The truth about living with Rheumatoid Arthritis

#mtx

Methotrexate…yes it really does that

Last night I took my methotrexate.  0.8mg injected, the equivalent of 20mg tablets.  Injections are better absorbed, however, and do give me less in the way of side effects. Less nausea, less fatigue, less depression.

Depression is the one I care about. Nausea and fatigue I pretty much accepted as a daily part of life years ago.

Depression I can do without.

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Methotrexate causes depression

Ok, I have to face it.  Methotrexate causes depression.  Serious depression.  After three or four weeks of 0.8ml injections (equivalent to 20mg oral) I start to spiral down.  I don’t want to accept it.  I want to tell myself that its mind over matter. And I can overcome these feelings. They are just feelings. Feelings mean nothing without action.

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Rheumatoid Arthritis and methotrexate – week 5!

I am about to take my fifth dose of methotrexate. And I have to admit, methotrexate is doing what it always does. I am depressed.

There is no part of me that wants to take the little yellow pills.

But if I don’t take them, I have nothing but pain waiting for me. Or, more accurately, worse pain. With very little hope of the pain ever receding.

Followers of this blog know that this is my fourth attempt at tolerating methotrexate. Each time I have experienced nausea, fatigue, hair loss, diarrhea, headache, stomach ache…but all of this is doable. It is the depression that stops me. I dread the depression.

Depression bleeds all the colour from the world. It removes all the pleasure from my life. It takes away my ability to feel much of anything. Except to feel sorry for myself, and anyone who knows me, knows I don’t waste a whole lot of time feeling sorry for myself. Sure, every now and again…but it’s not the way I usually operate.

Except when I take methotrexate.

I have tried several anti-depressants. They either do nothing or make things worse. I will not try any different drugs. I have tried that therapy option and it doesn’t work. Persisting with a slightly different chemical will not change things. Anti-depressants, like most medications, do not work for everyone.

So I will rely on other methods for dealing with depression.

I hand out this advice all the time. It’s truly incredible how many people suffer from depression, and how many people tell me about it.

I believe that depression usually occurs because of several factors, so managing it involves several factors also. You don’t just wake up one morning depressed. It takes time to get there, and it takes time to get back.

At its core, there is a basic problem, or set of problems. Because of the depression, a sufferer can’t even begin to address this problem. So you need to improve the depression to see what elements of your life need changing.

In my case, the main cause is illness. My disease has impacted on every aspect of my life – my marriage, my career, my kids, my friendships, my financial future. But at its core, the main problem is Rheumatoid Arthritis. Specifically, the severe, daily pain and disability of Rheumatoid Arthritis.

I don’t believe methotrexate causes my depression, I believe it just enhances it. Unmasks it. Affects my mood enough to expose the underlying depression. I have often described is as like having permanent PMS.   Some days are worse than others. I have been depressed before, and I won that battle. I will win this one too…piece by piece.

Dealing with depression is a process.

I have basic rules that I follow.

And to have some hope in my life, I am going to have to ride out the depression, follow my own advice, and deal with these feelings, step by step. Because I do believe I am feeling some benefits from methotrexate as well.

So I need to keep my eyes on the prize…less arthritis pain and a more normal life. That’s worth fighting for.

Methotrexate for Rheumatoid Arthritis and the side effects

Today is post methotrexate day.  The day after I take my methotrexate dose, to treat my rheumatoid arthritis.

I take it just before bed, as advised by many who know the effects only too well, so that I can sleep through the initial side effects.

Unfortunately the side effects are severe, and they persist well beyond the 8 hours after popping the little yellow pills.  They include nausea, headache, dizziness and a delightful ‘I’ve just been kicked in the guts by a black belt’ feeling.

And they have mood altering effects. I have been tapering up on methotrexate very slowly.  I have tried to tolerate this drug four times before.  Each time the side effects have dropped me.  The worst side effect?  Depression. Not mild depression.  Major depression.  At times, suicidal depression.  A complete hijack of my mind and feelings.  Total deadening of every positive emotion,  leaving nothing but a void of despair and misery.  A complete inability to see anything light, to see anything changing, so see a way out of this life of constant pain and disability. This is not me.  This is methotrexate.  This is what it can do.  This is what it does do to me.

So why am I taking it again?  I am in Australia, and here access to newer, TNF blockers and biological treatments is very tightly regulated.  If you’ve read other posts you’ll know I have seronegative rheumatoid arthritis, and my acute phase reactants and inflammation markers are seldom raised.  So I don’t quality for these drugs.

I have tried all the other options open to me, except Arava.  My rheumy thinks Arava (leflunomide) would be A Very Bad Idea, based on his experience.  I tend to agree.  I have tried Salazopyrin (sulfasalazine) twice and failed.  I have tried Imuran – the mood symptoms were worse than methotrexate.  So those are all the drugs available to me for moderate to severe RA.

I take plaquenil, but it’s only for mild RA, so no surprises that it doesn’t control my symptoms.

Methotrexate is the gold standard treatment for rheumatoid arthritis.  It is cheap.  Many people respond very well to it, and have few side effects.  And from all I’ve been told, the side effects lessen with time. I have been back on methotrexate for 9 weeks.  It’s a pill you take once per week.  My rheumy wants to get me to 15mg per week.  He will be happy if I can get to 10mg per week.  The lowest possible therapeutic dose is 7.5 mg per week.  Again, this is usually for people with mild disease.  Or children and teenagers with JIA. I can tolerate 5mg with few problems.  At 7.5 mgs I start to feel the depression kick in.  At 10mg I start to feel like life is not worth living.

So to combat this, I have been tapering up the dose very, very slowly.  I started on 2.5 mg for two weeks.  Then 5mg for five weeks.  I have just taken my second dose of 7.5mg. Side effects?  They are what you would expect.  For the last few weeks I have been plagued with negative emotions.  Thoughts come into my head and get lodged there.  Not nice thoughts.  Stupid thoughts.  Nasty thoughts.  Sad thoughts.  I try to push these away, and remind myself they are just thoughts, but the methotrexate is amplifying them. Everyone has these kinds of thoughts hundreds of times a day, but somehow the methotrexate makes me hold onto them.  So I have to make a concerted effort to let them go.  Don’t give them a place to dwell.  Do not allow them to grow.

This is not easy.  I am already fighting my body every day.  Now I am fighting my mind as well. I am also still taking prednisone – tapering down.  I am at 12.5mg per day now.  As I taper down, the pain is increasing, the fatigue is returning.  I have always fought depression with hard exercise…as the prednisone decreases, my ability to exercise hard also decreases.  The constant catch-22 of rheumatoid arthritis, and its treatments.

But I need to persevere.  Thank the gods no one can read the thoughts stomping around in my head!  I will continue to paste a smile on my face, and force myself to go to the gym, get some design work done, work on my blog, care for my children.  All the day to day mechanics, that will keep the cogs of my life turning. I must never let them stop. I must not fall in a hole.  Because it is so much harder to climb back up once you have fallen down.

I have been there before, and learned this the hard way.  Even if I am only going through the motions right now, my life appears to be travelling as normal to everyone else.  A few friends might notice I am not as social as usual.  That’s fine. Because if I persevere with methotrexate, at least I have hope.  It may help my symptoms, reduce my pain, in time.  I am cheered by others’ assertions that the side effects will fade.  I just need to stick it out.  And it if doesn’t help, failing methotrexate for once and for all will at least open more treatment options to me.  I can then try the next drug. And maybe the next one.  Until the day I find my magic bullet, my combination of drugs that will return my life to my control, and no longer the control of Rheumatoid Arthritis.