The truth about living with Rheumatoid Arthritis

#prednisone

Rheumatoid Arthritis, Prednisone and Exercise

Today is the first day that I feel a bit OK in a while.  Pain mostly controlled by oxycodone, prednisone sitting at 20mg but I need to take it lower, because my blood pressure and heart rate are both too high.

So I went to gym.  I drove 15 minutes to walk for ten minutes on a treadmill and do some stretches,  and then I drove 15 minutes home again.  Now I am recovering at home with a big bottle of water to rehydrate.

Why?

Continue Reading

Rheumatoid Arthritis and prednisone and bone density and osteoporosis

Lumbar Spine Right X-Ray MarkerI have been on a moderate dose of prednisone for around 3.5 to 4 years now.  I guess I would average 15mg per day over that time.  I have bursts where I go up to 30mg and feel pretty darn good (apart from the anxiety and the sweats and the mania) and then I try to taper off.

I can’t get off prednisone.

I’m pretty sure I have secondary adrenal insufficiency now, from long term use.

My blood sugar is too high from prednisone  use.

I have glaucoma, but it’s currently under control.

I have cataracts from prednisone use.

My skin has thinned from prednisone use.

I have high blood pressure…prednisone probably contributes, but that could be from any one of a number of medications I take.

Anyway, prednisone has loads of side effects. One of the biggest concerns is always osteoporosis, or loss of bone density.  Osteporosis is generally irreversible, and leaves a person very vulnerable to fractures.  Rheumatoid arthritis itself raises your risk of osteoporosis, but prednisone is notorious for causing bone density loss.

My last bone density or DXA scan was two years ago.  At that time I had been on lots of high dose bursts.  My doctors were very concerned.

The scan came back abnormal. Very abnormal. But for once it was the opposite way. It was amazingly good.  My bone density was about 7x more dense than an average person of my age.  It caused quite a stir. My GP did some research and could find no reason, nor any reason to worry about this. It appears my genetics just *knew* I would need to be on prednisone long term, and gave me the bones to deal with it.

I’m quite used to be the ‘unusual’ patient. I get that all the time.  But its not usually a good thing. This time it was.  And I had a little party and did my happy dance.  Prednisone hadn’t done its thing to my eyes, and bloody sugar and blood pressure at that point. I felt like I’d been given a free ride on the prednisone train!

Anyway, I was looking forward to seeing what, two years down the track, my bone density looked like.

A bone densomitry scan is a simple, painless scan, with no preparation required. It measures the density of your spine and the femoral head, at the hip.

I won’t keep you in suspense.   My spine was exactly the same. I mean, EXACTLY the same. The technician was laughing, because I had just finished explaining that my bones were unusually dense.  She said she’d never seen anything like it. Nor had she ever had someone have exactly the same reading twice, to the third decimal place.

The reading at my hip was different – a 5% bone loss.  That’s pretty normal. And again, I’m starting with such dense bones, it’s not at all scary. Especially considering the doses of prednisone I am taking.

Why do I have such dense bones?  Mostly some good genetic luck there. BUT it has to be said I have done weight bearing exercise all my life.  Even now, I lift light weights and do yoga/pilates.  Weight bearing exercise keeps your bones strong.  I also ensure I get plenty of calcium and take vitamin D supplements.   All of those things help.

So, in terms of osteoporosis at least, I am have no need to worry.  In fact I’m freaking Wolverine.  I was born for prednisone.  My doctors will be pleased.  And I feel justified in my decision not to even try taper down before Christmas.  In the New Year I will reassess everything.

But for now, I’m just going to enjoy a bit of good news.

Rheumatoid Arthritis, Sjogren’s Syndrome and how prednisone affects eyesight

uveitis and rheumatoid arthritis

http://www.insighteyespecialists.com/patient-education/iritis/

I haven’t been blogging much lately.  I blame life.  Life gets in the way.

But health reigns supreme and today was my ophthalmologist’s appointment to check how my eyes are going.

I have been worried about my eye sight.  A few weeks ago I couldn’t focus my right eye.  I just could not see clearly out of it.  Everything was blurred, and I had to keep it closed because it was painful and light sensitive.  It scared me. I upped my eye drops and it improved.  Then it happened again.

But life got in the way and I forgot about it.

As I’ve been tapering down on prednisone, my eye flares have returned.  I have been on upwards of 20mg for a few weeks now.  And while even 30mg doesn’t stop my joints flaring, it does make the flares less frequent and less severe.

When I hit 17.5mg my eyes started flaring.  I wake up every morning with swollen red eyes,  painful and light sensitive.  Within 2 hours they have mostly be cleared up and I can see normally.

I tapered down to 15mg yesterday.  So today my eyes were not pretty. Which is good, because my ophthalmologist got to see my eyes when they were flaring.  My appointment was at 9:15am, so my eyes were considerably less swollen by that time.  I still looked like I’d been crying for the last week or so though.

And the news was good.  All things considered.

My main problem is dry eyes.  Sjogren’s Syndrome.  My eyelids are inflamed from rubbing on dry eyes.  Blepharitis.  Who knew there was a name for it?  But my eyes themselves are looking good. No uveitis or sclertis.

My eye pressure is high – signs of glaucoma.  This is from the prednisone.  But my optic nerve is perfect. No signs of damage, so my vision is not at risk.  So the glaucoma/high eye pressure doesn’t need treatment.

Eye pressure is a very individual thing.  My ophthalmologist explained that one person may have an eye pressure of 10 and damage can be occurring to the optic nerve, therefore they require treatment.  Someone else can have a pressure of 20 and have no damage.

My eye pressue is now 16.  A year ago it was 10.  So her concern is this rate of increase.  But because my optic nerve is pristine, I don’t need to go back for another check for 9 months.  Which is good news!  The longer between check-ups, the happier she is.  And so the happier am I!  If my doctor isn’t worried, then I won’t worry either.

My cataracts are growing, but slowly.  The cataracts are also caused by prednisone. At some point they will need to be removed surgically.  I’m squeamish about eyes, so I’m not looking forward to that prospect.  It could be many years away though, so I’m just not going to think about it, frankly.

And the issue with not being able to focus my eyes?  My doctor believes that is just a symptom of very dry eyes. I need to be more vigilant with my drops, use them more often, and use the lubricating gel with vitamin A at night.  I have to admit I really don’t much care for putting the gooey gel in at night.  It’s just kinda gross.  And it blurs my vision, so I can’t go to bed and read or play silly ipad games.  Which is what I tend to do.  So I go to bed and then forget to get back up before I go to sleep and put the gel in.  It’s a simple thing.  I just have to be more diligent.

So many little things I need to do daily to keep my body functioning.  High maintenance?  You betcha!  But rather than seeing all these things as reminders that I am sick, it helps to think of them as ways that I am keeping myself healthy.  And all of these little things do add up to a better life.

Adrenal insufficiency and prednisone side effects

rheumatoid arthritis medications

prednisone for adrenal insufficiency

So prednisone then.  I need it. Not only to function, to walk, even jog occasionally.  I need it to survive.

Adrenal insufficiency means that your body doesn’t have the ability to produce enough cortisol to sustain life.  Or it means that in an emergency situation, or an extremely stressful situation, your body will not be able to produce the burst of cortisol that normal people do, to help you get through the situation.  Stressful situations could be a severe illness, such as a virus. Or an injury, maybe a car accident.  Or when you need surgery.

Long term use of prednisone has given me a level of adrenal insufficiency.  I believe it to be relatively minor, but I need to investigate further.

Something like surgery can be planned for, but the other situations cannot be.  So anyone with adrenal insufficiency should wear a medic alert bracelet, or carry a card, so that in a medical emergency, if you are unable to speak, medical staff will know that you need steroid cover.

They should also carry a dose of injectable corticosteroids in case of emergency, so that they, or someone else, can give them a potentially life saving dose of steroids.  Much like someone with anaphalaxis should carry an epipen.

In the meantime, daily prednisone is necessary.

Unfortunately the fact that my body needs prednisone to survive doesn’t negate all the terrible potential side effects of prednisone.

At this time I have high blood pressure, and high cholesterol.  Also high blood glucose and I am on diabetes medication to control it. I am 12-15 kilos overweight.  I have cataracts, and I have had glaucoma.  Thankfully that resolved, because I was in real danger of losing my eyesight permanently.

All of these things are from prednisone.  All of them, with the exception of the cataracts and glaucoma have the potential to shorten my life considerably.  I’ve been told that if I keep taking this much prednisone I can expect to lose 10 to 15 years of my life.

But I’ve read that uncontrolled severe Rheumatoid Arthritis takes 10 to 15 years off your life as well.

So.  No real win either way.

At least I can fight the high blood pressure, blood sugar and cholesterol with diet and exercise. If I can exercise, and make good nutritional choices.  On a high dose of prednisone, I can exercise.  I hope that healthy lifestyle choices will counteract some of the damage that prednisone is doing.

We will see.

Still. It is my choice. And this is the choice I am making for me.  I cannot live my life on the couch. I just can’t.  It’s not living as far as I’m concerned.

Prednisone doesn’t make me pain free. But it does take moderate to severe pain down to mild to moderate pain.  At this dose, at least (30mg).  I have to taper down from here. And find a balance point. Where I have more mild/moderate days than moderate/severe days.  I know I will always have bedridden days, no matter what.  But I am aiming for no more than two of those per week.  I need to find the dose that gives me that.  And then talk about it with my doctors.  Listen to them try to convince me that I need to taper lower.  And then respectfully disagree.

Unless something worse happens from the prednisone.  There are other major side effects.  My heart rate is fast. I have tachycardia and chest pains. I need an ECG, but I have been avoiding it.  And I need my bone density tested again.

Last time I had my bone density tested, my test results were outstanding.  And unique.  I caused quite a stir, in fact. I have seven times the bone density of the average person. Very unusual!  I am WOLVERINE!!!

And I can honestly tell people I’m not fat, I have heavy bones J.

But seriously, prednisone has the potential to cause even more serious side effects.  If and when they appear, I will have to re-evaluate my position.  In the meantime, I’m going for a light jog.

Rheumatoid Arthritis and Day 3 of the prednisone burst

Day three of 30mg of prednisone, and I am about 70% better than I was three days ago.  I can’t believe it.  I still have aches.  My wrists are still sore, so are my feet and knees.  My lower back is the sharpest and my right shoulder hurts more in some positions.  I guess that’s because of the mechanical damage to the shoulder that needs cleaning out.

But it’s the intensity that has dropped.  My muscles are sore from my first workout in a few weeks.  And my joint pain is no worse than my sore muscles.  When I got up this morning, I could stand, and walk.  I didn’t need to hobble to the kitchen to get heat packs first thing.  I was stiff, but I loosened up pretty quickly.

Incredible.

I didn’t sleep much last night, but that’s pretty normal.  I am ravenous. Fine.  None of this matters much when three days ago I was in so much pain I literally could not move.

And now the pain is mild.

This is awesome.  It’s the kind of pain that if I get busy and get moving, I can put out of my mind.  I can push through it.  I think this is the kind of pain that most people think I am talking about when I talk about arthritis.  I wish.  This is very manageable.

But most importantly, this means most of my pain is reversible. Doctors have been casting doubt on whether or not I truly do have inflammatory arthritis. If my arthritis is active, or if I just have a pain syndrome.  Or its pain from cartilage damage done before my inflammation was under control.

This response to prednisone proves that most of my pain is caused by active inflammation.  It’s good to know. I was having serious doubts.

And if prednisone can reduce this inflammation, then maybe another drug can too.  Maybe Orencia. Or something else. I have been getting to the point where I was thinking that NOTHING would ever help. Nothing could ever give me any kind of normal life.  Which is a pretty depressing thought.

Prednisone can.  If only I could take it always.

But it also makes me sad.  Years I have been living with this pain. Years!  There is a drug that can reduce it significantly.  But it might send me blind.  So I can’t take it for long.

I could live a normal life with this level of pain.  An almost normal life.  A comparatively normal life.  It’s all relative.

Another problem is that it used to take 20mg to make me feel this way. Now it takes 30mg.  So that would imply that my inflammation is worse.  Also, today is just one day. It’s nearly 11am and I have vacuumed. I have folded the washing. And I have been to the shops and paid some bills.  I will take an endone soon, because the pain is increasing after all of that.  Also I don’t want to go cold turkey on oxycodone. After two weeks of high doses, I’ll taper down.

I’m tired, because I didn’t sleep much.  Predsomnia.  But this just emphasizes the difference between ‘fatigue’ and ‘tired’.  Everyone gets tired.

So this is the first day I’ve felt decent in a long time.  It’s only one day. Tomorrow I might be bed ridden again.  Prednisone has never stopped the megaflares. It has reduced their intensity, frequency and duration, however.

So we’ll see.  I’m back on top of things.  For how long? I don’t know. I’m supposed to start tapering tomorrow.  2.5mg every 3 days.  Until life gets too hard again.

And the cycle continues.  This is literally the story of my life.  I’ve written it all down and documented it, because this is the constant.  At any one time I am either OK on a high dose of prednisone, tapering, or couch bound and wondering how much longer I can take it.  It’s a tedious cycle, and no dmard has broken it.

I need to go back over all these posts and write it up properly.  It’s the anatomy of a flare cycle for me.  The reality of living with rheumatoid arthritis.  This is all straight off the top of my head and uneditted. Its a quick diary.  But it’s clear to me from writing all of this down that any depression I experience is secondary to pain.  And that my pain is caused by active inflammation.  I have to stay clear on those points, to deal with the doctors.  To demand the appropriate treatment.  To not be cast aside as a fibro case.

I am still flaring.  I am always flaring.  My wrists and feet and knees are still inflamed.  Just less so than yesterday.  Pain free has been off the table for years.  Remission has been off the table for years.

Low disease activity IS possible however.  And that’s what I’m aiming for.  It will be good enough for me.