Rheumatoid Arthritis, Enbrel and wanting the fairy tale

by admin on May 6, 2013 · 11 comments

I wanted the fairy tale.  Remission.  Pain free…or at least low disease activity.  Immediately.  The happily ever after that does in fact happen sometimes with biological dmards.

Why not me?

The day after my first shot of Enbrel I felt amazing arthritis–wise.  Pain was mild…at least 50% reduction.  Very little stiffness…and I had energy.

I also had a pretty bad cold.  Colds can make you feel pretty lousy, but I am quite clear on what the symptoms of a cold are, and what the symptoms of rheumatoid arthritis are.  The cold was unpleasant.  But my arthritis improved.

This has happened to me before.  I get another illness, a cold, a virus…something like that.  The theory goes that the immune system swings into action doing what it’s supposed to do and fighting the cold.  So it lays off your joints for a while.

I don’t know if there’s any factual or scientific basis for that theory.  It does make some sense to me though.  I’ve heard it quoted by other people.  I’ve experienced it.  Anecdotal, sure.

So I knew this, but I didn’t want the cause of my suddenly mild arthritis to be this.  I wanted it to be Enbrel working.

I knew I shouldn’t do it, but I posted positive things all over the place.  I told people I thought it Enbrel was working.  I wanted to believe it so badly…it’s like you can make something true if you repeat it often enough. Positive reinforcement.

I wanted the fairy tale.

When I told people that I thought it was working, many of my arthritic friends told me they’d experienced similar things.  That while my rheumy said it could take up to 8 weeks to take effect, many people knew after the first shot if it was working.  I was thrilled.  It was working for me.

And then I did what I always do…I started planning my return to the real world.  My career jump start.  I looked at courses to update my skills.  I cruised the online job market with intent.  I started looking at the time table at the gym at the hard core, high impact cardio classes that I used to do, and figured out a new gym schedule.  I mapped out new, longer, running tracks on google earth, and worked a jogging schedule.  I planned a holiday to celebrate, (and because damnit  I deserve it after all these years of suffering) and it’s actually  worth going away if you know that you’re not going to spend the entire time lying in your hotel room bed.  I even thought maybe I might be able to get a social life…even meet someone.

I took my first Enbrel shot on a Wednesday.  Thursday was amazing.  Friday, Satruday and Sunday were pretty darn good.  If it weren’t for the chest cold, I would have been out running.  Monday was a little creaky.

Tuesday was back to the usual pain.  Pre Enbrel shot pain.  But this made sense to me, because I was due for my next shot.  I couldn’t wait for Wednesday afternoon to take it again. To see if the magic happened again.  To see if Enbrel was truly giving me the fairly tale.

Wednesday, shot time.  No probs.  I don’t mind needles at all…I know many, many people have needle phobias.  I wouldn’t even say the shot stings…pain is relative!

I definitely feel Enbrel gives me an energy boost.  That in itself would make it worthwhile.  A break from the constant uphill battle of rheumatoid fatigue is a beautiful thing.

But no pain relief.  Ok, fine.  Probably in the morning.

Thursday was the same. Same old usual pain.  Not severe, but definately not mild.  Optimism faltering now.  But every fairy tale has a villain…and needs a little suspense.  Give it time.

Friday.  Woken by pain in the night. Broken sleep.  Hard to get out of bed. But I was still able to get out to a client meeting and do some work.  (Small freelance job!)

By 1pm the pain hit with a vengeance.  Hands, wrists, elbows, shoulders, hips, SI joint, neck, jaw, ribs, knees, ankles, toes…especially my big toes…and my eyes swelled up and started to close.

Full body mega flare.

NO!

So I called my friend and cancelled our dinner plans.  I took endone for the first time in three days.  I held it together until my ex-husband came to pick up the kids for the weekend.  Then I poured a glass of wine and cried.  A lot.

First from disappointment.  Then from the sheer pain.

Saturday morning I was determined to outsmart the flare, and I thought I was feeling a little better.  So I went to my yoga/pilates class.  Half way through the class the pain got so bad I was fighting back tears.  I bolted out of there so that no one would see me cry.  Amazing how well you can move when you need to.  But not for very long.

The rest of Saturday was a haze of ms contin, endone and wine.  (Yes, a little alcohol does help the medicine go down.)  I literally could not move.  All of the above joints were aching constantly, and every time I moved it would up the anti to sharp stabbing screwdriver stabs and twists.

RA kicked my butt and turned me into an incoherent blob of lost hope and agony once again.  There are no words for that kind of pain, in that many places.  Don’t even talk to me about childbirth.  Seriously.

Sunday was the same.  But by evening, there was some relief.  I was able to sleep for a few hours.  I woke up with the pain back to about a ‘6’.

So. Much. Better.

Comparitively.

I was able to go to the gym and ride a recumbent for a while.  Then I did some bodyweight exercises.  Very light.  Very slow.  Lots of stretches.  I could have done all of this at home, but I needed to get out.  Your home can easily become your prison when you have severe RA.  I need to force myself to get out, even when I don’t want to.

And now its 3pm and the pain has become rather unpleasant again.  So it’s endone, and a glass of wine.  It’s defrosting a healthy meal from the freezer for me and the kids, even though I have no appetite.  Its heat packs, and a heated throw, and couch time.

But it’s not depression.   I look forward to Wednesday and my third Enbrel shot…and all the potential that is still there for relief.  As another friend said, severe, longstanding RA can take longer to respond.

So I didn’t get the fairy tale.  But I have a friend who started biological DMARD a few weeks before I did.  Different biological – TNF blocker though.  My friend hasn’t had a flare since the first shot.

My friend got the fairy tale.  See?  It does happen…so keep believing!

If I can’t have the fairy tale, this is the very next best thing.

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{ 11 comments… read them below or add one }

Gillian Pidler May 6, 2013 at 10:42 pm

Hi there, all I can say as I lie here on my sofa, knowing just how you must be feeling & wishing I could be out gardening, is never give up that hope of the fairy tale. We all know (those of us that have studied meds for this disease anyway), how they can take up to 12 weeks to really kick in. Hang in there, keep dreaming those dreams and making those plans. Life is nothing once we stop dreaming and dreams can and do come true, I’m hoping yours still will.

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admin May 7, 2013 at 8:06 pm

Gillian, you are absolutely right on every level. The meds take more time…and dreams are everything. What keeps us going through those really bad days. Sorry that you’re doing couchtime as well. I hope you’re out there gardening soon…in the sun, dreaming of better days to come :)

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Sarah May 6, 2013 at 11:14 pm

Oh, dear I think we all have done that, I started the Cimzia, the Dr told me it would reach 85% of its peak in 6 weeks. So first dose, waited, second dose, though ok will start to feel better- booked to have a manicure, which I have not done for years as my hands hurt to much. I was in pain, but went ahead, only got two nails done, that was all I could bear. Third shot – thought it would work, slight improvement, so I enrolled in uni course at home, like you wanting to get back to work. Four shot, thought any day now I am going to be pain free, so made plans to have a romantic night with hubby. So now fifth shot- bloody stuff not working and I have a uni essay due, I am typing with only two acrylic nail, and a randy hubby following me around asking”so tonight dear”. Seriously I do really feel for you, but you are strong, powerful and fab, and like everything you will cope, because that’s who you are. I am keeping you in my thoughts, come on girl we will bet this shit! Xxxxxx

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admin May 7, 2013 at 8:10 pm

I love you Sarah! You paint such a picture with your words…you make me laugh and feel for you at the same time. And I can see it all so clearly! I bet your two acrylic nails are spectacular…your essay will be informed with pain and eloquence…and poor hubs may have to wait a little longer. But you’re so right – we’ll beat this shit!

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Pat Coxhead May 7, 2013 at 6:06 pm

Hi there…OMG I feel for you and wish you all the best to find something that will help. I am very excited and have been for 5 whole weeks because I became desperate….searched the web and facebook links and found The Paddison programme for RA. I read and thought…why not? Nothing to loose at all…for me was this or another treatment that only may have helped….so I bought the book and it is so very exciting because it has worked. What I liked about this diet (lots of juicing) is that the person who took time to write this book did it for a reason….to help other RA people in pain. He tried it, it worked and now he shares this. Please- I am not telling you this for any other reason except it is so very exciting for me so I want to share. Look it up on facebook if you are interested and contact me and I will help you. Hugs and stay strong ! XOX

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admin May 7, 2013 at 8:12 pm

Pat I love hearing about people’s successes…if it works for you, it will work for some others as well. I admit, I haven’t heard of it? I will google and check it out. Thanks for the info and support!

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June May 10, 2013 at 12:06 am

Hoping that the next shot makes each and everyone of you feel spectacular, fabulous and most of all able to do whatever it is that makes you -HAPPY! Life is short and sadly, RA is kicking butts and taking everyone prisoner.
You each have my prayers!

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admin May 10, 2013 at 8:56 am

Thanks June, for your wonderful thoughts. Same back to you!

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Lucy June 13, 2013 at 2:56 am

Wish you all the success in finding something that will help! Hold out for the fairy tail. Anyone know much about stem cell therapy to help treat RA?

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admin June 13, 2013 at 9:02 am

Thanks Lucy. I know there is reasearch going on into stem cell treatments…haven’t read anything in a while tho. Another topic for me to research :)

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Lucy June 14, 2013 at 1:51 am

I did stumble across this which is about RA awareness and stem cell treatment.. http://www.precious-cells.com/raising-awareness-for-rheumatoid-arthritis/
the sources might have more info :)

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