Rheumatoid Arthritis and life with no first line DMARDS

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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…

11 COMMENTS

  1. Were you injecting the mtx or using pills? The shot instead of the pills got rid of 90% of the side effects. Unless your liver labs were bad. ;( Get well

    • thanks Robin. I was taking pills and my liver function was OK – I suffered severe depression as a side effect. I spoke to my rheumatologist and he felt while injections would help with the gastric side effects and nausea, he didn’t believe it would help emotional side effects. What was your experience?

  2. Hi me again! I was about to ask the same question!! I have been on mtx for 18yrs pretty much and was initially on the pills. I wasn’t doing too badly on them until I was upped to a dosage of 17.5mg, then the nausea really got to me, I was losing an entire day to feeling like death and was feeling sick before I even put them in my mouth. I heard from a friend about the injections and asked my rheumy, (halfheartedly as I’m in the UK and didn’t think for one moment he’d say yes), if I could give them a go, he said yes right away!! Could have knocked me down with a feather. Anyway my personal experience of them has been on the whole pretty darn good. I do still get the odd day when I feel nausea but I wonder how much of that is from overthinking it. Most weeks I can sail through, I find these weeks to be the ones where I don’t think about it before doing it, and then throw the box away when it’s done and forget about having done it. I’m not going to lie to you, some weeks I do still feel it but I no longer sit there with a pile of pills, dreading having to swallow them.
    I would be inclined to say to this rheumy that I was willing to give the shots a try, if they don’t make a difference at least you’ll have tried it. He as a good rheumy should be willing to let you take that chance. Just as a side thought, I’m assuming here that your rheumy also has you on Folic acid to help with the side effects and an anti emetic for the sickness?? If not I’d be asking why not.

    • Hi Gillian, yes I take folic acid. It certainly helped with the nausea and mouth sores. But it did nothing for the depression. Actually it was more like an intense manic episode. I wound up in hospital on anti-psychotics – it was a terrifying experience. I’m not willing to risk that again, and my doctor is not willing to risk it. I haven’t yet discussed it with my rheumatologist. If the only upside of the experience might be that he finally ‘fails’ me for methotrexate. I’m glad that it works for you – I think it helped me too. And thankyou so much for your thoughts, your help and advice.

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  3. In that case I absolutely do not blame you for not wanting to go near it again. I have never heard of it causing depression before, that does sound utterly terrifying. My thoughts are with you as you continue to search for something that can help.

    • My doc initially felt it was the prednisone that was causing the problems. But now he agrees totally that it was the methotrexate and he agrees I should never go near it again. Its a very rare side effect – I’m just lucky I guess 🙂 Thanks Gillian – all the best to you too.

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  4. So is minocycline not consider a DMARD in Australia? I know we talked about this a bit, and there was a question on protocol, which is 100 mg twice a day MWF. I was put on it every day, had some issues with thyroid dumps, chest pain. I’d like to try MWF. All the problems I had on medicine were better than the joint pain.

    • Hi Gloria, my rheumy says it is a DMARD…but a mild one. The accepted theory here, is that while it is an antibiotic, it has a mild anti-inflammatory effect. He has prescribed it for people with mild RA, but for this reason he doesn’t think it would work for me. I, however, feel I have nothing to lose by trying…and I have read stories on the Roadback.org that sound like some pretty severe cases of RA have been helped or even put into remission.

      I’m researching now, but I intend to start the MWF protocol this week. So you found that it did improve your joint pain? Gives me hope 🙂

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