In my post last week, I shared how I came to be diagnosed with Dermatomyositis. Now, I will continue the story by talking about what has happened since then.
After being diagnosed in 2019, my doctors decided to treat me with Plaquenil to treat the Dermatomyositis and as well as steroid creams to help the effects of the facial and body rashes. My care was coordinated between a rheumatologist and dermatologist. I continued to do my best and cover as much of me as possible when going outside, but to be completely honest, sometimes, I went out in t-shirts with no sunscreen or makeup. It's frustrating to have to cover and protect so much, especially in the summers when it's so hot out. And, even on a nice Fall day when the sun is shining but its only 65 degrees outside - its just beautiful out and you want to enjoy it. It's difficult to keep up with having to take so many precautions. You get tired of doing sunscreen, extra makeup, hats, scarves, and long sleeves all the time. Of course, anytime I skipped doing all of those things, I was angering the disease a bit, and paid the consequences with a flare up of a rash or muscle weakness. I just dealt with it and went on. I accepted that things had changed significantly for me and that most of my life going forward, I probably wasn't going to feel great or look "normal".
I changed Rheumatologists in the late Fall of 2019 when a new Rheumatology clinic opened up in my area. My first Rheumatologist was hard to get into. Even if he told me to schedule an appointment for a 4 week re-check, and I went immediately to his check out desk, they would tell me he was scheduling 7 to 8 weeks out. It was just too hard to get in when needed. This is something very common that auto-immune patients in the US face very frequently. There are not enough Rheumatologists to carry the patient load - I know of some auto-immune patients that have waited 6 months for an appointment! So, I switched to the new clinic that had much better availability (only because it has just opened). The doctor I saw there kept me on the same treatment plan, but with the addition of occasional Kenalog injections and oral prednisone for times the disease seemed out of control. The new clinic took great care of me and I was, at that point, content with the treatments I was getting. So, for the next year and a half, I "stayed the course" - did as much as I could to take precautions when going outside, getting bloodwork done every 3 months, taking steroids/getting injections when flares came up, took the Plaquenil, and used the steroid creams. I learned to navigate how to move around when my muscles were affected and to rest when my body was tired. It was definitely not ideal, or all "sunshine and roses", but I got through it.
In the Spring of 2021, I noticed that my hair was falling out rather rapidly, and, my scalp felt tight and itched like crazy. There were also raised areas forming on my scalp that were similar to scabs. Now, most of you that know me, know my hair has always been very full and thick, and yeah, I was a shedder in general. But, the difference now was that all I had to do was touch the top of my head, and hair would come out in my hand. At first, I did not connect this with the disease. I initially thought that it was due to chemicals in the shampoo and conditioner that I was using. So, I cycled through several different brands, trying natural products like crazy that didn't have harmful chemicals in them. Of course none of that worked. By July 2021, I had established care with a new Dermatologist as my previous Dermatologist had moved. When I saw her for the first time, I mentioned the hair loss and she told me it was the Dermatomyositis. How could it be that bad? I'd been taking the Plaquenil and treating flares with steroids. Yes, the disease was definitely very active at that point - the rashes on my face, neck, chest, and arms were probably the worst they had been since I was first diagnosed. But, I did not understand how the medication could be failing me that bad - I was taking it everyday!
At the time, I was also choking on everything I ate or drank, including just plain water. I choked during my appointment that day, and the Dermatologist asked me about it. I told her it had been very bad and swallowing food felt like something was ripping while the food went down. It was very painful and, sometimes, I wasn't sure I was going to recover from choking. She said that the DM was likely causing that too, as it can weaken the muscles around the esophagus which causes the choking. I truly feel that the new Dermatologist saved my life. My condition was only going to have gotten worse if she hadn't taken so many steps to help me. She recognized things that the Rheumatology clinic had been overlooking and worked diligently to correct them. She gave me three referrals that day - a new Rheumatologist (who saw me within a week due to her direct call to him), a Gastroenterologist, and an Ear, Nose, and Throat doctor. She also started me on Methotrexate (MTX) and told me to drop the Plaquenil as it was clearly not working at all. It is unusual for a Dermatologist to prescribe Methotrexate, but, she felt that we had to do something quickly to start attacking the disease while I got established with all of the other doctors. For those that are not familiar with it, Methotrexate is an immuno-suppressive chemotherapy medication that is used to treat auto-immune disorders and some forms of Cancer (such as blood and bone Cancers). Usually when it is prescribed, you take it only once a week. There are quite a few side effects and things that have happened to me while taking MTX and I will deep dive into that later on in post dedicated to it.
After seeing my three new specialists, everyone was in agreement that the DM was completely out of control, and was definitely the cause of my choking and swallowing issues. The new Rheumatologist became the point person for my care, and agreed to manage all the medications and treatments going forward. He increased the dose of MTX that the Dermatologist had prescribed, added in some folic acid to try and help manage side effects, and prescribed a course of high dose steroids to try an attack the disease quickly. I'd see him monthly for a while and then we could helpfully decrease the frequency of visits. He'd also ran some additional labs that my 2 previous Rheumatologists had not, and this is when we found out that I was TIF1 Gamma and NXP2 antibody positive. He told me that this put me in the 60 to 70% chance range of developing some form of Cancer associated with DM within the first 5 years of DM diagnosis. I thought I was cleared of that 2 years before! I'd never heard or seen anything about these antibodies, so, seriously, what was this? Why did my previous doctors never even check for them? I was shocked...that was definitely not a statistic that I was expecting.
Things like this can really make you wonder how well you are really being taken care of. Remember, I had seen two different Rheumatologists before this new one. We went back and checked all of my medical records from the previous two offices, and neither ran the antibody tests. I'll never have answers as far as why they didn't check that, so I do not dwell specifically on that. It just brings up that general question of, are your medical providers really doing their best for you? Are they checking all the right things? How do we, as patients, know? It's a hard spot to be in. We essentially blindly trust doctors only having met with them once or twice for a very short amount of time, and put our lives in their hands. Usually, people do not question doctors very much, so if the doctor says they want a particular set of tests done, we go with that and trust that all the bases are being covered. How do we really know the difference anyway? I sure didn't - I assumed that my previous doctors were testing for everything that they should be. I had no way of knowing that important tests were being skipped - especially in my first two years with this disease. Back then, I was mainly just trying to follow what the doctors said, take the meds, and survive. I wasn't really advocating for myself or asking a whole lot of questions.
I've changed quite a bit since the summer of 2021 as far as my health and medical care is concerned. A lot of that was the result of finding out previous doctors had overlooked some things and hadn't given me the full picture in the face of this disease. I've become more involved in learning about DM and other auto-immune disorders and I ask more questions when I am with any doctor - whether it be my primary doctor or any of the specialists I see. I've learned to advocate for myself and that I have options when it comes to my medical care.
Thank you for checking back in with me and reading this new post! I also greatly appreciate those that have subscribed to my blog! It truly means a lot to me to have people supporting this journey of mine. Please feel free to share my blog with your friends, family, and followers. My next DM post will cover my treatment on Methotrexate and I will have a craft project posted soon, too. Until then, take care, and, be an advocate for yourself!
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