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Please don’t go cold turkey on your autoimmune medication
An abrupt change in treatment could ignite dangerous or uncomfortable rebound symptoms. Here’s how to scale back your medication the right way.
Maybe your autoimmune disease has been under control for a while. Maybe you’re even in remission. If so, it makes sense that you want to quit treatment, especially if you’ve been paying money out of pocket for medication.
But that may not be the right move. Stopping treatment for autoimmune conditions such as Crohn’s disease, ulcerative colitis, lupus, rheumatoid arthritis or multiple sclerosis can be risky. This is especially true if your doctor doesn’t know what you’re up to.
Here’s what you should know before you ditch your medications.
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The risk of going cold turkey with autoimmune medication
For some combinations of conditions and medications, abruptly stopping treatment can lead to withdrawal symptoms, says Alexander Geevarghese, DO. He’s a rheumatologist at Northwestern Medicine Regional Medical Group in Geneva, Illinois.
As an example, Dr. Geevarghese points to long-term high steroid use. If you suddenly stop taking them, you may experience low blood pressure, nausea, fatigue, weakness and joint pain.
But what’s worse is that you might also be setting yourself up for a potential relapse of your disease. You might experience worsening of old symptoms or find yourself with new ones. If you have rheumatoid arthritis, according to the Arthritis Foundation, suddenly stopping treatment could cause more damage to your joints. (If you're newly diagnosed with RA, check out our guide to treatment.)
Why people often quit taking their autoimmune medication
Unfortunately, people with chronic conditions aren’t always great at following their doctor’s treatment instructions. One large review found that in studies of rheumatoid arthritis patients, adherence ranged from 94% to a shockingly low 9%.
There are a number of reasons for this, says Dr. Geevarghese. “But I think the biggest thing is the side-effect profile,” he says. A lot of medications for autoimmune diseases cause unpleasant reactions. This can cause you to be (understandably) worried about the medication you’ve been prescribed. If that’s the case, talk to your doctor about your concerns. She or he may offer other medications that can manage your disorder with less discomfort.
Other reasons people don’t comply with treatment may include:
- Not understanding why the medication is being prescribed
- A lack of trust in the physician prescribing the medication
- Having to manage multiple autoimmune diseases
- Medication cost
- Forgetting to take and/or refill medication
- Uncertainty about how much and/or when medication should be taken
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The importance of following your treatment plan
The goal of your treatment is to keep your disease under control and in remission, Dr. Geevarghese says. This can lead to better overall health and well-being. So it’s a problem when people with autoimmune diseases don’t take their medication as prescribed.
Research shows that people who skip medication doses or other treatment appointments have poorer health outcomes and increased medical costs. In general, patients who adhere closely to treatment have 26% better health outcomes than those who approach treatment casually, according to a study from the University of California, Riverside.
If you don’t like your treatment, you might be able to change it with your doctor’s help. But going rogue isn’t a good idea.
The right way to switch or quit medication
It’s your life, your body and your decision. “A doctor is never going to force you to take a medication,” Dr. Geevarghese says.
If you want a break, talk with your doctor about what you’d like to do and why. Dr. Geevarghese advises being open to options as you work out a plan together. “Some of my patients take breaks from chronic immunosuppressive medications, particularly if they’re in remission,” he says.
In most cases, if you’re ready to take a break, your doctor will help you work out a plan that allows you to slowly taper your medication, says Dr. Geevarghese. As you scale back, she or he will closely monitor your symptoms. If things go well, you may be able to quit the medication entirely.
But don’t do it alone. Your doctor should feel like a partner, and if that’s not the case, you might need a new provider. You should be comfortable expressing your concerns and asking questions.
When medication is just too expensive
If you’re struggling to pay for your treatment, there are a few avenues you can check out.
For starters, your physician may be able to switch you to a lower-cost generic version of your medication or one that’s covered by your insurance. Many clinics and hospitals also have patient resources that can help. Dr. Geevarghese says you should ask your doctor about this. They’ll point you in the right direction.
Other options include:
- Discounts from pharmaceutical companies. Pfizer, Novartis and Lilly all offer patient assistance programs. If your medication comes from one of those companies, you may be eligible.
- Government assistance. Low-income patients may qualify for Medicaid and other state pharmaceutical assistance programs. If you have a Medicare Part D plan, you could be eligible for Extra Help, a program that helps cover prescription costs.
- Optum Perks discount coupons. You can search by medication or present the Optum Perks discount card at the pharmacy to access savings as high as 80% off of usual retail prices.
Just because you rely on medication now doesn’t mean you have to forever. But if you’re going to quit, do it the right way. That’s how you improve your odds of success — and long-lasting health.
Rheumatoid arthritis treatment adherence: Patient Preference and Adherence. (2018). “Medication adherence and persistence in patients with autoimmune rheumatic diseases: a narrative review.”
People who follow treatment closely have 26% better outcomes: Medical Care. (2002). “Patient adherence and medical treatment outcomes: a meta-analysis."