The truth about living with Rheumatoid Arthritis

#corticosteroids

Rheumatoid arthritis and I think I have secondary adrenal insufficiency

rheumatoid arthritis medications

What if you can’t take Rheumatoid Arthritis medications?

Before my recent surgery I was doing a prednisone taper, to try and get to 10mg of prednisone before the surgery. That was what my rheumatologist preferred.  She actually preferred I didn’t have surgery, but I could tell she was interested in what the surgeon would find when she cut me open.

Scans only show so much.

Just as bloodwork only shows so much.  There are so many ways I can talk about the perils of looking only at bloodwork.

What really matters is how you feel. And then coming up with a reasonable hypothesis for why, and then proving that diagnosis. That seems to be the story of my life.  I feel like crap. I try to figure out why.  I ask my doctors about it.  They say something only the lines of ‘meh, whatever’. I go away. I read a few more studies and articles and papers.  I feel  a little worse. Then I feel  LOT worse. Then I nag my doctor again. And then I usually get some tests and a new diagnosis.

Yay me.

It’s tiring.  But in doctoring land no one has time to look at the big picture.  So it has to be the patient.  But the patient usually doesn’t have the education, nor the temperament to analyse the data critically.  As patients, we’re somewhat emotionally involved in the topic!

But if I hadn’t taken this much interest in my own health I would have very likely died twice over by now.  Such is life with a chronic illness. Things can go pear shaped very quickly and unexpectedly.  And I’m not exaggerating.  I tend to under exaggerate, if that’s even a word.  Okay, its NOT a word. There’s another word or phrase. But my brain is numbified today, and has been for ages, so you’re just going to have to nod sagely and say to yourself ‘I know what you mean.’

Anyway, back to pre surgery.  I was tapering prednisone.  As I have done so many times before.

Each time I get to a point. A line my body can’t cross. Its at 12mg.  I can still function, mostly at 12mg. I go under that and things fall apart. Most notably my body.  But my mind as well.

Every. Single. Time.

People keep telling me to taper slower.  But it does not matter how slow I taper. I have tapered as slow as ½ a mg per month. A line is a line.  It is an immovable object. I can’t cross it and remain a functioning human being.

This is what happens.

I get overwhelming fatigue.  Worse than ‘normal’ RA fatigue.  Its like walking through sludge with lead weights tied to every part of my body.  I am constantly fighting to keep my eyes open.  I want to lie down. Sleep.  Ofcourse I can’t sleep. But I still want to lie down.

My muscles hurt.  They ache.  If I lift the milk bottle it feels like I am lifting a 20kg dumbbell and I’ve already done 15 reps.  My muscles fatigue out from the slightest exertion.

I lose my appetite.  No food appeals to me.  I force myself to eat, because I am hungry, I just can’t find a food I can stomach.  After I have eaten, I almost always throw up.  It’s gross.  And my stomach hurts.

I get dizzy whenever I stand up.  Blotches before my eyes and I think I’m going to pass out. Sometimes I do sortof faint. Its sort of a slow motion sit down, and then I just choose to stay on the floor for a while.

I feel depressed and irritable.  I don’t feel like myself at all.  I paint a big smile on my face when I’m in public, and seeing some people does actually make me feel better.  But things get to me more.  Things upset me more.  Stupid things that people say to me upset me, and turn me into a bawling mess. When normally I’d just say ‘Fuck you’ in my head to the offender, and walk away.

And I’m confused.  Not like normal confusion.  Really brain addled confusion.  I can’t remember what I did yesterday.  I can’t remember ten minutes ago. I can’t keep my mind on one topic.  I can’t concentrate on what the kids are trying to talk to me about – I keep asking them to repeat themselves.  And I keep seeing comments I’ve made on facebook and I can’t remember writing that or posting that.

My eyes flare.  They are so dry I can’t even cry.  They are light sensitive and especially the right one feels like someone is sticking pins in it.  My vision is blurred, and I can only occasionally bring things back into focus.

The pain pretty much remains the same.  It’s not pain causing all the rest of this stuff.  It’s something else.

Invariably I get down to 10mg or even 8mg and then I have to do a prednisone burst. I feel like I am dying.  Or rather, I feel  like I am already dead.  I spend my life lying down, feeling miserable. That isn’t living.  That’s not a life. So I burst the pred and the whole stupid scenario starts over.

Before surgery I talked to my surgeon and my anesthetist and they both agreed that I would definately have a degree of adrenal fatigue from years of being on fairly high doses of corticosteroids, and that I would need IV steroid cover for the stresses of surgery.

All of that was done and I came through the surgery relatively well. I did have a bit of a crash, but it was controlled with steroids.

Post surgery my notes stated I have adrenal insufficiency. I have never been officially diagnosed, but on seeing that, I looked into the symptoms.  I have done that previously, because a friend of mine has adrenal insufficiency.  She gave me a lot of information, some of it fit me, and some of it didn’t.  But now its on my file and in my history and its a ‘diagnosis’ as such.

Now, post surgery, as I hit the 10mg taper point on Tuesday and life has been steadily falling apart, I again looked at the list of symptoms for Secondary Adrenal Insufficiency.  I wrote the article, as I was researching to compare the list of symptoms with how I have been feeling.

Sure, the way I feel could be uncontrolled, severe RA.  But because the pain is not actually getting worse, and a lot of the other symptoms aren’t really RA symptoms  I think my body just doesn’t produce enough cortisol anymore.

I believe I have Secondary Adrenal insufficiency.

I can’t have an ACTH stimulation test.  Being on prednisone skews the results.  But I don’t think it’s really necessary.

I think it’s time to just accept that I am steroid dependent, and I need a far higher dose than is acceptable to my doctors.  They want me down to 7.5 or even 5mg.  I just can’t do it.

I will no longer try.  I need to have a life. They keep telling me, it may well be a short life if I keep going this way.

It will be NO life if I don’t!

I’m going to learn more about it.  And I’m going to keep monitoring my symptoms.  I have high cholesterol, high blood sugar, erratic blood pressure and cataracts.  All blamed on prednisone.

But without prednisone I am very sick indeed. I can’t function at all.  I have all the symptoms of adrenal fatigue and would think that I am at risk of adrenal crisis if I keep tapering down and pushing myself the way I do. Or if I for into an accident, or caught a bad virus.  So I don’t see that I have a choice.  And as usual, I will just have to decide what to do about it, because my doctors really don’t know.  I am too complicated, I have too many co-morbidities, and am just not a ‘standard’ case.

So today I took 30mg of prednisolone. I will taper down by 2.5mg every third day, until I get back to 15mg. And there I will stay.

What is Secondary Adrenal Insufficiency

Adrenal glandsThere are two types of adrenal insufficiency.  The first, Addison’s Disease, is an autoimmune disease where the adrenal glands are damaged and can no longer produce enough of the adrenal hormone, cortisol.

The second type, and the type that this article is focussing on, is called Secondary Adrenal Insufficiency and is commonly the result of long term steroid use.  With long term use of prednisone or other corticosteroids, the body can stop producing its own cortisol.  This is why corticosteroids should never be stopped abruptly, and should always be gradually tapered down in dose, to allow the body’s natural cortisol production to re-establish.

In most cases, the adrenal glands will recover, though it may take some months.  Sometimes, however, the body doesn’t recover and doesn’t make enough cortisol to function.  The patient then has to take corticosteroids, such as prednisone, hydrocortisone or dexamethasone for the rest of their life.

This sounds relatively simple, but prednisone comes with a whole host of negative side effects.  It can affect mood, cause weight gain, decrease bone density, increase blood sugar, cholesterol and blood pressure, and cause cataracts.

What do adrenal hormones (cortisol and aldosterone) do?

The adrenal hormones regulate several body functions.  They help your body handle stress (are responsible for the ‘fight or flight’ reaction), regulate blood pressure, the balance of salt and fluids in your body and control how your body uses carbohydrates, fats and proteins.

What is adrenal crisis?

Stress can overwhelm a person who suffers from Adrenal Insufficiency.  An stressful incident, e.g. a car accident, or surgery, can put stress on the body that normally would be combatted with increased production of cortisol. But when the body can’t produce enough cortisol and other adrenal hormones,  the person suffers adrenal crisis.

This is a medical emergency and can very quickly become life threatening.  It requires immediate treatment with intravenous corticosteroids and fluids.

People who suffer adrenal insufficiency need to be treated with extra corticosteroids before and after surgery and when other stressful events occur to prevent an adrenal crisis.  A bad flu or virus or even dehydration can stress the body and bring on a crisis.

Symptoms of Adrenal Insufficiency

 

  • chronic, severe fatigue
  • muscle weakness
  • loss of appetite
  • weight loss
  • abdominal pain
  • nausea and vomitting
  • low blood pressure that drops further when standing up, causing dizziness or fainting
  • irritability or depression
  • craving salt
  • low blood sugar
  • headache
  • sweating
  • irregular menstrual periods
  • sweating

 

These symptoms often progress slowly and are often ignored until a stressful event, such as illness, surgery or an accident causes them to worse or become and Adrenal Crisis.

Symptoms of Adrenal Crisis

In most cases, people have been feeling terrible enough so that they have sought medical treatment for adrenal insufficiency.  Sometimes, however, symptoms appear for the first time during an adrenal crisis.  Symptoms of adrenal crisis include:

  • severe vomitting and/or diarrhea
  • severe abdominal pain, or pain in the lower back or legs
  • low blood pressure
  • loss of consciousness

How is adrenal crisis treated?

Adrenal crisis is treated by replacing adrenal hormones (most commonly cortisol and aldosterone).  People in adrenal crisis need immediate treatment, or the condition can be fatal.  The hormones can be given as an injection or by mouth.

A person with known adrenal insufficiency should carry a corticosteroid injection at all times.  The should also carry identification stating ‘Adrenal insufficiency’ in case of emergency, e.g. a car accident.

 

Rheumatoid arthritis and shoulder arthritis – my latest x-rays

shoulder arthritisAfter I saw rheumy, I went to have my x-rays done immediately.  Get it all over and done with.  And I really want to know what’s going on in there. What can be seen on plain radiographs at this point.

Rheumy was so convinced that if there was any real damage there, that I wouldn’t be moving the shoulder the way I am.  I disagree.  You get used to pain when it’s there all the time. It ceases to be a signal to stop what you’re doing.  You push through it, and ignore it.

My shoulder feels like there is a knife in my back, 24/7.  There’s another one in the front of my shoulder.  The joint ‘seizes’ so I stretch it and rotate it to ‘release’ it. It cracks very loudly. And yes, that does hurt.  But I keep moving it. I don’t want it to seize permanently! I can feel it grinding all the way through its range of motion.  And yes, it hurts.

So, the x-ray findings.

No erosions (although when I had an ultrasound last year, I was told there was some erosion of the AC  (Acromioclavicular) joint).  Maybe because ultrasound is more sensitive, or just differing opinions.

No spurs.

Osteoarthritis of the AC joint.  This is where the cartilage lining the joint has worn away.  This is the cause of some of the pain.

Sclerosis at the tuberosity suggesting a degree of rotator cuff tendinitis. Apparently this is indicative of a ‘rotator cuff in distress’.  You’re telling me…LOL.

The constant synovitis of the shoulder joint eventually erodes the tendons of the rotator cuff. This causes more pain.

This is what they told me 18 months ago, when I had my last ultrasound and cortisone shot in the shoulder.  The relief provided by the cortisone shot into the AC joint confirmed this diagnosis.  So it all makes sense.  The inflammation is still not under control, so the damage continues.  The constant inflammation causes the degenerative changes to the cartilage.  Osteoarthritis.  Also not uncommon in people with severe rheumatoid arthritis. I know I have osteoarthritic damage in my hips also.

This is why the inflammation of rheumatoid arthritis has to be controlled.  If it’s not, this is the kind of damage that occurs.  And will continue to occur until the inflammation is tamed. And the damage is irreversible.

So degenerative changes.  Googling these changes along with ‘Rheumatoid Arthritis’ reveals it to be a complication of RA.  It can be hard to treat.

The treatments start conservatively.  Ice, anti-inflammatories (nsaids).  Then cortisone injections into the joint.

I have done all of those.  The pain is still there, every day.  Some days worse than others.  The cortisone injections help a lot, but rheumy won’t let me have any more of those. So the synovits and wear and tear will continue until surgery is indicated.   As will the pain.

It’s not great news.  Mostly because the only real treatment is surgery.  But it’s not bad enough for surgery yet.  So the pain will continue.  As will the damage.

But at least I know what’s going on in there.  Continuing to use the joint won’t make it worse.  Infact, continuing to use the joint is essential to retain the range of motion.  So I’ve been doing every thing right, even though it hurts.

So…carry on.

Rheumatoid Arthritis on holiday

Ok, bad headline. Rheumatoid Arthritis, the way that I have it, is NEVER on holiday. Maybe it’s too lazy sometimes to make me really hurt badly…but it’s always there digging the boot in somewhere.

Going on holiday when you have Rheumatoid Arthritis is a serious business. First and foremost, many kinds of holidays are out of the question.

Camping for starters. Sleeping on a thin camp bed would equal not being able to move at all the next day. No microwave, no heat packs…if there are no hot showers, then it’s just pure torture.

Holiday’s aren’t supposed to be torture.

So it’s hotels or cabins. The cabins have to have the aforementioned microwave, so you’re talking 3.5 star at least. That would be about $150 – $200 a night minimum.

There is no cheap holiday when you are chronically ill.

Then you need your heated throw and maybe you need a fridge for your meds. There is no ‘roughing it’ with RA…not because you’re a sook, or you don’t like to (I used to enjoy it) but because it will cripple you if you try. The bed needs to be halfway decent or you won’t move the next day.  You will not enjoy it. It will NOT be a holiday.

There is no holiday from moderate to severe Rheumatoid Arthritis.

There are certain things you need access to. As I said, heat packs, showers, and microwaves are essential. Maybe even a fridge because some medications need to be refrigerated. Mine don’t, and anywhere that has a microwave will have a fridge, anyway. But it’s worth mentioning.

Along with the nsaids, dmards and corticosteroids, I also need to take a range of painkillers along for the ride.

I’m fairly skilled at juggling my meds for the best possible effect. Three days before I go on holiday I up my prednisone to 15mg. This will give me enough energy for the 3 hour drive, and means (during the day at least) my pain is mild to moderate.

Night time is still a bitch for the most part, and that’s when I reach for oxycodone. Slow release first, and if that hasn’t made things bearable, I’ll top it up with the fast acting formulation, that kicks in within 30 minutes. Then I’ll drink a glass of red wine to help it along a little more.

If I can sleep, the next day will be OK. I will wake up in pain, but it will be bearable. I will slowly be able to wake up and start to move. It usually takes about an hour and a half for me to feel human, and join civilisation.

I often feel very guilty on holidays. Especially now that I am single, and I am holidaying with my kids on my own. I am not even close to the person I used to be. I can join in the play with my kids, but then I need to rest. I feel like I am constantly saying ‘OK, back to the cabin to rest’ and then when I have recovered, we can go back to the beach again, or walk to the shops again, or ride scooters.

I’m lucky my kids are now at an age where they are starting to understand. My son is 11 and my daughter is 10. They both still say to me “I wish you didn’t have arthritis. We used to have much more fun before.”

I’m surprised they even remember anymore…it’s been 5 years now. But they do, and they, like me, hope that one day I’ll find the combo of drugs that might kick my rheumatoid into remission.

If I upped my prednisone to 25 mgs, I would only have mild aches and pains. But I would also have high blood pressure, and anxiety and total insomnia. I get these side effects more mildly on 15mg. It’s manageable.

It’s always a balancing act…the lesser of evils.  Right now I’m lucky that the predisone means I am here at all. Without it, I couldn’t take my kids on any kind of holiday.

But just once, I’d like to be able to go somewhere without taking a whole bag full of stuff (heated throw, wheat bags, painkillers, corticosteroids, nsaids, dmards) just to manage my RA.

Just once.

The Perils of Prednisone – Treatments for Rheumatoid Arthritis

Prednisone is a magic bullet.  It is a powerful anti-inflammatory that can make people feel very, very much better in a short period of time.  As little as two or three days.

But there are consequences.  Side effects.  For more about prednisone and its side effects read this.

I have been in pain now for longer than I can remember.  Sometimes it is mild, and is just background noise.  But not often.  And it has never receded to mere discomfort.

And when I say ‘as long as I can remember’ I mean years.  About three years I think.  I’ve had RA for about five years…but in the beginning the pain did go away sometimes.  Those were great days in a lot of ways.  In other ways they just allowed me to indulge my love of denial.

The last three years have involved daily pain.  The pain is always worse at night.  I have moderate to severe RA.  The last nine months have been on the severe end of the spectrum, in regards to pain.  Every single day.  This is why I am trying methotrexate again, even though I have experienced some pretty horrible side effects in the past.

Right now, the pain has gotten to the point where I can no longer cope.  You have no idea how hard that is for me to admit.  I am the most stubborn woman in the world.  And I like to think I am tough.  (And I’m right, damnit!).  But years of ongoing pain, and months of very bad pain, have taken me to the edge of my ability to cope.

Depression is taking hold.  Defeat is possible.  Giving up?  Not an option. So that leaves me to live in a narcotic pain killer haze (oxycodone) or go back onto prednisone.  And stay there for a while.  Long enough to get a break from the pain, and get my head back together.  Dealing with chronic pain is a mental game.

So here are the upsides.   Prednisone works.  It works quickly.  It reduces inflammation fast, so it reduces the pain associated with that inflammation.  It gives you energy.  Energy is not something that people with RA have in spades.  Fatigue is the second most debilitating symptom of RA.  Not tiredness.  Utter exhaustion!

Awesome!  Let’s do it!

Not so fast.  There are side effects.  This is what I have experienced in the past.  First, the headache.  It’s unpleasant.  But it’s better than RA pain.  There’s dizziness as well, and some nausea.  But I feel so much better, less pain, less stiffness, more flexibility that this is worth it.

The improvement is easily measureable.  Instead if lifting ultra light weights in my Power class, I can lift about a third more, comfortably.  In my yoga class I can hold the poses longer and deeper, and I can stretch much further.  And at the end of class, I still have some energy left over.  I recover much quicker as well.  I feel a lot closer to normal.  It is incredibly seductive.

Insomnia starts to be a problem by about day 3.  I’ll lie in bed for hours, waiting for sleep.  Last night I only slept about 4 hours.  This morning, however, my pain is still mild.  When I’m not on prednisone, I’m often kept awake by the sheer pain of rheumatoid arthritis.  Insomnia from prednisone beats pain keeping me awake all night.

I do feel heavy headed and dopey though.  And a little confused.  My memory is poor.  I have to write everything down.  (Yay for my ipad!)  It’s a lot like the brain fog of RA, though…so maybe it’s not even the prednisone.

So now the question is how long to stay on prednisone.  How long a pain holiday can I safely take?  I’ve done many quick tapers, and they don’t end well.  I get severe psychological symptoms – anxiety, depression.  The depression becomes profound as the dose gets lower, and takes a week or two to lift.  Prednisone can induce psychosis – and this has happened to me.  It can also induce bi polar events, or ongoing bipolar disorder.  It is a very serious drug.

So I will taper much slower this time.

Right now, though, it is making me feel a whole lot better.  I’m functioning at about 75% of normal.  My pain is about a 4.  I am not exhausted anymore.  I am having a pain holiday, and I desperately need it.

For now, prednisone is the lesser of evils.  Stay tuned in the days or weeks to come to see when that equation starts to turn.