Confusing gout pain after 7 months allopurinol

[Adrian Parsons]

9 years ago I suddenly developed gout after going on a low carb diet.
Uric acid was slightly elevated, and I had a stabbing pain in my right big toe.
Followed by a kidney stone.
Unfortunately, I also developed all the symptoms of RA at the same time which has made diagnosis confusing. I developed migratory joint pains in pretty-much all my joints and swollen glands in my neck. Neck glands still swollen and joint pains all over now and less migratory than they were. RA test proved negative. So I decided to just focus on the uric acid gout aspect.

A vegetarian diet helped my uric acid levels but as soon as I waivered slightly, uric acid would go up slightly to about 8 mg/dl.

What is confusing is that I never had bad gout pains but often a light stabbing in that same right big toe after eating e.g. shellfish. Knees and ankles would ache if I walked more than normal and joints would be stiff in the morning. So, about 7 months ago, I started Allupurinol at 100 mg. It seemed to help ease the pain generally and uric acid levels went down to between 3.2 and 4.8 mg/dl. I even thought about slowly phasing out the Allupurinol when BANG! a couple of weeks ago I got a bad gout attack. Big toe swollen and red, could not walk for 6 days. All I had done was drink one glass of white wine 3 nights running. ( Unusual for me as I hardly ever drink alcohol.)
Can anyone make any sense of this please?
I thought Allupurinol would cause an attack much sooner than 7 months. Could the 100 mg dose be too low? Now looks like I should keep it up for a year at least. Even more strange is that my generalised joint pains have subsided since this properly painful gout attack. Although perhaps it is too early to say. But if so, I am almost inclined to think that the shock of getting gout made my body develop an auto-immune response that has only been stopped by a proper gout attack. I am certainly not getting any clues from doctors or specialists.
Any help much appreciated.
All the best
Adrian

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Is 100 mg allopurinol OK?

On allopurinol but still getting gout every month

Adrian started a discussion wondering Is 100 mg allopurinol the right dose?. Others joined in with various concerns:

• On allopurinol but still getting gout every month.
• Allopurinol for 12 months then have a gout attack.
• Allopurinol for 3 months and then a gout attack.
• Still feel pain in ankle after seven months allopurinol.

So we see several related concerns about gout pain after months of allopurinol treatment. But a common theme is failure to keep a month-by-month record of allopurinol dose compared to uric acid levels. Personally, I would also include a daily record of gout symptoms. Including pain level and joints affected. Then you have accurate information when you discuss your concerns with your doctor.

What personal progress records do you maintain in your GoutPal Plan for Gout Patients? How does that help you work with your doctor to improve your gout recovery?

[nobody]

Hi!

As you probably know, if you had untreated gout for 8 years, it’s not surprising it would take more than 6 months to go away.
Neither your uric acid or your gout ever seems to have been very bad so taking a bit of allo to lower your uric acid wasn’t such a radical intervention. It makes sense allo didn’t trigger a bunch of attacks as you ramped up your dose. Indeed, you didn’t ramp it up at all.

At the same time, it looks like something else might be bothering your immune system.
I agree: it’s too early to tell. Keep taking allo and see how things turn out. Possibly the weird pains will go away before long.
If you test under 5 mg/dl, your dose is probably sufficient. But if you want to drink wine and eat meat and assuming your other blood tests look fine, maybe a slightly higher dose would give you a safety margin?

Drinking wine may not have been the only risk you took two weeks ago. If you live in the northern hemisphere, it’s probably getting hotter where you live. Have you increased your water intake to compensate for the resulting water loss?
Summer temperatures alone may be sufficient to destabilize uric acid deposits in the colder parts of the body anyway. There’s not much you can do about that, except making sure such deposits do not get a chance to form anew.

[Adrian Parsons]

Hi nobody
Very grateful for your reply.
I suppose the confusing thing for me was whether to take Allupurinol at all because my migratory joint pains were not typical of gout and my uric acid levels were moderate – apart from that stabbing pain in the right toe. Specialists put it down to arthritis wear-and-tear which to me is crazy as the pain would move round my body – even in my jaw one morning – and I’m not a great talker…
Having started on allupurinol, that recent ‘proper’ gout attack seems to be telling me something.
I forgot to mention that I had very low Vit D and moved to a warmer country a year ago to get away from those British grey skies – this is why I have little medical back-up here. In fact, I have not had kidney or liver function checked since starting Allupurinol (although no rash or obvious problems with it) because every blood test is expensive here and I have not found work yet.
So, yes, it is hotter here and I don’t drink enough water and must work harder on that.
All the best

[Keith Taylor]

1. Very important to stay hydrated on allopurinol. Does it not say that on the label?

2. Gout recovery is a slow process. My rule of thumb is around a month for every year of excess uric acid. But you didn’t suddenly develop gout 9 years ago. Rather, you suddenly noticed gout that had been developing for a few years. So it’s difficult to guess without your medical history. Nonetheless, I shall guess at 15 years, and further guess at 15 months for full recovery.

You can consider yourself to be free from gout after 6 months without a gout flare, as long as uric acid stays below 6 mg/dl (but always best to aim below 5).

So, Adrian, I would say everything is progressing for you as I would expect. And the real issue is why do you believe that migratory pains are *not* typical of gout?

By the way, “moderate” is quite meaningless – you can choose from Safe, Borderline, Risky, or Dangerous uric acid levels. 8 mg/dL is Dangerous, so keep taking allopurinol. If you want to recover faster, consider 6 months on a higher dose.

Finally, how much are blood tests for kidney function and liver function compared to a glass of wine?

P.S. Yorkshire sky is blue today (again) 🙂

[Keith Taylor]

To clarify, the timings I mentioned are just a guess really. Because, in the absence of a uric acid DECT scan, it is almost impossible to tell when all old crystals have dissolved.

The problem lies in clumps of crystals coated in almost impervious coatings. I recall one recovering GoutPal member who went over a year with successful allopurinol treatment. Then he got a short-lived attack in the knee. So, it pays to keep the pain meds on hand until you reach the point where you can’t remember why you have them.

[Adrian Parsons]

Thanks very much for the guidance Keith.
Wine is very cheap here… but I take your point.
Great to hear from people like yourself who have been there, done it and de-mystified it.

The doctors and specialists acted baffled about the migratory joint pains.
They have a knack of hearing the first thing you say – throbbing right toe – and ignore the rest. Having insisted with them it seems they consider the migratory pains not typical of gout but I can see on this forum that it is a possible symptom.
The swollen neck glands for 2 years don’t seem to be though.
I can get Uric acid tested monthly at my local chemist and in the last 4 months it has actually been consistently below 5 mg/dL – low enough to think I was over it but then… the big attack came a couple of weeks ago and I will stay on it as you and others recommend for at least a year. I found it hard to come to terms with the fact that a normal looking toe would suddenly become so red and swollen as something that was there all along breaks down but your last point clarifies this too.

[nobody]

Yeah, it’s mainly the neck glands thing which would make me ask a doctor if it could be something else.
As to the migratory pains, you’d have to describe them a bit more but while gout can move from one place to the next, typically it doesn’t cause pains all over the body. Pains which move from place to place are also more typical of gout that’s been allowed to fester for some time or of the early phase of treatment. Typically, gout starts by affecting a single joint. So migratory pains aren’t surprising at this stage… but getting them right from the start is another matter.
Do you know for a fact what caused your kidney stone by the way?

Besides the fact that the liver and kidneys are rather important organs you don’t want to risk over a little money, it would be prudent to save the cash for a more formal blood test than you can get at your local chemist in order to make sure the tests you’ve been getting lately aren’t underestimating the amount of uric acid in your blood. There’s more than one testing technology out there…

[Adrian Parsons]

The doctors draw a blank on the neck glands.
After the low carb diet when right big toe started throbbing, uric acid was found to be slightly raised – 0.46 mmol/L. At the same time I noticed my right hip had lost some flexibility which was weird. Then over the next weeks an ankle would ache, then a knee, then an elbow, once my jaw, then elbow other side then knee other side. I had a phase of getting bursitis of the knee if I ran or played football. Wrists would sometimes ache lightly. Now, 6 years on, all these places ache mildly and symmetrically except for my jaw which doesn’t. There has never been any redness or obvious inflammation although I feel tender knuckles if I knock on a door or painful knees if I kneel down for too long. Then, 7 months ago I tried Allupurinol at 100mg per day. Got my first proper gout attack a few weeks ago in the midst of decently low uric acid of 4.7 mg/dl and pains seem to have subsided all over. I found it all very confusing and wrote on this great forum.
My kidney stone was 5mm Calcium Oxalate Monohydrate.
I will get a kidney and liver function blood test.
Many thanks.

[nobody]

Your description of these migratory aches doesn’t sound much like gout to me. For one thing, widespread gout should also affect the fingers and the smaller toes where redness is more obvious. But each case is different.
You should stay on alloputinol anyway since you do seem to have gout based on the following:
-big toe pain on low carb
-SUA as high as 8 mg/dl
-textbook gout symptoms after starting allo
And allo is going to tell: whatever pain goes away for good after being a couple of years on allo, that was almost certainly gout. Whatever pain remains, that’s almost certainly not gout. Only you need to confirm your dose is sufficient and that your body tolerates it by getting this blood test we’ve been talking about.
In case it looks like some organ of yours hates allo, there are alternatives.

Calcium oxalate can cause gout-like symptoms in the joints but it seems that’s quite rare (unlike having it in the kindneys). There are a few other chemicals known to cause gout-like joint disorders. Hopefully allo will take care of all your symptoms and you’ll be able to forget about the menagerie of non-gout joint diseases.

[Adrian Parsons]

I have finally had kidney and liver function test done after 7 months on 100mg Allupurinol daily. My doctor is very laid back about it all so any interpretations much appreciated.
Creatinine 0.73 mg/dL (Has been similarly low in last 10 years of blood tests before taking Allupurinol)
Uric Acid 5.94 mg/dL
AST 25 U/L
ALT 23 U/L
C reactive protein 0.42 mg/dL. (Between 0.1 and 0.2 mg/dL in last 10 years of blood tests so has gone up since taking Allupurinol but still within limit.)
e-GFR 105 mL/min
Urine normal.
Thanks in advance
Adrian

[nobody]

The good news is that you seem to be tolerating allopurinol.
The bad news is that UA result: it is significantly higher than the “between 3.2 and 4.8 mg/dl” results you were getting from your chemist. You could re-test but I think you could simply assume your chemist’s test are biased low and increase your allo dose to 150mg or even 200mg without further delay. In principle, you should only do that with your doctor’s approval but we’re only talking about moving from a tiny to a small dose…

[Adrian Parsons]

Got it, thank you very much ‘nobody’ and Keith!
Have gone up to 150mg, will let doctor know when I show him blood test results.

[Author]

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