The truth about living with Rheumatoid Arthritis

#arthritis

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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Things Rheumatoid Arthritis has taught me

RA has been a teacher.  Not my favourite way to learn, I’ll admit.  But I have learned a lot.

I, like many it seems, used to be a Type A, in charge, 25 hours in a day kind of person.  I had a good career, two children, one of whom is on the Austism Spectrum.  And I thought I was a pretty good wife.  I cooked and cleaned and generally took care of stuff.  I helped out at the school, I had time to listen to my friends troubles, and I was happy to help.

And then Rheumatoid Arthritis hit me like a freight train, and left me as a little puddle of goo on the ground.  The kind of thing people step in, and wince with disgust and scrape off their shoe.

Lots of people treated me that way…with disgust.  Disdain.  Disbelief.

They thought I was making up the degree of pain I was in.  The severity of the disease.  Very few bothered to educate themselves.  They didn’t care enough.

That’s people.  They have their own problems.

For me, my whole life changed.  Much as I didn’t want it to, Rheumatoid Arthritis occupied Centre Stage.  It controlled me.  So I had to learn to adapt.  I learned a few other things too:

 

  1. I am very, very strong.
  2. I don’t sweat the small stuff.
  3. A smile helps.  Mine or someone else’s.
  4. I need to be realistic.  Wishing things were different doesn’t help.  It just saps my energy.  So I work with what I’ve got, and make the best of it.
  5. Worrying about things I can’t change will only bring me down.  I will change what can be changed, and I have to accept the rest.  I have to make the best of what I have.
  6. I am luckier than many, many other people.
  7. I need to prioritise.  I have to choose what’s important in every day.  I make mental lists…What MUST be done. What it would be great if I could get done.  And what is just going to have to damn well wait until tomorrow.
  8. What other people think doesn’t matter.  This one was huge for me, but there is no changing other people’s opinions.  Some will always thing I am a malingerer.  Some will never understand.  Some will always make nasty remarks.  Some will always tell me their pain is worse than mine.
  9. Pain and happiness are NOT mutually exclusive.  I have to try and do the things that I enjoy.  There are some things that are now impossible.  Others that I can still do, but not without pain.  Others that I can do on some days, but not others.   I can still enjoy these things.  It’s very, very important to keep doing the things that make me happy, even if I can’t do them the same way I used to.
  10. Patience.  I can’t do it all myself anymore, or at least not all in one day.
  11. How to ask for help.  No wait, I’m still struggling with this…
  12. Who my friends are.  My real friends.   My real friends understand my limitations.  And they still want to spend time with me.  And not just when I am ‘well’.  The people that make me feel guilty for cancelling at the last minute, or saying no to an invitation, or not participating in their sky diving adventure are not friends.
  13. I can do most things that healthy people can do.  But it will take me a lot longer, and it will almost certainly hurt me a lot more.
  14. Doctors don’t know everything.  They are not gods.  They cannot fix every problem.  They can offer options.  The responsibility for my health is still mine.  I make the final decisions.
  15. Accepting my limitations does NOT mean I am giving up.
  16. I still have a lot to offer.  I am still capable of a lot of good.
  17. Did I mention I am very, very strong?

 

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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.

You know you have Rheumatoid Arthritis when…

1.  You know you have Rheumatoid Arthritis when you are too sick to get to work, even though you work at home.

2.  You know you have Rheumatoid Arthritis when the first 4 ‘favourites’ in your GPS navigator are medical specialists.  Your GP/primary  care doc isn’t in the list because you see him so often the car can pretty much drive itself there.

3.  You know you have Rheumatoid Arthritis when all your shoes are flat and slip on.  You don’t own any clothes with fiddly buttons and all your pants are elastic waisted.

4.  You know you have Rheumatoid Arthritis when you still use your electric blanket in the summer.

5.  You know you have Rheumatoid Arthritis when you see the nurse who draws your blood more often than you see the friends you used to have before you got RA.

6.  You know you have Rheumatoid Arthritis when you buy yourself new heat packs for a ‘treat’.

7.  You know you have Rheumatoid Arthritis when you reach your medical expense thresholds in the first month of the financial year.

8.  You know you have Rheumatoid Arthritis when you share your bed with heat packs more often than you share it with your husband.  And you prefer it that way.

9.  You know you have Rheumatoid Arthritis when you finally get fed up and ask your friend who has ‘arthritis’ too, what DMARD she is on, and if she’s tried a biologic, and how she feels about taking low dose chemotherapy.  You compliment her on her stilettos and the lovely rings she’s wearing.  And realise she just doesn’t get it and never will.

10.  You know you have Rheumatoid Arthritis when a PAP test is one of the more pleasant tests/procedures you have to undergo regularly.

11.  You know you have Rheumatoid Arthritis when you have to choose between the potentially deadly effects of the disease or the potentially deadly side effects of the medications to control it.

12.  You know you have Rheumatoid Arthritis when you know that the Spoon theory has nothing to do with eating.

13.  Edit! You know you have Rheumatoid Arthritis when your doc nicknames you ‘holiday house’ because your constant visits fund his vacations.

14.  Edit! You know you have Rheumatoid Arthritis when you have everything from paracetamol, through codeine forte, tramadol…right up to morphine and endone in your medicine kit. And you select from it depending on the pain level today.

Who gets Rheumatoid Arthritis? RA Risk Factors

Rheumatoid Arthritis is an autoimmune disease that causes chronic inflammation of the joints, tendons and ligaments and other organs of the body.  It affects approximately one percent of the population, to varying degrees.  Some people have only mild disease that is easily controlled with simple medications but many people suffer severe pain, fatigue and disability.

The disease affects 3 – 4 times more women than men.  The reasons for this are unclear, but it does implicate hormonal factors, or genetic factors.

Age is also a factor.  Most people develop the disease between the ages of 35 and 50, although it can appear at any age.  Even children can get rheumatoid arthritis, however it is referred to as JRA or Juvenile Rheumatoid Arthritis.  Many children with JRA go on to develop adult RA.

Sometimes RA runs in families, but often there is no family history of autoimmune disease.  Heavy, long term, smoking has been shown to increase the risk of developing Rheumatoid Arthritis.  Environmental factors also play a role, but no one is certain about which combination of factors (environmental, genetic, lifestyle) put together will cause RA in any particular patient.

If you think you may have Rheumatoid Arthritis, you need to be referred to a Rheumatologist for diagnosis and treatment.  Early diagnosis is key to preventing long term disability.