This post is going to upset some people in the arthritis community who insist they are undergoing chemotherapy, and that’s fine.  I wish I had known that methotrexate when used to treat inflammatory arthritis was NOT considered chemotherapy by doctors when I was first diagnosed with rheumatoid arthritis. I refused to take it. I was scared to take it. I wasted valuable time.

methotrexate myth busted: methotrexate for RA is NOT chemoSo now I want to shout it out:  Methotrexate, when used to treat inflammatory arthritis is NOT considered chemotherapy by medical doctors, in the commonly accepted definition of chemotherapy.  (Don’t bother seeking out the medical definition of ‘chemotherapy’, because by that definition all drug treatment is chemotherapy.  Taking ibuprofen is chemotherapy if you want to go there).

We all know what the general consensus of chemotherapy is.  Strong medications, cytotoxic medications, usually given by infusion, usually to treat a potentially terminal cancer.  That’s the chemotherapy I’m talking about.  That’s the socially accepted definition in day to day conversation. That’s what most people are talking about when they talk about ‘chemotherapy’.

Methotrexate, when used for cancer is used in moderate to high doses.  It is given depending on body weight, so the dosage varies.  But it is used in doses up to ten times higher than used in Rheumatoid Arthritis and other inflammatory arthritides.  In the high doses used for cancer, it prevents cells from using folate to make DNA and RNA, thereby slowing the proliferation of cancer cells.

When used for inflammatory arthritis, methotrexate is not considered chemotherapy.  It is considered a DMARD (Disease modifying anti-rheumatic Drug).  In the low doses used in Rheumatoid Arthritis, methotrexate causes cells to release adenosine, which blocks other chemicals that promote inflammation, and it is thought that this is how methotrexate reduces inflammation in Rheumatoid Arthritis.  The fact that folic acid, prescribed concomitantly with methotrexate does not reduce its effectiveness supports the idea that it is not its anti-folate properties that improve inflammatory arthritis disease control.

In simple terms, it has a completely different therapeutic mechanism in lower doses.

Those are the facts.

Here’s a post from a respected rheumatologist explaining how rheumatologists see methotrexate.

Many people refer to taking methotrexate for rheumatoid arthritis as taking ‘chemo’.  And it IS a chemotherapy drug.  But there is a huge difference between taking a low dose of a drug that is used in cancer as chemotherapy, and being on chemotherapy.  It might sound like semantics, but it’s really not.

When I am asked, I tell people it’s a chemotherapy drug, but it is used in much lower doses for rheumatoid arthritis.  I don’t compare it to cancer treatment, because it’s not like cancer treatment.  I have been guilty of telling people it’s a drug used as chemotherapy in much higher doses to make some twit realise that it’s a serious drug, for a serious disease.  But I don’t call it ‘chemo’, say I’m on chemotherapy or imply that it is the same as chemotherapy.

This is not to say that it doesn’t cause severe side effects for some people.  Methotrexate put me in the hospital and nearly killed me. I am well aware of the dangers of this drug.  But for most, it is a safe, effective treatment that ‘is among the safest of all drugs used for the treatment of chronic inflammatory arthritis’.

Many people have few to no side effects.  Some people have a ‘hangover’ day, with nausea and fatigue the day following their dose.  Some people have several hangover days.  For some, the drug’s side effects are worse than the disease, but treatment withdrawals due to adverse events are infrequent at the doses used in RA  (7.5mg to 25mg per week).  It’s certainly not for everyone, but it has been shown to be one of the safest drugs for Rheumatoid Arthritis treatment, and yet it has the most maligned reputation.

Also remember that the people posting on support groups are those that have not had a good experience. The people who are doing well on methotrexate have no need to post.  They are the silent majority.

Lately I have seen a rash of posts from people about their ‘chemo days’.  This seems purposefully for shock value.  I understand the point of view, of trying to make people understand that Rheumatoid Arthritis is a serious disease.  But it’s too big a jump to say you’re on chemotherapy, in the socially accepted definition.  It’s not good for raising awareness, or good advocacy, because it’s medically inaccurate.  Because it’s implying that Rheumatoid Arthritis treatment is akin to cancer treatment.  That Rheumatoid Arthritis is as serious as potentially terminal cancer.

It’s not.

People constantly tell me you can’t compare diseases.  Bullsh*t.  You can.  No matter how severe a case of rheumatoid arthritis, no matter how painful and debilitating, it is NOT as bad as a terminal cancer diagnosis.  It’s just not.

But Rheumatoid Arthritis IS a very serious disease. In severe cases, it causes severe pain, disability, social isolation, depression and for some people, the disease is completely untreatable.  More awareness needs to be raised the disease.  But the way to do it is by providing quality information.  Not misinformation.

You can of course refer to your methotrexate day as your ‘chemo day’ if you like.  And I can paint a black horse with white stripes, but that doesn’t make it a zebra.  And when you DO call it ‘chemo’ think about the negative consequences that may have on your fellow RA fighters.

Calling it ‘chemo’ scares people.  The newly diagnosed see these posts and may refuse a safe, effective therapy, because they are afraid of taking ‘chemo’.  They then wind up on a less effective treatment, sometimes a more dangerous treatment (prednisone, anyone?) or denounce medicine entirely, and wind up taking curcumin and fish oil, which in mild cases might help with symptomatic relief, but will do nothing for disease progression and joint erosion.  We all know that early treatment is critical for the best outcomes (remission, low disease activity) so we should be very careful not to scare people away from the treatment most likely to provide that.

There are also a lot of people who post that they would rather have cancer than have rheumatoid arthritis.  These posts anger a lot of people, but I see them as a cry for help.

Firstly, if you feel that way, you need more support. I mean that in all seriousness and with compassion.  Posting those kinds of feelings is a sign of desperation, and depression, in my opinion.

It tells me you have been fighting too hard, for too long, without help.  You clearly are not getting the understanding and compassion that you need, nor the pain relief.  So you need to find that help and support and pain relief. It is out there, but you have to seek it out.  Because preferring a disease that might kill you, to one that causes pain and suffering just doesn’t make sense.  If your rheumatologist won’t prescribe pain medications, seek out a pain management doctor to get your pain levels under control.  And find a good pain management psychologist to help you find the joy in life again.

Yes, I know this isn’t easy.  But it is the path forward.

Secondly, the logic used is that ‘at least with cancer, you either get cured or you die’.  This is also so untrue.  The spectre over every cancer survivor is recurrence.  They live in fear of the disease coming back, and coming back worse.  The odds of survival with recurrence are much lower.  I would not wish that upon anyone.

Thirdly, think about the person with cancer feels when you tell them you’d rather be looking death in the face, than dealing with a lifetime of pain.  Tell the woman with stage 4 ovarian cancer, the mother of 3 young children who has been given a 5% chance of still being here in five years, tell her that you’d like to switch places. I promise you, she would trade in a heartbeat.

And then think about all of those people who compare their osteoarthritis in their one knee to your serious, systemic disease that attacks every joint and potentially your internal organs.  It pisses you off, doesn’t it?  It’s not a fair comparison, and it belittles your pain and denies the severity of your illness, and marginalises your experience.  That seems akin to people with Rheumatoid Arthritis saying they are taking chemotherapy, just like cancer patients.  And implying they suffer in the same way.

Methotrexate helps 70% of those who take it, as in gives them some level of improvement.  Almost everyone who has moderate to severe rheumatoid arthritis will be prescribed methotrexate at some point.

It is the gold standard treatment, and there are good reasons for that.  It is also an ‘anchor’ drug, in that it can be prescribed with other DMARDs and bDMARDs (Biological Disease Modifying Drugs) to increase their efficacy.  With careful monitoring, it is a safe, effective medication that many people take for decades with no problems.  It gives people their lives back.  It prevents joint damage.  It reduces pain and disability.

I remember when I was first diagnosed, I was too afraid to take it.  I refused.  If I could change anything, I would change that decision.  Nine years later, it is a miracle for me. I am taking the injections and I have had a 30-40% reduction in pain and disease activity.  And I have reduced my prednisone intake by 4mg daily.  (Prednisone is a far more dangerous drug than methotrexate in the doses taken for RA.)

My rheumatoid arthritis is still active enough to be considered severe, however.  I have had weeks and months on end where I experience nothing but pain, and my only positive thought is that when my children are grown up, I will have a choice as to whether I wish to continue this life, or opt out at a time of my choosing.  I understand the pain and the despair.

I have permanent damage that will never heal.  It can’t be fixed, or treated.  It will never stop hurting.  I will have that pain forever and it’s severe enough to require daily narcotic pain relievers

Had I taken methotrexate earlier, I might have avoided that.

Fourth, it doesn’t help raise awareness, or educate anyone.  Because it’s not accurate.  It doesn’t inspire empathy and compassion, because when people realise the truth, they feel lied to.  You don’t get support, you get the eye roll.  We get enough of that already.  We get accused of being malingerers and attention seekers enough already.

And fifth, you don’t need to hype up Rheumatoid Arthritis. It’s quite bad enough as it is. You don’t need to imply that it is as bad as a terminal diagnosis.  Living with severe chronic pain forever, as some people do, is torturous.  It IS a very bad disease. It causes pain and suffering on a scale that most people will never understand.  No matter how hard we try to educate and explain.  It is very rare to die from rheumatoid arthritis, but it is definitely life limiting, and life altering and incredibly painful.  It’s a tough disease to fight, often made much more so because there is so little support.  It is a life sentence of pain, and disablement, and missing out.  Of losing friends and lovers and all of your future plans.

When I got sick, everyone abandoned me. Everyone.  My husband.  All my friends.  Well, almost.   There is only one person in my life whom I knew when I was ‘well’.  One friend who is still my friend.

One.

I am single and raising two kids on my own. One of whom has special needs.

It’s hard.

But I’m not on ‘chemo’.  And I’m not at risk of dying. And I never imply that I am, even when I really need some support.  And when people tell me ‘At least it’s not cancer’ I whole heartedly agree.

 

 

*This blog post was reviewed for medical accuracy by Dr. Jonathan Krant, MD, CreakyJoints Medical Director