Multiple sclerosis (MS) medications can cause a range of side effects, some common and others more serious. I have been asked mostly by neurologists and some people often why I do not take MS medications. After much extensive research here is a list. My question to you, is it worth it? I have been prescribed Avonex, Copaxone, Prednisone, Aubagio and Kesimpta. All of these had many side effects that harmed my liver, kidney, weight gain and gave me diabetes. The first 5 side effects I have experienced every time I took the meds.
- Injection site reactions: Pain, redness, swelling, or itching at the injection site, especially with medications like interferon beta. I only experienced this with Copaxone.
- Flu-like symptoms: Fever, chills, muscle aches, and fatigue, most of these I experienced from the meds taken.
- Gastrointestinal issues: Nausea, diarrhea, and stomach pain. Yes, often.
- Skin reactions: Flushing, itching, and rash, which can occur with various medications.
- Headaches: A common side effect with many MS medications. An extreme side effect that often caused me to throw up.
More Serious Side Effects:
- Liver damage: Some medications can cause liver problems, which may require monitoring. I have this issue and must be checked often through blood work to make sure I am ok.
- Depression: Certain medications, particularly interferons, can worsen or trigger depression. People ask me this all the time. Depression or just extremely tiredness is my question to the doctor and people.
- Increased risk of infection: Some MS medications can weaken the immune system, increasing the risk of infections. Yes, it is very common and causes me to be extremely cautious around people. We do have people that go out in public sick and contagious. I am leery going out in public.
- Heart problems: Some medications may cause heart issues like heart failure. I have no issues now, but it is on my mind ALL the time.
- Cognitive impairment: Some medications can affect thinking and memory. Not yet for me but again wouldn’t be surprised.
- Progressive multifocal leukoencephalopathy (PML): A rare but serious brain infection, primarily associated with certain medications. Pretty scary symptoms!
- Cancers: Some medications have been linked to an increased risk of certain cancers, including breast cancer. Yet, neurologists still push to take medicine regardless of the side effects. A more recent drug called Ocrevus – the side effects are cancer risks. It makes me really wonder why people take this. It is like playing Russian Roulette.
Specific Medications and Side Effects:
- Interferon beta: Injection site reactions, flu-like symptoms, liver problems, and depression. I have elevated liver enzymes from the Avonex drugs.
- Glatiramer acetate: Injection site reactions, potential for serious complications like Nicolau’s syndrome (intense pain at the injection site, followed by skin discoloration (often reddish or bluish), and potentially progressing to tissue death (necrosis) tell me – who wants this? I took Copaxone and stopped because I did a lot of research and did not like how I felt and the bad redness and rashes from it.
- Fingolimod: headache, back pain, abdominal pain, diarrhea, cough, and flu-like symptoms. I had these symptoms a lot.
- Diroximel fumarate: Nausea, diarrhea, abdominal pain, and flushing.
- Ocrevus: Infusion reactions (itching, rash, flu-like symptoms) and increased risk of infections and cancer. This drug scares me, I refuse to even consider it.
- Corticosteroids: Insomnia, increased blood pressure, increased blood sugar, weight gain, mood swings, and fluid retention. I have diabetes and high blood pressure from steroids. I have pretty much all of these symptoms.
Important Considerations: Not to be sarcastic or make people think I am not caring, but for years I have talked with my doctors and neurologists, and their responses are: “yeah we know, but it is treatable by taking other medications to help with the side effects”. My thoughts, – I have become a pharmacy with all these drugs. Is my body harmed? These important considerations should include do your research, advocate for yourself, if you do not understand – ask someone until you receive the answer you need. For me, I was never comfortable with the healthcare professional’s response and when they become annoyed and not so nice it raises “red flags”.
- It is crucial to discuss potential side effects with a doctor before starting any MS medication.
- Doctors should monitor patients for potential side effects during treatment.
- Many side effects can be managed with medication adjustments, supportive therapies, or lifestyle changes.
- Patients should report any new or worsening symptoms to their doctor promptly.
- Some side effects, like infusion reactions, may require immediate medical attention.
Always be cautious, do your research, and make decisions based on research and answers you have before you decide anything. To this day, I still am not comfortable with the MS medicdines that are available and I do not take them. Thirty-four years with MS at 61 years old, still keeping on.