Rheumatoid Arthritis update

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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.

5 COMMENTS

  1. Firstly I’m so glad you went for it with the holiday & made some great memories. Secondly it never fails to amaze me how this disease can be so up and down & I’ve lived with it for 20 yrs. I too can have the odd days when I have more energy and feel I should cram all those things I don’t usually get done into that time, then the crash and burn afterwards reminds me that maybe I should still pace myself on those days, yet I want to….. no I need to make the most of all those ‘better’ moments and do it while I can.
    I too felt it when I got home from holiday, it’s like our bodies know when we’re ‘able’ to just let go and curl into that all too familiar ball. I had a couple of better days last week and got some painting done, this week I can barely move my neck & every joint is stiff and aching. I still have painting to do but it won’t be today!
    Thirdly I am hoping and praying that Humira will be approved, and fast and that ‘this’ will be the one for you. Hang in there xx Gilly

    • Thanks Gilly. I hope you’re feeling better. I live for those odd days when suddenly everything is mild…logic says pace yourself, but suddenly being capable of so much, and having energy is so seductive! Wishing you more good days than bad!!!

  2. I am very sorry to read about your struggles. Your history is quite similar to mine.
    I have been fighting RA for 17 yrs.
    I have been on every drug there is. Started years ago with Remicade, then moved on to all the biologicals with minor or no relief. Humira, Enrel, Kinneret, Actemra and on and on…..
    I’ve had multiple surgeries and joint replacements and am facing more. More than a dozen in total.
    My Dr. recently had me try ILARIS. So far it has made a huge difference but we shall see what the longterm brings. The cost is crazy, $16,900 for one needle that lasts for up to two months.
    Good luck!

    • Good luck to you too, Cliff. 17 years is a long time without significant relief! I haven’t even heard of Ilaris – but I hope it continues to help you! All the best!!!

  3. lets see what happens if you carry on with the Azathioprine and notnhig else. It was fine for a while, just a few Crohnsie symptoms BUT she’s just had bad flare up which put her in hospital for 8 days on IV fluids, antibiotics, MRI scan and colonoscopy and then 1st shot of Humira its amazing what you can acheive in 8 days!! Jazz said Humira feels like 1000 bee stings. She had her 2nd shot last Friday but feels so upset because she’s still in so much pain. She too has lost alot of weight and some days can barely move because of the overwhelming tiredness. Reading your blog is like listening to Jazz and I thank you for being so honest and brave about your experiences. As we were driving to hospital the other week we both said I wonder how Ben is getting on with his Humira? Jazz’s consultant also told her (remember she is only 14) that if Humira didn’t work she could be looking at a stoma. I was horrified and so was Jazz. As soon as they had left her bedside she just cried and cried I felt so helpless. We’ve managed to talk about things since then and are hoping that Humira will be the one’ that works and are trying to stay positive. I hope by the time you read this you are pain-free and planning your next trip to Scotland. Take care Ben and speak soon x Jazz & Melissa

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