Member Stories

Wayne has Interstitial Lung Disease related to Myositis In February of 2019, while doing a routine checkup on my liver (due to all the meds I take), it was discovered that I was in the beginning stages of liver disease. Due to the volume and type of meds I take for my Antisynthetase, we did not feel it was unusual, and decided we would just continue to monitor. I was on a 1-year recall checkup schedule at that time, and we decided to continue with that schedule. When I went for my yearly liver checkup in Feb 2020, it included an elastography, to make sure everything was still ok. This time, between the blood tests and the elastography, it showed that in the past year, I had gone from stage 1 to stage 4. At that rate, my liver would not hold out for a whole lot longer. My Doctor and I discussed the issue, and she knew that getting rid of medication was not a viable option. She said the only thing that might help my liver from getting worse would be a drastic change in diet. She said she did not expect me to do it all at once, but I should try to do as much as I could. The new diet was as follows: 1. No added sugar 2. No simple carbs (which included potatoes, rice, white bread, etc.) 3. No fried foods 4. No added salt 5. No alcohol Well, I have never been a drinker, but the rest!? I figured just shoot me now, because there is no point in living anymore. When I left the doctor’s office, I was feeling somewhat down, between the news of my liver condition and the only possible way of prolonging my life. I had decided in my mind though, that since I had always told my family that I would always fight, that I would follow the diet to the best of my ability and see how it went. My next appointment was in 3 months - surely I could do it until then. I immediately cut out everything requested. I switched from soda to diet soda or sparkling water. No more potatoes, or rice, and only whole grain bread. I started eating more vegetables and salads. I watched what meats I was eating and made sure they were lean, and more moderate portions. That was a Thursday. On the Sunday following, just a couple of days later, I went through a full withdrawal of the sugar. I felt horrible, and really Ill. My granddaughter, a nurse, was staying with us, was so concerned she wanted me to go to the ER. I decided to just stay home and spend the day in bed in the hopes whatever I was feeling would go away. I found out after when talking to a doctor that sugar withdrawal can be just like drug withdrawal; it seems I was having DT’s, (detox). Although it was difficult, partly from missing many of the foods I was used to eating, and partly due to getting used to salads and a more limited diet, I managed to stick to it. Each week that went by it got easier. I got used to the different foods and found many alternatives. On my next appointment, looking at my blood tests and elastography, my specialist was doing nothing but smiling. I was asked point blank “how did I get my liver back to stage one?” When I told her that I followed her instructions and cut out the foods she told me to, she was shocked. “No one ever does what I tell them to,” was her reaction. I did not expect such a drastic turn around. I was very happy about it though. Because of that change, it was an easy decision for me to continue with eating that way. There was a second part to this journey: Shortly after starting this new “diet”, I was also changed from methotrexate to cyclophosphamide, in hopes that it would also help with the liver damage. Well, after only 13 days, this new medication had almost destroyed my kidneys. A lucky timing on routine bloodwork showed the damage, and I was able to stop taking the new medication before it was too late. Because of this though, I had to stay off any new immunosuppression medication to allow my body to detox. This scared me, as my symptoms had always flared with even a small modification of my meds. Amazingly though, without the added immunosuppression I was still holding very well. In fact, I was feeling much better than I had in a long time. It is now 2021 and my liver has continued to stay healthy, and the liver disease has not progressed past stage one, and I am feeling so much better, and have still not added back that immunosuppression medication that I could not survive without before. I have continued to stick to my diet, although I do allow myself little cheats on special occasions. A small piece of birthday cake, a small spoon of mashed potatoes and gravy at Christmas, etc. I think that by having a better daily regimen made all the difference… This is no longer a diet, but a lifestyle change that has made a world of difference!