The truth about living with Rheumatoid Arthritis


Rheumatoid Arthritis and methotrexate and lung disease

I have been having problems catching my breath for a while now.  I’ve mentioned it to doctors, various doctors.  I don’t have a dedicated lung doctor (pulmonologist) so as is often the case when you’re speaking to a specialist about something that is not their actual specialty, they find it easy to brush it off and ignore me.

Over the last few weeks I have found the breathlessness bad enough to make cardiovascular exercise impossible. I get light headed and dizzy and my chest feels tight. I can’t get enough air, I feel like I may faint.  Not cool in the gym. Not cool anywhere, really.

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Methotrexate…yes it really does that

Last night I took my methotrexate.  0.8mg injected, the equivalent of 20mg tablets.  Injections are better absorbed, however, and do give me less in the way of side effects. Less nausea, less fatigue, less depression.

Depression is the one I care about. Nausea and fatigue I pretty much accepted as a daily part of life years ago.

Depression I can do without.

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Rheumatologist appointment number 894,503 or back to Orencia

It was great to see my rheumy and actually give her good news.  Naturally the messages I left with the receptionist bore no resemblance to the message she received.  She had been told that I was 100% better and didn’t need any more medication.

Um.  No.

Being smarter than her receptionist, my rheumatologist took a while to get around to making an appointment for me, but she DID make an appointment to see me.

She wasn’t surprised that I was not ‘100% better’ as the message stated.  She asked me what I meant by I didn’t want any more medication.

I told her the message was all wrong and how about we start at the beginning.  Which is:

Injectable methotrexate has given me 40-50% improvement.  I have 3 or 4 days a week where I have 5 or 6 hours of the day where I am functional, pain managed, fatigue present, but manageable.

I have about 3 knock down days still, where either severe pain in all my joints or brick wall fatigue keep me home and one the couch.

I take between 40mg and 100mg of oxycodone every day.

But I just tapered down to 11mg of prednisone. And though I can already feel the drop (more fatigue, more pain), usually I am close to comatose on this little prednisone.  This is the lowest dose I have been on prednisone, and not been hospitalised, in at least 3 years.

So this does represent something of a miracle for me.

And I told her I was so incredibly glad to be able to give her some GOOD news for a change.  And I could see she was truly happy to hear it. I’ve always felt she gets emotionally involved with her patients. With every drug failure, she seemed to take it so personally.  She is possibly too empathic for a doctor.  I’m sure she carries a lot of people’s pain.  And maybe sometimes she has to pull back from that, as she did with me for the last few weeks.

She was thrilled the methotrexate was working having such a pronounced effect. She asked me if I thought 7.5mg of prednisone was realistic to try and taper too.  I said I am committed to trying.

My neurologist has given me the all clear to go back on biologicals, so she suggested that we give Orencia one more chance.

I agreed.

For many reasons.  Firstly, I am on the equivalent of 20mg of methotrexate now.  It has given me 40-50% improvement.   Orencia gave me 20-30% improvement.  What if both together they gave me 60-80% improvement?  My life would be very different!  Secondly Orencia has been shown to work much better in combination with methotrexate.  And thirdly the only serious side effect I had from Orencia was high blood pressure.  The high cholesterol and high blood sugar was blamed on prednisone.  They have normalised since I have been off Orencia, but I will have monthly bloody tests to monitor all of these.  She also noticed my thyroid is out of whack.  Which is likely contributing to my massive weight gain, and extra fatigue.

She had also consulted with my shoulder surgeon.  After my last appointment with my rheumatologist, she was losing hope completely. She was even doubting my diagnosis.  If it was even inflammatory arthritis we were dealing with.  She consulted with my surgeon, and she showed me her response.  My shoulder AC joint, the synovium was severely inflamed.  There was some osteoarthritis damage, a huge bone spur, but it was clearly an ‘RA shoulder’.

So my rheumatologist was reassured that I do indeed have severe Rheumatoid Arthritis.  And that biologicals are my best chance at a better quality of life.  I agree wholeheartedly that we should give Orencia another shot, so I’m feeling pretty positive about things.  Even though I spent today confined to the couch.  (I needed a recovery day from the actual fun I had on the weekend.)

The only real downside is my spine.  My cervical spine has moderate degeneration, but my lumbar spine is severely degraded.  Although it’s now considered osteoarthritis, it is likely the result of ten years of uncontrolled inflammation of my spine (spondylitis).  And there is not much that can be done about it now.  My rheumy is hoping that she can improve the lumbar spine pain with medication (methotrexate and Orencia) by lowering inflammation levels.  She said surgery isn’t considered unless there are serious neurological deficits.  I have mild deficits.  And a fear of spinal surgery, so I’m not rushing for that option.  She also mentioned an electrical implant, which my pain management doc has also mentioned, but she said in her experience the infection risk was not worth the level of pain relief achieved.

The worst pain that I experience these days is in my spine.  It is preventing me from exercising.  I need to exercise, for my inflammatory arthritis.  But my lumbar spine pain definately gets worse when I do.  Catch 22.

There really isn’t much to do there. Maybe I’ll go see my pain management doc.  Maybe I won’t. I’m not sure.  I want to be able to exercise again, cardio exercise, raise my heart rate.  Get fit.  The state of my spine is going to make that really tough.

I don’t know what to do.  So I just won’t think about that for a while.  Tonight is methotrexate night and on Wednesday I’ll start Orencia again.  And then once again, we wait and see.

Week six of methotrexate injections for Rheumatoid Arthritis

Last night I took my sixth dose of methotrexate, by injection.  I took the equivalent of 17.5mg.  I have suffered severe side effects from methotrexate in the past, when I was taking the tablet form.  I can barely believe it myself, but I am NOT having these problems on the injections.

I am not side effect free. I do get the churning nausea the following day. Extra fatigue and the beloved mouth ulcers are common visitors.  Oh and a headache a few hours after is also pretty common.  But those are the main things.  Those are pretty normal things.  And to me, they are not particularly bad when you consider that I am getting about a 50% improvement in my pain and fatigue from Rheumatoid Arthritis.

A 50% improvement.  Just stop and think about that for a second.  That’s incredible!

I have gone from spending almost all day, every day lying on the couch or lying in bed to spending my days doing stuff.  I need rest, sure.  I need breaks, lots of them.  But if you walk around my house now you can see that I am starting to get things done.  All those little piles of ‘stuff’ that I needed to deal with, are starting to be dealt with.  My laundry is clear.  Washing in baskets, or folded and put away even.  Carpets are vacuumed.  Floors mopped. My kitchen is tidy…ok, no its not. But its tidy-ER.  (I hate doing dishes!)

My house has never been a show piece, but for the last few years it’s been a dump.  A pig sty.  Because I have been doing the bare minimum, because I am physically capable of so little. And I can’t afford a cleaner.  And while I have two able bodied teenagers, I can’t seem to find the magic ‘On’ button to make them clean up their own rooms, let alone other parts of the house.  If anyone has some tips there, please share.  Threats of removal of electronic devices are ineffective.  And that’s pretty much all they care about these days…

But back to the point.

I am functioning.  I have three or four horrible nights a week with bad pain and no sleep.  I have three or four days with bad pain.  But I that means I’m having three or four days where the pain is NOT bad pain. Or not all day anyway.  Mornings are rough, but once I get my pain meds on board, I can get moving.  I can get things done.  I can leave the house.  I can drive a car.

I’m still a long way from ‘typical’. But compared to where I was, this is feeling like a miracle.

I’m starting to plan again. I’m starting to see possibilities that weren’t there before.  I’m starting to hope.

I’m realistic as well though.  And it’s important to note that I am still taking oxycodone daily, though in reduced doses, it is still necessary.  It is still narcotic level pain that I’m dealing with.

I’m also still taking a lot of prednisone, although I have tapered down to 13mg.  I have never gotten below 12mg without going into complete collapse.  Next week I will taper down to 12.5mg and just stay there for a few weeks, and let things stabilise.

I will try to get back to the gym.  The worst pain I am experiencing is from the torn iliolumbar ligament that I somehow managed to come out of my radiofrequency ablation with.  Right now it’s stopping me from doing any exercise at all.  It needs time to heal.

But it’s an injury.  It will take several weeks, but it WILL heal.

Frustrating as the injury is, it’s not forever. Not like the crippling level of RA pain was forever.  Or so I believed.

It does feel like a miracle to me.  I’m sure my rheumy would think it’s a miracle too. I know she had lost all hope last time I saw her.  I can’t believe that methotrexate injections affect me so differently to methotrexate tablets.

It is also true that all of this could change tomorrow.  Maybe it won’t last.  But for now, I am doing significantly better.  And I’m just enjoying the feeling of possibility.