The truth about living with Rheumatoid Arthritis

#enbrel

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.

Rheumatoid Arthritis after ten weeks of Enbrel

shoulder arthritisI saw my rheumatologist yesterday.  I have to preface this post with this:  I do love my rheumy.  She is excellent.  She is intelligent, caring and open with her opinion.  She’s happy to explain her thinking, and happy for me to ask questions.  I trust her.

But I don’t always agree with her treatment plan.  She is the expert on Rheumatoid Arthritis from a medical point of view.  But I am the expert on me.  On what I am experiencing.  The difficulties I’m facing. What my life looks like.

These things affect how I’d like my RA to be treated.

She was running very late yesterday.  I waited more than an hour.  She wanted to catch up. I understand this.

But I wanted to talk.  And to her credit, she didn’t rush me out of there.  I think I am perhaps more frustrated right now, with my disease than anything else.  Frustrated that it seems no one can see how bad things have gotten.  I’m not explaining it well enough, no matter how I try.

I am tired of waiting.

Enbrel is working a little.  Maybe 20-30%? It’s always hard to put a number on it.  Rheumy wants me to persevere.  I expected her to want me to try the full four months.  Another six shots.

But she wants me to give it ANOTHER six months, after that.  So ten months in total before she will change the treatment.

That is a very long time to wait.  I understand that I have long standing disease. I understand now that it’s considered severe.  I understand a response might take longer.  But ten months?

My understanding is that most people give a biologic 3-4 months.  Please, I’d love to hear others experiences…please comment?

She did say that good responders would have responded by now.  She said she had a patient that it took six months for Enbrel to start to work.  So OK, I understand. I’m happy to commit to six full months.

I’m not sure about ten months.  Rheumy also said I could call her if I wasn’t managing, if the pain got unbearable.

I’d just finished telling her that the pain *is* unbearable.  I’d just finished telling her that I;m not managing.  That my life consists of couch time. That I take 4 oxys and two slow release morphine every day.  That I need a friend to pick my daughter up from school.  Hmmmmm.

So then I told her I’d restarted methotrexate.  She looked alarmed and asked my why I’d stopped taking it!  Um, remember, there was this little issue with a majorly bad reaction that put me in hospital.  I had to remind her of the circumstances, and that I’d been hospitalised.

She remembered in a rush and apologised.  She then agreed that a lower dose was a good idea, however.  So that we have more treatment options down the line.  She left it up to me as to whether to stay at 5mg or try 7.5mg.  She felt methotrexate might make Enbrel work better.  Several studies support this, it was part of my reasoning also.  30% improvement from Enbrel…if I can get another 20% from methotrexate, things are looking up?

I might then be able to reduce my prednisone.

Which Rheumy wants me OFF. Stat!  I read a summary of the updated EULAR (European Union League Against Rheumatism) Guidelines for Rheumatoid Arthritis and they emphasize that only low dose corticosteroids (prednisone) should be used.  Low dose isn’t defined, but it’s usually 7.5mg or less.  And should be tapered within 6 months.  So her approach is in line with the latest guidelines.  But it’s not realistic for me.

I explained to her that I am completely useless at 10mg of prednisone.  She said I needed to get down to 7.5mg.  I said I can’t.  Flat out.  I’m sorry, but I can’t live a non-functional, miserable  life on oxycodone and morphine when I can take prednisone and function most of the time.

She wasn’t happy about the level of opioids I’ve been taking.  I told her I needed them to function.  But I don’t enjoy being doped up and zombiefied  (that’s the medical term…LOL).

So she agreed.  20mg of prednisone to get me back on my feet.  Taper down to 15mg, which is my usual dose over two weeks.  Then after another two weeks start to taper again.

I agreed, but just between you and me, I’m not going to do that.  I have done the prednisone taper four times now. Each time, it doesn’t matter how slowly I taper, somewhere between 12mg and 10mg (on Enbrel) the pain becomes too much, and life stops.

I am not tapering prednisone this time until I am sure I am getting a response from methotrexate and/or Enbrel. It is an exercise in torture.  Pure,  pointless torture.  It takes me out of the game, brings on depression from the pain and disability.  And we KNOW how this ends.  I taper down. I suffer.  I hold on until I can see my rheumatologist.  We up the prednisone.  The game begins anew.

No more.

My  body.  My choice.

I understand the risks. I wish the rest of the world did.  All the good options were off the table years ago.  Now it’s all about the hard choices.

I also complained about my shoulder again.  The pain in my shoulder has been somewhere between moderate and excruciating for about 2 years now.   It feels like there is a knife permanently lodge in my back.  And another at the front of the shoulder.

I keep using it because I have to.  Yes it hurts.  She told me it can’t be that severe, else I wouldn’t be able to lift my arm.

Erm…I have to lift my arm. Yes it hurts.  I also believe in ‘use it or lose it’. If I stop moving it, I will l lose that mobility. So I lift my arm.

So she agreed to order some x-rays.

The appointment felt like an uphill battle.  But as I said, she was running late.  I kept interruptin and asking for things.  She was not unsympathetic.  And all her reasoning makes sense.  And for the most part, she gave me everything I wanted.

I am just tired of waiting.  I would like to move onto the next treatment option more quickly.  But I will give it six months.  Prednisone will kick in tomorrow or the next day.  Life will return.

And I will become more objective.  I am still thankful that my rheumy got me on biological therapy at all.

So I am still grateful.  Now I need to return that favour with trust and faith in her years of experience.

Rheumatoid Arthritis, Enbrel and the next set of choices, part 2

what does a rheumatoid arthritis flare feel like

Image source: http://www.anesthesia.org/images/pain3.jpg

Ok, so down to the choices.

They suck.

Anyone who has been dealing with Rheumatoid Arthritis for a while, and hasn’t found their magic combination of drugs yet, and HAS had to deal with all the pretty side effects, will know exactly what I mean.

In Australia, to access some biological drugs – bDMARDs – you need to take methotrexate concurrently.

Last time I took methotrexate, I had a reaction to it that nearly killed me.  Put me in hospital.  Scared the crap out of everyone around me.  Scared the crap out of me, most of all.

I had this reaction after six weeks at 10mg of methotrexate.

To access medicare subsidised treatment of Abatacept (Orencia), Golimumab (Simponi), Infliximab (Remicade), or Rituximab( Mabthera) you need to be taking at least 7.5mg of methotrexate weekly.

Out of the eight biological DMARDs available, four require methotrexate.  You can only try five biological drugs over the course of your life, under a medicare subsidy.

I have tried one.  That leaves four.  If I don’t take methotrexate, that leaves three.  My rheumatologist has already said Humira is not a good choice for me.  It’s likely that Cimzia will cause me problems also, going by previous experience.  That leaves Actemra.  I believe I need to try another TNF blocker before I try Actemra, though the literature isn’t completely clear.

So that means methotrexate.

The drug that almost killed me.

But…I only need to take it at a lower dose.  I didn’t have problems at 7.5mg.  Worth the risk?

Tough call.  Very.  Tough. Call.

The other option?

Prednisone.

Prednisolone is loaded with side effects.  BUT it keeps the inflammation at bay.  It gives me maybe 60% of normal?  Some days are awesome on prednisone.  Some days are still hell.

It doesn’t stop flares completely.  It doesn’t take all of the pain away.  But it makes it ‘moderate’ pain, rather than knock-down pain.  And NO I do NOT have a low pain tolerance.  If I hear that one more time I WILL slap you J.

Prednisone gives me a life.  A Reumatoid Arthritis impaired life, admittedly.  But on most days, I can walk. I can work. I can go to the gym.  Two days a week are still a write off.  But five are OK.  That might sound suck-worthy to non-RA sufferers. But I think any long term sufferers of severe RA will understand.  Prednisone gives me a life.

Without prednisone, I am couch-bound.  I am doped out on morphine and endone and red wine.  I am doing the bare minimum.  I am keeping my kids alive, but I am not wholy present. And there isn’t a whole lot of fun.

My doctors (two rheumatologists, and and general practitioner) tell me I must get off prednisone.  But it’s the only thing that helps.

Methotrexate is the door to other treatment options.  One of which might give me more improvement than prednisone has.  Might J

Anyway, I thought and thought and researched and read.  And I finally decided.

And once I made my decision, much of my stress left me.  So much misery is bound up in indecision.  So I try not to stay there too long.

Last Thursday I took 5mg of methotrexate.  Just the usual side effects…nausea, that ‘kicked in the stomach’ feeling and headache. And fatigue. It passed after a day.  It’s fine.  Compared to RA, it’s not a problem.

So tomorrow I see Rheumy.  I have to tell her I have started taking a drug I swore I would *never* take.  (Credibility issues…).  I need to explain my reasoning to her.  Then I need to see if she agrees.  Having been in severe pain for a few weeks now, its just possible that I’m not making the best choices.  I don’t have a partner I can talk to, bounce my logic off.  I just have me.  And my reasons.

And what’s my reasoning really?

I have a friend who recently started Simponi.  He hasn’t had a flare since he took his first shot, three months ago.  I want what he’s having.

Rheumatoid arthritis, Enbrel and the next set of choices

painI’ve been quiet lately again.  I think most regular readers of this blog will know why.

Enbrel isn’t working. Or not working well enough.

I’ve taken 9 shots…I will take my 10th tomorrow.

I haven’t wanted to write this post, because I don’t want to brutally, coldly, analytically look at my results so far, and admit them.  Tomorrow I see my rheumatologist.  And while I love my rheumy, seeing her always brings some anxiety. A reality check. A taking stock.  A no-holds-barred look at where I am with my rheumatoid arthritis.

I’m a very positive type of person…I’m optimistic.  To the point of denial, sometimes.  I don’t get bogged down in setbacks (usually) but as we all know, Rheumatoid Arthritis is a serious disease.  It is painful. It is debilitating.  It is disabling and life limiting.  Even the most optimistic, glass half full type person hits the wall sometimes.

And the last two weeks, I’ve hit the wall.

Why?

The pain is much worse.  On 15mg of prednisone my life (on average) looks like this.

15mg prednisone, 1000mg Naprosyn, plaquenil

2 moderate/severe pain days per week.

3 moderate pain days

2 mild pain days

2 sleepless nights, where I lie awake most of the night because of pain.

1-2 endone (oxycodone) per day.  Targin (slow release oxycodone) or ms contin (slow release oral morphine) a couple of times a week – when I really need to sleep.

Gym 5-6 times per week.

Centergy (yoga/pilates) twice per week.

Power (Pump – lifing weights to music) twice per week.

And 2 or three cardio sessions – Spin class, either 30 minutes or 45 minutes.  Or cardio machines – cross trainer or recumbent bike.

On my very best days, I even run on the treadmill.  All of this exercise *causes* pain…but the benefits it gives me (muscle strength, fitness, cardiac health, mood boost) outweigh the pain.

It’s pain I can work through.  That doesn’t mean it’s mild pain – we RA chicks are pretty tough!

I also have 1 major knock down flare per month – 3 or 4 days of being bedridden by severe pain.  Some months it’s twice.

So that’s still a life that is severely impacted by Rheumatoid Arthritis.  That’s a life spent dealing with a lot of pain.  But that is still a functional life.  A useful life.  Dare I say it, even a happy life.

So where am I now?

10mg of prednisone + Enbrel.  Naprosyn.  Plaquenil. 

4-5 days of severe pain days.  Knock down days.  Full-body-mega-flare days.  Completely-unable-to-function days.

2 days of moderate pain.

I have been to the gym three times in the last two weeks. Twice it was a total fail.  I was unable to finish the class.  The third time I just sat on a recumbent bike and made the wheels go round for 30 minutes.  I guess I just wanted to be in an environment that I enjoy. My (previously) happy place. I ignored the fact that I wasn’t really exercising as such. I just needed to be there.  Out in the real world.

I don’t sleep at night unless I have taken slow release oxycodone.

I take 4 endone daily.  2 slow release oxycodone.  Just to function on my moderate pain days.

I am not exercising. I am not writing. I am not working.  I am not functioning.  I am just covering the essentials – keeping my kids fed, and clean school uniforms available.  I am not living.

I’m not taking my kids out.  I’m not helping them with their homework.  I’m not fun to be around.  I have needed to ask a friend to pick up my daughter from school.  (My son now takes the bus).  I’m not calling my friends, because I don’t want to complain to them.  They feel neglected because I haven’t been in touch, and asked them how they are doing.

I look exactly the same on the outside.

I make small talk if I run into an acquaintance at the store.  When people ask how I am, I say “Good! And you?”

But this is the truth.  I am not living.  I am existing.  I have two friends whom I admit this to.  And, of course, my fellow arthritic chicks.  (And arthritic guys? )

So this is where I am.  It’s not a good place.  Where does it leave me?  With some tough choices.  I’ve raved on a little much, so I’ll layout my choice in my next post.  Back in a bit…

Rheumatoid Arthritis and life after four weeks of Enbrel

enbrel2It’s update time.  I know that Enbrel can take 3-4 months to work, but many people have given me personal feedback that they knew much quicker if a biological was going to work for them.

So…this isn’t my final conclusions, its an update.  How things are going after four weeks.

I believe Enbrel is helping.

I believe that on average my pain levels are reduced by about 30%.

I know that doesn’t sound like much, but it really is.

30% means that the moderate to severe pain in the morning is moderate.  And becomes mild within an hour, rather than three…or never.

30% means I am sleeping through the night most nights, instead of being woken by pain and then unable to return to sleep.  I am finding that Monday nights and Tuesday nights I tend to wake more.  I think that’s because Wednesday is Enbrel day, and its wearing off.

30% means I am down to 13mg of prednisone.  And I am still able to exercise at the gym most days.  I have tapered prednisone many, many times now.  And I am currently tapering a 1 mg every two weeks.  Nice and slow.  But regardless, I always hit 12mg and become couch bound. That’s the line.  I’m still 1mg away from there…but I believe that when I taper down to 12mg next week I will still be walking.  That is pretty amazing.  We’ll see whether I am still working out in the gym, and whether I can still lift any weight, or need to concentration on bodyweight exercises and stretching alone.  I am definitely lifting less right now, and not able to work for as long.  I am weaker and have less stamina.  So I am absolutely feeling the prednisone taper.  But each week gives Enbrel another week to build up in my system and do its thing.

30% is still a very long, long way from pain free.  I am still in pain every day…all day.  But there could still be a lot of improvement to come!

Now for the flip side of the coin – side effects.  Avid readers of this blog will know I have experienced some weird and wonderful and even life threatening side effects.  So what’s the deal with Enbrel?

A headache.

Low grade, nagging, but totally manageable, headache.  Worst on Thursdays and Fridays (post Wedneday shot).  But it does fade as the week goes on.

So I’m a fan.  Enbrel is my friend.  I am sure it is helping…and while the improvement is not spectacular, it is certainly enough to make taking the shot worthwhile.  Especially because I still have a lot of hope for more improvement.  The other benefit is that I am taking less oxycodone.  Most days I only take 10mg now…instead of 20mg or even 60mg.

Tomorrow is shot number five.  And I’m looking forward to it!