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.