Ok, so first of all, the standing advice is:
STAY ON YOUR MEDICATIONS unless your doctor has advised otherwise.
This is general advice. For most people, it will be the right advice.
But this is an entirely personal decision, based on your personal circumstances. Depending on your disease severity, comorbidities, age, general health, ability to self-isolate and other risk factors, some people will be able to stop or reduce their medications for a few months, others will be better off to stay on their medications.
Remember, this is a new virus. There is very little data. There are a lot of questions and the truth is we just don’t know the answer to a lot of those questions. But your rheumatologist is in the best position to assess your personal risk factors and make the best decision in concert with you.
I’ve seen a lot of debate and even argument. This is pointless. We’re all different. Our rheumatologists are doing their best to interpret the data they have, but the truth is no one is sure how high or otherwise our immunosuppressive medications are. It’s well accepted that high dose prednisone, and biologics, are higher risk than methotrexate or sulfasalazine. But how his is that risk? No one can say for sure. There just isn’t enough data.
I’m a very educated patient I made my decision weeks ago, but due to my circumstances, it wasn’t that difficult a decision. It was largely made for me. For some people the best course of action is not so clear cut.
What do the experts say on stopping immunosuppressant medications
Every rheumatological and medical organisation recommends not stopping your medications without talking to your doctor.
American College of Rheumatology
European League Against Rheumatism
Australian Rheumatology Association
British Society for Rheumatology
There are also many other organisations offering quality information.
This article from Rheumatology advisor has good information. From the article:
“Many [clinicians] are temporarily slowing or holding off DMARD therapy, but every clinical situation is different. Recommendations need to be personalized, emphasizing individualized care by doctors who know their patients well.”
CreakyJoints also has a wealth of information and advice, sourced from rheumatologists and experts.
And the advice is all the same. DO NOT stop your medications without consulting your doctor.
Realise that is not the same as “do not stop your medications”. Assess your risk (and your risk aversion) and contact your rheumatologist if you need to. Only if you need to. Don’t add to what is already a very high patient burden for many doctors.
REMEMBER: It is not safe to stop taking prednisone if you have been taking it long term, you need to taper your dose. Anything over a week, you need to taper down the dosage. Stopping corticosteroids suddenly can be life threatening.
Personal decision based on personal circumstances
I’m also going to say this: Whether to stop or continue to take your immunosuppressant medication is an EXTREMELY personal decision. It is entirely individual, based on your personal circumstances. Your best friend may have the same diagnosis but have entirely different circumstances. So make your decision for yourself. Don’t be led by anyone else…not friends, family, or bloggers like me…no one but your doctor.
I have decided to stay off my methotrexate and my biologic. That’s what’s best for me. What’s best for you will depend on:
- The medications you are taking. A person taking only plaquenil is in a very different position to someone taking a biologic, plus methotrexate, plus plaquenil. The latter person is obviously far more immune compromised than the former.
- The severity of your disease.
- Your comorbidities. If you have COPD and a history of pneumonia, your risk is higher. People with heart disease are not faring as well if they get infected, and heart disease is a common comorbidity for people with Rheumatoid Arthritis. If you have diabetes (either type) this raises your risk considerably. If you have kidney disease you are at higher risk.
- Your age. Older people are at higher risk. Different sources define “older” differently, but certainly if you are over 80 you are very high risk. Over 70 is better, but still high risk.
- Your anxiety levels. There’s no use staying on your medications if you are paralysed by anxiety because of the medication.
- Your ability to self-isolate. The best way to reduce your risk of getting COVID-19 is to stay at home and avoid all other people. And stay on your medications. Some people can self-isolate, some people cannot. Pretty soon most people will be locked down, anyway. Isolating is the best way to reduce your risk.
As I said, I have stopped some of my medications, because that’s what’s best for me. I’m going to write out my though processes and reasons why and my doctors’ thoughts, so that you can understand why and how I came to this decision.
I am not trying to influence anyone. Every person has to assess their own personal situation. I’ve had a few people ridicule me, and that’s OK. I’m doing what’s right or me.
I’m not a panic merchant, it’s important that people think about their own circumstances, and make their own decision with their doctor. Most people will be best off to keep taking their medications. The best way to reduce your risk is to stay home! #stayhome
I’m not taking medications on doctors orders. That’s the best course of action for me. Your mileage will vary.