The truth about living with Rheumatoid Arthritis

#arthritic chick

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…

Depression can sneak up and knock you down so you can’t even come up with a snappy blog post title

agonyThis morning I felt great.  Things were looking up.  I was happy.  And then suddenly everything changed….Why? I don’t know.  But suddenly my world shifted and the wind was knocked out of me.  That’s the thing about depression. You can’t predict it. Sometimes you sail through stressful situations that you’ve been dreading. And other times an ordinary day sends you to the pit without warning.

Grief.  It is grief.  That crushing feeling deep in your chest.  You can’t breathe…you don’t even want to.  You can’t cry, because in order to cry you need to breathe,  and you can’t. You can’t move. You can’t think. You can only feel.  A pain so deep and rending that it’s almost exquisite in its agony.  Perfect in its torment.

You now understand why artists struggle to capture this pain.  Words are ineffective…words are blunt instruments, and you can’t put them together in a way to make anyone understand how this feels.

Sometimes it’s a song. Sometimes it’s a poem. Sometimes it’s a sculpture, a painting.  Something reminiscent of… a teardrop, a heart, an embrace.

If it’s grief for a child, there is no hope. Your soul will mourn forever, and these attacks will always come.  For nothing can return that piece of your soul to you.  There is only hope that the gods will reunite you one day.

If it’s grief for a romantic partner, there is hope that one day you might love another person more than the one you have lost.  But you don’t want to. You can’t imagine how. You can’t imagine to even begin a search…because you are faithful to your love, regardless of the fact the he doesn’t love you.  Because you love him as deeply and utterly and completely as he rejected you.

If it’s grief for a life you used to have, a body you used to control, an existence where pain was not the overwhelming, controlling feature of every day and night, there is hope of sorts.  Hope for remission.  Hope for a cure, even.  But the longer the life of pain continues, the more that hope fades. Pain changes you. Pain has changed you. And there is no going back.

If I were pain free now, and forever, I would still never be the same carefree person I was eight years ago.  Because I know what it is like to lose everything.  Your love.  Your friends.  Your people.  To be abandoned.  To be left behind.  To have all that you gave, reduced to rubble.  Because you got sick.  And they didn’t believe you.  They didn’t support you. They only wanted the ‘other’ you. The healthy one.  The one that fetched and carried and kept them smiling with silly jokes and surprise dinners and those special moments where you thought you were carving your love into stone.

Instead it was all built on sand…that shifted and lost strength as surely your body did.

You are different now.  There is no going back. The hope now, is that you can find a life where you can be happy along with your limitations….and forgive the unforgivable.

And while it has been many years, and logic has overcome most of the hurt, sometimes that familiar pain intrudes uninvited.  And crushes me.  And I can’t breathe.

I try to live my life as if what I want most in this world was never a part of it.  I banish it from my thoughts whenever my mind dares wander there.  Even while I do all of this, sometimes, out of the blue, my heart breaks all over again.

Today was one of those days.  Why today?  I don’t know.

Sometimes I know why. Sometimes I run into people I used to know and talk about things we used to do.  And then I am desolate for days while I pull my senses back into equilibrium, and wait for logic to reassert itself.

Sometimes I don’t know why. Perhaps a dream that disappeared on waking, leaving just a shadow in my heart and on my mind.

Whatever the reason, the searing, hot pain has followed me all day.  I have forced myself to try and DO something. Anything. NOT stay in bed and wallow. NOT stay in bed and dream. NOT stay in bed and remember.

I went to the hardware store to try and take care of a few ‘fix it’ jobs that need doing. I bought some screws and something metal.  I think I may in fact be a man, because I felt slightly better after doing all this…lol.

Walking through the endless warehouse of all things home improvement, my body started to ache in that familiar way, and I knew the fence would not be fixed today.  But at least I had gathered the necessary equipment.  By the time I had paid I was wishing I hadn’t come at all, because the 15 minute drive home (to my couch) seemed insurmountable.  Turn up the car stereo and play ‘Roar’ by Katy Perry.

My children are both going out tonight – dinner with their Gran, for her birthday. I very much wanted to go.  Because even though I am now the ex-wife, my (ex) inlaws still treat me as one of the family and make me welcome at family functions.  It would have cheered me up to be with them tonight, but arthritis pain means that I am home on the couch.  Alone.  With my thoughts.

At least I can cry now.  I can breathe…the ache is duller, the torture just a twinge.  But tears need to fall, this wound needs to be cleansed yet again.  How many more times?  I don’t know.  Perhaps writing these words will make it one time less.

The narcotics that work so well at taking the edge off the physical pain also numb emotional pain. So tonight I will be very careful not exceed 40mg of oxycodone.  Numbing physical pain with oxycodone is appropriate.  Numbing emotional pain with narcotics is the first step to addiction, and a world of new problems.

I do not need more problems…certainly not ones of my own making.

And so I will put on the song that broke my heart this morning, and the tears will flow.  And perhaps I will try to draw, to sketch.  And I will read this back, and decide whether I have the courage to post it.

I decided late last year that I hadn’t been honest enough in my blog.  I am so focussed on being positive, I didn’t write about depression.  Only telling half the story is only sharing half my life, half my experiences, and while I believe we are all entitled to privacy, if I am going to put out there that I am living successfully with autoimmune diseases and trying to be positive, it is a lie to say that I never get down, that it never beats me, that I am always able to smile.

I hate liars.

So, unsure of what people want to read, I lost my way.  Now I have resolved to tell more about the hard days but still, I  find it absurdly difficult.  To find the words.  Perhaps my positive attitude is a manifestation of my denial.  My refusal to admit that I am ill. That I am suffering.  That I will never again be that fit, healthy person who could run and run and run, and work full time and raise two beautiful kids…and…keep my husband happy.

I still have two beautiful kids.

Please don’t worry about me.  I will be OK.  I have people to call if the sadness becomes overwhelming. I have a wonderful psychologist and general practitioner and I have 24 hour support lines to call.  I will be OK.  I wanted to write this down…but I don’t want to make other people sad.  But maybe if you’ve felt this too, you’ll know you’re not alone.  maybe you could try writing it down too.  I think it has helped. 

Rheumatoid Arthritis and the neighbour and raising awareness one person at a time

garbage-binsA few months ago, when I had been living in my new house for about six months, my neighbour started filling my empty bins with building rubble.  He’s a painter and plasterer…pretty obvious who was doing it.  Then there was the fact that my daughter saw him do it, and he asked her to keep quiet about it. Bit of a give away…

It was his way of protesting that sometimes I left my bin down at the street for days at a time.  The rubbish bins are emptied on a Monday morning.  Sometimes my bin was still there on Tuesday evening.  Wednesday morning it would have rubble in it.

This would happen because I was having a flare of such severity that pulling the bin up the fairly steep driveway was too much for me to manage.  In fact, I have flares of such severity that the garbage bin sitting on the street doesn’t even make my radar of things to be concerned about.

It sure bothered him though.

The day my daughter saw him putting broken tile in the bin (again) she called me to come home right away, to catch him at it. I was having a good day.  I arrived just as he had finished removing the tiles and throwing them into his trailer. Which also sits on the nature strip regularly. This doesn’t bother me in the slightest.

I asked him about the tiles. He said he had removed them. I said I didn’t mind him putting rubbish in my bin BEFORE the garbage truck arrived, if there was room.  And before he could say anything else I apologised for leaving my bin on the street sometimes, and explained that I have Rheumatoid Arthritis, and some days I can’t walk very well.

He didn’t respond.  It’s hard to argue with someone who is apologising.  I’m not good at confrontation.

That was the last time I had rubble in my bin.  I actually forgot all about it. Normal life goes on.  The kids next door often throw their balls into my yard. I have a big dog, so I try to get the balls back into their yard before the dog destroys them. They are nice kids. Similar ages to mine.

I heard them yelling over the fence one day because their hockey ball had come over the fence and the dog had it in her mouth.  I was having a very bad flare day, but I got up out of bed, and got the ball.  I threw it back.

It was a slow, painful walk.  My backyard is also steep.  But they are nice kids.  And I try to treat people they way I would like to be treated.

My neighbour, their father, came out of the house as I was hobbling away from the fence.  He watched my make my way to the stairs.  He called out to me.  I smiled. He asked what was wrong.  I told him rheumatoid arthritis, a very bad flare.  He said he could see ‘something was not right’ and asked if he could help.  I said, no, but thanks for the offer.  He said not to worry about the hockey balls.  I told him I didn’t mind a bit if he or the kids wanted to jump the fence or go through the gate to retrieve them.  They are welcome to come into my yard, and my dog won’t mind either.

He said thankyou.  He asked me some more about my rheumatoid arthritis.  I tried to explain a little…pain, flares, bad days, better days, no cure but treatments that help many people, to varying degrees.

He listened.  And he said it sounds terrible. And he said it looks very painful.  And he asked me if swimming helped, because he has a pool, and if I thought it would give me some relief, I was welcome to swim or float in their pool.  Anytime.

I was holding back tears at this point…from the pain, from the fatigue, from the side effects of the oxycodone…but mostly from the unexpected kindness.

And yesterday my bin was taken up from the street and left at my gate.

Rheumatoid arthritis and eyes…uveitis, iritis, cataracts and glaucoma

uveitis and rheumatoid arthritis

http://www.insighteyespecialists.com/patient-education/iritis/

I’ve been very quiet of late because I have been struggling.  I haven’t wanted to write a really ‘negative’ post, but it’s not really negative. Its reality. Its truth.  I suppose it wouldn’t be honest for me to not admit that over the last few weeks/months the hits have kept coming.  And they have knocked me down.  And I have been experiencing bouts of depression and loneliness that I can’t just ‘mind of matter’ and wish away. No amount of positive thinking or optimism is enough right now. In all seriousness, the surprising thing is not that I am now experiencing this depression, but much more that I have gotten through the last few years largely escaping it.

I hate to admit that I am not coping.  But I am not.  I don’t know if the pain is worse now, or if my pain tolerance has fallen.  Does it matter?  The end result is the same.

One thing I am very sure about is that my depression is secondary to pain.  When the pain is under control, there is no depression.  In the beginning I remember doctor after doctor, person after person, telling me I was just depressed. Doctors, because my bloodwork was clear.  People, because I looked just fine.

All.  Wrong.  In my case.

I know there are people who suffer aches and pains as a result of depression.  It’s a physical manifestation of their depression, and the pain is very real. But this is not so in my case.  I log my  moods and I log my pain.  If I overlay one over the other, surprise, surprise.  When the pain has been bad for many days, depression starts to set in.

Now depression has made itself a little home here next to me on the couch…not that I invited it.  Because I have received the blow that all my doctors have been warning me was coming.

I have to get off prednisone.

I know that everyone has a love/hate relationship with prednisone.  But I have loved more than hated, because it’s the only thing drug that really helps, the only thing that keeps me moving.  While I am in daily pain still, when I am taking 15mg of prednisone daily, usually the pain is manageable.  I can walk.  I can take care of my kids.  I can go to the gym sometimes.  I can look normal.

I still have the mega flares, where I spend a few days in agony and unable to move.  But they aren’t every day.  Life is far from ideal…but it’s comparatively liveable.

My doctors have been telling me for years that I need to get off prednisone, because it will cause me more trouble in the long run. The usual worry is bone density, but for me it’s my eyes.  I have uveitis again, plus cataracts and increased eye pressure from the prednisone.  My opthamologist told me I have to get my dose down to about 7.5mg, or risk losing my eyesight.

So my time is up!

I live on my couch now, and am taking oxycodone and ms contin (morphine) around the clock to deal with the pain.  This is not living.

I have steroid eye drops for my eyes (irony). They are improving. I go back in a few weeks to get another check.  Perhaps if they are OK, I can go back on prednisone.  I doubt it.

I am still taking Enbrel, methotrexate, Naprosyn and plaquenil.  Not helping.  I am switching to a new NSAID – arcoxia.  It is expensive.  But worth every cent if it works.

Last visit my rheumy said she will switch me to Humira in 8 weeks if there is no improvement on Enbrel. She doesn’t think there will be.

So I wait. And wonder.  Has anyone else had eye inflammation, uveitis, iritis?  Or complications from prednisone use, like cataracts and/or glaucoma?  Let me know how you’re dealing with it, or how it all turned out.

Rheumatoid Arthritis, hair loss and biotin

Hair lossI guess things are going better, because I am starting to notice other things.  Things that are far more minor.  Things like my hair loss.

When you’re in excruciating pain, you don’t give a toss about being almost bald.  But when that pain fades a little, those smaller issues are able to come to the fore. The upside of this is I am clearly in less pain these days.

So now let’s deal with the hair loss!

It’s a very common symptom.  Whether it comes from the rheumatoid arthritis, the medications, or whether it is a sign of Lupus (which sometimes my rheumy thinks I have, and other times my rheumy things I don’t) I don’t know.

What I do know is I have about a third of the hair that I once had.  I am always trying to find ways to make it look thicker.  In the end I usually just whack it up in a pony tail, and hope no one notices how thin that pony tail really is.

When I started taking methotrexate  my hair loss accelerated. Then when I took Arava (leflunomide), it started coming out in great handfuls.  Personally I think Arava did the major damage.

But I have been off Arava for many weeks now, and my hair is still coming out in clumps.  It amazes me that I have any left at all, infact!   My shower is covered in clumps of hair.  I know.  EWWWW!

So I have been reading about biotin.  I’ve been taking it for a week.  And quite amazingly, no more hand fulls of hair in the shower anymore.  Still some hair fall, but much, much less.

It seems to be helping.

So what is biotin?

Biotin is a B-complex vitamin. It’s also known as vitamin B7 or Vitamin H. Biotin is present in the body naturally and it is essential for metabolic processing of carbohydrates, protein and fat.  Some say that biotin can help you lose weight as it helps your metabolism operate optimally…I don’t know if that’s true, but it sounds like a nice benefit!

The main reason people take biotin is to improve the thickness and quality of hair and strengthen their fingernails.  It can only assist if you are deficient in biotin, however.  The theory is that DMARDs like methotrexate and Arava deplete your B group vitamins, including biotin, and that causes the hair loss.

So what dose to take?

Recommendations vary from 300mcg per day to 5000 mcg per day.  I’m taking 1200mcg.  Start there and see how I go.

It’s an extremely safe supplement.  It has been studied in doses up toe 5000mg per day with no adverse effects noted.

It’s also very cheap, so not a lot to lose.  And as I said, it seems to be working. It could be co-incidence, but my hair loss has slowed.

So I would say if you’re losing your hair, give it a shot.  It might just help. And I believe if you look better, you feel better too.