So I talked about the symptoms and my journey to being diagnosed with lupus but really didn’t talk about what they treated me with. That was 8 years ago and I believe there are many new drugs and hopefully some better options coming out in the future.
In that 1 week hospital stay I got started on steroids and did them with a very gradual decrease for 1 year. I hated them and my rheumatologist knows to not even mention them as I will only take them on my death bed. they gave me such crazy anxiety! I had a hard time being a lone in the house. I couldn’t watch the news because it gave me so much anxiety. Keep in mind in those early days I was extremely sick. I was sleeping 20 hours a day. I would walk upstairs to take a shower and go back to sleep. Everything was exhausting. I was started on cytoxan ( breast cancer drug), and had a treatment every 4 weeks x 6 months. The first couple days were ok, then the nausea, poor appetite hit, I had horrible joint pain for 36 hours from the neulasta injections. I got frequent oral yeast infections that went down my throat, finally I was put on diflucan for a year along with the steroids. I went from 155 lbs to 124 pounds in 3 weeks! Went down to about 95 pounds, even on steroids, I felt like shit quite frankly.My mom and dad came up to care for me and my family and clean the house, help with meals, laundry because I just couldn’t do it.
After the 6 doses of cytoxan were done, I waited 1 month and went on cellcept. That killed my stomach for 1 month and then it was ok. When I moved back to New York, the new rheumatologist put me on plaquenil. By this time it had been around 3 years and honestly felt fairly well, Ate mostly vegan lifestyle, (would eat salmon when we would go out to dinner). Really very little pain, except when the storms came through. The plaquenil helped significantly, I thought I was feeling very well and then went on that and felt great. You need to get your eyes checked yearly if your on that!
3 years ago I had to have surgery and had to come off my medications (yuck). And of course I wasn’t healing properly so my restart of my meds kept getting delayed. I finally had to beg them to let me start some of it because I felt horrible, lots of pain and it took a long time to feel reasonable. In fact it never really went back to those days before the surgery.
I had to have a hysterectomy for a grapefruit size mass. I was told that lupus hates estrogen and I would feel better with the hysterectomy. I didn’t. I had already been 12 months without a period but my adrenal glands must have been making some estrogen. I have not been the same since that surgery. I was disappointed quite frankly because for the most part I was pain free up until the surgery. I became pain free about 3 months or so into the cytoxan regimen.
I have a beloved friend who questioned wheat all the time, I kept saying ” NOO, that’s not it” , because remember I was vegan and of course eating bread and grains. After about 6 months after the surgery I started really doing research on the internet what people with autoimmune disease were doing. Keep in mind too , because of my kidney damage I can not and will not take any NSAIDs, no motrin, nothing, and that is what helps my joint pain.
And guess what I found? I found that people who go vegan do really well for about 3 years and then they don’t feel well and that paleo is the answer.It had been about 3 years that I was vegan. Honestly I was craving meat. I think that that craving was my body’s way of getting me to change. Long story short I began to realize that YOU ARE WHAT YOU EAT!!! Do I think that everyone should be paleo? I really don’t know. I was sad turning paleo in some ways. I felt that a vegan lifestyle was more ethical, I think that diet is going to be very individual. I think it’s absolutely essential to give up all processed food, If you don’t know an ingredient you should not be eating it.
If you have an autoimmune disease I promise you you need to change your diet. First of all I believe that you will have to figure out what you can and can not eat. One diet does not fit all. So even though I closely follow a paleo type diet there are many paleo foods that I can not eat, almonds, oranges. I will tell you that figuring out what you can and can not eat is a brutal process. I never ever believed that I had a problem with bread, until I gave it up and I was dumbfounded what a difference it was that I felt.You must go without a food for at least 3 days, I tell every one 1 week, then eat it and see how you feel. If you get a headache, nausea, constipation, gas bloating, joint pain you have an intolerance and you need to stop eating it! it’s a long process but I figured out I was allergic to soy, rice, almonds ( I rarely eat any nut truthfully), gluten,chocolate, oranges, cauliflower,casava flour, dairy is an issue, do I eat it, yes but I pay the price with joint pain and stiffness for 3 days. I do take digestive enzymes which does help with some of the symptoms, I put my daughter on them and they dramatically helped with her belly issues and her headaches! Go figure right?
So if you are suffering from an autoimmune disease and have symptoms, there are many sources out there to help you figure out a paleo lifestyle and elimination diet. There are many people like me that got significant relief. I am not pain free but I am ok with my pain level. Eating anything other than meat veggies and fruit really isn’t worth it, once in a while I do it but for the most part no.
There will always be more to say about this crazy lupus, until then hang in there! I’m definitely there with you and praying for a better answer for all of us!