anne's experience:
"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 well known 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 steroid dosage was increased for a while and my platelets returned to a safe level".
Dr D'Cruz says: "Herbal supplements are very widely used by patients who have lupus. Whilst the vast majority of these may be safe, patients should always let their doctors know what supplements or other remedies they are taking.
The problem is that we do not know the effects some supplements may have either on lupus itself or on some of the medicines commonly used to treat lupus. The most important example is Warfarin, taken by patients who have Anti-phospholipid (Hughes) Syndrome. The list of other drugs that affect Warfarin levels is long and even certain foods like leafy green salads may affect Warfarin. If you are on Warfarin you should be especially careful of herbal supplements or alternative therapies and always check with your doctor or anticoagulation clinic".
