The truth about living with Rheumatoid Arthritis

#medications for rheumatoid arthritis

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 and the antibiotic protocol – minocycline

Today I started taking antibiotics for my Rheumatoid Arthritis.  I have previously discussed this with my rheumatologist.  He says he has seen it work in a patient with very mild rheumatoid.  Although he didn’t say it, I got the impression he felt that this patient had self-limiting disease, and the antibiotics had nothing to do with it.

It’s not a well-accepted therapy here in Australia.

He was not averse to me trying, but he felt that it was very unlikely that antibiotics would help someone with moderate to severe Rheumatoid Arthritis.

The American College of Rheumatology lists minocycline as a DMARD  .  Accepted theory is that minocycline has a mild anti-inflammatory effect.  Any improvement in symptoms comes from this anti-inflammatory property, and not from the antibiotic effect of the drug.  Minocycline is considered a DMARD, albeit a mild one.

However, the Roadback Foundation    has a completely different point of view.  The theory there is that Rheumatoid Arthritis is caused by mycoplasma bacteria.  Tetracycline antibiotics, like minocycline, kill the bacteria and thereby put Rheumatoid Arthritis into remission.

There are enough case studies on their website to make me pay attention.

There have been several studies that do conclude that minocycline improves RA symptoms.  Again, though, all the studies I found state that it only helps in mild disease.  When I see other people’s gnarled and damaged hands, I think my disease is mild.  When I experience a full body mega flare, I realise it is not.

My rheumatologist classifies me as moderate to severe. It’s hard to know.

There are also studies in mouse models that show mycoplasma can induce Rheumatiod Arthritis in mice.  Mice is a long way from people though.

Then there are also plenty of studies that show absolutely no relationship between mycoplasma and Rheumatoid Arthritis.

The studies’ results are so inconclusive and poles apart, that I’m not going to post links.  It’s not that relevant to me, anyway.  Anecdotal evidence is enough…at this point, I have no other treatment options and nothing to lose.  Compared to Imuran and methotrexate, an antibiotic sounds pretty benign.

So what the hell.  I will give it shot.

Minocycline is slow acting.  Three months at least before I can decide if it’s helping.  And there are several protocols.

I am going with the Monday-Wednesday-Friday option.  100mg per day, 50 mg morning and night, on Mondays, Wednesdays and Fridays.

I don’t feel there’s much to lose by trying.  I keep reading, researching, hoping.  I’ve tried many, many treatments.  Fingers crossed, once again.

 

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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.

What does a Rheumatoid Arthritis flare feel like?

what does a rheumatoid arthritis flare feel like

The thing to understand about inflammatory arthritis pain is that it’s always there.  It’s not like muscle pain that happens when you use the muscle, or a broken bone that hurts when you use the limb.  Arthritis pain is constant.  There’s no comfy position to get into so that it doesn’t hurt.

I have pain every day.  Sometimes it’s mild, sometimes not so much.  No matter what, I try to put a smile on my face and deal with it.  Why?  Because there isn’t really a choice.

To some people, I would be in a permanent flare.  I don’t really look at it that way.  I think most people with RA have a baseline level of pain.  For some, this is pain free.  For some, this is mild, occasional aches.  For some, this is daily aches and pains, from mild to moderate to severe.

Severe pain all day every day is what I would call perma-flare, and there are people who are forced to go through life this way.

My baseline is mild to moderate daily pain in various joints.  Usually not all at once, and the worst affected joints move around.  Some days it’s my hands and feet, some days it’s my neck and hips, some days my lower back.

Today it’s my ribs and my jaw that are giving me the most trouble.

Yesterday it was my hands and feet – ‘classic’ rheumatoid arthritis symptoms.  Tomorrow, who knows?

And then there are flares.  Full body mega flares I call them.

So what does a rheumatoid arthritis flare feel like?

Rheumatoid Arthritis guy put it like this:

Imagine having all your joints slowly pulled apart. Now, imagine not having to imagine it. This is rheumatoid arthritis. —RA Guy

I think that sounds pretty accurate.

Flares hurt a lot.

For me there is dull but strong pain in my wrists and ankles.  My lower back feels like someone is twisting a knife in it.  My knees ache, and then suddenly feel like someone has stabbed a screwdriver into them.  My ribs squeeze my lungs, so that it’s hard to breathe.  It feels like maybe I’m having a heart attack, or someone is crushing my chest.  There is no way to sit, no way to lie down, there is no position that eases the rib pain.  There is no way I can wear a bra!

Knowing that it is my ribs (costochondritis) helps with the anxiety.  I know I’m NOT having a heart attack, no matter how bad if feels.  It’s just pain.  Empty, pointless pain.

My jaw is throbs (TMJ disorder). It feels like the worst earache ever.  But my ears have been checked…there is no infection.  It’s referred pain from the jaw.  I have a constant headache radiating up from my jaw.  Opening my mouth hurts.  Closing again it hurts.  Chewing is not an option.  Not that I have an appetite anyway.  People tell me I slur my words…that’s because I am trying to move my jaw as little as possible.  Smiling hurts.  I try to smile anyway.  I may as well.

Sometimes out of the blue my big toes will just explode.  Big toe…hahahaha…how bad can that be?  Yeah, pretty bad!  It is searing pain that will stop you dead in your tracks.  Not so funny.  Your big toe helps with your balance and takes about 40% of the weight of all the toes.  It’s pretty important.  When it’s flaring, if it doesn’t make you scream aloud, it sure makes you walk funny.

And now onto my hips.  Again, there is no way to lie, no way to sit…hips, lower back, it all merges together.  The tendons also become inflamed (enthesitis), so moving hurts more.

My shoulders ache…it feels like there are lead weights on them.  Some days I can’t raise my arm very high.  Some days I can, but its excruciating.  Some days it just hurts a bit.  Because my shoulders are inflamed, out of alignment…something…the muscles all down my back spasm.  Massage helps temporarily.  Some days it hurts too much to be touched.

Then there are my eyes.  I often wake up with red, raw, dry, painful eyes.  Sometimes I have to sit in a darkened room until it subsides.  This is most probably iritis (anterior uveitis).

Inflammatory arthritis pain is constant.  It doesn’t quit.  It wears you down.  I think the constant pain is the cause most of the fatigue I experience…most of my brain is trying to block out severe pain and keep functioning. That’s exhausting.

So what can be done?  Prednisone burst.  Heat packs.  Topical creams and gels.  Hot showers. Extra nsaids, analgesics.  Rest.

A true full body mega flare?  Nothing, really, can be done.  Nothing touches it.  You just have to hope it doesn’t last long.  Mine are improving.  Lately they only last 24 hours or so.  Recently they were lasting 4 days or so.  The longest one lasted 4 months.  This is child’s play to what I’ve read some people experience.  Some people are in full body mega flare all the time.

I don’t know how they cope.  They have to, I guess.  Because there isn’t really a choice.

 

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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.