The truth about living with Rheumatoid Arthritis

#plaquenil

Ophthalmologist – November 2016 prednisone and plaquenil check

Good news.  My eyes are still good.  After ten years on plaquenil, it isn’t causing any eye problems.   Retinal toxicity is a serious potential plaquenil side effect, but it is very rare.  Regular checks are required, because if caught early, it’s almost always reversible on cessation of the medication.

My cataracts are still there, slowly growing away.  These are a side effect of prednisone, but they’re not causing a major problem.  Considering the many years I’ve been on prednisone, and the relatively high doses, I am very lucky.

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Rheumatoid arthritis and glaucoma, cataracts and sjogren’s syndrome – update

My nine monthly eye check came around this morning.  Only its been nearly 12 months, because I’ve already postponed it twice.  Flares and stuff. You know how it is.

Today I didn’t feel great. I had to get my mother to drive me.  Because every 44 year old loves to call Mummy to be driven to their doctor’s appointment.  It’s just one of the many joys of being chronically ill.

Still, I’m lucky I have a mother and that she cares enough to drive me.  Without her I would have had to cancel again.  So, stupid pride aside,  I’m all good.

The reason I need eye checks is because I have Sjorgen’s Syndrome.  It manifests as dry eyes.  Sjogren’s is about much more than dry eyes, but today was about eyes.  And mine are dry. Very dry.

I use eye drops with vitamin A several times a day. I also use a thick gel every night. Well…every night that I remember. Sometimes I forget for a while, and then my eyes remind me that I need to NOT forget.

When my eyes get dry, my eyelids get inflamed.  It’s called blepharitis, and though it’s not at all serious, it is uncomfortable.

More serious is glaucoma.  Long term use of prednisone increases your risk of glaucoma significantly. Elevated eye pressure, or intraocular pressure (IOP), is a risk factor for glaucoma.  My eye pressures have been high, but there is no damage to my optic nerve.  Originally my eye pressures were 10 in each eye.  Which is the low end of normal.  Its fabulous.  Then I started taking prednisone.  At my last test, my right eye was at 20 and my left was at 16.  That was a concern.  Today both eyes were 15, so the pressures have levelled off, and are smack in the middle of the normal range.

Most importantly, my optic nerve is ‘pristine’ to quote my ophthalmologist. She is very happy that I have tapered down to 10mg.  She agrees that 7.5mg would be even better.  And 5mg would be break out the French champagne kinda stuff.  But she understands what a big deal me getting down to 10mg of prednisolone is.

The other thing that prednisone causes is cataracts.  I have slow growing cataracts.  Again, they have grown some.  However I passed all my eye tests brilliantly.  My right eye is not as good as my left.  I still have trouble keeping it in focus sometimes.  It could be the inflammation. It could be the Sjogren’s (most likely).  It could be the cataracts.  And it still could be neurological.  But with the way my optic nerve looks, that’s less likely, which pleases me no end.

So my vision is still excellent.  My colour vision is excellent.  My ophthalmologist (I just keep typing that word to prove I know how to spell it now.  You try.  It’s hard!) is very surprised that my cataracts are not impacting on my vision yet. From what she can see, they should be.

So again, I’m grateful.

She asked if I have trouble with night vision.

Yes!!! I would have forgotten to mention it.  But I do get dazzled at night.  Particularly twilight.  I really can’t see.  When I’m in the car, I can’t judge distance, the lights are bright and blind me, and I am not safe to drive. So I don’t.

That’s a pretty huge inconvenience.  No driving at night.  That really kills my non-existent social life!

Oh and the last reason for the eye check is that I’m still on Plaquenil. I’ve been on it for about ten years now.  It’s the mildest of all Rheumatoid Arthritis drugs, but it can damage the retina.  Sometimes this damage is irreversible, so anyone taking plaquenil should have their eyes checked regularly.  Some doctors say every six months.  Some say every year.  Some say every two years.  Eye damage is very rare, however.

My retinas are fine.

So, once again, the news is good.  Those cataracts will need attention…but I’ve got too much going on right now to worry about ‘one day’.  And there is nothing I can do about it, except taper off prednisone.  And I’m doing that anyway.

So. Two important things, right there. Forget the medical stuff…remember this:

  1. Don’t worry about things you can’t change, and
     
  2. Live in the now. Don’t worry about things that might never happen.

 
Words to live by.

 

 

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…

At the end of the road with conventional Rheumatoid Arthritis treatments…now what?

Right so here we are then.  Back in full body mega flare land.  What have I proven?  That without drugs I am unable to live any sort of reasonable life and I have constant, severe pain.   Good to know.

I have started taking  my Naprosyn again.  Sadly it doesn’t work immediately.  It got to the point where it didn’t work much at all, but I’m not going to dwell on that.  The idea that it may not work doesn’t please me, so I’m going to take the mature approach and ignore it.

So I’m taking Naprosyn…it’s doing Sweet FA.  I’m down to 3mg of prednisolone…it’s doing Sweet FA.  I’m still on plaquenil…it’s been doing Sweet FA for several years now.

As far as I’m concerned I have failed methotrexate convincingly…the doctors see it differently.  I have also failed sulfasalazine.  The doctors see it differently.  We all agree that I have failed plaquenil.  All agree that it is just too mild a drug, and my RA is not mild.

But my RA is not *typical* and so I don’t qualify for any other treatments.

I also tried Imuran (azathioprine), but the side effects meant I didn’t last long on that either.

The doctors feel I haven’t given these drugs a long enough trial.  They are slow acting and you need to be on them for several weeks to see any improvement.  The side effects, however, kick in right away.

Methotrexate, sulfasalazine and azathioprine all cause major depression.  They all also cause nausea, diarreah, headaches, stomach aches, fatigue…but all this is bearable.  Spending your entire life being severely depressed is no better a life than spending it in severe pain.  It’s just a different kind of pain.

And I know that RA, in and of itself, can cause depression.  Or rather the pain and disability that goes along with it causes depression.  Who wouldn’t be depressed when every joint in your body aches all the time?

But this is different.  Medication induced depression is different.  And it doesn’t respond to anti-depressants.  I tried that too.  Several of them.  No effect.

Anyway, the point is I have tried every treatment option available to me.  I don’t meet the qualifying criteria for biologics in Australia.

So now all that is left to me is alternative therapies.

Diet.

Acupuncture.

Supplements.

In the past I have tried all of these.  Some have no effect, some seem to help a little bit.  I think something that helps, even a bit, is worth doing when things are as severe as they are now.  And for me, following a ‘clean’ diet is pretty easy.  I have always been a health nut and ‘indulged’ in sweets and processed foods only occasionally.  So diet is easy.

Acupuncture seems to help with stress.  It is expensive, but right now its worth it.

Supplements are very expensive.  And I don’t know if they help at all.  Again, they might help for milder versions of RA.  But I have a month’s supply and I will start taking them today and see what happens.

I’m also looking at other alternative therapies.  Antibiotic protocol.  Helminthic therapy.  I will research and blog on those later.

I finally got through the gatekeepers and spoke to my rheumatologist No.2.  She told me to get back on methotrexate, sulfasalazine and up my prednisone again.  I won’t take methotrexate.  I won’t take sulfasalazine.  Prednisone is just kicking the can down the road a bit further.  But I might have to do that.

I don’t have another choice.

Hydroxychloroquine (Plaquenil) – medications for Rheumatoid Arthritis (RA)

Hydroxychloroquine (Plaquenil) is primarily used in combination with other drugs, including methotrexate and/or sulfasalazine for moderate to severe Rheumatoid Arthritis.  It is only prescribed alone in patients with very mild symptoms, who are RF negative and have non-erosive disease.   It is slow acting, and  usually takes 2-6 months for any benefits to be felt.

How does it work?

From Australian Prescriber – “Hydroxychloroquine interferes with antigen presentation and the activation of the immune response by increasing the pH within macrophage phagolysosomes.”

In plain English, this means the drug interferes with communication of the cells in the immune system, thereby reducing inflammation.

Hydroxychloroquine dose

Patients usually start by taking 400mg daily.  Once a response is achieved, the dose may be lowered to 200mg daily.

Hydroxychloroquine  side effects

Hydroxychloroquine, as one of the milder DMARDs is generally very well tolerated and serious side effects are rare.  The most common side effects are gastric – nausea and diarrhoea.  This usually improves over time, and it should be taken with food to minimise these effects.

Rashes are quite common, and some hair thinning.  Patients may also develop hyper pigmentation when exposed to the sun, and patients should always wear sunscreen. The most serious potential side effect is retinal toxicity with macular damage.  When starting hydroxychloroquinine patients should have an eye exam, and repeat this every two years, of if they notice any visual changes.

For a complete list of side effects, click here.

Monitoring recommended

Patients taking hydroxychloroquine should have a baseline ophthalmologic exam, especially if they have pre-existing eye disease or diabetes, and then every two years. No specific laboratory monitoring is required.

Contraindications

Patients with pre-existing maculopathy should not take hydroxychloroquine.

Advice in pregnancy/breastfeeding

Hydroxychloroquine is not safe to take in pregnancy. Low concentrations are found in breast milk, therefore caution is recommended if the patient is breastfeeding.