The truth about living with Rheumatoid Arthritis

#dmards

Onwards to Arava (leflunomide) to treat my Rheumatoid Arthritis

I went to my new rheumatologist yesterday.   And I survived!

I always get very stressed before seeing a new doctor.  Starting from the beginning, explaining everything, terrified I’ll forget something important, or say something wrong that gives the wrong impression…once a doc has formed an opinion, it’s very hard to shift.

And many, many docs come with the pre-existing opinion that unless your CRP is through the roof, its minor pain that can be cured with an anti-depressant.

My new rheumy is not like that at all.  She looked at my blood work.  She felt my joints.   She looked at my scans.

She said it was quite obvious that I have severe and active Rheumatoid Arthritis.  She seemed quite surprised that anyone could possibly come to any other conclusion…the scans say it all, even if the blood work doesn’t.

She listened to my stories, and I could tell she believed me.  She understood that I am the kind of person that hides my pain, and that I am far too proud to use my walking stick at places where I might run into people I know.  She understood when I explained to her that I was an exercise junkie before I got sick, and I have always worked out my problems in the gym.  So that’s what I still try to do now.  It does NOT mean I am not in pain, or that my rheumatoid arthritis is mild.

She understood that when you live with pain every day, you will endure a little more to be able to do the things that you love…the things that bring you some happiness.

It was quite cathartic to talk it through.  And to have someone listen.  And to have someone care.

So when she prescribed Arava (leflunomide) I agreed to take it.  She explained it was no more likely than any biological to cause the intense emotional side effects that methotrexate caused.  She also explained that there is a washout procedure that can remove the drug from your body quickly, if side effects are severe.

She told me if I take Arava for six months, and it doesn’t help, then she’ll have no problem putting me on a TNF blocker.  But Arava needs to be tried first.

She was so reasonable, so logical, and yet still very empathic, that I agreed, where I have refused to take that drug before.

She allayed my fears, and I trust that she will be there if things go badly.  Its amazing what an empathic approach can achieve.

So I filled the prescription and took my first dose last night.

And now?  Now we wait…

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.

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…

Rheumatoid arthritis treatments – adverse drug reactions

Drugs can be amazing, life restoring, magical things.  With rheumatoid arthritis, and similar diseases, drug treatments can give people their lives back.  The right combination of DMARDS can put them in remission and allow them to do the things they used to do.  Return them to whole.

And then sometimes drugs can kill you.  Or almost.

Serious drug reactions are rare, we’re told.  But they do happen.  And when they happen to you, they feel much more than serious.

Recently I tried a new drug.  Fairly innocuous compared to some of the other drugs I’ve been on…and here’s the rub – I’d taken it before.  But not along with the other four rheumatoid arthritis drugs I was taking this time.  However it’s really common for us inflammatory arthritis types to be on several DMARDS, an anti-inflammatory, some pain meds, maybe even an anti-depressant.

So sometimes maybe it’s the combination that does the damage.  It’s just not possible to study every possible combination of drugs…so adverse reactions can and do happen.  Sometimes they are very serious.  Sometimes very serious indeed.  I am purposefully not saying which drugs or combination of drugs I was taking.  Truth be told, no one knows whether it was the new drug, or the combination that caused the reaction.  I don’t want to scare people off a drug that may be the lifesaver for them.  The drug risk/benefit equation is one we all have to weigh up for ourselves, as best we can.

With me, whatever it was, it was scary.  I became very, very sick.  I couldn’t eat.  Couldn’t keep water down.  I developed a chest infection, and started coughing up blood.  I was so tired I literally couldn’t get out of bed.  Everything stopped.  My stomach ached, my head was exploding…on the upside my joints hurt less.  Or maybe too much else was hurting for me to notice the joint pain.

The worst thing was the chest pain.  The scariest part.  Is it my heart?  Or is it just my ribs are so inflamed that they are squeezing the breath out of me?  Who knows?  I’ll need an ECG to find out if my heart is OK.  Great!  Another expensive test.  But I have to check…I know I’m not having a heart attack, but pericarditis?  Pleurisy?  Or costochodritis?  All are pretty common for people like me.  All present with these symptoms.

Anyway, since I stopped that drug, I am improving.  Nausea improved, dizziness improved, I am eating solids, and getting out of bed. Of course my kids were terrified, and my husband is sick and tired of this too.  How much longer will he tolerate it?  We are already separated.  In one respect it’s fair for me to call on him when I need help with the kids.  In another, its not.  Not at all.

But things are *improving*.  And I’m feeling like it’s time to try some alternative treatments.  As I look back over my long history of trialling different drugs, I’ m not sure that any have helped that much, and I’m very, very sure that some have made things considerably worse.

So I’m going to see what else is out there.  Try a gluten free diet again.  Force myself to do yoga and lift light weights and take fish oil supplements.  I’ve recently read some studies on curcumin that are promising.

Ofcourse ‘natural’ or ‘alternative’ doesn’t mean ‘harmless’.  Sometimes adverse reactions are caused by the supplements we take.  Or the supplements combined with the medications.  The way I see it, anything that can have a beneficial effect (that isn’t a placebo) can also have an adverse effect.  It’s a crap shoot.  We do our research.  We weigh up the potential benefits versus the potential side effects.

And then we cross our fingers and hope that this treatment will help, not hurt.

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