The truth about living with Rheumatoid Arthritis

#humira

Rheumatoid arthritis and failing humira

humiraNormally I would be injecting Humira tonight.  But no more.  I have done my 12 weeks, and have felt no benefit for at least the last six of those.  And the side effects, particularly the depression and anxiety, are not worth it.

In truth, I can’t believe I managed to stick it out this long.  I see rheumy next week, and I don’t believe she will be pleased,  because we are almost out of options.  But I do believe she will understand.  She is a caring doctor.

To everyone experiencing depression, my thoughts are with you.

It’s hard to get up (or not) every day and fight RA, lupus, MCTD, PsA, Ank Spond, IBD…the myriad of autoimmune diseases we deal with.

Depression and/or anxiety make fighting impossible.  Depression will take away your motivation. It will take about your will.  It will tell you that you need to stay here, in this spot and not move.  Make a nest and stay in it.  Protect yourself.  Don’t risk more pain.

And some days that’s all very true, and exactly what you need to do. But depression tells you to do that every day.  And pretty soon you have no life left.

Anxiety will tell you to do the same things, but for different reasons.  Anxiety tells you that the sky will fall if you leave your safe place.  Something terrible will happen. What?  You don’t know. But it WILL happen. So you have to keep yourself safe.  And keep everyone safe that you care about.  You can’t go anywhere or do anything.

And again, you have no life.  No fight.

I experienced depression in my early 20s. There were reasons.  I worked through them, with help. And I recovered.  I learned a lot of techniques to deal with depression. And they have served me well through stressful periods in my life since then.  No one is ‘depression proof’ but there are mind sets and habits that are protective.

I do not pretend to understand how or why, but some medications bring out the depressive tendencies of my nature.  I believe it is part of me, because I don’t believe that medications can ‘create’ feelings.  But they can amplify them.  The things that I feel when I am depressed or anxious on a medication are things that I feel when I am not on these medications. It’s just that I manage these feelings. I don’t let them take control. I can keep them in perspective.

On some medications, there is no perspective.  There is no control.  There is only a slow slide into emotional turmoil that is difficult to understand, and to arrest.  Adding depression to chronic pain and disability is not a good thing.

I am lucky, because I can get rid of the depression by stopping the medication.  Methotrexate is the worst, but Humira is a close second.   The two drugs have nothing in common.  Completely different classes of medications.  Methotrexate is a DMARD, low dose chemotherapy.  Humira is a TNF blocker, a biological DMARD.  And Enbrel, a TNF blocker like Humira, did not cause depression nor any other emotional side effects.

So it’s impossible to predict.  I just have to take that chance when I start a new medication.  And when  a medication is a monthly dose, if the side effects are bad, you know they are going to last for at least a month.

Methotrexate takes a week for the worst to be over.  In two weeks I feel like myself again.

Humira takes a week to feel improvement. After two weeks I can feel myself returning.  Another week I hope, and I will feel normal again.

The next drug on the agenda is Actemra.  It is a monthly infusion.

I am not prepared to risk it right now.  I will see rheumy next Tuesday – the 11th of February.   I am going to tell her that I can no longer tolerate Humira.  And that I need a break from medication. I need a wash out period.  I need to feel like myself again for a while.  I need to regroup. I need to regather myself and get stronger.

Because I am fighting a tough battle, and I need every ounce of my emotional strength to get through the levels of pain I am experiencing every day now.  I need my mind, my emotions, within my control again.

I hope she understands.  I believe she will.  Inflammatory arthritis is breaking down my body.  I cannot allow the treatments to break down my mind.  As the saying goes, where your mind goes, the body follows.

 

Rheumatoid arthritis doesn’t go away for special occasions

fruitnveg_croppedYesterday was my son’s birthday.  I spent a large part of the day ‘resting’.  Watching.  Following behind.

Not really taking part.

Rheumatoid Arthritis doesn’t just go away when I want it to. No matter how much I begged the powers that be the previous night to please, please let me have a good day for my son’s birthday, they didn’t answer.  The RA gods decided that my ongoing mega flare would not let up for the day.

I also am suffering the worst of the side effects of Humira.  For four to five days post injection, starting 24 hours after injecting, I get the most intense anxiety and depression.  It feels like grief.  Crushing pain in my chest.  I can’t breathe.  I have the most awful thoughts, the worst of which being that everyone would be so much better off without me.

I know they are just thoughts.  Thoughts pass through your head, and the trick is to let them keep going. Do NOT hold on to them. Do NOT give them a home to dwell in. LET THEM GO.

I have my own set of ‘rules’ for managing depression.

So I know what it is, and I certainly do not act on any of these thoughts. But they are persistent and unpleasant.  I also experience a physical need to cry.  I just burst into tears for no reason.  Or I’ll just be watching TV and tears will start rolling down my face.  Not even I know why.

And then there’s the anxiety.  I get crippling attacks, where I am convinced something awful will happen. I will crash my car.  Someone is coming to get me…bogey man???  Please!

None of this is very ‘like me’.  All of it is completely out of character.  Normally I am a happy, positive person.  I have worked hard to be this way.  Somehow Humira undoes all of this.  It peels away all of the defences I have worked hard to build and lets all the attacks of the world get through.  It allows all of my regrets and failures to stand centre stage and monopolise the dialogue in my head.  It makes me cry.

Now please, with the greatest of respect:  Do not tell me that anxiety and depression are symptoms of Rheumatoid Arthritis, and NOT the Humira.

I have taken 6 shots now.  And each time it has been exactly the same.  The first time the mood changes lasted the full two weeks.  I almost didn’t take the second shot. The second shot lasted a week. And since then the side effects have lasted four to five days.

It is the humira. It is repeatable and predictable.  And each time, after it passes, and I am due for my next shot, I tell myself that I can cope and that I need to take my next shot to keep rheumy on side.

But no more. I am done.  This crushing feeling in my chest that the world is going to end is too much to bear when there are no longer any positive effects of the drug.

And I get other side effects too.  My mood in general is lower. I have a horrible bloated stomach.  It’s not always painful, but it’s uncomfortable, and nothing fits me around the waist.  I have no appetite, and yet I have gained more weight.

When I look at all the drugs, none of them have helped (except prednisone), and all of them have made me worse.

So I need a break from the drugs.  All except prednisone and maybe Naprosyn. And ofcourse endone.  Although I need to take less endone. I am almost out again, and my doctor will not be happy.

But I need a detox.  So I’m looking at diet again. I’ve never had any help from dietary changes before. But I keep reading about how other people have great success.  I guess I’ll try again.  The Autoimmune paleo approach seems perfectly  healthy to me. But very restrictive.

Being that I am pretty  much bed ridden ever day now, I have to try something.  My only other option is to up my prednisone. Again.

And I can’t do that.  My eyesight is at risk.

So.  Understand that I am NOT saying ‘go off your meds’. But my body needs a break.  Rheumy will want me to do the full six months on humira.  I will not.  I have done 12 weeks, or 3 months, and that is the minimum requirement for a ‘fail’.  She does not know what this feels like, and doesn’t have to live it.

That may mean the end of the treatment line with her. If so, then so be it.  I only have one drug left available to me anyway.  Actemra.  Infusion. I’m not ready to go there, anyway.  My body needs a break!

So back to reading about diet.  Even if it helps a little, it will be worth it.

Humira (adalimumab) – Medications for Rheumatoid Arthritis

humiraHumira is a biological DMARD (Disease Modifying Anti-Rheumatic Drug). Humira is an Anti-TNF (Tumour necrosis factor) and it is self injected once every fortnight.  Humira is prescribed for moderate to severe Rheumatoid Arthritis, in cases where cheaper medications (such as methotrexate, arava or sulfasalazine) have failed to provide benefit.

How does it work?

Tumour necrosis factor is a protein that promotes inflammation and is found in the synovial fluid and blood of patients suffering inflammatory arthritis.  Humira is a human antibody that blocks this protein, thereby reducing the inflammation and the signs and symptoms associated with it (swelling, pain, tenderness)

Humira Dose

Humira is available in pre-filled syringes and a pen auto injector.  The usual dose is 40mg self-injected fortnightly.

Humira Side effects

The most common side effects are injection site reactions – redness, swelling, itching and bruising.  This is usually mild, but if it lasts for more than 5 days or is severe, a doctor should be consulted.

Also common are nausea, headache, rash and abdominal pain and bloating.

Humira suppresses the immune system, so infections are common, as are minor infections becoming more serious.  Humira has also been associated with serious infections such as tuberculosis, sepsis and fungal infections. Though rare, these infections can be fatal.  Humira may also cause or worsen diseases of the nervous system, such as Multiple Sclerosis.  Humira also raises the risk of some cancers.

A full list of side effects is available here.

Monitoring

No special monitoring is necessary. Humira should be discontinued if an infection develops (e.g. fever) until all signs of infection are gone.

Contraindications

Patients much be tested for tuberculosis before starting Humira.  Humira is an immune system supressant, and patients suffering serious infections should not receive Humira.  Invasive fungal infections (such as histoplasmosis) and other opportunistic infections may be worsened by Humira and in some instances have been fatal.

Patients with pre-existing disease of hte nervous system, such as Multiple Sclerosis should not take Humira.

Advice in pregnancy/breastfeeding

Humira has not been studies in pregnancy or breast feeding women, and therefore is avoided.

Rheumatoid Arthritis and Humira

humiraI haven’t really written about humira.  Just that I was about to start taking it.  Depression and other aspects of my life took over, and I didn’t blog for a while.  But I think I should fill in the gaps some.

Humira.

I started taking it on the 13th November 2013.  I have now taken 5 shots.   Humira is a tnf blocker, similar to Enbrel, but it is a fortnightly injection, rather than weekly, like Enbrel.

As always, I didn’t read up on the side effects – I don’t want to curse myself.  I feel reading about the worst case scenarios can become a self-fulfilling prophecy.  I know the general risks with TNF blockers from my experience with Enbrel.

I took the first shot in the afternoon.

Within two hours I had a stomach ache, bloating, and nausea.  Not severe, but unpleasant.  Kinda like PMS, when the bloating and cramping is really bad.  My stomach looked almost pregnant, couldn’t do up my pants.  Ok, interesting…

The next morning I felt different.  Looser. There was still pain.  But I could move easier.  It’s really hard to explain.  I’d never really separated ‘stiffness’ from ‘pain’ before…but I guess I wasn’t as stiff.  I was still in a lot of pain, however.

By the afternoon  the pain was receding.  Now this IS odd.  Usually the pain is ramping up in the afternoon.  Instead, I was feeling relief.  Ok, that happens sometimes. Some days things just get better for no reason.  Don’t get too excited yet.

By Friday morning I felt amazing.  Mild pain when I got out of bed.  No hobbling out of bed.  Just some soreness and aches.  Nothing sharp. Nothing sharp *anywhere*.

And I had energy!  I have never really considered my fatigue anywhere near as big a problem as my pain.  But that morning I realised how bad the fatigue had become. Because now it was cut in half! I didn’t feel like I had lead weights on my shoulders anymore.  I didn’t feel like a tyre was tied around my waist and I had to drag it around all day.  I didn’t feel that deep down exhaustion, and ache in my muscles.

I felt OK.

Wow.  Starting to get a little excited here.

And then the anxiety kicked in.  As my energy levels increased, it turned to anxiety. And then to mania.  Over the next two weeks I went on a roller coaster ride of emotional turmoil that was unbelieveable.  I would swing from ridiculously happy (mania) to deep depression over the course of a few hours.  Fast cycling bi-polar.  Then I would swing up to hyper anxiety.  I was unable to leave the house. I had feelings of impending doom. I didn’t want to let my children out of my sight because I was convinced something awful would happen to them.   It was awful.

And the pain and fatigue returned after 4 days.

Wow.  What a ride.

I called rheumy.  She said that sounded very unusual  (doesn’t it always???).  Considering methotrexate provoked a psychotic reaction that caused me to be hospitalised, she didn’t argue. She agreed that Humira can cause psychiatric effects and ‘mood changes’.  Mood changes was putting it mildly.

I agreed to continue.  After all, after one shot, it could have been a co-incidence.  I’m loathe to blame a drug for a reaction until I am really, really sure.

Next shot, 4 days of feeling good pain and fatigue-wise (and when I say ‘good’ I mean about 50% less pain and 50% less fatigue).  Which is pretty awesome.   Not even close to a ‘normal’ person tho. We are NOT talking pain free, remission status. Even for a day or two.

And the anxiety returned.  I called it the bi-polar express.  That Friday (after my Wednesday shot) I sat in my living room alone. My kids had gone to school.  I was convinced that someone was coming to ‘get’ me. Do me harm.  Something. I was terrified. Genuinely terrified.  I knew it wasn’t real, and so I could logic through it, to an extent. But the feeling was very real.  And it was not a nice feeling.

I kept checking the house, the doors, windows, making sure they were locked.  I had to check all the cupboards to make sure no one was hiding in there. I checked the man hole periodically because someone could be in the ceiling and climb down into the house that way.

It was crazy.

But I knew it wasn’t real.

Persevere.  I wanted to stop Humira. I hated it.  But this time it only lasted a week. The anxiety abated.   It was getting better.  And the relief I felt (pain and fatigue wise) was amazing.  I hoped that the improvement in pain and fatigue would continue, and would last longer.  And the anxiety and depression would improve and get shorter.

That was the trend.  It was sound logic.

But the last shot I took, a week and a half ago, gave me NO benefits whatsoever.  It DID give me four days of bipolar madness.  Not only did my pain and fatigue not improve, I went into one of the worst full body mega flares I’ve EVER had.

It really knocked me down.   Physically my world stopped.  Luckily I had some friends to help.  Emotionally it hit me hard.

With every drug, there is a moment when you realise it doesn’t work. Its not going to work. Another treatment option failed.  Gone.

I had that moment with Humira last week. The chances of it helping now are very slim.  I will ofcourse continue.  My three month appointment with Rheumy is in four weeks.  So I will have two more shots between now and then.  Two more chances for Humira to do something wonderful.

Humira is particularly hard to let go, because those first four days is the best I have felt in many years.  By far the best reaction I’ve had to any drug or treatment.  It gave me hope on a level that I haven’t felt before.

So when I crashed, I crashed hard. There were many tears. It was ugly.

But it was beautiful, because a friend came over and held my hand and listened to my cry and stayed with me.  Also a new experience for me.  She helped me through.  And now I am accepting that humira probably won’t work and it is time to move on.

Unfortunately, rheumy will want me to do the full six months.  I don’t see the point.  I really can’t see that once a drug has given you some improvement, and then that improvement stops or ceases to happen, that its going to suddenly start working again.

I have read about humira not helping for up to six months, and maybe that’s worth waiting for.  But I don’t think it’s a ‘start/stop’ thing. I think once the ride is over, its over.

So I will have to ‘fight’ with rheumy.  Fight to move onto the next treatment option.  My last treatment option.

Possibly the scariest idea of all.

Four more weeks to think it through.  Still hoping for a miracle.  Can’t hurt to hope…

Rheumatoid Arthritis update

I have been MIA again…it’s been a very interesting 10 days or so since I returned from my holiday.

Firstly, thank you all for your support and advice and inspiration!  There were moments where I felt like I couldn’t handle it, I was crazy to have gone so far from home with two kids and just me to deal with everything, and was afraid I wouldn’t manage the trip home.  Some kind words at moments like those are sometimes all you need to realise other people are doing harder things right now, and you just need to take a breath, pick yourself up and keep going.

And the holiday was a success…and I would say to everyone who is thinking about doing something big, something scary, something fun, something they need to do to rejuvenate their soul…DO it!  Be confident.  You CAN do it. You WILL find a way.  And you will do yourself proud.  Some of the people I have met through having Rheumatoid Arthritis are the strongest people I know, and inspire me every day to keep fighting.

So thank you…for lifting me up when I thought it had gotten too hard.  My kids had a great holiday, and we all have memories that will last forever.

When I returned from the holiday, I fell in a big heap for almost three days.  Utter exhaustion first…and then the mega flare for two days.  It was to be expected.  I think I was holding it all together by sheer force of will…the moment I was back at home, safe and sound, my body fell apart.

I didn’t mind that.  I expected it.  I understood it.

The strange part is what happened next!

Three days of mild symptoms.  Only mild pain.  Nagging, annoying maybe…but NOTHING compared to normal life!  And I had energy!  I could NOT believe how much I could get done in a day!  The brain fog lifted.  The headache went away.  I felt good.  Good!!!

I could exercise…hard!  I ran on the treadmill.  My fitness gave out long before my joints did!  I did group exercise classes that are normally too high impact for me. I traded Yoga for Step. I lifted heavier weights.  And I loved it!  I had muscle soreness that was far worse than the joint pain.  Sheer luxury!

And yes, I started to hope that it would last.  That just shy of the six month mark of Enbrel, maybe things were finally turning around.

And then on the evening of the third day a familiar ‘itch’ started in my joints. It quickly developed into the deep ache I am so used to.  Then the stabbing screw driver pains began. And then someone started twisting the screw drivers and wiggling them around in there.

Back to normal life.

The pain came back suddenly and ferociously.  I took as much endone as I safely could, and it didn’t even touch it.  I lay awake all night, quite literally.  No chance of sleep with pain that severe.  I just tried to breathe and meditate, and get through the night.  The next hour.  The next minute.

By lunchtime the next day, the pain hadn’t lessened at all.  But there was also the realisation that within just a few days of mild pain, I had forgotten how bad ‘normal’ is for me.  When each day gets a little bit worse than the last, when slowly you are dealing with more and more pain, you don’t notice it so much.  You deal with it, because you have to.  It’s just a little worse than yesterday.  Yes, you take more pain killers.  You’re aware of that.  But you’re still managing. You’re still living.  You’re still getting things done, even if it’s the bare minimum.

And you don’t really notice that your life has become a constant battle against severe, unrelenting pain.

And you don’t really notice how little you actually *do* on an average day.

But when the pain returns all of a sudden, literally overnight, you notice!  You notice in a big way.

You notice and you don’t cope.

So.  Phone call to rheumy.  Emergency appointment.

I saw her the following day.  I was in her office for about two minutes before she told me she was filling out the paperwork to start me on Humira.  Enbrel has definitely failed.

I had an MRI done a few weeks ago.  She looked at those results and tut-tutted.   Herniated disks, nerve impingement, facet joint arthritis and spondylitis.

She was unimpressed with the level of endone and ms contin I have been taking.  She told me it would be better to up my prednisone again, until Humira kicks in.  But I reminded her I can’t do that, because I have cataracts from the prednisone.  I cannot risk losing my eyesight, or even becoming seriously vision impaired.

I told her I am taking 1500mg of Naprosyn daily.  That is 1.5 times the maximum daily dose.  However, I have done this before, and I am a large person – around 80kgs (176 pounds).  She said I have to lower the dose to 1000mg per day, because my kidney function won’t handle it.  Also, the risk of ulcers is always there.

So she came back to oxycodone.  Slow release every 12 hours and immediate release for break-through pain.  So, every four hours.

She has nothing else for me.  I’m not sure how long Humira will take to be approved.  In the meantime, the pain is impossible…even though I appear to be going about my life as normal.

This is normal.

So I wait.  For Humira.  And hopefully, a new normal in a few months.