Many of us who have autoimmune diseases have to take medications that cause a lot of side effects. You know those commercials that are on TV that talk about the drug for about 5 seconds and the rest of the commercial is spent listing the possible side effects? People wonder “Who in their right mind would even touch that drug?” 🙋🏼♀️ Me. It’s hard for others to understand why we would take a drug that sounds so detrimental to our health. I’ll tell you why….because the “possible” side effects are worth it to control the disease. The key word is “possible” and that’s enough to sway many of us to take the risk because we are suffering and desperately yearning for a better quality of life. We don’t have a guarantee at a long, healthy life. In fact, some of us have a decreased life expectancy because of our disease. If there is something that can help me walk around and function and slow my disease down, I will take it, because without it, for me at least, my disease is very painful and unmanageable.
There are so many different drugs used for autoimmune diseases. I’ve actually tried quite a few of them throughout my health journey because I couldn’t find one that would work for me, but that story is for another time. There are many commonalities amongst the different drugs and the side effects can be very similar across the board. For example you may experience headaches, nausea, fatigue, a decreased appetite, hair loss, weight gain, chills, weakness, hives and the list goes on. It can also cause your immune system to be compromised which makes you more vulnerable to infections and puts you more at risk for serious illnesses such as cancer.
I spoke about Psoriasiform dermatitis in a previous post of mine. Psoriasiform dermatitis is an example of how a biologic can cause side effects that are an entire medical issue on their own. It’s more like having another disease with a separate specialist (Dermatologist) rather than it simply being a side effect. Another example of side effects that are on the more serious side are infections. I have had several, most notably cellulitis and sepsis. Since my immune system is compromised, I’m much more fragile when I come into contact with a virus or bacteria. Cellulitis is a common, potentially serious bacterial skin infection. The affected skin appears swollen and red and is typically painful and warm to the touch.
Another serious infection is sepsis. Sepsis came out of nowhere and was the worst experience of my life. It is a potentially life-threatening condition that occurs when the body’s response to an infection damages its own tissues. Sepsis may progress to septic shock. Luckily, mine didn’t progress to septic shock but it was still a really scary experience that required emergency surgery and being admitted to hospital for several days. It took me months and months to recover. I’m still working on it.
With all of these side effects at play, there are many things that I do to make myself feel better.
1) Talk to your doctor and journal. It’s so important to talk to your doctor to make sure the side effects are expected. Sometimes there are other options and your doctor might weigh switching you to a different drug depending on the seriousness of the side effect. The reason I went through so many biologics is because I kept an open line of communication with my doctor. When I would start a new medication, I would journal my symptoms and how I was feeling day to day so that when I met with my rheumatologist again, I had lots of useful information for her to base her decision on. I started journaling because there were times I would go to my appointment and I wouldn’t provide the entire picture of how I was feeling day to day because I couldn’t remember it all. I would leave the appointment and all these thoughts would come flooding in and I would regret not telling her this or that. I also tend to minimize things so the journal really helped me tell the full story. Since it can be months in between appointments and you don’t usually have a lot of time with the doctor, I would go through my journal the day before and summarize it for her.
2) Rest. Don’t feel guilty or afraid to admit that you just can’t do something. You don’t need to be exhausted to rest. As unpredictable as autoimmune diseases can be, there is some predictability to them as well. I know that an infusion of Remicade makes me weak, tired, nauseated, it gives me headaches and pins and needles in my legs. I set things up ahead of time so that after my infusion I can rest and I take the following day off. Sometimes I would purposely schedule my infusion on a Friday so that it wouldn’t affect my work week and my day off would fall on the Saturday when I could count on some help. I also set my Methotrexate on a day that I can schedule rest around.
3) Ask for help. I’m a mom so I don’t get much rest, but I’ve learned to lean on my husband and teach my son independence. It’s all about planning time for yourself. My son has a routine when I’m post infusion and I always treat myself to a night off from cooking dinner and order in. I’ve talked about the guilt I feel when my disease impacts others so I try really hard to be as positive and present as I can be. This can really confuse friends or extended family because they see me having a positive attitude and participating in conversations but they don’t see me collapse on my bed as soon as the couple of hours we spent together are over and we go our separate ways. Many people might not know how you’re truly feeling unless you take the time to communicate it to them. Not just by saying “I’m tired” but explaining it so they understand the effects of the disease or the side effects of the medications you’re on. I’ve had to ask for help many times throughout my health journey. It’s ok to take the mask off and be vulnerable once in a while.
4) Avoid caffeine. Switch to an herbal tea if possible. Caffeine can really aggravate side effects and there are many great options now when it comes to herbal teas. Peppermint or Ginger tea is great for my nausea. Apple cinnamon tea is a really good option since cinnamon lowers inflammation and is loaded with antioxidants. I find a tea very comforting and soothing and the right one can really help with some of the side effects from medications.
5) Tricovel and Leucovorin. For hair loss I take Tricovel and Leucovorin. It works for me.
6) Cannabis. When nausea is really bad or if I have a loss of appetite, I use cannabis. Oils are recommended and they take about 15-45 minutes to have an effect.
7) Meditation. When I can’t get comfortable due to side effects, I meditate. Breathing in and out improves circulation, reduces stress by calming the mind and helps with nausea.
8) Epsom salt bath. Epsom salt promotes sleep and reduces stress. It helps with constipation, recovery and reduces pain and swelling. I get a much better sleep when I take an Epsom Salt bath.
9) Drink more water. Staying hydrated is so important when you’re not feeling well. Even if you can’t eat anything, it’s important to keep drinking water. If you don’t like drinking water, I totally understand. Soups are great as well, even broth on its own. I’m sort of tea, soup and smoothie obsessed (all liquids that can keep you hydrated). If you make soup, always try to double the recipe and freeze some so that you have some on hand for those days when you don’t have the energy to cook.
10) Aromatherapy: Scent-infused oils heated in a diffuser to make a room fragrant can create a very relaxing environment. You can also add oils to your bathwater for a similar effect. This technique may help ease nausea, pain, and stress. Scents that I find relaxing are lavender and peppermint but it’s definitely a personal preference.
Side effects are unfortunately something I have to live with because they outweigh how I feel without my medication. I would love to hear about strategies that you use to cope with your side effects in the comments below.
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