Up until recently, I was dealing with acute graft vs. host. My medical team had me taking methylprednisolone also known as Medrol. My GVHD first appeared near the end of January (currently, it is June 24th) in the form of an itchy skin rash. The rash appeared on my face and then my arms, chest, and midsection. I also had some abdominal upset. In the beginning, I was glad to take the steroid - it helped cleared up the rash very quickly. They started me on a pretty high dose and each week, tapered it a little. There came a point though where they tapered me too soon, and the GVHD flared up. So, they upped my dose again and started the process over which was discouraging.
I’ll try to be positive but I need to be honest and tell you how rough this drug is. I only WISH someone had warned me. My doctor and nurses touched on a few things, but not everything. You can certainly google the side effects but here is what I have been experiencing:
External Changes.
My physical appearance changed. No, I am not just talking about the hair loss. This prednisone changed the shape of my body - from my legs, to my midsection, to my neck, back, and face - the shape of my body changed in such a way that had an emotional impact. Body image is a huge deal in someone’s cancer journey. Hair loss is usually what everyone thinks of. But body image changes can come from many different sources.
I developed moonface as well as a buffalo neck.
My midsection and upper body retained a lot of water.
My legs became very frail and weak. This was upsetting for me. There came a point one week where I realized as I was going up the stairs, that it was uniquely challenging. At the time, I wasn’t sure what was going on until I asked my nurses and doctor. Full disclosure - even getting up from the toilet became difficult!
Hair growth developed. Unfortunately, peach fuzz began to grow around my neck, jaw, and cheeks. I felt very uncomfortable by this.
Skin changes. My skin became thin. Some areas looked “wavy” and other areas developed lines, similar to stretch marks.
Internal Changes.
Drug Induced Diabetes - Essentially, I became temporarily diabetic and needed insulin.
Cardiovascular and Drug Induced High Blood Pressure - The steroid caused high blood pressure, and as a result, I needed medication to lower it. In addition, there was a period of time where I often felt palpitations.
Sleeping difficulties - This drug causes insomnia, night sweats and hyperactivity. The only way I could sleep and stay asleep was through the use of a sleeping pill.
Immunosuppression - This drug causes immunosuppression. And as a result, I needed to take additional prophylactic medications.
Muscular changes and weakness - As I mentioned above, I completely lost my leg muscles and abdominal muscles.
Bone strength/osteoporosis - My joints and my knees especially experienced pain and discomfort. I endured some bone weakness (osteopenia) and so I am taking a calcium supplement to counteract that.
Thrombocytopenia - Long term use of the steroid can lead to low platelets, which happened to me for a short time.
Shakiness, especially in my hands.
Severe knee joint pain.
Neurological.
One of my nurses called this the “crazies” and it is a pretty accurate description. There were moments when I was on the higher doses where you will experience some mood changes. For me, there were a few instances where I felt angry. I am not an angry person, but I experience some episodes on this medication. My husband and I jokingly called “hulk mode”.
Hyperactivity - Something else I experienced was high levels of mental hyperactivity. There were some nights where my mind truly felt like a tennis ball bouncing back and forth at full speed. Even though I should be so tired, there were days and nights where I was so physically and mentally active. I couldn’t turn off my brain, so to speak. In fact, this hyperactivity led me to clean many parts of my house!
I think I listed enough side effects. Like I said, I wish someone had told me this so that I could have mentally prepared. It’s been an emotional rollercoaster. Just when I thought chemo and radiation was over, I was hit with this. The hardest thing is waiting and not having a set date and the uncertainty of it all.
Update
Recently, my acute GVHD has now entered into chronic GVHD. The rashes that have developed in the last several weeks have been the worst leaving me itchy all over, especially my feet. While I am down to 8 mgs of prednisone, my medical team is trying two new approaches. The first approach is a medication administered through IV and the second medication is a pill specifically designed for people with chronic GVHD. I have seen a very slow improvement, and I am thankful for all the prayers. Update sure to follow!