My biggest piece of advice for anyone dealing with an autoimmune condition or other forms of chronic illness is to be an active participant in managing your health. If you don't comprehend what your rheumatologist is telling you, ask him/her to slow down and explain to you what they are trying to say in laymen's terms. Some physicians get caught up in all the medical jargon and need to be informed when their patients need them to explain things in a different way. I am fortunate enough that I work in the medical field and have a little more understanding of medical terminology, procedures, and medications than the average person. If I don't understand something, I already have the resources at my finger tips to do the research and talk to my rheumatologist in more detail on the areas I have questions.
There are two kinds of drugs used to treat rheumatoid arthritis, they are classified as DMARDs, disease modifying anti-rheumatic drugs. DMARDs are either non-biologic, or biologic. Click on the link below for information regarding traditional and biologic DMARDs.
http://www.arthritis.org/living-with-arthritis/treatments/medication/drug-types/disease-modifying-drugs/drug-guide-dmards.php
It has been a year-and-a-half since my diagnosis. In that time, it has been challenging to find a drug regimen that is right for my body. For the moment, how long is uncertain, my rheumatologist has found the magical combination the keeps my symptoms to a minimum and allows me to return to the activities I love.
In June 2015,the day I received the call from my physician with the diagnosis of rheumatoid arthritis, he sent a prescription for methotrexate to my pharmacy and that I should follow up in one month. I started on 10 mg once a week. I was glad this medication wasn't daily as I have high blood pressure (hypertension) and am already taking a daily medication that I already don't want to be taking. More on methotrexate and how it is used to treat rheumatoid arthritis click the link below.
http://www.arthritis.org/living-with-arthritis/treatments/medication/drug-types/disease-modifying-drugs/methotrexate-side-effects.php
In September of 2015 I was having some abdominal pain that was more intense than my usual, enough cause for concern for me to go to the emergency department. I have a long history of abdominal issues as a results from a medical emergency at age 16 that almost took my life. But, being that I was on methotrexate, I had more cause for concern than usual with abdominal symptoms and pain. The ER physician found nothing acutely wrong that warranted admission, but my liver enzymes were very high indicating an issue with my liver. Normal lab values for AST are 2-54 and ALT are 7-39 . My AST was 554 and my ALT was 343. I have had high liver enzymes in the past, but the physicians just brushed those occurrences off as fatty liver disease. Every time my liver enzymes were high I had a hepatitis panel drawn and was always negative so no further investigation was done as I was a young and relatively healthy adult (at that time). This time was different, being that I had RA and was on methotrexate. I was to follow up with my primary care physician in a few days. On follow-up with my primary care physician regarding my liver enzymes her ordered repeat lab work. This time my AST was 754 and ALT was 428. There was something going on and it needed to be investigated. Being that I was on methotrexate at the time it was considered to be a possible etiology for my elevated liver enzymes, but with my history of elevated liver enzymes with no clear cause, there was the possibility of an underlying, undiagnosed condition that could be exacerbated by the methotrexate.
One month later, I underwent a liver biopsy. There was cause for concern of autoimmune hepatitis. After the results came back, again I received a call from my primary care physician with a diagnosis, I have autoimmune hepatitis. Yet again, I thought I already was going through enough and was proven wrong. The thing is, when a person has one autoimmune condition, there is a significant chance that they may have more than just one autoimmune condition and it's only a matter of time as to when a second autoimmune condition will arise. It only took 6 months after my diagnosis with RA to be diagnosed with another autoimmune condition. Actually, in that 6 month time frame I was diagnosis with 2 additional autoimmune conditions. Between the RA diagnosis and autoimmune hepatitis diagnosis, I had a condition known as Raynaud's phenomenon develop. It is yet another autoimmune condition that can be brought on by RA or as a disease all its own. Fortunately, I had secondary Raynaud's and not the more serious diagnosis of primary Raynaud's. Nonetheless, upon the diagnosis of autoimmune hepatitis, I was to immediately stop the methotrexate. The additional damage to my liver was not worth taking this particular drug. Therefore, I started on Plaquenil 400 mg daily. Plaquenil is an anti-malarial drug that is also used to treat rheumatoid arthritis. Most cases patients take both methotrexate and Plaquenil, but I could not. For more information on Plaquenil and how it is used to treat RA, click on the link below.
http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Hydroxychloroquine-Plaquenil
After starting Plaquenil in late November, early December 2015 my symptoms were slightly more manageable, but my quality of life was still greatly affected. I had various hobbies I enjoyed that were proven difficult at times and sometimes I was not able to carry them out at all. I love photography, jewelry making, watercolor, crafting, cooking, baking, and quilting. I grew up being outdoors. Fishing, camping, kayaking, hiking, exploring is in my blood. My life was slowing losing these activities or they were difficult. I pushed myself through the pain sometimes, when I know I shouldn't have. It is our responsibility to listen to our bodies and I did not want to at times. I guess it was the denial and depression at times. Here I was, a 27-year-old woman in the 21st century and I had difficulty tying a fishing knot, putting a bead on a string, pulling a needle through a piece of fabric, and cutting up chicken for dinner. One of the most disheartening things to happen to me was when I could not even hold a cup of water. I could not grasp the cup well enough and I had tremors in my hands that required me to carry the cup close to my body and with both hands. I mean seriously, a cup of water was too much.
From the end of 2015 to mid 2016 I had good days and I had bad days. But, I still did not have long term relief from my symptoms. I don't think I went more than 3 weeks in between visits to my doctor or the emergency room. Sometimes, multiple appointments in one week. I was not getting back the quality of life I desired on the Plaquenil. This was difficult for me. Steroids was out of the question for me. It had been mentioned the option of taking steroids for immediate, yet possibly short lived relief of my symptoms. For me, it was out of the question. My body does not like steroids. I gain weight on steroids, which is a common side effect, but not one I was willing to endure. I had been trying to lose weight and was successful up until I had an allergic reaction at a restaurant, my food was contaminated with avocado. Yes, I am unfortunately allergic to avocado. Benadryl did not take away the burning rash from my body and was given high dose steroids to counter act the reaction. I put on 10 pounds in what seemed like the blink of an eye which lead into a short period of depression.
Finally, in April 2016 my primary care physician said it was time to refer me to a rheumatologist. The next step in my therapy was to advance to biologic DMARDs. This is something my PCP was not comfortable with overseeing and therefore it was time for me to seek specialized medical supervision/treatment. After establishing care with a rheumatologist and undergoing lab work as well as x-rays, despite almost a year of drug therapy, I still had moderate to severe rheumatoid arthritis. My CCP level was still very high and my rheumatologist informed me it is time to get more aggressive with my therapy. The imaging of my hands and feet revealed some changes happening in the joints of my feet/toe with evidence of bone erosion. All this combined, high rheumatoid factor, high CCP, and visual changes in imaging of my bones/joints, the recipe for crippling deformities and pain were already brewing within my body. It was a scary thought to think I could be one of the patients with RA who's hands and feet were deformed to the point I couldn't work, walk, do the activities of daily living as essential as getting dressed by myself. If I did not take action now, I was certain to fall into the category of disabled due to complications of rheumatoid arthritis. I am not ready for that. Although rheumatoid arthritis does not discriminate against age, I feel and still feel I am too young to be going through this.
I had two options available to me: first, was to add low dose steroids for a few weeks to months on top of Plaquenil; second, was to start on a biologic DMARD. For me, this was an easy decision. My mind was already made up that I did not want to be on steroids. With this decision, I began therapy with Humira in June 2016. This is a once every two weeks self injection long term drug. Getting the drug and the information regarding it is slightly overwhelming. It's a specialty drug and it is very expensive. It took 3-4 weeks to get everything sorted out and get my first injection. Through the Humira drug company, I am participating in the ambassador program which helps alleviate most of the anxiety and stress of the entire process. From getting your prescription filled, to demonstrating the proper technique of self injection through an online video or a certified nurse coming to your home for hands on training, to your first injection, and even being your resource for any questions and concerns you have regarding side effects, the ambassador program is such a blessing. You even qualify for copay assistance to help with the financial burden of such an expensive specialty medication. For more information regarding Humira and how it is used to treat RA, click on the link below.
https://www.humira.com/rheumatoid-arthritis
(Humira 40mg self injecting pen, photo of my first injection pen)
I currently take Humira in combination with Plaquenil. This seems to be the drug combination that my body needs. I am back to doing ALL the activities I love and enjoy. My symptoms are minimal. I hope and pray that this is a long term trend and that I am on my way to remission. At the moment I am going 4 months between appointments with my rheumatologist. Still having issues with my liver enzymes going up slightly here and there, but nothing as alarming as they were in September 2015.
No comments:
Post a Comment