The truth about living with Rheumatoid Arthritis

#rheumatoid arthritis medications

Rheumatoid Arthritis – do I qualify for Biological drugs now?

rheumatoid arthritis infusions

A few posts ago I talked about my latest appointment with my rheumatologist, where he effectively told me he would never be able to get me on biological treatments, and I felt he washed his hands of me, and referred me on to the pain clinic, for the pain management docs to handle.

Well, I have received a letter from the hospital.  Telling me I have an appointment at the Rheumatology Biological Outpatient Clinic.

Biological Clinic.

All my previous appointments have been at the Adult Early Onset Arthritis Rheumatology Clinic.

Subtle but fairly important difference! It would seem that my rheumy has had a change of heart? So I have been a compliant patient and progressed my referral to the pain clinic.  I have NOT been able to reduce my prednisone – in fact I increased it to cope with the School Holidays.

The holidays are now over, so I will enjoy a few more days of less pain and then start to taper down.  I have no desire to taper down – I know that increased pain awaits, and quite frankly the pain is bad enough as it is!

But. Rheumy is trying to help me again.  So I will do as he says.

And start doing my research in earnest about the biological drugs and their true efficacy.  I have read a few posts on RA Warrior which state that Biologicals are not proving to be as effective in the real population, as they are in clinical trials.  Several readers of this blog have told me the same thing.

But then again I read plenty of people who say that Humira has changed their life.  Or that Enbrel gave them their life back. If there is any possibility of no longer having to live with this pain, I want to take it.  Although I am a quite afraid of the potential side effects, having just spent another three days in severe, completely incapacitating pain, I know I need to try whatever options are available.

The question is, are they available?  I am getting ahead of myself here.  Rheumy said ‘no’ to biological drugs for me.  The letter could be a misprint…a mistake.  He may still be expecting me to take Arava.

The appointment is not until 30 January 2013.  Nearly 4 months away. A long time to wait when my RA is active and painful.

I have an appointment with my third opinion Rheumatologist on the 14th of November.  Just over a month away.  I am looking forward to hearing what she has to say.  A month is not so long to wait.

However it seems like life with Rheumatoid Arthritis is always about waiting.

Waiting for the next appointment.

Waiting for the current treatment to start working.

Waiting for the pain to get less.

Waiting for life to get better.

Waiting, waiting, waiting…

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Rheumatoid Arthritis – what do you do when you can’t take the medications

rheumatoid arthritis medications

What if you can’t take Rheumatoid Arthritis medications?

I haven’t been online for nearly a week because I’ve been very unwell.  Only it hasn’t been RA that has knocked me down this time – it was an adverse reaction to my meds….methotrexate and prednisone.

As a result I’m going off all my meds.  (Doctor approved).  Except maybe plaquenil…it’s so innocuous it hasn’t done any harm.  Don’t think it’s helped at all either though.

Anyway, today is meth day and I’m not taking it.  I am never taking methotrexate again.  I was so determined to tolerate this drug this time.  But after my fourth attempt – and managing for six weeks – it’s over.   Some people can’t tolerate methotrexate.  I am one of them.

The really sad thing is I think it was helping my joint pain.  That’s one of the reasons I was trying so hard to persevere.  The other reason is that, being in Australia, if I can’t tolerate methotrexate or officially ‘fail’ methotrexate (3months at 20mg or more) there are no other treatment options.

Or that’s what my rheumatologist told me.  I know that some rheumatologists ‘fudge’ things so that their patients can get the expensive biologics.  Maybe I will try to find one of those.

Or maybe I am now so afraid of drugs and their adverse effects that I don’t even want to go there.

I am tapering off prednisone as quickly as is safe.  I’m at 6mg right now.  I’ll taper down by a 1mg every five days.  I’ve been on prednisone about 16 weeks now, so I can’t taper any faster.  Even though everyone agrees I need to get off this drug now and forever.

So in about 4 weeks I will be drug free.  I have stopped my Naprosyn.  I might still take plaquenil.  I haven’t fully decided.

As I have been tapering off prednisone, the pain has been increasing.  You will remember that the reason I went back onto prednisone, even though I swore I would never take it again, was because the pain got so bad, 24/7, excruciating, unable to function, that I needed some relief.  I was looking at walking sticks and not able to drive safely.

That was also why I agreed to try methotrexate one more time.  It was the only option. Or face a lifetime of pain.

My own determination to beat this drug was my undoing – I knew it wasn’t doing me any good, and I continued to take it.  I should not have.

It’s a week since I last took it, and I am starting to feel better.  I should take it tonight.  I will not.

I am going to find out what my baseline is now.  After five years of trying every medication under the sun and feeling a bit better, and then a whole lot worse, then a bit better, then a whole lot worse…rinse and repeat…I am now going to see what ‘normal’ for me is.  How much pain I truly have to live with.

As I’ve said before, I don’t have a lot of joint damage.  Or not visible on x-ray, anyway.  My fingers only swell sometimes, and there’s only a very little deviation.  My feet are the same.  I can see the changes in them, but they are definitely not severe.  My knees swell sometimes.  The pain in my hips, shoulders, elbows and ribs is completely invisible.  My bones pop and crack…but that’s not damage.  That’s just noise.

So I am now going to see what day to day life is like unmedicated.  I may have no option but to look at alternative therapies, diet, herbs, I don’t know what else.

I don’t recommend this.  My doctors agree that I need to go off all medications.  I am not saying anyone else should.  I am actually a bit scared of what’s going to happen over the coming weeks. I know I need medication.  But I also know that my body is not tolerating the heavy duty drugs.  So I need to ‘detox’ for a while.  And then, in consultation with my doctors, decide what to do next.  I see my rheumatologist in six weeks.  By then I will have been prednisone free for 2 weeks, and methotrexate free for 6 weeks.  I stopped taking Naprosyn six weeks ago, because my pain levels had improved so much I thought I would try to go without it.

So no more meds.  I don’t have a choice and I’ll document how bad “bad” gets here.  If you have any non-conventional medicine treatments that have helped you, please comment and let me know.

I am already taking fish oil and vitamin D.  I am going to exercise as much as is possible.  I can already feel that there are many exercises in the gym that are off limits from here on in.  The pain is increasing.  My grip strength is decreasing.  The distance I can walk is decreasing.

Wish me luck.

Rheumatoid Arthritis and prednisone – there is no cure for Rheumatoid Arthritis

Prednisone is NOT a cure for Rheumatoid arthritis.

There is no cure for rheumatoid arthritis.  There are treatments.  There are ways to manage the disease.  There are therapies to manage the pain.  There is no cure.

Recently I’ve been posting on my personal page about the physically active things I’ve been doing.  Things like running.  Doing a Step class.  Hitting the gym often, sometimes doing two classes a day.  I’ve been posting this stuff because it honestly makes me so happy to be able to do these things!  It is bliss!  It is as close to normal as I have felt in five years.  I haven’t had a knock-me-on-my-butt-full-body-mega-flare in nearly three weeks.

That is the longest I have gone without a mega flare.  I’ve had twinges.  I’ve had aches.  I’ve had one or two moderate pain days.  But I haven’t had a severe pain day where I can’t get up off the couch.

In five years that has never happened before.

So I think it’s understandable that I’m feeling a bit of euphoria about my current physical state.  I know it can’t last…I am tapering down on the prednisone and with each milligram less, I feel the pain increasing.  I know what is waiting for me when I am off prednisone, and so I am making the most of this time.

The interesting thing is the comments I have been getting from people.  Some of whom should know better.  Some of whom are genuinely happy, if misguided.  Some of whom have darker motives.

People keep telling me how happy they are that I am cured.

*dumbstruck silence*

I am NOT cured.  Prednisone is NOT a cure.  It is a reprieve.  A pain holiday.  A short, and very necesary break from the pain, stiffness and fatigue of rheumatoid arthritis.

It is not a cure.

Prednisone means I can run and do step classes.  It also gives me a resting heart rate of about 95 bpm, anxiety, insomnia, and shoots my blood pressure too high.  Long term it will rot my bones and give me osteoporosis.  It will mess with my blood sugar levels and cause diabetes.  It causes cushings syndrome.  It can cause depression and other psychiatric symptoms.  The way my doctor put it was pretty succinct…’every bad thing a drug can do to a body, prednisone will do’. But when it also takes severe pain down to mild pain, and allows me to live a relatively normal life, it is oh so easy to forget that.  It is oh so tempting to just forget that.

Anyone who has a moderate to severe form of inflammatory arthritis has probably been on prednisone at some point.  It’s often used to get a bad flare under control.  It’s also used long term, but this is a last resort, for those that don’t respond to anything else.

So far that has been me – prednisone is the only thing that can get me close to normal.  I am on a bunch of other drugs.  Most notably methotrexate…I’m waiting for that to work.  I’m only just at a therapeutic dose now, however.  So IF it helps, I might start to feel some improvements in about 6 weeks.  If it helps.

It’s all so slow.  In the meantime, I need some prednisone to get me through a very tough patch.  I have been in pain for five years.  I need a holiday.

I am not cured.

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.

DMARD choices – Management of Rheumatoid Arthritis

There are many medications prescribed for Rheumatoid Arthritis.  No two cases are exactly the same, and the treatment approach will depend on the severity of symptoms.  Most people will need to try several different medications, or combinations of medications to find a cocktail that works best for them.

The most important class of medications in the treatment of Rheumatoid arthritis are DMARDs (Disease Modifying Anti-Rheumatics) and bDMARDs (Biological Disease Modifying Anti-Rheumatics).  bDMARDs are very expensive medications, and in Australia there is a strict criteria and you will need to try and fail several DMARDs before being allowed to try bDMARDs The chart below is taken from the Australian Prescriber website, and lays out the criteria that your rheumatologist will use to choose the appropriate medication.

Management of Rheumatoid Arthritis – Criteria for selecting a DMARD

 

Management of Rheumatoid Arthritis