falling off the band wagon

Day 4 of sulfa....I thought I was going into clinical remission....I felt so great! Now, I have stiffness and swelling. I have been down this road before, thinking I am going into remission only to know a few days later it was a fleeting and cruel joke. I am trying to stay positive but I don't know what to do. I want to get better, and I feel like I take 1 step forward and 2 steps back. I know that I can only expect positive results after 1-3 months, but I really felt great, even to a point of pre-diagnosis. I guess I have to keep hope and put my faith in the meds and that this step back is part of the process. That I am not going to wake up one day and be healed, even though that has happened this week! The uncertainty is the hardest part, and I don't think people understand what this feels like. Not unless you go through this process yourself.

cocktail take 2

So, after failing methotrexate, I am on the hunt for my new cocktail. Since graduation, I have done a liver flush to remove toxins from my liver, the suspect in my "toxicity." I started plaquenil--did pretty well for a few days, regressed, and then improved. I started sulfasalazine just yesterday, and I am not sure where this is going. I feel much better after having a painful few hours after taking it initially. I go through this every time always in the same sequence. First, there is questioning--should I take it? what side effects should I expect? what side effects may occur, even if they are unlikely? then, decision to finally take the darn thing and all its consequences, followed by, the "is it working" phase, which is entrenched with the "will this work" thinking, which is then followed by the "omg, this is the worst thing ever" phase. Right now I am in the "is it working" phase, and I hope to graduate to a new "it is working" phase. I know that my family tells me to  put my faith in something, every drug that I try, and I need to be positive. But to be honest, thinking positive does not will disease to disappear. I wish it was that easy, and that this was a quick fix. I have had moments after looking at a paper or doing some of my own research that I say, "eureka," this is a cure! And then I try it and it disappoints. I have had moments when I feel as though I am getting better....several times on methotrexate, I thought, oh man, this is it, I am going into remission! And it was not the case, not even close.

So, I hope this is the end to my hunt...I hope that this cocktail will give me some relief without any major side effects and that I can get back some functionality. I am feeling great now, but it is a feeling I know all too well. I wish that I could tell my patients something to get them through these times of uncertainty....I don't know that I am going into remission, but I am hoping that this is it and that my search will be over, and that hope is really something to hold on to.

MD finally

Graduation was a week ago! I cannot believe that four years went by sooo fast! The only thing I could think about that day was getting through it--the stairs! Up and then down. Stairs are know a problem for me. But with prednisone, my day was great! I made it through graduation, which is a feat in it of itself. I am so proud to have made it through! I am a doctor!

last week of medical school

I finished my last week, my last lecture, of medical school. Graduation in a few days. I am so humbled and honored by everything I have seen and done over the past 4 years. I think this perspective comes from a year of lots of sacrifice and learning as my health has taken a massive dive. At my last lecture, one very wise professor said "experience is just the test before the lesson." How true do those words ring? Today has been a day of highs and lows, ups and downs, goods and bads; doesn't that sound just like your typical day with arthritis? Or maybe just the beginning of the best Twain novel you will ever encounter. I have laughed and cried, been somber and reproachful. Today, everyone has something to say as we continue our journeys. People are filled with adages, sage pieces of advice, but being someone young and very new, this advice is lost without context. I feel as though I have the body of a 60 year old and wisdom of someone beyond my years as I am already trying to sort through my own feelings of life, death, and what it means to be a human. I feel like every moment is more precious because you never know when it will be your last; or in my case, the last pain-free moment.

time to kick up the pace

So, today I had an appt with the rheumatologist--whom I love. She is wonderful. It has been about 1 month since my last visit and I was somewhat anxious about it, just because so many things have come to pass since then. It turned out to be a very good visit overall. What I like about my rheumie is that she lets me talk; she lets me get it all out there, and its ok. It's a safe space where I don't feel like I'm judged or doing the wrong thing...it's so important, especially at times of uncertainty. I remember during my first year of medical school we were asked what we thought was the most important quality a physician had. Multiple answers were shouted out from intelligent, skilled, compassionate, etc. The list went on and on. While we were all right that these qualities were important, the most important quality a physician had according to patients was that they listened. We were all scratching our heads...what?!?! Listened? Isn't that what doctors do? Isn't that what we do when we have standardized patients? For those of you who don't know, these are real people that act like patients so that we can learn and practice how to interview a patient and do physicals. We all thought....um, isn't that obvious? Doesn't every doctor listen to their patients?

They don't...as a patient, I can tell you I feel like I'm not heard. I say one thing and it's like it goes in one ear and out the other. One doctor I'm seeing did not address one of the issues I was having, and when I brought it up, he laughed saying your patients will tell you the problem if you just listen. It's strange since I don't feel heard at all at times.

I am somewhat of a diagnostic conundrum. My autoimmune panel shows multiple autoantibodies at high titers...each of which is SUPPOSED to be 99% specific for such-and-such disease. Meaning, people who do have this test, have that disease, making it a rule in diagnosis. As I was discussing my symptoms, my doctor was like....hmmm, its more large than small joint now, and clinically it is looking like an inflammatory arthritis but not sure what exactly it is. I applaud her candor, just because we doctors don't know everything. There are arrows pointing from one side to another in the immune system and there is just no way of "knowing" anything really. In clinical medicine, its messy. Patients (and their diseases) don't read the textbooks, or abide by certain rules. So, when I look at my own symptoms, there is still a very real possibility that I have a disease that is undiscovered. When I read about autoimmune disease diagnosis and presentation, it is interesting how there are no rules. Some people have seronegative rheumatoid arthritis. Seronegative, eh? Like no immune markers at all? What is the pathophysiology if there are no markers? Or maybe the markers are present but too low, lower than the lower limit of detection, or maybe they are busy doing their thing in the synovium and not in the plasma to begin with? My point is that some people have disease, symptoms, clinical manifestation and no labs, while others have autoantibodies and little or few symptoms. While autoimmunity does not equal autoimmune disease, it is interesting to appreciate maybe we are seeing diseases at different stages of progression if we consider it to be one disease like RA, where you can be seronegative and convert at a later time. Maybe the treatment combination that works defines a subset of patients within a disease population and this subset is physiologically different but the presentation is the same. To me, autoimmunity is a whole new world (like in disney) of possibilities and the unknown. We don't know everything....maybe we know nothing compared to the vast spectrum of everything. It's an iceberg! 90% or so is underwater, the unknown.

So, my labs are all over the place, but as most experts say, its all about the clinical symptoms that drive the diagnosis. ANAs are notorious for being positive in at least 5% of the normal, healthy population. I remember back during second year someone said something that I always remember...you deserve the results of the lab you order. Meaning, if you order it, you better use it or be prepared to use it if it turns out unexpected. With patients with unexpected positivity, the literature says to look at clinical symptoms. Many of the conventional assays may be very sensitive and cross react and therefore may not be reliable. Bottom line is that you should only order what the patient presentation dictates you to order.

So, today I learnt that it is time to be aggressive. This is week 4 of MTX (methotrexate) at 10 mg. Next step is to increase to 17.5 mg...and I am a little apprehensive. If you google MTX and what people say about it, you get the whole spectrum. As for myself, I was very hesitant to get on it and my family was even more reserved about the whole idea. I hope (and pray) that this will be it. We discussed the possibility of combo treatment with plaquenil or sulfasalazine. Overall, she was very confident that we can get this under control, and her hope gives me hope.

it was the best of times and the worst of times

People write what they feel. Eventually, what you are trying to say will get on the page as long as you start. Here is my start--I am 25 years old and in medical school. My life seems to be on track, I am pursuing a career I had always dreamed of having...and then I got sick. At first, I thought it was the run-of-the-mill rundown so familiar to physicians and physicians-to-be. I decided, "it was nothing," "I would be fine," "I just slept wrong," "I didn't sleep enough," "It's just stress," "it's all in your head," and all the other reassurances we tell ourselves and the people that we love. However, I wasn't fine. I presented to a PCP and started telling her my symptoms--she told me I had depression and recommended I start prozac immediately. I presented to an endocrinologist who told me that "they don't deal with that type of problem," meaning they didn't deal with someone asking for help. My symptoms were very non-specific--aches and pains, fatigue, insomnia, malaise, etc. I initially thought it was my thyroid and I could get some synthroid and be on my marry way. Little did I know that life was about to change...I got an autoimmune panel. It turns out I had a positive ANA with high titers of several autoantibodies. At this point, I wasn't sure what this meant but I knew it wasn't good. You see, being in the medical field is both a blessing and a curse for the same reason--you know too much. I very quickly began seeing a rheumatologist who was shocked as much as I was about my lab results. I decided to take some time off to get it together again--apply to residency, take my boards, interviews, oh and get myself back together. I saw several different physicians as they tried to figure out just what I had and what to do. It was clear I had autoimmunity with some symptoms, but it was unclear diagnostically what that was. I tried several natural treatments in the hopes that the mild nature of my symptoms would melt away with supplements and vitamins that I was lacking. However, I got worse. I tried natural treatment after treatment until I realized, I cannot live like this. I filled the prednisone to get me through my exams. After the miracle of turning my life around, it was very clear I wasn't going to get off of it anytime soon. I continued to take it, returned to school, and everything was fine...let me get one thing straight, I was fine. I needed prednisone to get through, but I was fine. I didn't have a disease, chronic illness, or anything wrong with me. I just needed some steroids because it really is a wonder drug. I remember back to the first lecture we had in physiology on the effects of cortisol and steroids on the human body. I remember seeing the pictures of the habitus of these people who took steroids and the laundry list of side effects that ensued from taking them. Little did I know I would one day experience them. I think when I got moon faced and pred bellied, I decided that I needed to do something about this. Prednisone was a bandaid trying to mask a massive hemorrhage--it would palliate but not cure it. I realized that it was time--I started a DMARD.

I have thought about writing a blog on and off throughout this whole ordeal; perhaps, to document my own experiences but also as a way to help others through this tumultuous journey. While there are several wonderful blogs out there that have been very useful during the past several months, I think the unique combination of being a doctor (almost), a patient, and having an autoimmune disease has brought several different methodologies and perspectives to my door and has changed me as a person. I hope that the chronicles of my journey will help all those that have been in similar shoes, a chronic illness with no cure, as well as serve as a forum for people to comment on their own experiences. My journey with autoimmunity has been very atypical but I hope that patients and doctors alike can learn more.

It was the best of times and the worst of times...most days, this is how I feel.