Prednisone.

 

When taken orally, the pills are tiny. Who knew they could wreak such havoc on my life?

I’ve taken Prednisone for 4 years now, with two small 3-month breaks. When at my medical worst, I’ve taken as much as 40mg of Prednisone a day. Now, my baseline is 5mg. I have to titrate up when I flare, and then titrate myself back down once my symptoms subside. At 5mg, I don’t really notice the Prednisone. But, when I have to increase to 15 or 20mgs, I see a substantial impact on my quality of life.

Typically, the side effects that I get from Prednisone include insomnia, increase energy levels (the one value-added side effect!), increased appetite, and mood swings. The insomnia and mood swings go hand-in-hand. When I don’t sleep, I become irritable and foggy. And, Prednisone typically makes me feel angry. Irritability and anger don’t make for nice bed-fellows.

I manage the mood swings naturally and attempt to minimize the damage to those around me. Sometimes, that means not replying to a text message for a few hours, taking a walk, or deep-breathing. But if the length of time that I have to take increased levels of Prednisone is beyond a couple of days, these methods don’t always work into my lifestyle. At those times, I’ll try to get away for a few days or hang out at my house more.

If my methods of self-regulation fail and I do commit social grievances for those around me, I take responsibility for them. I know that I’m not myself (and most of those around me do, as well), but I don’t excuse the behaviors. I admit where I’m wrong and work harder to prevent it from happening again. I do try to educate my family and friends about the effects of Prednisone so that when I’m on stronger doses they can be a little bit softer in their approach.

Like every other aspect of this illness, I try to be as data-driven and educated as possible. Below are a few articles (there are many) that discuss the relationship between Prednisone and affect. Hopefully, they will help someone else who is in a similar situation.

1: http://www.ncbi.nlm.nih.gov/pubmed/10619339 “The Psychiatric Side Effects of Corticosteroids.”

2: http://www.ncbi.nlm.nih.gov/pubmed/15014624 “Mood and Cognitive Changes During Systemic Corticosteroid Therapy.”

3: http://www.ncbi.nlm.nih.gov/pubmed/9493946 “Mood Symptoms During Corticosteroid Therapy: A Review.”
4: http://www.ncbi.nlm.nih.gov/pubmed/2246106 “Exogenous Corticosteroid Effects on Mood and Cognition: Case Presentations.”

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And another round is done. // The importance of knowing your doctors.

I try to schedule my doctor’s appointments in batches to alleviate the stress that it puts on my job. In the past three weeks, I have had four appointments, one each with my rheumatologist, vascular surgeon, opthamologist, and neurologist. 

Each doctor ran their own set of tests, and each doctor concluded that my current set of interventions is working well, and there are no immediate concerns at this time (flare non-withstanding). 

My rheumatologist and vascular surgeon are two of my favorite people in the world. They have both changed my life. My vascular surgeon has saved my foot multiple times now, and he listens to me when I tell him things are going well, and when I tell him I’m having a problem. He is patient, and he works methodically using a data-driven approach to find interventions that work for me, and he makes sure that I understand each intervention that it chooses so that I can advocate for myself and communicate the decisions effectively to all of my other doctors.

My rheumatologist is a wonderful woman who, along with a fellow who has since moved on but was wonderful, has saved my life. She listens to me, and she takes time to explain the intricacies of Behcet’s. She also uses a methodical and data-driven approach, and works to grow my own confidence in my decision making. Many times along this path I have felt overwhelmed and like I do not know how to gauge what is a small and insignificant change in my health and what is a red flag. My rheumatologist has worked with me to create a hierarchy of symptoms that I can easily track and manage.

There are doctor’s in my network that I do not see anymore. There’s one doctor who is no longer allowed to be involved on my case. I’ve gone through my fair share of residents and fellows who asked a dumb question and have been kicked out of my exam room by their attending. One of the things that I have learned along this path is that knowing your doctors is a huge factor in the long-term efficacy of the treatment they prescribe. I whole-heartedly trust my doctors to have my best interests in their treatment plan and to plan their treatments according to my short and long-term goals. I also trust them to help me shape my goals into dreams that are attainable in my current state. I want to be hopeful but realistic. 

I am forever grateful and indebted to all of the doctors, nurses, and technicians who have worked on my case. Without them, I would be in a much different place. 

Some days, I’m just done.

I don’t want my blog to become a place where I only whine about medical woes, but I also want it to be a very real place where I convey what living with a chronic illness looks like in a very raw way. So, here goes.

This winter has been an emotional one. I’ve accomplished many things professionally that I am very proud of and worked very hard to obtain. But I’ve also been battling more with my physical health than I am willing to admit. I attempt to do everything that I can to shield my loved ones from the repercussions of living with a chronic illness, because it only upsets them.

In the past three months, I have had the flu twice, and I’m currently experiencing a cold and a flare that I would rather not deal with. As someone who prides herself on being professional and compartmentalizing her life, I am struggling with the fact that I had to take today off work to try to get over the cold that I currently have and allow this flare to start subsiding. 

For the immediate future, I am upping my Prednisone (something that I loathe having to do) and attempting to de-stress and rest.