The truth about living with Rheumatoid Arthritis

#medications

Autoimmune and allergic disease and my daily routine

We all have a morning routine.  Most women’s involves hair and makeup, but mine’s a little different.  I’m very set in my ways, mine is almost exactly the same every morning.

I wake up.  I assess what hurts most, just a habit.  Usually it’s my spine, hips, shoulders, wrists and feet.  Often when I stand up and weight bear, that assessment changes.

I hobble to the kitchen and boil the kettle for coffee.  I like a nice, strong coffee in the morning.  I have had to adapt to not being able to have milk anymore – dairy allergy. Rice milk is watery and insipid, but it’s better than black coffee.

I take my pain medications – Targin 10mg if my pain is a 6, 20mg if my pain is higher than that, and 10mg of Oxynorm.  Targin is a slow release form of oxycodone and oxynorm is immediate release oxycodone. Then I hobble back to the couch to wait for those to kick in.

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Rheumatoid Arthritics and Biologicals (bDMARDs)…my rheumatologist is applying for Enbrel!

sick-enough-for-biologicalsThe good news is, that rheumy has decided I am sick enough for biologicals.

The Bad news is that rheumy has decided that I am sick enough for biologicals…LOL

At my appointment today I held nothing back.  I told her exactly how rough life has been lately.  How much pain, how much disability, how much fatigue I am experiencing now that I am down to 10mg of Prednisolone.

This is very hard for me to admit.  I know it’s very hard for many of us.

She still holds out some hope for Arava, but now that I’ve had to reduce my dose of leflunomide to 10mg, due to elevated liver enzymes, it could take up to six months to see benefit.

I have been taking it for four months.  The idea of living like this for another two months, hoping for an Arava miracle, does not appeal.

I have been waiting and waiting and waiting.

Waiting for something to work for me.  Five long years of daily pain.  I have to admit, I am luckier than some…some days are only mild.  Most days are moderate.  Some days are severe, complete incapacitating.  What I call full body mega flares.  Or a knockdown day.

I think it’s fair to say that at this point I am experiencing some depression and loss of hope!

So we talked through my entire history, all the medications…plaquenil, sulfasalazine, methotrexate, imuran and pretty much every nsaid under the sun. Several years of ‘just give it another 3-6 months to work’.

Remembering that I have only been seeing new Rheumy for a few months.  I saw Old Rheumy for five years.  And Old Rheumy is a good rheumatologist.  He is just incredibly overworked in a highly stretched Australian Public health system.  Anyway, that’s too complicated and political to get into here.

New Rheumy listened.  And she is a really sympathetic doc.  She is honest, and open about her reasoning, and very good at explaining the facts in a non-emotional, but still caring, way.

And then she started to explain the criteria for biological drugs to me.  And why I don’t qualify.

As we talked it through some more, I was able to (very respectfully) ask questions, and give her timelines and facts which showed that I do in fact qualify.  Or I just *might*.

And then she said she would ‘just give it a try’ and put in an application, and see what happened.  I nearly cried.  As I’ve said before, I’m not a big crier.  But I felt teary.  I tried to hide it.  I didn’t want her to think I was nuts!  But it means that much to me.

The criteria are basically this.

You need to have severe, active rheumatoid arthritis.

You need an active joint count of at least 20 active (swollen and tender) joints.  OR at least four major active joints: elbow, wrist, knee, ankle, shoulder and/or hip.  Easy as.

You need to have failed a six month intensive treatment with a minimum of two DMARDs (at the same time)  AND have failed methotrexate at 20mg.

This is awkward. I have failed methotrexate convincingly at 10mg.  My body cannot tolerate a higher dose than that.

However, I have taken plaquenil (a very mild DMARD) with sulfasalazine, plaquenil with Imuran, plaquenil with methotrexate (for more than three months, but only at 10mg) and plaquenil with Arava for four months.  So I can pass this criteria if they accept that I cannot tolerate methotrexate.

You need an elevated CRP or ESR.  My CRP has only been raised high enough once.  My ESR has been elevated a few times…but it’s not right now.  Last time it was elevated, I had been feeling better than I had in months.  It’s a problem for many people.  Up to 30% of people have completely normal inflammatory markers, and yet have active, severe rheumatoid arthritis.  Go figure.

So you see it’s a little dicey.  My bone scans and ultrasounds which show active inflammation do not count to medicare.  I believe this is very wrong.

But these are the rules.  Will I pass the criteria?  I don’t know.

For all I know it might come down to the mood of the person who assesses my application on the day.

But as rheumy said, we can only try.

And its worth noting, that if I hadn’t educated myself on the critieria, I would not have been able to argue my case with my rheumatologist.  While getting this information was so difficult, I almost felt it is purposefully *hidden*, I did find the information, and I did use it to my advantage.  An example of knowledge is power, and we all need to educate ourselves on our illness, as well as potential treatments, and the pathways to those treatment options.

And in the meantime, I have hope again.  The depression has lifted.  A reprieve, if you will.

And I wait.

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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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.

Rheumatoid Arthritis and life with no first line DMARDS

It has been two weeks since I last took methotrexate and life has gone steadily downhill.  The pain is worse.  I am not sleeping well.  I wake several times in the night and about three nights a week I lie awake from 2am to 5am because the pain doesn’t allow me to sleep.  And that’s after taking oxycodone.  At around 5am exhaustion takes over, until my alarm goes off at 6:30am.

So I would say that methotrexate definitely does help my symptoms, by about 30-40%.  Enough to notice…enough to make a severe pain day into a moderate pain day…a moderate pain day into a mild pain day.   Which is a shame, because I can’t take the stuff.  The side effects are too terrible.

Three days ago I could still tolerate the pain and go for a slow jog.  I could also go to the gym and do my usual workouts –  Yoga, Pump and Spin.  I wasn’t training as hard as a few weeks ago, but training is training, and it still gives me benefits even if it’s light.

Today I went to the gym and I couldn’t finish the class.  It just hurt too much.  My hands couldn’t grip the weights.  My knees and ankles screamed on the squats.  There was lots of oblique work, but I couldn’t twist my torso.  My hips felt seized, or is it my lower back?  SI Joint?  But I couldn’t twist without it feeling like knives stabbing me through the hips and lower back area.

But worse is the weakness.  My hips actually felt like they were collapsing…so I stopped.  (Duh! I hear you scream J )

It’s hard to walk out of a class half way.  But it’s worse to lie in the middle of the floor and have everyone have to step over you…

Sad attempt at humour…

Anyway  I was hoping that somehow I would be able to function without heavy duty DMARDS.  Like maybe, over time, I had improved and now I don’t need these meds anymore.  I know, ridiculous optimist.

But there’s always hope, right?

Not so much…

My rheumatoid arthritis is completely out of control.  It has been for years.  I am completely at its mercy, though I pretend that I am not.  I have a very high pain tolerance, because pushing through the pain is the only way I can have any kind of life.  I push myself in the gym because I know there are many benefits of exercise.  I push myself to try and keep working, even if I am not making any money, because I need to feel like I am still skilled and capable and worthwhile.  And I laugh and smile often, because a life of misery is no life at all.

The problem is there are no more drug options for me.  I have tried all the DMARDS I am eligible for under the Australian PBS.  There are other treatments, but they are expensive, and I don’t qualify.  One rheumatologist suggested I become independently wealthy and then come back and see him again.  He said until then, there was nothing he could do for me.

You can imagine what I wanted to say to him at that moment.  But I needed his help so I smiled and nodded.

But this is the thing.  The Australian health system has very strict rules about who ‘qualifies’ for biological DMARDs.  I don’t meet the criteria.  Not now, and I probably never will.  There are many, many other people like me.  And there are rheumatologists who bend the rules.

I need to find one of those.

I will explain the system in my next post.  Because it’s truly appalling that the Australian government is happy for people to live with excruciating pain, risk permanent joint damage and a life of disability because these drugs are too expensive.  Surely it’s more expensive to have people like me on disability support, 100% subsidising my (much cheaper admittedly) medications?  Would it not be better to try everything to get me into remission so that I can work, pay tax and contribute to the government coffers?

Apparently not…