COVID-19 And Rheumatoid Arthritis and why I’m not taking my immunosuppressive medications

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One of the big questions that many people have been asking on forums all over the world is

Should I stop taking my rheumatoid arthritis medications until COVID-19 has passed

And I have been posting the same advice.

Generally, no. The advice from all medical authorities is that you should keep taking your medications.

However, like everything, its an individual decision. NO ONE knows your specific circumstances except you and your rheumatologist.  For a few, it will be appropriate to reduce or stop your medications. 

The vast majority should continue taking mediations.

The thing is the information keeps changing.  The situation is moving fast, and things that were true yesterday are no longer true today.  That’s confusing for a lot of people, but the only thing to do is to keep up to date with a reliable news source – for me in Australia it’s the ABC – and follow the advice given.

So now the question of whether to stop medication or not is largely moot.  The advice now is to stay home.

Let me repeat that. STAY HOME.

The best way to avoid getting COVID-19 is to not come into contact with anyone who has the virus.  At this time it’s impossible to know who might have the virus, but be as yet asymptomatic, and be contagious.  So its best to avoid all people. Not just for yourself, but for everyone.  The entire country, the entire world.

The virus is spreading in Australia at an exponential rate. The only way to save lives is to flatten the curve.  Some people still don’t seem to understand that, and I find that very frustrating.  So even if you don’t fully understand, or if you think you’re safe so you don’t need to worry, please just stay home anyway. 

Now, back to the medication question.

I’ve had people tell me I’m panic merchanting, and I’ve also had people tell me I’m not doing enough.  This is because everyone’s situation is different. Some people are higher risk than others. What’s right for me is not necessarily right for anyone else. 

But some people are really concerned about this question and while I can’t answer it for them, I thought it might be helpful to run through my situation, the factors that I have taken into account and the decisions that are right for me.

In truth, a lot of the decisions were very easy for me, circumstances dictated them,

I had surgery on the 24th of February, a three-level spinal fusion.  A big surgery.  I had to stop my immunosuppressive medications for this surgery (except plaquenil) as is always the case when having surgery.

After my surgery, my surgeon said I could re-start my methotrexate, as my wound was closed, and there was no sign of infection.  So I did. The week after my surgery, I took my methotrexate.

I chose to stay off my baricitinib because it causes liver problems, as Xeljanz (also a JAK inhibitor) did before it. Baricitinib is very effective, pretty much puts me in remission. But my liver enzymes were at 10 times normal and the trend was rising. And that’s not OK.

I stopped the medication in consultation with my rheumatologist, but given how well baricitinib worked for me, he wants me to try again.

I agreed to do this. Because, like xeljanz, it is a very effective medication for me. 

BUT I’m not going to do it now.  Because if I start baricitinib I will need to get fortnightly blood work to check on my liver function.  If my levels rise (as I’m sure they will) I will need to get a liver MRI and a liver stiffness test. (I have NO idea what that test is, its just what my rheumatologist told me).  He said he would bring in a hepatologist to monitor my liver, and we’d try and keep me on the medication and keep my liver healthy.

What it means is a lot of medical monitoring.  A lot of me having to be in medical environments, which are places where I am more likely to contact people who have COVID-19.

That’s too big a risk for me.

So no, I’m not re-starting my baricitinib.  I have very good, logical reasons not to. 

As for methotrexate, I took it for two weeks, but I felt intensely anxious about taking it.  That was two weeks ago when the virus numbers started exploding in Australia.  By comparing Australia’s curve to Italy’s curve, I could see we are on track for numbers like Italy is experiencing.  That’s a lot of infected people, overwhelmed hospitals and a lot of deaths.  It’s a frightening prospect.

I’m not usually highly anxious but this made me feel unsafe.  More like a gut feeling than anything else, but I have often regretted not listening to my guts. 

From all I’ve read, methotrexate is lower risk.  Biologics and high dose prednisone are the highest risk immunosuppressants.  And still, I decided to skip it.  Sometimes decisions aren’t entirely logical but I would prefer to have my RA symptoms than live with an irrational fear.

A week later I had my phone appointment with my Immunologist (Boy Wonder, the Australian Dr House who is trying to pull all my disparate signs, symptoms and co-morbidities together into a unifying diagnosis). I told him I was off my methotrexate and baricitinib and he was very happy.  I got the impression he may have suggested I stop them both if I hadn’t already.

He is seemed quite thrilled (and he’s not one for effusive enthusiasm), because he wants to  test me for some rare eosinophilic diseases and some rare slow progressing blood cancers, but my immunosuppressants interfere with the diagnostic tests.  So he asked that I stay off my medications for a few months, while he arranges some definitive tests.

Doctors orders. That definitely makes the decision far easier for me.  And I’m actually relieved.

He also reminded me that my adrenal insufficiency makes me very high risk patient and advised that I go into lockdown. I told him I was doing that already, and he was glad.

When a normal person gets an infection, their adrenal system will make lots of corticosteroids to fight the infection. People with adrenal insufficiency or Addison’s disease can’t do that.  So for me, if I take my medications not only do I not have the first line of defence  – a healthy immune system, but I also don’t have an adrenal system.  I’m very comfortable that stopping my medications is right for me, but my adrenal insufficiency is a big part of that decision.

The ‘average’ person who has RA should stay on their medications.

I am in no way advocating that people stop taking their medications.  I’m just explaining my thought processes, and my doctors’ directions.  My situation is not the same as your situation, but sometimes it helps to understand why other people have reached decisions, and the factors they took into account.

As I said, things are moving fast.  The whole question is now pretty much obsolete because now the direction for everyone is to STAY HOME.

If you stay home and don’t have contact with anyone but your family, then you won’t contract COVID-19.  It is the safest thing to do. Even people who are low risk should now go into isolation and only leave the house for essential purposes – get groceries, got to the pharmacy or the doctor, get petrol…that’s pretty much it.

Everything is shutting down, as everything needs to shut down.  All you have to do is look at Italy’s curve, and then compare it to Australia. If you still think this is just another flu, please reassess. If you’re young and healthy and think you’re safe, realise that in China 30-40% of the people in ICU were under 40 years old.  Your risk is lower, but you are not immune.  And even if do recover, do you really want to bring the virus home to aging parents or grandparents or your sister who has a compromised immune system?

Stay home. 

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