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.