My story – AP Lupus/Scleroderma/Polymyositis/Sjogrens/Raynauds

[j_elder14]

I feel compelled to share my journey and how well I am doing… since I spent hundreds of hours obsessively researching this disease, symptoms, success and treatment stories, causes, all of it.

I am a 33 year old married mother of 3. For the past 6 years, I have been heavily into weight lifting and exercise, ate a very healthy diet, never smoked. In January of 2015, I experienced Raynaud’s for the first time. I didn’t know it at the time, but that was my first sign of having an autoimmune disease. I later found out that when Raynaud’s happens in a female non-smoker over the age of 30 it is almost always an autoimmune disease. At first the Raynauds episodes were few and far between, but finally 1.5 years in at my worst it was daily.

In July of 2015, I tried crossfit for the first time and vowed to never do it again. In the days following, I was totally wiped out. I developed extreme fatigue and pain that just didn’t go away. Over the course of that winter, it just got worse. By January 2016, I developed problems swallowing and choking as well. Then it went on to my right thumb, knee and big toe painful and visibly swollen. I was also always chilled. In April 2016 I went to my primary dr. and complained of my extreme fatigue and pain. I was used to being on the go all the time and now could barely function each day. She ask me if I thought I might be “depressed”. I found a new Dr.

In between time, I somehow become convinced that maybe I had endometriosis and sought a Dr. who would do surgery to find out. Autoimmune disease had never crossed my mind. I had the surgery and they did find some mild endometriosis. A few days after the surgery I broke down crying because I still didn’t feel better. I had this horrible lower back pressure and was convinced it was still endometriosis. I went to a specialist who ordered an MRI which showed a couple of unusual finding, tarlov cysts and enlarged piriformis muscle. So I found a new primary Dr. that treated someone I knew with the same cysts. During my first visit with him, we talked about EVERYTHING I was dealing with and he suggested I might have lupus and wanted to test my ANA. I also had elevated bilirubin for no reason so he scared me by testing for every kind of hepatitis as well, which was negative. He also checked my thyroid which was normal.

My ANA came back 1:160 Pos Homogenous pattern. From there I got into a rheumatologist. My creatinine elevated and EGFR low consistently since then, His immediate diagnosis was scleroderma then I was tested for every autoimmune antibody available. They were all negative. I continued to get sicker and very very scared. Scleroderma is the scariest thing I have ever heard. Since I wanted to be sure, I went to see Dr. Chatterjee at Cleveland Clinic, 7 hours away from home. He took one look at my and said I don’t think you have scleroderma since my skin wasn’t tight enough. He did lots of blood work and sent me on my way. Because I now suffer from dry eye and mouth he was pretty sure I might have sjogrens.

This was August 2016, when the blood work came back, my ANA was 1:320 atypical speckled pattern and my muscle enzymes were extremely elevated. My CK was over 8000 and should be under 300. AST was 120 should be under 80, aldolase was 44 should be under 8. I was told that I have autoimmune polymyositis and was admitted to the hospital with the plan of doing an emg, mri, muscle biopsy and starting ivig treatment. So I went 7 hours away from home, my husband and children, on an palliative care floor. The first night when the did my blood work, my ast was normal. So I asked what if my other muscle enzymes come back normal, they said no way. Sure enough they did come back totally normal 2 week later! However I did have an abnormal EMG and my barium swallow confirmed food was sticking my esophagus. (I previously had endoscopy that showed a ton of bile in my stomach, irregular zline but no barretts, and lots of inflammation) They were stumped and didn’t agree on my diagnosis. One team came and said I had butterly rash and livedo reticularis so lupus, other team didn’t agree. I was frustrated and decided to go home.

My local rheumatologist still leaned towards scleroderma and also threw out MCTD and UCTD and overlap syndrome. During this time I was so sick, had to go on a medical leave from work and started to look into claiming disability. I was always devoted and passionate about my job so this was hard. I slept with a thermometer by my bed and took my temp everyday and it was always in the high 99’s. I developed heart and chest pain and had several ER visits. My imaging started to show an enlarged heart. I was terrified, afraid to eat, felt like a horrible mother, wife, employee, friend.

I was offered and refused, imuran, cellcept,methotrexate, high dose steroids. I have never liked taking meds because I am sensitive to side effects. I read constantly about the disease and treatment options and came across the roadback and info on antibiotics. It seemed to make sense. I had gone to an integrated health facility before I knew of my autoimmune disease and they thought I might have lyme disease. They did blood work and the overall test was negative but I had IGG 45 and IGM 23. From what I read you can’t have IGM 23 without being lyme positive but I never really pursued it, just kept it in the back of my mind.

I ordered the new arthritis breakthrough book and read it. It made sense to me but I was skeptical. I felt it too good to be true. But I began plaquenil in September 2016 and decided to do a cocktail with Doxy 100 mg 3 times per week. I started it on my own as I had brought it up to 3 Drs who shut it down quickly. I figured due to low side effect risk it was worth at least trying before I try something more serious. I know that the drugs that lower your immune system can cause you to get every infection you come into contact with. I had to cancel a trip to Disney with my family right after the meds because I was so sick. I did get worse after I started. After about 6 weeks I was tired of the nausea and headaches and rash and thought they werent working anyway so decided to quit the meds. During the 2 weeks off things got even worse so I realized maybe they were helping and started again. Things were still bad all the way through December. The first weekend in December on Saturday, I kinda felt like myself again. Sunday I did too, and Monday and it has been that way since. I have energy, barely any joint pain or swelling, I can eat again for the most part, I take my temp every day still and it is now in the 97s and 98s. It is insane but I believe in it and I am so so thankful that I found it, tried it and stuck it out. I think I got ahead of it early and that helped too. I do believe that mycoplasma can be a cause of this stuff. I am sad for many people who will suffer these diseases and never even know to explore this option. Things are not perfect and raynauds is still an issue although slightly better. Scleroderma is something I will never erase from my mind of stop worrying about.

I know there are many parts of my story that I probably left out. I just wanted to share because I know that I spent so much of my time looking for peoples experiences with this stuff. I wish everyone the best and am happy to read of all the success stories with AP. I know there are some that it doens’t work for and hope and pray that someday this disease is made a priority and a cure is found. I am going to request to have my ANA taken again just out of curiousity. I had 3 positives total in 2016 and since I feel better, would like to know if it is normal now. Looking back before I got sick, I can recall having a weird bite type thing on my hip, probably 2.5 years before I got sick. I also developed a staph infection on my leg after a pedicure in 2014 and often wonder if either of those gave me an infection that led to autoimmune. I will never know but you can’t ignore the research that has been done around the infection cause…

[sunny22]

J,
Thank you for sharing your story. You have been through so much! I am so glad you found Roadback! When I was finally dxd with SD, I felt my world start to crash as I had worked with a friend who had this rare unheard of disease in the 80’s. Never wanting to be a guinea pig for all the scary meds that they insisted I must take, I miraculously found Roadback too! I am so pleased to hear your story. This gives everyone hope especially those who are beginning their journey. Thanks again and best wishes. Keep us posted!

[Author]

Posts