The truth about living with Rheumatoid Arthritis

#rheumatoid arthritis treatments

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 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 – 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 treating the patient like a person

I saw rheumy last Friday.  I have been feeling pretty crappy, so it’s taken me a few days to get around to this post.  It wasn’t the best appointment…or at least it didn’t start that way.

It got me thinking about the importance of a collaborative approach to treating Rheumatoid Arthritis, or any kind of inflammatory arthritis.  Heck, any kind of chronic condition.

Normally a ‘collaborative approach’ means ‘lots of specialists who are supposed to talk but never do’.  What I mean is collaboration between the patient and the rheumatologist.  A partnership.

My usual rheumy was called away to an emergency in the hospital.  So I saw the registrar.  I’d never met her before, so she gave me  the 30 second history treatment…questioned everything I was doing and made remission seem like a very simple thing to achieve.

She criticised my methotrexate dose, my prednisione dose, my Naprosyn dose.  Lectured me on the importance of exercise, and didn’t stop to listen when I explained that I DO exercise, and basically treated me like an object that she needed to colour by numbers.

She was young.  She was going by the textbook – not the patient.

She felt my joints, felt the bogginess, marvelled at the lack of swelling – I told her I don’t often have swelling – and questioned me on the level of pain.  When I told her I’d been taking 15mg of prednisone for the last two months she launched into a lecture on prednisone and how terrible it is.

I know.  I take it every day. I know what a terrible drug it is.  But it sure does work.  And I needed the pain relief.  I had to make a hard choice.

Then I couldn’t take it anymore.  I gave her a lecture back. Very politely, but very firmly.

Prednisone is essential right now.  Until I took the prednisone I didn’t realise how much pain I was dealing with every day.  It sneaks up on you, gets a little more, and a little more, until it’s actually unbearable.  But you have to bear it.  Life goes on.  There is no one to take the pain for me.  Or even take on some of my load to make my life easier.  I am alone.

So I am very good at prioritising. I know what MUST be done to keep my kids safe and healthy and (mostly) happy.  Everything else is gravy.

I stopped her dead and explained just how bad the pain had become.  I told her very frankly what it felt like, and what I was and wasn’t capable of.  And then something strange happened.

She apologised.

And slowed down, and started again.

She stopped telling me I need to up my methotrexate to 15mg immediately.  (I refused to do that, anyway – 10mg is screwing me up enough already!)

 

She read back over her notes and thought for a minute.  She looked back over my file, where my significant problems with methotrexate are well documented, and acknowledged my desire NOT to up methotrexate for a long while – I need a break from side effects.

She suggested I add in salazopyrin in a few weeks when my side effects have stabilised on methotrexate.  She wrote down a slow, long taper for the prednisone instead of the sharp quick ‘you have to get off this stuff’ taper she originally wrote down.

I guess she had a light bulb moment and suddenly understood that after dealing with RA for five years, and all the meds and the pain, I’m worth consulting in my own treatment plan.  I have studied every treatment protocol, I understand what each drug does, and what it should do, and what it shouldn’t.  I accept the risks and the side effects, unless the toll is too high, and then I refuse.  This is my choice.  As I often say, there are no longer any good choices on the table.  The mild drugs like plaquenil and simple nsaids don’t do the job.

It is my body, and my life and it’s in my best interests to be informed, and proactive.  And it’s in my treatment provider’s best interest to respect that, and respect me, and discuss options with me, and talk to me, not just talk at me.

We both need to view it as a partnership.  But ultimately I am the one who has to live with the consequences of these treatment decisions.  And some of the consequences can be heavy, these are some powerful medications we’re talking about.  But the consequences of NOT taking these drugs can be just as severe.  It’s a crap shoot.  But because I am the one that needs to live with it, I am the one who has the final say.

Ultimately it was a good appointment – but it took a lot of bridging of the communication gap.

Which really highlights the benefits of seeing a regular rheumatologist, one whom you can get to know, and they can get to know you, as well as gets to know your disease.  I know I am not ‘textbook’ case.  I know I experience side effects that most people don’t experience at such low doses of methotrexate.  I also know that I am a well informed patient, I have researched my disease, and I have suffered it for five years.  I am proactive in my treatment.  I look after my general health, I exercise even when it feels too hard, too painful.  Because I know I need to do all this if I am to have any hope of a normal life again.

And my regular rheumy knows this too.  He knows not to lecture me, because he knows I am already doing all I can, and I don’t need telling.  My health is my biggest incentive – and I work hard. New registrar rheumy learnt a lesson in listening, and taking a moment to assess a patients personality and state of mind.  It only really took her an extra five minutes.

I go back in 10 weeks.  I hope my regular rheumy is there.  I need to see him.  He knows me best, and I trust him completely.  But if I see new registrar rheumy chick again, I will be OK with it.  We will continue to build a relationship – because in long term, chronic conditions, there needs to be cooperation between the treatment provider and the patient.  There needs to be communication and mutual respect.   There needs to be an honest partnership, and there needs to be understanding of the disease, and the person.  They are not one and the same.

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.