So is the treatment working?

I've now been taking methotrexate+folic acid and hydroxychloroquine for 9 weeks.  The empty spaces in a blisterpack of folic acid mark progress, one for each week.  It's at this time you begin to ask the question, 'Is it doing any good?'.

A couple of months' back I asked my rheumatologist 'How would we measure improvement?'  At the time I knew that I'd posed the question in a rather nerdy way but it was the right question.  The answer came 'We gauge process clinically' (I presume this is about mobility and articulation).  Measurement e.g. by MRI scan would just be academic and even people with few clinical symptoms could show signs of inflammation on the scan.  Fair enough!

My current test is the ease of climbing the stairs at home, the first time in the morning, typically 40-60 minutes after I get up.  Sometimes I reach the bottom of the stairs and go to take the first step with my left leg and freeze with the pain.  Fast joint movement is not possible.  The step has to be taken slowly and even then is uncomfortable.  And yet later in the day, I can take two steps at a time. Ironically, if I get a better night's sleep, movement in the morning is more difficult.  Which to prefer good sleep or a pain free start to the day? Despite this confounding factor the stairs test is a good mark of progress. Even then sufferers of rheumatoid arthritis complain of flare ups: the disease and its treatment do not progress in a smooth fashion so it's harder to assess whether the situation is improving.

Another gauge is whether I find it possible to ride out of the saddle, i.e. 'standing' on the pedals.  In late summer this was not very possible.  More recently, particularly later in the day, it feels natural and comfortable.

Typically sources suggest benefits take 1-3 months to be felt.  In my case, I'm ramping up the dose month by month, 7.5, 10, 12.5, eventually to 15mg/week and taking blood tests every two weeks to check that there are no adverse effects.  So I won't even have stabilized on my final dose over the three month period,  Of course if my condition has improved should I put that down to the hard medication or to honeygar?

Why the title, Arthritis and Cycling?

As an exercise, cycling seems well-suited to people suffering from arthritis, second only to swimming.  The impact is low and there is no risk of over extension.  Bikes can accommodate a range of riding positions and gearing.

When my knees were at their most painful August time, the most difficult part of cycling was getting on the bike! And the cycling isn't pain free - sometimes my knees ache on every pedal stroke.

I've always cycled - atleast since my early childhood when it was a ticket to freedom.  My experience of cycling and sport has brought some of the mental discipline needed to manage arthritis.  A lot of the value I get from cycling is meditative. It's one of the periods of the day when I'm closest to my subconscious. 

Historically, I would be sensitive to such a warning, examining riding position, shoe cleats and possibly easing off. With arthritis I reckon that some discomfort is inevitable and is outweighed by the benefits to the cardiovascular system.  The paradox of arthritis is that while the limited and painful joint articulation deters movement but after prolonged periods of stasis, e.g. after sitting or sleeping, the joints set, making movement even more difficult.  Overall, I find life is much more comfortable when I'm moving which makes a desk-based job increasingly unattractive.  In fact I wonder how much deskwork was a contributory factor to my contracting the disease.

Full pulmonary function tests

Apparently methotrexate can affect lung function, so normally before embarking on treatment through the NHS system you take a chest X-ray.  My rheumatologist prefers a more rigorous 'belt and braces' approach and requested a full set of pulmonary function tests.

I found this surprisingly difficult.  Surprising because I thought that I was quite an experienced breather and that sport had given me good control.  It took about an hour in a sealed box or connected to tubes to measure rate of oxygen absorption, peak flow rates, lung capacity.  Despite all my cycling, things were normal!  Phewww

Given that this is a baseline measurement should I expect to go back in a year or two's time? Or only if I'm experiencing breathing problems?  Next time will I have learnt some of the breathing control skills needed to improve my performance?  These come down to simple things such as seal of mouth on breathing tube, height of the tube so that your chest is expanded and you're not slouched in the chair and of course whether your suffering any mild respiratory compaint such as a cold or hayfever.

Honeygar or Cider Vinegar

Twice I asked my GP about dietary factors affecting arthritis.  The answer: no clear evidence.

In online forums people talk positively about the benefits of cider vinegar for treatment of arthritis, usually mixed with a similar volume of honey to make it more palatable, hence honeygar a concatenation of the two products, though not 'vinney'.

Dosage rates?  A tbs of vinegar twice a day.

People report a couple of weeks to see any difference.

The UK or US arthritis associations advise that vinegar has no benefit, in line with my GP.  However there seems to be no harm in trying as long as the vinegar does not affect the uptake or metabolism of the other medicines.  Then of course you realize that not all cider vinegars are the same - in particular you want one with all the crud left in, Sediments are good.   Distilled vinegars are of no value. Preferably the vinegar should be cut with a honey made locally since it will provide protection against the allergens you're most likely to encounter.  Right.  I settled for Aspall's and Tesco's finest. Maybe one day I'll be wealthy enough to afford Manuka honey!

So what about the hydroxychloroquine?

In posh medical terms I'm on a combined therapy of hydroxychloroquine and methotrexate and so far I've assumed the second is the bad guy, despite the tiny, tiny pills.  Hydroxychloroquine on the other hand is a two-tablet daily bind. The tablets are bigger and leave an incredibly bitter aftertaste.  Maybe time to look into its side effects?

The drug is a widely used anti-malarial and you're recommended not to take it for too long because it can damage the retina.  Good idea to get a baseline check with the optician!

Tiny, tiny pills

After an age of faffing while my private rheumatologist referred me back to the NHS I finally embark on a course of treatment.

A few learnings:

- the normal NHS route is for the hospital to start patients on methotrexate.  My flip into private and  back was causing some confusion

- methotrexate is so toxic that you want to approach it gingerly edging up the dose while monitoring blood markers for any adverse reaction, the dose is stablized over a period of a three months

- information is lost at interfaces, for example what dose, which drugs?  Details, details.  As a scientist I'd welcome a bit pf precision here, otherwise it might blow the placebo effect!


Methotrexate is so toxic it's motivated me to reduce my alcohol intake down to 2 units a week - effectively I've swapped one toxin for another.

Somehow, my dentist knows all about this

I thought I'd better check out the pain in my jaw. After tapping a few of my teeth with a hammer, the verdict was that rather than a tooth problem, it was bruxism or arthritis, yet again. My dentist has psoriasis and most probably knows more than your average dentist about arthritis, since there's a form of arthritis closely associated with the skin disease.

She suggested an anti-depressant to moderate the pain???

Soaked muesli for me - no more grinding through gravel in the morning.

Chest X-ray

Methotrexate can affect breathing and so it's standard practice to get a baseline on lung function.  The walk-up X-ray facility at Addenbrooke's is a slick operation.  It's a pity you don't get to take the image home.

My last chest X-ray in 1991 showed an unusually large heart - 'big-hearted guy, hey'.  This time it was normal.  Do hearts shrink?  In 1991 I was cycle racing every weekend, maybe it makes a difference - seems unlikely.

The X-ray did show two cracked ribs which must have happened when I fell off on a descent of Coverdale in the Yorkshire Dales - way back in 2008.  I had a frozen shoulder for a week afterwards, though my GP swore that the ribs were fine!

Finally a diagnosis?

All those syringes of blood and no pointers to anything out of the ordinary, except for a high erythrocyte sedimentation rate which is an indication of systemic inflammation.

After an initial wobble about a missing blood test my consultant decided now was the time for action.  The clinical data indicate inflammatory arthritis and the lab test results help to rule out other candidates.  What type of arthritis?  In order of the most likely first: psoriatic, rheumatoid, ankylosing spondylitis, reactive.  For the first three, an exact diagnosis doesn't matter too much since treatment  is identical - a DMARD such as methotrexate or sulfasalazine.

Memorable quotes:

'with methotrexate, we don't like you drinking'

'so you've read the background literature on methotrexate side effects and it's probably scared the hell out of you'

My notes before the consultation:

U/S fingers?

What is the diagnosis?  Level of confidence?

Could this be reactive arthritis?

What is the best way to reduce the inflammation in the short term?

What is the best way to arrest the disease?

What is the therapeutic target?

If this is psoriatic arthritis, what is the likelihood of me developing skin psoriasis?

Treatment plan?

Options

- course of NSAIDs

- injection of corticosteroid, prof speed mentioned MRI scan would indicate my knees are a good candidate

- lance cyst to remove synovial fluid

- surgical removal of cyst

- mono-therapy with DMARD

- combined therapy

Which is the most effective combination of DMARDs for PsA?

- anti-TNF, biologics, e.g. Enbrel (etanercept), Humira (adalimumab), Remicade (infliximab) and Simponi (golimumab)

Is methotrexate effective?

What are the long-term risks associated with DMARDs?

What are the side effects?  See NHS website

Strategy:  start from a low dose and increase until improvement in condition, or start with high dose to trigger change?

What exercises might be beneficial?

Symptoms 21/9/14

Fingers on left hand stiff will not fully straighten or close

Stiffness in shoulders and upper spine

Knees very stiff - difficult to get up from sitting position.  Often click, sometimes painfully

Sleeping OK 

A wealth of medical literature

While waiting for my next consultation, I've been reading the medical literature on the diagnosis and treatment of inflammatory arthritis and created a small review. It's fantastic to be able to access scientific literature free online, albeit abstracts only for the BMJ.  Fortunately medical abstracts are comprehensive and seem to be written to a fairly consistent format.

The review did not exactly put a spring in my step:
- the disease is not curable, at best you can hope for its progression to be slowed or stopped
- treatment with NSAIDs has been phased out in favour of DMARDs
- the efficacy of the most commonly used DMARD, methotrexate is debatable
- recent results show that tumour necrosis factor (TNF) inhibitors are more effective than methotrexate but because they're far more costly are only likely to be prescribed if methotrexate fails
- it's important to start treatment early in the course of the disease, a so-called therapeutic window of opportunity

Back to the rheumatologist with MRI images of my knee joints

Great, the good news is that it's not cartilage wear and the bad news is that it's probably some form of inflammatory arthritis. To my surprise we also discuss gout as a possibility, rather sobering given I'm guilty of drinking a glass or two of wine every night.

To nail the diagnosis we need another round of blood tests which would blow the BUPA budget so it's better for me to get the tests on the NHS.  So, the BUPA cover is not sufficient to pay for the tests and consultations needed to reach a diagnosis, let alone administer the course of treatment.  Company group BUPA schemes might not be worth the extra tax they incur!

More tests . . .

My thoughts before the consultation:

Systemic?

What else could we test?

Gout seems unlikely, toe, redness. Alcohol close to allowance

Allergy? No change in lifestyle

Virus? Muscles ache. Swelling of fingers, stiffness in top of spine

What can we deduce from MRI?

No treatment yet.

NSAIDs? 

Muscle strengthening

Prognosis?

Into the MRI tunnel

Unlike X-rays, MRI scans really bring out the details of the soft tissue.  Beautiful images and full of inflammation

This article describes what a radiologist might be looking for

A visit to the high priesthood of the medical world

Consulting my rheumatologist feels like an appointment with a high-powered lawyer, piercing intellect and exorbitant fee rate.  The £ quickly tick away.  I'm glad that I've prepared my history beforehand because time is money.

I demonstrate my immobility by perching stork-like on one leg, and then have an ultrasound scan of my knee which indicates regions of inflammation.

Time for MRI scan, tricky thing to pin down this diagnosis.

Later I reflected that I was pleased with the choice of consultant, quick on the uptake, told it straight and gave the impression of being up to date in the field - maybe a tad light on empathy!

Doctors apptment #3

The third visit to my GP practice which seems to do a roaring trade.  The busy schedule makes it difficult to see the same GP each visit. In fact this was the third GP with whom I'd discussed my knees.  The discussion went a along these lines:

Difficulty moving - physio has not improved the problem which has worsened since my first appointment in May. In May it was my right leg. Now it is both.

The knee X-ray showed no bone problems  - do not have a clear diagnosis.  The X-ray will not show problems with soft tissue.  MRI? If this is osteoarthritis would like to know!  How can we get a clearer diagnosis?

Would it make sense to see a knee specialist?

Three weeks ago a Baker's cyst developed on my left knee. Since then the rest of my leg has become swollen below the knee.  How serious is this swelling?

Neither the X-ray nor blood test had provided any clues.  My GP concludes that I should see a rheumatologist. Since the stiffness was in both knees and also my fingers some type of systemic inflammation was likely.  Joy. 

NHS or private?  I am keen to progress things and since I am part of a group BUPA scheme I decide on private.  I quickly find that in practice my BUPA cover does not amount to much:  there's an excess of a £100 and a cap of £1000 for out patient consultation.

 

Osteoarthritis?

A second visit to the GP to discuss my Baker's cyst and a chronic stiffness in the first two fingers of my left hand.  He talked about getting the cyst drained and the possibility of surgery but also commented that the cyst was probably the symptom of another problem and likely to return unless the underlying cause was alleviated.
And the fingers?  Some residual inflammation from an earlier knock.
And the stiff knees?  Possibly the onset of osteoarthritis, given the wear and tear of cycling.  My GP suggested further investigation: blood tests for markers of rheumatoid arthritis and an X-ray to check for bone erosion and anomalous geometry of the joint.  We agreed that it was best to monitor the cyst but do nothing for the time being.

Baker's cyst

I noticed a plum-sized lump  on the back of my left knee which from a bit of googling seems to be a Baker's cyst.  It makes its presence felt as I straighten the leg but is not a great encumbrance.

Body freeze

In August camping with the family and sneaking away early morning for quiet bike rides before the world woke up.  I found physically moving my body increasingly difficult, very stiff legs, stiff back, painful to squat.  This eased off during the day but climbing up steps hurt.  The crouching and kneeling required for tent construction and dismantling were ouch! Bike rides were possible, but slower than usual.

A comfortable ache

During July I began to notice aches and stiffness in the other knee, particularly after exercise, not entirely unpleasant. It was a comfortable ache, not dissimilar from the feeling after a good work-out.

June stretches out . . .

June saw me running in the Tiergaten in Berlin and dutifully stretching.  In the age of the podcast and smart phone there's ample distraction from the tedium of stretching.  However I could not claim that I was experiencing much difference, if any.  Fortunately, I'm old enough to realise that improvements are likely to take weeks or months.

Stretching exercises seem to range between ones where you can't feel there's any stretch at all and ponder whether you've got the ergonomics right and those which feel thoroughly dangerous, another degree of limb movement and something might pop.

Physios often seem to be happy people

I tried the NHS dial-up physio service in which you describe your symptoms to a physio over the phone and are then prescribed a course of treatment - the inevitable set of stretches.

Rationally I'm convinced that stretches are a good idea and several times in my life I've attempted to embed the habit.  It's never worked  - I've simply found them too dull.

This time I was determined it was going to be different and so I thought I'd use the 'Pain of Paying' as a way to enforce the behaviour change and consulted a private physio.  Very cheerily she advised a similar set of stretches to the dial-up physio.  The big advantage is the practical rehearsal in the clinic so that you learn what it should feel like and build a physical memory rather than relying on your interpretation, or misinterpretation, of diagrams.  The session, though less than 40 minutes, seemed a good investment of £70.

And so it goes.  Lots of work on the hamstrings and stretches after exercise.

 

Time to consult the medical profession

My wife and I took a Sunday walk on a muddy forest track with swathes of bluebells.  Picking my way across a particularly treacherous section, I slipped and fell into a squat still on my feet.  Whoaaahhhh.  Ultra pain :-o.  Initially I wondered if I'd torn a ligament.  However getting up things seemed OK and I could comfortably walk back home.

The sharpness of the pain prodded me to book an appointment with my GP and get my clunk listened to.

I often feel a bit embarrassed seeing a GP, aware that resources are short and there are calls on the GP's time - often from folk who have really incapacitating diseases.  Still prevention is better than cure!

After a few knee flexes and a hunt for tender spots (none) he asked me what I thought the problem might be.  Is this a fair tactic?  Or is this lending a consultant your watch so that he can tell you the time?  I thought it fair - the GP cannot draw upon the experience of living in my body every day.  So we discussed the amount of cycling I do, the related problems of uneven muscle development and the possibility that the patella is not tracking properly.  Time for some physio.

The right knee that goes clunk

The fall in March didn't cause enough damage to keep me off my bike; I was lucky there was no car behind me - the advantages of early morning cycling. So now progressively building up the miles as the days lengthen getting ready for the Audax season and some long rides of note.

But there's a problem:  After a moderate ride (say 80k) my right knee stiffens up and is difficult to straighten without a painful clunk.  This is no residual injury from the crash since it was the other side that took the impact of the fall.

Am I really fit enough for the Audax season?  Do I risk causing longer term damage riding with my knee in its current state?

Fall in spring

It was an early spring morning with deceptive sunshine when I fell off my bike within a few k of my house.

It was all very amateurish - my mind was elsewhere and fooled by a road with a wet slime film, yet to dry in the bright morning sun. The road chicaned as it dropped from Granchester church to the Cam.  A turn to the left at 30kmh and the front wheel had suddenly gone from beneath me.  A slo mo motion and the shock of hitting the tarmac.  Hard. Slidey, slidey.

Being cold, I was wearing arm warmers and gloves which took some of the abrasion; my lycra shorts offered less protection.

A slow ride back home for repair.  I hadn't fallen off my bike for 20,000k despite many challenging night time rides in winter.  It took the wind out of my sails so to speak.