Before I was diagnosed with RP, my GP had suggested that because I was experiencing inflammation I should consider cutting inflammatory food from my diet. She then listed what she would recommend, in order of biggest impact: gluten, sugar, alcohol.
Now, you don’t know me, but I simply love bread, I love chocolate, and I love wine as well as gin martinis. Giving up any one of these things was going to be a trauma, never mind thinking of abstaining from them all. So, I spent a day or two thinking about it and decided that the lesser of the evils was to give up gluten: I knew people who did that and they managed quite well, so I was sure I could too! That was it then, I went wheat and gluten-free (GF) on February 25th 2017.
I’d been having flares of RP initially monthly, then bi-monthly, then 3-weeks in a month, and then with only 1 day of normality between flares. So, after going GF, I was thrilled about the results: I went for 5 weeks without a flare and then 12 weeks.
Going GF was great! The GF pasta options are awesome, there is a bakery near where I live that provides a lot of GF options, all restaurants cater in some way for GF, and, other than the bread (although I’ve found some I like), it’s really been an easy transition. I love to bake and cook and I found tonnes of great recipes that have worked out super well and been popular with everyone (GF or not), so I don’t feel in any way deprived.
I really thought I had made myself better, but after my 12 weeks being flare-free, I only had 2 weeks before the next and then 2 days before the next. It was brutal, painful and exhausting, and so when I went back to see my Doctor 4-weeks after the flares, he said “I’m really glad to see you here. I thought the next time I would see you was intubated in the ICU.” Now,…. I have a daughter, a husband, family, friends, a life and plans for that life, so I was shocked by his gravity and jolted into reality and acceptance that I need to do something to fix what I’ve got before something really bad happens. I’m only 39 for fuck’s sake – I’m supposed to have a long life and I’m determined to make sure I get it!
On September 1st 2017 I gave in and took the Methotrexate, not because I think it will cure what I’ve got, but because I think it can control the flares while I figure out a plan.
With the GF and the Methotrexate combination, I went 19 weeks and 2 days between flares. When the next flare happened right before Christmas 2017, my Doctor suggested “a short course of Prednisone”. Now, if you’ve never heard of this particular beauty of a drug, I suggest you have a look at its Wikipedia entry: Prednisone. I NEVER want to take this drug, especially when it’s not proven to help what I’ve got. So, this was my kick in the ass to put a plan into action. I am no longer going to just to hope that the flares will cure themselves while I’m chowing down on chocolate, wine, GF cookies, ice cream, and other delicious, but likely not helpful delicacies.
I’m working on the plan of action while I finish off the cookies, wine and chocolate remnants from Christmas and prepare for New Year 2018.
I’ve been reading bits and pieces about ‘leaky gut’ and anti-inflammatory diets. They’re not easy and look like a lot of work, but I’m formulating a plan that will work for me in my busy life. I’m torn between going wholesale AIP (Auto-Immune Paleo) or just Paleo, or just giving up sugar and alcohol as well as the gluten. The jury is out right now, but New Year is just a day and a bit away and I have to decide and be prepared to ‘go’ by the end of January (my self-imposed date).