Warning: This article discusses mental health issues (medication side effect).
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WHERE have I been? I had an unpleasant reaction to a medication prescribed to treat my autoimmune arthritis. It has taken me a while to feel in a position to write ANYTHING (other than a 280 character Tweet).
My usual policy is not to name medications in my articles, simply because everyone’s experiences are very different with these medications. I don’t want anyone to think negatively of a medication because of my specific experience. However, in my last article I did name the medication I had recently started, methotrexate.
I had an unexpected reaction: both my dermatologist and gastroenterologist prescribe it for conditions in their specific areas of expertise and have never had any of their patients experience a similar reaction. I did locate a study reported on Science Direct that looked at three DMARDS and mental health in rheumatoid arthritis patients: “Anxiety, depression and suicidal ideation in patients with rheumatoid arthritis in use of methotrexate, hydroxychloroquine, leflunomide and biological drugs“. Perhaps there are condition factors at play, but as a patient going through the awfulness, that is really, at the time, irrelevant.
There is no doubt (and plenty of supporting documentation out there) that chronic illnesses can lead to, or indeed have, depression as a co-morbidity. I’m also well aware and have written before about the importance of maintaining our mental health, so I always ensure I am taking the recommended actions to minimise the risk for myself. This was different.
I thought the first couple of weeks were OK – not fantastic, but OK. I went downhill after that. I won’t cover the full timeline in detail, suffice to say it progressively worsened. In the earlier weeks, there were days when I would feel the cloud lift, could almost set my watch by it, which made me think my body was simply adjusting to the new medication and all would be fine. I took the fifth tablet on the Friday as scheduled (weekly tablet). By the following Monday (three days later) I was leaning against the bathroom hand basin feeling completely unable to shower, do my hair, clean my teeth. Going to work just seemed beyond the realms of possibility. I’d already had time off, waiting for this medication to kick in, I didn’t want to take more time off. I didn’t want to crawl back into bed and hide under the doona, I wanted to crawl under the bed and stay there. It was awful. I had also been crying at the drop of a hat building up to this crescendo.
I dragged myself to work that day, I’m not sure how. The first stop I made was to my wonderful pharmacist. I explained how I felt and asked could this be the medication. Call your prescribing doctor was his immediate answer. So I did. Got an appointment for the Friday of that week. This simple action did make me feel slightly better, I’d done something, I’d taken action.
By this point it was as if there were two people in my head. One, the logical, practical, ex-science student, educated systems professional saying “this is a side effect, hang in there, there is help available”. One of my other doctors, in just general discussion, has suggested that was quite likely part of my problem – I was too logical about it and should have pulled the plug earlier! He thought he’d possibly be the same in a similar situation, which made me feel better about my stubborn perseverance! The second person in my head was the emotional or psychological me just wanting to crawl up into a ball and hide from the world. At times it was like the two were at war.
Did I feel “at risk” at any stage? I don’t believe so, but the logical me kicks in again now when answering that question and says “Can you be really sure? Your mind was not yours at the time.” The best I can say is while I felt, at the worst of it, that I was drowning in some sort of deep, dark, oxygen-depleting substance, at some level I still wanted to rescue myself, to get out of the quagmire.
My prescribing specialist took me off the medication immediately, prescribed another DMARD (this is my fourth since early 2015) and told me to do a two week wash out of methotrexate before starting the new medication. He said if I didn’t feel better in two weeks to see someone (i.e. a mental health professional). I actually did a three week wash out because I had an unrelated day procedure looming in another specialty and he asked me to wait an extra week. Oh, the juggling of it all.
By the end of the following week, (two weeks having transpired since last tablet taken) I was feeling perfectly normal psychologically. Or should I say, normal for me.
Another of my specialists asked why I had been taken off the medication. My response was this.
“There is a difference between wanting to die and not wanting to live, but it is a very fine line.” The former requires taking an action, the latter does not. I had at times felt the latter.
In my particular case not being able to exercise, due to the swollen foot and very grumpy shoulder, added to my “downer”. The two physical flares together made both gym and swimming activity inadvisable. I felt defeated. Exercise is not only my primary pain management tool, it is also a great mood lifter. Other clinical benefits are helping control weight and strengthening muscles, thereby protecting and supporting joints. Without exercise I felt I was losing on all fronts. I felt I was not in control of anything.
Mentally/psychologically I’m now fine, but I will never persevere as long again if I have another similar reaction to a future medication. I am aware this is the second time medication has messed with my mind, the first time being when I lost my sense of direction completely. At the time, I didn’t link that symptom to the medication I was on: I thought perhaps it was age related or similar. I’d even asked my then GP was there a test for early-onset Alzheimers as it was so debilitating and I was concerned maybe I shouldn’t be driving.
I remember being in my daughter’s car as she drove me to an appointment, fully functional GPS, very good driver (I taught her, so OF COURSE she is good). I was CONVINCED we were driving in the wrong direction. One week after stopping that particular medication (for other reasons), my sense of direction miraculously reappeared and I’ve had no problem since. No, correlation does not mean causation, but in this case, given I’d never had the problem before and haven’t had it since, I’m leaning towards it being a side effect. With two incidents now, may this indicate I have a predisposition, genetic or otherwise, for these medications to mess with my mind? I have no answer, but I’ll be super cautious from now on.
How am I, right now, physically? It is going to take up to eight weeks for the new DMARD to fully kick in; I’m in my second week. In the meantime I’m supplementing with prednisolone and the occasional Celebrex. I’ve started SLOWLY tapering off the prednisolone, but it will take time. I’m back swimming and gyming, more gently/lower intensity than previously at this point, but I’ll build back up. High reps, low weights for the moment. If I have to nominate a problem body part, it is feet and ankles which have never been a problem for me in the past. New challenges!
We are constantly learning on this chronic illness journey. For each one of us the lessons are different. This has been a difficult couple of months for me, without a doubt. My heart goes out to those people who suffer clinical depression, as I suspect what I experienced, albeit for a relatively short period, may be similar. I am so very grateful my solution was simply to remove a medication and thereby quickly regain my mental health.
On a good note, methotrexate was fantastic for my skin – the primary reason for the medication change! The UV B light therapy had worked wonders, but progress seemed to have stalled before the point of final perfection was reached. There was a small rough patch on my chest I was using as a progress gauge which had stopped reducing in circumference – a couple of weeks on methotrexate and that patch had completely resolved.
I cannot sufficiently thank my medical team, especially my GPs who again went above and beyond, providing additional support at very short notice. My daughter took a tearful phone call from me while she was still at work and spent a Sunday with me for which I was extremely grateful. I should also thank my Twitter friends for putting up with me – they didn’t know what was happening, but in some ways Twitter was a bit of a lifeline – it helped take me out of the darkness, with non-medical topics to try to focus on. I was on there WAY TOO MUCH!
I have deliberately written this article in “patient voice”. Not just for fellow-patients but for any health professionals that may wander past. None of us are alone. I realise I am taking a personal risk in publishing this: we are generally not a society that deals with chronic illness terribly well. We do much better with acute illness, where people get better. I still work in the “real world”, so publicly disclosing vulnerability can carry a price. Yet if we continue to hide ourselves away, to be silent about the challenges we face, we will not encourage change. I’m taking that risk.
If you notice a detrimental change in yourself that just doesn’t seem right, don’t try to soldier on without consulting your health professionals. It isn’t always new medications either, sometimes problems can arise after considerable time, for example two years. A special word of warning to those of us who live alone. We don’t always recognise what is happening to ourselves, especially if the change creeps up on us. We don’t have others to give us feedback. Looking back now, this was a little insidious. The accelerator really pushed down in that last week. We have to be extra vigilant, I think.
Time will of course be the judge, but hopefully I’m back on an upward path. All this because I wanted my skin back!
Footnote: This article is the third in a series detailing my medication change experiences. The first two articles are: