When to start Allopurinol?

[Mark]

Hi all,

Despite having had gout for 12 years and every now and then searching the internet for help (normally looking for that miracle cure!!) I have only recently found this website and it truly is a fountain of knowledge – many thanks to those that run it.

As mentioned I was diagnosed with gout about 12 years ago when I was 28 years old. It hasn’t been until the last couple of years that I have started taking any sort of medication. I have been having, on and off, Naproxen for the last year – only when an attack occurred and this worked for the most part. Attacks could be a few months apart, but my last attack has been constant since September. Over the last 4 months I have been prescribed Colchicine (lovely drug!) which again worked if only for a few days, but is not something I really want to take again and again.

My GP has often recommended Allopurinol – I have resisted up until now, but am due to start taking it later this week. My last attack, which was in my knee was fading when I saw the doctor yesterday so she said to continue with the Naproxen until Thursday, then take both for a few days and then drop the Naproxen and only take it again if needed. The idea of leaving it a few days was so that this attack had gone away.

The issue is, the attack seems to be continuing, so my question is (long time getting there, sorry!) should I be waiting a little longer before starting the Allopurinol? I’ve heard it can bring on an attack, so if I am in the middle of one, should I start it?

My issue with waiting is that my gout has been pretty much constant in one place of another for four months now, so I could just go on waiting forever.

As a little bit of extra info my blood test readings for uric acid have been 496 and 500 ?mol/L – which I believe is about 8.4 mg/dL – for my last two tests (about a year apart)

Any help or guidance would be great.

Many thanks

[Keith Taylor]

Wow, Mark, thank you for your kind words. I love being thought of as a fountain of knowledge. For the past 10 years, I’ve built up my own knowledge, with a view to passing it onto other gout sufferers.

Now, I realize that it isn’t just about the knowledge. It’s more important to think about how gout knowledge affects each individual. In the past, I’ve tended to get stuck on science. In the case of starting allopurinol during a gout flare, just like many other aspects of gout management, the science is changing.

It used to be that all doctors recommended waiting until a gout flare subsided before starting allopurinol. It’s never been clear exactly why this is the case, but it is embodied in many professional recommendations. Recent science has shown that, medically, there is no reason to wait. Indeed, because it is important to get uric acid safely down to 300 ?mol/L (or lower), the sooner you start, the better.

However, the most likely explanation for the enduring view that you wait for the flare to finish, is probably more psychological. Doctors know that there is a good chance that patients will associate allopurinol with gout flares, and so patients will be tempted not to take it. They seem to hold the view that there is a better chance of longterm success with allopurinol if patients wait.

Personally, I can see many flaws in the logic of that argument. But, I’m saying that as someone who completely understands the process that causes flares as uric acid lowers, and someone who completely understands the dangers of delaying uric acid treatment.

What really matters, is the individual gout patients understanding.

Most of all, this means having the right attitude to gout pain control, and the confidence to deal with that pain during the early months of uric acid control, when risks of gout flares continue.

So, what’s the answer to your question: “should I be waiting a little longer before starting the Allopurinol?”

I can tell you what my answer is to myself, if I’m asking the question. What I need to do for you, Mark, is to help you understand the principles involved, so you can make your own choice. Therefore, I have to throw the question back, and ask:

1. What do you think is the reason to delay?
2. How would you react if you felt your current attack was subsiding, but flared up again as soon as you took allopurinol?
3. Do you expect to get flares from taking allopurinol? If so, how will you deal with them? How long are you prepared to deal with them?
I had to consider those questions, and many more, before I took the decisions about my own gout treatment that suited me.

What matters most to me, is that you feel comfortable with your choice, and you feel comfortable with returning here at any time to ask any questions you like about your gout.

[Mark]

Hi Keith,

Thanks for your swift reply, apologies for not replying sooner.

In answer to your questions, even though I know they were questions for myself; I think the reason for the delay is three-fold – I don’t really want to take a pill a day for the rest of my life, I’m a little worried about flare-ups and I am worried about potential side effects.

I do partly expect to get flare-ups after taking allopurinol, however, I’m prepared for that if the long term effect is to lower the uric acid levels and hopefully reduce or eliminate future attacks.

As it turned out, I left it a few days, partly as I needed to do quite a bit of driving on the weekend (there’s a fair bit of psychological, prolonging the inevitable there as well I’m sure!) and started taking it at 100mg per day from today.

I have a blood test booked in for 2 1/2 weeks time, so will look forward to the results from then. How often would you recommend asking for blood tests – once per month? And/or have you tried any of these Uric Acid Test Kits – for instance; http://www.goutcare.co.uk/uric-acid-meter-kit.html or have any feedback on them?

Many thanks

[Keith Taylor]

Hi Mark,

Don’t feel the need to apologise – I just found a message that I missed 2 months ago, so what’s a few days? 🙂

I’ll start with your last point about uric acid test meters.

I have used one myself – the UASure model. I did this when I was trying to learn all I could about gout. I don’t use one any more, for several reasons:
1. The testing routine needs to be meticulous. This is not a major issue for me, as I seem to have mild OCD tendencies (can you hear the ex-wives and partners shouting MILD???). I did find myself beating myself up occasionally about the occasional departure from what must be a very strict routine.
2. I came to realise that it is my doctors job to monitor my uric acid, and other important health indicators. I don’t keep blood pressure equipment or a stethoscope. I don’t even keep a thermometer. Why should I bother with a uric acid meter?
3. Now the real reason. I’m a tight Tyke who won’t pay for test strips when I can get a blood test free of charge!

Overall, I found the data insufficient to help me manage my gout. I realised that playing around with diet was not going to get my uric acid safe. This was a gradual realisation that developed as I learned more and more about gout. I also realised that, if you are interested in the science, a uric acid test meter can help you understand your gout better. As far as buying one, please let me refer you to my response to https://gout-pal.com/gout-pal-forum/please-help-my-gout/blood-tests-are-in/#post-19271
If you do get one, be sure to share your results, opinions, and experiences here. With the benefit of hindsight, I’d say daily allopurinol is far easier than daily finger pricking. But sometimes you have to go through the process to fully understand it. I’m here to help, either way.

Moving on to daily pill fears.

There are at least a couple of years comments in old threads about me recommending allopurinol, yet not taking it myself. The pill-a-day-for-life fear was strong in me, and I’ve not fully overcome it yet. I like to fool myself that, as long as there’s no pain, I’m OK. Please don’t tell anyone else, but I’ve become complacent about my daily allopurinol. I know it’s wrong, and I can make excuses all day. At least I’ve got a gout forum that reminds me daily how important it is. You and the others keep me on the right track – most of the time.

What finally convinced me was a broken knee that I ignored for a short time, thinking it was just another gout attack. It coincided with other trauma that I needed to recover from, and I knew I’d never make it if I didn’t act on my gout immediately. I went into battle, and within 6 months, gout was but a memory. The battle against gout was easy, but the battle with doctors to get the right treatment was hard.

The right treatment is to go at the speed that suits you best. You need 2 weeks between changing dose, and re-testing. A month is fine. Much longer, and you risk losing impetus. Also, delay between testing means extending the length of time you are at risk of another gout flare. 100mg is the perfect start, but rarely the right dose. You need to get below 5mg/dL as soon as possible, as the 6 to 7 range is a hellish place where crystals are constantly dissolving and reforming. For you, that means get below 300?mol/L, and avoid 350 to 400 (ish).

Now I’ve started allopurinol, I wish I’d done it years ago. I have definite signs of joint damage. It does not affect my mobility much, but I sense I’ll need joint replacement in years to come. Maybe that would have happened anyway? I’m not here to convince you one way or the other. But, I can say, hand-on-heart, you will make the right decisions for yourself if you make daily contributions to this gout forum – your own and other people’s topics.

I’m going to close for now with a truism I developed some time ago:
With uric acid lowering treatment, you might get a gout flare. Without uric acid lowering treatment you’ll definitely get a gout flare!

[Author]

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