The truth about living with Rheumatoid Arthritis

#biologicals

Rheumatoid Arthritis – Should I take my biological when I’m sick?

One of the most common questions people ask is whether or not they should take their biological when they are sick.

As you probably know, treatment for Rheumatoid Arthritis and many other Autoimmune diseases is based around suppressing a haywire immune system which, left unchecked, is mistakenly attacking healthy tissue.  By suppressing the immune system, the disease process is slowed or even halted completely.  Unfortunately suppressing your immune system comes with risks, the most common of which is making you more susceptible to every bug going around.

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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 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!

Rheumatoid Arthritis, Enbrel and wanting the fairy tale

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.

Rheumatoid Arthritis and I have Enbrel in my fridge!

enbrel2I have in my fridge right now, a one month supply of Enbrel (etanercept).

I can barely believe it. I have been working towards this for years.  I have all the available read the studies I could find on biological dmards, learned which ones have been proven effective on their own (some work far better if taken with methotrexate), searched endless documents for the Australian Medicare eligibility criteria, and educated myself in doctor speak so that I could plead my case to my new rheumy.

And now I have four week’s worth of Enbrel in my fridge.  It’s an injection that will be self- administered (once I learn how) once a week.  I have no problem with needles, and quite frankly I cannot wait to take my first shot!

But I have to wait.

I have had a staph infection that I have been on antibiotics for the last week for.  It’s looking pretty healed to me.  But I also have a cold.  Can you take Enbrel with a cold?  I think you can.

I have an appointment with my doc this afternoon to be shown how to use the autoinjector pen.  I’ve watched the online video at the Enbrel website.  Looks pretty simple.

I have four repeats.  The Australian government allows four months of treatment, and then I need to prove that it is effective with blood work and another assessment from my rheumy.

If it’s not effective after four months, I will no longer be able to receive it.  (Presumably I will be able to try another biological dmard)

But I have high hopes (once again).  And once again, I’m a little nervous about side effects…adverse reactions…the long term consequences.  I don’t allow myself to think about those too much though.

The last few weeks have certainly shown, that for me, living with uncontrolled Rheumatoid Arthritis is A Very Bad Thing.  I am completely dependent on quite a hefty dose of prednisone to be able to move at all.  At some point prednisone will start to cause more problems than it solves.  When?  Who knows?  Next week?  In ten years?

It’s a risk.  A risk I don’t have to take, if Enbrel works for me.  And while Enbrel has some very scarey side effects, they are very rare.

And still, even after all the issues, and problems, and side effects…I’m an optimist.

Enbrel is a risk well worth taking.  Wish me luck!