My experiment didn’t pay off. Am I sorry I did it? Not really, because knowing me, had I NOT done it, I would have always wondered. That is a very personal characteristic: it would not apply to everyone! While I am a firm supporter of modern medicine, I don’t like taking any more medications than absolutely necessary – had I not done that three month wash-out, I would have always wondered was I taking medication when I didn’t need to. Now I know! I need a medication!
The one thing I have learnt is this autoimmune arthritis, currently considered to be psoriatic arthritis, has a tighter grip on me than I thought.
So what happened? I was fine until about two weeks before the three month wash-out period ended. First I got a sore toe on my right foot. I thought nothing of it as I had been wearing in some new shoes plus it was possible I’d stubbed the toe without realising it. Then I got a VERY sore brachialis origin – thought maybe I’d strained myself in the gym, but couldn’t quite figure out what I had done, given I am so careful. Plus my right shoulder was tiring when I was swimming.
A week before I was due to see my rheumatologist, my left foot started swelling. Right at the moment I have only one pair of shoes I can wear and that is only because they are sandals with adjustable straps! These are my feet compared after a day at the office.
Today, I have a sore toe on my right foot, a swollen left foot, my whole right shoulder and upper arm are causing me issues and the discomfort is radiating up my neck. My fingers are a little stiff, but nothing too bad. My knees are grumpy, both of them. I’d being trying to avoid prednisone, but I’ve capitulated. Only a small dose though, to tide me over.
On a good note, my skin and nails look fantastic!
Two weeks ago I started methotrexate. Too soon yet to feel any improvement: so far no side effects. My dermatologist will be very happy – he wanted me on it straight away.
I am sad I’m back on medication, but I am grateful there are medications that will help. This is my third medication since the start of 2015. I am hoping this one will improve the fatigue and the brain fog, both of which have always been a bigger problem for me than actual pain (until right now, that is).
The brain fog is partly why I haven’t been writing – thinking is actually a struggle, particularly at the moment. Aside from that, I was wary of writing that I was fine until the jury was in at the three month mark. I knew I was taking a risk and did not want to sound celebratory until I knew whether I had anything to celebrate!
Will I do it ever again? I think, given my age, probably not. If I can get the brain fog to lift, I’d be ecstatic, as it is the one symptom that I find really soul destroying. I’m good at managing the level of pain I experience, it is the brain fog that drives me nuts. I used to be an avid reader – now I am not simply because the combination of fatigue and brain fog makes it a challenge rather than enjoyment. Mind you, it is all relative I suppose. I was speaking to a contact the other day, bemoaning the cognitive impact. The response was something along the lines of, “Well, I’m glad I didn’t have to debate you before you got sick, you’re sharp enough now!” Maybe they were just trying to be nice. But us sufferers, we feel the loss very keenly.
The fatigue is helped by exercise, but with swollen foot and dodgy shoulder, I’ve been instructed to rest for the moment. This is SO not me, I’m struggling with abiding with that instruction. Mind you, it is difficult to go to the gym when my runners don’t fit!
In another two weeks I can hope for some improvement. Regular blood tests are again the order of the day, something else to fit into my schedule.
I have four weeks of UV B light therapy to go. Although it only takes a couple of minutes, it does require careful scheduling and at three times a week I will be glad when it is over: I won’t have to dash from work to the dermatologist at a specific time. A little flexibility will be restored!
Yes, I’m disappointed, but I’m happy I had the opportunity to try. Many people are too unwell to even consider such a trial. The fact I could, I am taking as a positive.
Now, just let me get back in the pool!!! I miss my swims!
2 thoughts on “No Remission for Me – At Least Not This Time”
There’s so many things I can relate to in that post Robyn.
Uncertainty about the best treatment plan. It really doesn’t help when my doctors can’t advise what’s best anyway. I find it best to keep on top of the latest research.
Fatigue is a constant feature. Low testosterone from hormone therapy is the main cause. But even after testosterone recovers it’s a painfully slow improvement.
But brain fog is by far the worst. Inability to concentrate, difficulty finding words, when I was previously proud of my ability to argue and articulate, is so frustrating, even depressing. The hardest part is wondering if it’s just temporary, but as I haven’t been on treatment for 12 months, maybe it’s permanent. Looks like I’ll be back on treatment later this year I guess the point is moot.
Thanks for sharing your experience
Thank you Steve. I’m working on a draft of an article about brain fog, fatigue and cognitive impairment, but am still reviewing literature to include. It is good to hear from a man on this, because I was starting to wonder if perhaps there was a gender link to it.
It is horrific. It seems not all cognitive functions are affected, and it may be different for different people, but a big YES to the concentration. I used to be an avid reader. But now? I struggle to concentrate and I DO NOT think it is age related as some doctors (usually much younger ones) try to gently suggest.