No Remission for Me – At Least Not This Time

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!

I Am Medication Free! For Now, Anyway……..

Right now I am medication free! No, I have not forsaken the wonders of modern medicine in any way shape or form, but in careful consultation with my rheumatologist I am taking nothing at the moment. How long this will be the case, I am unsure: we will reassess in February. If anything goes belly up, I’ll just make a phone call.

NEVER CHANGE YOUR MEDICATIONS WITHOUT YOUR DOCTOR’S APPROVAL.

Why is this happening? The medication I was on, my second inflammatory arthritis medication, was GREAT for the arthritis. However, it is considered not so great for my skin. This is my left arm a couple of days after the biopsies. This is the worst patch, always has been the problem area. Ignore the scar circled in black – that was the result of having a run-in, literally, with a broken fire extinguisher. The area circled in green is one of the biopsy sites.

Why is my suture not covered? Well, the steri strips started to come off, so I soaked them off. I can not use bandaids of any sort any more, my skin is so fragile – I remove them and the skin comes with them. Rather nasty, so I just don’t go there. It is bandages after bllod tests these days.

About two years ago we investigated my skin and it was then diagnosed as photosensitive eczema. It looked a little different back then. This November I have a completely different diagnosis. This does not mean the original diagnosis was incorrect – things change. In 2016 I was on different medications. Around the time of that first diagnosis I changed my arthritis medication and early this year (2018) I ceased taking medication for my hyperthyroid, having undergone radioactive iodine treatment. So a few changes in the two years.

My skin diagnosis now is atypical psoriasis, believed to be exacerbated (considerably) by my arthritis medication. My dermatologist discussed the matter with my rheumatologist and off the medication it is! I am starting UV B light therapy in the new year – can’t wait! I say atypical because it looks more like subacute cutaneous lupus erythematosus (SCLE) (per dermatologist) than psoriasis, but the biopsies, thankfully, told a different story.

My nails, which usually readers never see due to my passion for polish, look like this. Not all the time, it comes and goes, but the little fingers are particularly unhappy at the moment.

The next medication in line for me, agreed to by my dermatologist, rheumatologist and gastroenterologist, is methotrexate. By the time I saw my rheumatologist, I had been medication-free for a month and I don’t feel too bad at all. I asked about the possibility of seeing how I go without any medication. Other medical professionals are investigating some other symptoms I’m experiencing, some of my blood tests have been a bit erratic – it might be easier to isolate a cause if I’m medication free. That consideration aside, the less medication the better makes me happy. Methotrexate only takes four weeks to “kick in” and I’m certainly not going to be a martyr about it – if I feel I’m going downhill, I’ll be in my rheumatologist’s office very quick smart. I have backup medications in case I flare.

As I have to change medication anyway, it is an opportune time to try and see what happens. My arthritis related blood tests have improved considerably since late 2014 when I was diagnosed.

So how am I finding it? My feet have niggled at me a few times, both my knees are slightly grumpy at night if I walk too much during the day, the base of my thumbs hurt a little bit with certain grip actions (think holding my drink bottle to unscrew the top). If I have a really busy day I do stiffen up at night – but then that is not exactly new, I don’t think it has gotten worse – it is also more likely related to the degenerative changes in my lumbar spine than the arthritis. Other than that, I can’t complain. I swam 1,100 metres today, the first time I’ve managed a swim session over 1,000 metres for quite some time. I did 40 minutes strength training yesterday, my quad strength is actually improving. I did 9,000 steps (accidentally) on Thursday with no ill effects.

My biggest concern is my fatigue/lethargy may return. For me, that was a major problem. Settling the thyroid helped, of course. Now my bloods are indicating my parathyroid is not behaving – endocrinologist appointment in January to try to get to the bottom of that.

The BEST part is I can go out in the sun – sensibly, of course. I’ve spent two years avoiding any sunlight because of my skin, slathering sun cream from head to toe: slip, slop, slapping to within an inch of my life. Yes, I still have to be Sun Smart, but at least I can be normally Sun Smart now instead of paranoid! I also feel better psychologically: I felt as if I was a constant Seasonal Affective Disorder patient.

I don’t know if I will stay free of medication for the arthritis. I see this as an experiment. I do seem to be susceptible to the side effects of medications so if I can stay as healthy as I am now, I’ll be happy. Any deterioration, I’ll be in my rheumatologist’s office. It takes a while for the drug to wash out of one’s system, so I won’t really know for three months – I’m only a third of the way through.

I am very grateful to my specialists for allowing me to try this. It would not be an ideal option for a lot of patients, I know. I am certainly not recommending what I am doing and would definitely NOT be doing it without having discussed all the pros and cons with my guardian angel doctors. I am monitoring myself carefully.

The physical fitness and strength I’ve slowly spent four years building back up has certainly helped me manage my condition so far, but no, there is no guarantee by itself it is enough.

We shall see – wish me luck!