#RABlog week 2016 – Biologicals

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Todays prompt is:

Biologics can be scary – What did you think the first time you Googled your biologic medication? What advice would you give a person just diagnosed when it comes to biologic medications? Give your readers the scoop on biologics

 

Ok, I’m going to be really blunt.  Biologicals might sound scary when you google them.  But when you have severe Rheumatoid Arthritis with multiple extra articular manifestions, kidney disease, lung disease, heart disease, brain lesions, and you’ve spent every day of the last ten years in pain, often severe pain…biologicals aren’t scary.  Mixed connective tissue disease and Rheumatoid Arthritis are scary. Much, much more scary.

It is a harder prospect when your disease is moderate, or well controlled with methotrexate and other DMARDs.  Do you really need biologicals?  Are you prepared to accept the possible side effects?

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While each biological medication acts in a slightly different way, targeting different parts of the inflammatory pathway, different cytokines, they all have similar side effects.  Most common side effects include nausea, stomach upset, sinus symptoms, headache and injection site reactions.  More serious side effects include increasing your risk of infection, which in rare circumstances can become life threatening.  Some biologicals can induce a lupus like syndrome, but that always resolves with ceasing the biological.  And others are linked with developing MS.  Taking biologicals has also been associated with increased risk of some cancers, but the risk is hard to determine as having severe RA also increases your risk of cancer, particularly lymphoma.  Recent studies have shown the risk is smaller than first thought, but it is most certainly there.

So. Cancer.  Infections that might cause death. MS.  When you’re googling, those things can jump right off the page at you.  So IF you google and are prone to worry and anxiety, make sure you google further and look at the incidence of these events occurring, because the risk is tiny.  Or, better yet, ask your rheumatologist.  Always a far better source of information than google anyway!

There is nothing wrong with asking questions, and asking for reassurance.  That is a big part of your rheumatologist’s job, in fact.  Rheumatologists use these medications every day, and are very comfortable prescribing them, and they know all the risks and benefits.  On the other side of the table, if you’re looking at your first biological, it can feel a lot more intimidating.

So talk to the person who knows the most – your rheumatologist. My advice?  Do not go online and ask about biologicals online.  As I said in my previous post, facebook groups are a great place for support but a terrible place for medical advice.  EVERYONE has different degree of disease. And EVERYONE responds to drugs differently. And EVERYONE copes with pain differently. What is a crisis for one person is an every day event for another.  But most importantly the fact that someone in your online group had a terrible reaction to Humira and wound up in hospital has NO bearing on what will happen with you.  Humira  could put you in remission, or it might do nothing at all.  There is just no way to know until you try.

And that in itself is one of the most difficult things about biologicals. There is no way to know which person will respond to which biological.  Some people respond to many. Some people respond to none.  Most people fall somewhere in between. The only way to know is to try.  And while that can be anxiety inducing, there is no way around it.  Current research is focusing on how to predict which patient will respond to which biologic, but that information is a ways off.

Another important thing to remember about online and facebook groups, is that online is where you will find the most severe cases. The people with mild disease and those who go into remission are NOT on facebook looking for support. They don’t need it. They are living life, climbing mountains, running races, roller skating and bungee jumping.  Or just going to work every day and taking care of their families.  It would be great if all of those people living very normal lives on biologicals would check in and post about how wonderful they feel, but that’s NOT how it works.  So the facebook world is NOT a representative sample, and it’s so important to keep that in mind.

I keep seeing people say no one goes into remission.  That’s just not true. Statistics say that 30-50% of people go into sustained remission. And another 20% achieve low disease activity. That’s pretty good!  And I’ve met these people. I’ve met them in the gym. I’ve met them at my car dealership.  I’ve met them in the whitegoods section of a big box store.  I don’t meet them online.

It is a fair statement to say that most people who have RA do very well and live a relatively normal life, with a normal life expectancy.   Those with severe refractory disease, with extra articular manifestations (organ involvement, vision loss, hearing loss etc) have a much poorer prognosis.  Estimates put uncontrolled RA at taking 15 years from your life expectancy.  But uncontrolled RA is the minority.  Thankfully.

Biologicals offer a lot of hope to this population. And while it’s not a decision that should be taken lightly, when you have severe, uncontrolled Rheumatoid arthritis, lung disease, heart disease, brain lesions, vision loss, hearing loss and ALL of this is a result of your disease, it’s a really simple decision.

 

Note:  I am on my fourth biological. I have gotten no more than 30% benefit from the best one, and nothing but psychosis, paranoia and bipolar symptoms from the worst.  I had lupus syndrome from a TNF blocker.  I have ongoing neurological symptoms that started while on the same TNF blocker that haven’t subsided.  From the drug ofr from the disease? I don’t know. I only know I had no choice but to try.  I have persevered and taken each one for an average of 8 months each. I don’t give up easily and I don’t give up for anything less than a life threatening reaction, or after 8 months, which is my rheumatologist’s minimum trial time.

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4 COMMENTS

  1. Yes, the thought of starting a biologic was a scary thought. I talked with my physician and he asked me if I wanted things to remain, status quo? I did not. He also told me, that they have to include the possible risks involved.

    For me the benefits have far outweighed the risks. It’s a personal choice and each one is different.

    Thanks, for sharing your perspective. I really enjoy your writing.

  2. I think our philosophy is about the same. These things can be so scary but really what choices do we have? Not many. I always say the same when people ask me about them. If you are truly weighing the decision, than ask yourself this, are you OK with your disease activity, if you are then no do not take them. But if your not, then what do you really have to lose? not much if you are the end of the rope.

    I am on my 7th in 16 years. I do not regret using a single one.

  3. Agree about the scary but you have to decide if possible serious side effects are scarier than a certain continuation or worsening of symptoms. My GP said something similar to Rick’s comment about are you happy like this or is it worth trying ? I tried and am doing ok (on 2nd now). I’m enjoying your blogs and they articulate many of my thoughts very well-thank you and hope things improve for you.

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