While in Europe, I noticed an improvement in my dermatomyositis (DM) symptoms. This can be contributed to a few things: 1. My stress was lower while on vacation. 2. The weather was cloudy and cooler. 3. Food in Germany has stricter regulations meaning they don’t use all the additives and preservatives that we do, and fresh food is more readily available. 4. Europeans’ way of life in general is more relaxed and laid back. 5. I stayed very busy which kept my mind off my condition more.
Stress, warm weather, the sun, and diet all contribute to DM symptoms. Therefore, it makes sense why my rashes, muscle pain/weakness, and breathing issues were better while away. Since I’ve been back home, my symptoms have gradually started to appear again. The diet part is the most frustrating for me. When I see other countries with stricter food regulations, it upsets me that we don’t have these policies in the United States. Having these restrictions would be better for everyone’s health. While I try to eat healthy, whole foods, it’s not always possible either due to time or I lack the energy to prepare anything. I don’t think it should be necessary to pay more money for healthier food with fewer ingredients. In general, all food choices should have fewer ingredients and more whole, fresh options should be readily available for everyone.
My rheumatologist recently started me on a new medication to treat my condition. He was waiting to start this drug after my trip as it can make me more susceptible to illness. The new drug is called CellCept and is an immunosuppressant. It’s a much stronger drug than the Plaquenil that I am currently taking. It can take four to six weeks for it to take effect so I have to continue on the Plaquenil for the time being. The plan is for me to eventually stop the Plaquenil and taper off the prednisone. I am currently on 15 mg a day of prednisone and started at 60 mg/day back in April. It’s not a good drug to have to stay on long-term due to its side effects, so I will be glad to finally get off of it. Plaquenil is a drug which can cause vision issues. I recently saw my ophthalmologist to have several eye tests done since my vision has become more blurry since starting this drug. Fortunately, everything checked out ok. I will be checked again in February. I am also scheduled to have a bone density scan soon. Prednisone can cause osteoporosis for which I’m taking Fosamax for.
I am continuing to stay active but my activity level has been cut back greatly. The past two weeks have especially been challenging. The day before I headed home from my trip, I contracted COVID for the first time. Then, after my recovery, I received the flu and pneumonia vaccines. CellCept makes me more susceptible to developing pneumonia so this vaccine was necessary. The vaccinations caused flare ups: heliotrope rash on my eyelids, rash on my hands and knees, muscle pain, and breathing/chest issues. The same thing happened with the shingles vaccine, only worse. When I have flare ups, my activity level decreases due to not feeling well and having increased muscle pain and fatigue. I miss being able to exercise on a regular basis and being outdoors frequently.
I think the most challenging part for me is the trial and error with treatment for this disease. Since I work full-time, take care of my teenage daughter, attend graduate school, and have always lived an active lifestyle, it’s difficult to be patient in waiting to see what regimen works for me. I’m ready to feel better now. It still blows my mind that someone who’s healthy and takes good care of themselves would develop a condition like this. But, I will say that if I didn’t live a healthy lifestyle I know I would be much worse off. So, there’s that. They say patience is a virtue. This could end up being one of my most valuable traits when all is said and done. How’s that for looking on the positive side of things?
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