Back in mid-2020 it was discovered that I had rheumatoid arthritis. I started taking prednisolone with immediate rapid relief of my symptoms. I then started methotrexate, which helped but didn't put me into remission. Hydroxchloroquine was then added, which again seemed to have some beneficial effect. At that stage I was only taking a low dose of prednisolone, but as the symptom graph below shows, when the prednisolone was stopped altogether my joints became worse than ever. So my rheumatologist decided to add golimumab - an injected monoclonal antibody based drug which costs about $1200 per dose but which the government subsidises to reduce the cost to $40 if you meet certain criteria (that you have lots of joints affected and you've tried other drugs without success).

As you can see, since I've been on golimumab there has been an improvement - but only a rather modest one. I am not sure that this level of improvement justifies the cost. I certainly wouldn't pay $1200 per injection from my own pocket.

Prednisolone was stopped because, although it's very effective, if taken long term it produces serious side effects, including osteoporosis. Methotrexate is said to not have many side effects but it can damage the liver and increase the risk of skin cancer. My rheumatologist decreased the methotrexate dose when liver damage was showing in my monthly blood tests. At the beginning of 2021 I developed gynaecomastia - which has been reported as being caused by methotrexate. To help minimise this side effect of methotrexate my rheumatologist suggested I take 5 mg folic acid every day. This seemed to reduce the gynaecomastia, but I developed anorexia, which has been suggested as a side effect of folic acid. Also, there's a suggestion of increased risk of cancer with higher doses (e.g 5 mg/day) of folic acid. So I reduced the folic acid to 1 mg/day - and the gynaecomastia got worse again.

I see the rheumatologist again in a few weeks. It's becoming increasingly likely that no drug regimen is going to deliver the degree of remission that is the aim of treatment. It's a complex process to optimise the treatment to give adequate relief of symptoms and minimising the adverse effect of RA on lifespan and functional ability, without causing unacceptable side effects.

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Two strikes

At about 04:30 on 25 September I was running along this stretch of the Pacific Highway when suddenly I found myself face down on the road, hitting the left side of my head and scraping knees and knuckles. I was only aware of the fall at the instant my head hit the ground as I heard my glasses go skidding across the road.

I was hurt and bleeding, but not badly, so I picked myself up and kept running. It was only after I had run a further couple of kilometres that the realisation came to me that I had no awareness of what made me fall; no memory of a trip, or any sense of confusion or disorientation. I wondered whether I had experienced some sort of syncope. It turned out that both my GP and my rheumatologist were also somewhat concerned at the possibility that this was some sort of cardiac episode (exertional syncope). This is especially likely because one of my rheumatoid arthritis drugs, hydroxychloroquine, is known to cause a heart conduction abnormality - a prolonged electrocardiograph Q-T interval. This can be a harbinger of sudden death, with 30% of people who have an episode of cardiac syncope dead within two years.

So I told my story to a cardiologist. He recorded my ECG and found the Q-T interval to be normal. He reckoned the incident didn't sound like a cardiac problem. Only a month later I proved him correct.

On Friday 20 November I was once again out on my usual night run. Suddenly - whack! The left side of my head hit the concrete very hard, in exactly the same location on the Pacific Highway as last time I fell. This time I had just the tiniest recollection of some sort of trip, but no attempt to catch myself from falling. Almost all of the body parts hurt in September were hurt again, but worse. My glasses were broken this time, and much of the left side of my face was numb. I don't know why I don't seem to have a chance to catch myself from falling, but it seems certain that there must be some sort of uneven surface on the Highway at that point on which my foot catches and trips me up.

My TickrX ECG-based heart rate monitor (red graph above) also shows that just before the fall my heart was running quite satisfactorily at 121 beats/minute. So the heart seems to be in the clear.

Unfortunately, I seemed to have cracked a couple of ribs. Further, after a weekend of no improvement to the numbness on my face, I saw my GP on Monday. He arranged a CT scan which showed a zygomaticomaxillary complex facture, with the broken zygomatic arch pushed out of place. That afternoon I was seeing the plastic surgery team at Royal North Shore Hospital Emergency Department, and a couple of days later was admitted for Dr Alice to do a Gillies Lift procedure, which pulled the zygomatic back to where it belonged. I am now back home with a black eye, a neat row of 5 staples where Alice inserted her instruments, and her orders to not chew anything for 6 weeks (due to the attachment of the powerful masseter chewing muscle to the broken zygomatic arch). The damage to the infra-orbital nerve (caused by the fracture of the base of the orbit) which is responsible for the numbness in my face could take 6 months or more to heal.

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Birds cause back pain

After months of not running due to joint problems caused by rheumatoid arthritis, prednisone has allowed me to start running again, much to my great joy. After only about a week of running, however, I have developed back pain (again). It came on right at the end of Monday's run and is now quite convincingly behaving as in previous episodes that I have self-diagnosed as low thoracic osteoporotic fractures.

This setback must be partly caused by my failure to achieve my goal of maintaining my body mass above 60 kg (currently 57.5 kg). I wonder if the critical trigger of this episode, however, was the heavy lifting I did in constructing a bird feeder on Sunday and Monday? The branch which supports the feeder tray was hard work to cut down and very heavy to carry and lift into position.

Sulphur crested cockatoos eat while crimson rosellas wait for their turn on the bird feeder.

I am just hoping that it isn't running per se which has caused this problem.

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For some time I've been hearing scratching noises coming from above our kitchen ceiling. These usually occur just after it gets dark when I'm starting to make dinner. I became convinced that these sounds come from a possum, waking from its daytime sleep in our roof space, and heading out for a night of chewing our magnolia buds, eucalyptus leaves, and fruit scraps from our compost heap. It didn't me take long to identify a hole through which a possum could enter & exit. The hole had been blocked with chicken wire by my father about 50 years ago, but the wire had corroded and broken, leaving easy access for the nocturnal Common Ringtail Possum, Pseudocheirus peregrinus. These had previously made my garage roof their home and I see plenty around the suburb at night.

So on Monday night I took a torch outside for a stakeout. At about 6pm I saw a ringtail possum just outside what I had identified as the likely entry point into the roof space. It ran off when I climbed the ladder onto the roof. So I placed a piece of timber over the hole and added a couple of bricks to hold the timber in place to block the entry point. I went to bed that night assuming I had fixed the problem.

Michael 1, Possum 0

On Tuesday morning I found the bricks and timber had been pushed out of the entrance hole, breaking a roof tile in the process. Presumably the possum was once again inside the roof. I then spent some time trying to fix the broken tile, eventually having to cover the break with some lead flashing because I couldn't remove the broken tile.

Michael 1, Possum 1

After fixing the broken tile on Tuesday I devised a new barrier, determined not to let this possum beat me. I then waited until sunset and watched. It wasn't long until I saw a ringtail possum. But this possum was in a tree next to the house and didn't seem to be heading towards the entry point into the roof. It moved off into a eucalyptus to have dinner. I knew from my reading on Tuesday that ringtail possums usually have a number of nests and they might sleep in a different one from their usual place if they feel threatened. I wondered whether this possum had felt uncomfortable with spending the night in my roof and had just emerged from its second bed. I kept watch and didn't have to wait long before I sighted a second possum - this time actually emerging from the access hole into my roof space. It quickly disappeared into the night. It was raining lightly, but I couldn't let this opportunity go. I climbed up onto the slippery, wet roof and installed my new barrier. In the morning the barrier was intact, and presumably the possum had spent the night in its spare bedroom, hopefully not in my roof.

Michael 2, Possum 1

My obstruction to possum entry seems to be working so far.
Can I declare victory? Has the possum been successfully evicted from my roof space? I'm not sure. But at this stage I'm (uncharacteristically) optimistic. In the camellia tree you can see in the background of the picture above, I spotted what might be a possum's nest (a 'drey').

Alternative accommodation for evicted possum
A closer look from a ladder suggests that this is, in fact, a ringtail possum bedroom.

Possibly a possum drey?
Well, I'm happy for the possums to live in my trees, I guess, even if I never see another flower on my magnolia. They were here before magnolias arrived, after all.

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Under attack (or ‘prednisone is my temporary friend’)

It seems that I’m under attack from my own body’s immune system. I’ve joined two of my children in an auto-immune disease club. They have the auto-immune gut condition, Crohn’s disease, and I almost certainly have the auto-immune joint disease, Rheumatoid Arthritis (RA). In the past 6 months I’ve had various levels of pain in:

  • cervical spine

  • both hips

  • both knees

  • both shoulders

  • both elbows

  • both 1st carpo-metacarpal and metacarpo-phalangeal joints

  • left 1st tarso-metatarsal joint

  • right temporomandibular joint

as well as ruptured left and right Baker’s cysts. The right Baker’s cyst has probably traumatised the gastrocnemius muscle causing on-going bleeding around the muscle.

My right Baker’s cyst

Each one of these joint problems initially seemed like degenerative disease, namely osteoarthritis. But faced with the accumulation of all these issues my GP, Dr M, suspected these were not just a whole bunch of localised problems! The fact that, thanks to COVID-19 restrictions, my GP consultations all occur over the phone doesn’t help resolve complex problems.

Dr M ordered blood tests which revealed elevated indices of inflammation (CRP, ESR, RF), suggesting RA as a likely cause. A visit to a rheumatologist, Dr S, has more-or-less confirmed the diagnosis and he has commenced me on 15 mg prednisone. All the joints are now slowly but discernably improving, which supports the RA diagnosis.

Of course, prednisone will cause nasty side effects, such as worsening of my osteoporosis, increased risk of infection, and peptic ulcer. Dr S reckons there is a good chance that he’ll be able to use other, non-steroidal medication to get me into a state of remission. I told Dr S that I ran a marathon last year, but I noticed that he didn’t make any promises about what that remission might mean in terms of running. In the meantime, he says ‘gentle exercise’ is my limit. My traumatised right gastrocnemius is quite happy to stick with ‘gentle exercise’ for the moment.

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Not going anywhere any time soon

Since January I've had pain in my right hip and it has prevented me from running since 13 February. It's been nearly three months now and the hip is somewhat improved but is still very sore to move. I have to use my hands to lift my right leg into the car, and getting dressed has been a struggle at times.

A few days ago, however, my lower limb situation took a turn for the worse. As happened for a week back in June 2019, I developed a pain behind my left knee and had trouble straightening it and bending it past 90 degrees. As occurred last June, it was also slightly 'stiff' and sore when I started walking, but would be better after about a kilometre. I've kept up walking, hoping that it will improve (in 2019 it was better in about a week), but that hasn't happened, and now it has become quite swollen.

I made my own diagnosis of degenerative meniscus tear in June 2019, and I see no reason to change that now. The long term outlook for this condition is not good. Although most cases do get better over two or three months, it's likely to be an on-going problem for the rest of my life. That doesn't augur well for my running future.

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lost and found

On Good Friday and was sitting in the sun on the deck enjoying my morning toast and Marmite when I suddenly heard that sound I hate more than any other - the gritty noise as I bite onto a fragment of tooth which broken off. My poor old upper left molar has had a lot of repair work done over the years, and I'm sure the fragment I spat out was mostly composite resin, now lost from its proper place.

That molar doesn't have a lot of work to do now - its opposing molar on the mandible below is only a fragment of its former self and presents little chewing surface (although maybe that's part of the problem - localised high pressure on a small point of contact). The pre-molar neighbour on the mandible is absent, having been extracted back in 2014 when it became unrepairable.

I have hated (feared) having dental work done since my primary school years, so this wasn't a great start to the Easter weekend. I have a wonderful dentist, and I was due to see her soon for routine maintenance, but Dr Jenny cancelled the appointment as part of the COVID-19 lockdown.

Later on the Easter weekend I was cleaning up around the fibro shed that is now my home 'office' and I came across a mandible with most of its molars intact and in good condition!

My first thought was that it came from a rat, but it didn't take too much internet research to identify the species. In fact, there had been a family of them living in the roof space of my 'home office' a few years ago and I had to go to great efforts to keep them out - the ubiquitous ringtail possum. Here's the mandible I found with photo of a complete ringtail possum mandible shown on a La Trobe University web site (by Richard Cosgrove):

My ruler indicates that my specimen is very close in size to the one in the La Trobe photograph.

Unfortunately, a molar transplant from the ringtail to me seems to be out of the question. Looks like I'll have to hope Dr Jenny is still working and can work some magic to keep my broken molar going for as many of my last remaining years as possible.

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from Gehry to ghastly

My workplace has gone from this, a 'classic' of Frank Gehry's 21st century trademark style:


to this 'classic' Australian fibro shed, attached to my garage at home:

I'm holed up in what my father and I built as a photographic dark room back in the early 1980s when I couldn't imagine that film and film cameras would be totally obsolete within a couple of decades. My home office, therefore, has no window, but it does have electricity, benches and cupboards. I've imported an office chair from the Gehry building and I have a borrowed work notebook computer which sits on a broken white laminate desk I scavenged from someone's kerbside rubbish pile. A treasured photographic postcard of castle ruins in rural Sussex (England) is the only decoration.

Old castle in Sussex England, Postcard sent to me by daiskmeliadorn for my birthday

The noise from the construction work next door reminds me that there is still life going on outside my darkroom (until the workers are infected with COVID-19, anyway).

It's a bit cold, and we haven't even started winter yet. I imagine that I'll be here for the full 6 months that seem to be regarded as the most likely duration of these emergency measures, so I'll need a good heater (OK, it is Sydney, Australia, so sub-zero temperatures are definitely not on the way, but I've gotten used to an air-conditioned work environment).

I don't run to work any more, but a painful hip condition is preventing me from running at all anyway, so I just take gentle nocturnal walks around my neighbourhood, half expecting passing police cars to pull over and demand to know why I'm not at home, threatening a fine of up to $11,000 and/or up to 6 months in prison!

Working from home may not be perfect, but I'm very grateful to be still employed. So many Australians have already lost their jobs and more will surely follow. And many of those will never work again because their former employer has gone out of business and we're left with high levels of chronic unemployment and some fundamental restructuring of society.

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encouragement from Gordon

Since 2011, when I've been walking or running to work, I've been frequently overtaken by an older bloke on a bike. It's usually around 3 to 3:30 am, and whatever the weather he's pedalling hard and riding fast. One day he stopped and talked to me and I discovered that his name is Gordon. I suspect he's around my age - or even older (is that possible?). He told me about his hip joint replacements and how good they had been for him. His doctor reckons that congenital abnormalities in his pelvis predisposed him to early hip joint degeneration.

Over the years since then I've often seen him ride past but he's also disappeared for periods of time, perhaps partly because I've been travelling at different times due to injury forcing me to walk instead of run. I found out that for one period in 2012 his absence was due to being injured and hospitalised when he crashed his bike (broke several ribs, punctured his lung).

Late in 2019 I didn't see him much either, but I've seen him ride past me many times this year, and he always calls out hello. Yesterday he didn't zoom past as he usually does, but got off his bike and walked with me for a kilometre or so. He revealed that his disappearance in 2019 was due to another bike crash. This time his bike had skidded on the painted centre line of a wet road just as Hampden Road curves past the Artarmon Mosque and begins an uphill climb.

In the subsequent fall he landed on his hip and sustained a small fracture in the top of the femur and ended up in hospital again. It was very painful and kept him off his feet for a while, then using crutches and gradually working back to being able to ride again. He was so lucky that the damage to his femur wasn't too bad and they didn't need to replace the prosthesis. He raved about how wonderful his orthopaedic sugeon is, but Gordon's resilience and determination must take a lot of the credit for his great recovery.

I reckon Gordon is a great example for me. Here am I, complaining about a little soreness in one of my hips and thinking my running days are over. Gordon, on the other hand, takes a much more positive perspective. He has suffered much greater pain than I, experienced many much more dramatic setbacks, and yet he has bounced back to achieve a degree of activitity that make me jealous.

Today he zoomed past me again as I trudged through the night, and I allowed myself to briefly entertain the possibility that my current hip pain won't actually be the end of my running.

[Gordon as I usually see him - pedalling off into the distance]

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Hip pain not due to metastases

Not long after daiskmeliadorn visited from America and we had a couple of great runs together at the beginning of the year, my right hip became quite painful. It had caused intermittent problems over the years - mostly 'stiffness', but never pain like this. And I had occasional pain in the right knee, too. I always assumed that the hip stiffness was due to osteoarthritis and presumed that this current pain was just the inevitable progression of this degenerative disease. I thought the knee pain was probably referred pain originating in the hip. After this self-diagnosis I decided I'd try a hefty dose of ibuprofen (said to be better than paracetamol for osteoarthritis) to keep my running going. It worked! Magic!! My pain became quite mild and completely tolerable.

About a week later, however, the hip pain worsened despite continuing to take 2.4 g ibuprofen per day. Not only was the hip sore during a run, but it started to ache at night and keep me awake. The pain was predominantly in the groin region, and it wouldn't go away with changes in posture or hip and knee positon.

So I decided to see Dr M about my right hip pain to see if he had any suggestions for better control of pain at night.

After hearing my story of symptoms, his differential diagnosis seemed to be between:

Iliopsoas bursitis, which was number 2 on my list, didn't seem to be under active consideration.

Lots of coughing while he palpated my inguinal ligament seemed to rule out the hernia. "We need imaging", said Dr M. About 8 hours later Dr M phoned me with the results. The next day I picked up the report:

I think the main issue for Dr M was that he wanted to rule out metastases and we were both relieved that the X-ray imaging had done just that. The problem is: where do we go from here? Dr M agreed that ibuprofen was the best analgesic for this pain, but with long term use it has two significant adverse effects:

  • stomach ulcer

  • increased risk of heart attack and stroke.

Dr M offered esomeprazole to help with the stomach ulcer risk, but for someone (i.e. me) who has proven coronary artery disease, there must be real doubts about the wisdom of long term ibuprofen use.

So I stopped the ibuprofen. My plan is to deal with the pain in non-chemical ways.

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