The availability of the internet and the finding of the Road Back website saved me. After a year of low white blood cells/bit unwell, I suddenly got swollen joints in Jan 2014 with a slightly raised RF. Doctors said early RA (or possibly PA as i had very mild skin psorasis). Doctors wanted me to start on placquenil with methotrexate next as things progressed.
I set about reading everything I could about RA. My searches led to this website, and it seemed extraordinary that there was hope. I am in the UK and had seen NHS RA doctors as well as paying to see one of top private RA doctors – all treated RA as though there was no hope apart from a long progression of strong medicines. I set about reading every story of hope, remission, Ted talks, books, articles – anything that showed there was another way to approach autoimmune diseases. I knew food had a direct inflammatory effect for me as in 2014, after almost every meal my hands and feet, and sometimes knees and elbows went red and hot.
Through this website, I got to see an AP doctor in the UK who first suggested I went on what seemed like a radical anti inflammatory diet. I cut out dairy, gluten, sugar, alcohol, tea, coffee, deadly nightshades for two weeks – my psorasis went, and joint pain definitely a bit better.
In Sept 2014, he prescribed minocycline 3x a week, plus keeping to the diet as much as was possible. I took a large amount of vitamins and probiotics. I started making kefir and kimchi to help with probiotics & gut, and eating/drinking/ smoothies including huge amounts of tumeric/ginger and veg. Very slowly, I noticed my joint pain, and swelling in hands/feet was getting better. In 2015 I went up to minocycline 5x a week. Slowly my RF came down from a high of 45, and by 2017 it was back at normal levels.
Through 2015 & 2016, very slowly my joint pain got less – not always gradually, as such is the nature of minocycline and RA, sometimes it got worse, before improvements.
Through 2016 & 2017, I also tried various non-medical treatments, including Kambo frog treatment, meditation, and a five day water fast. The fast was hard to do, and very boring not eating, but had fabulous results. It helped get out rid of some deep seated swelling in my feet, and pain in elbows. I started cold water swimming (in the UK that means breaking the ice sometimes). I started it for fun & love of water, but it is also meant to very good for immune system.
At the beginning of 2018, I would hesitantly say I was free of pain and swelling. By mid 2018, I stopped taking minocycline. This AP antibiotic had helped me enormously, but I thought it is now time to concentrate 100% on my gut, and therefore time to stop the antibiotic. Throughout I have eaten an anti-inflammatory diet, and still do. My nutribullet travels everywhere with me to ensure I can have a tumeric/ginger/veg smoothie at least once a day. When possible, all food is home made, and I eat a mainly vegetarian/occasionally pescatarian diet, with lots of fermented foods. I am not as strict as I was, as food doesn’t effect me in the same way. However, if I eat gluten/sugar/over acidic foods for more than a few days, I will get reminder pains in hips or elbows. So I will always consider myself in remission, and am incredibly thankful for each day of health.
I will always be hugely thankful to the amazing folk on the Road Back who helped me/chatted to me in those early dark days, and gave me reason to hope.