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Ouch Chris!
That ‘Ouch’ is for your pain, but also terrible memories of a similar situation I had with a friend.
Now, I am not saying this is your situation, but I’ve experienced it first hand, so it’s the first thing I think of. It’s a few years ago, but the memory remains raw.
My friend, in his 80s, was a wonderful man. Life and soul of our social club. Happy father and grandfather. Enjoying being a great-grandfather after a lifetime of hard work and happy retirement. I never realized he was a gout sufferer, as he never complained. Towards the end of his life, his gout got worse. It kept him at home when he didn’t want to be. When I heard it was gout, I thought I needed to offer some advice. I was appalled at his story as he told me how his doctor neglected to follow-up uric acid tests. An administrator had reduced his allopurinol dose on some ridiculous grounds. He thought he was doing everything right because he never failed to take his daily allopurinol.
I can’t remember the exact numbers, but I can remember that his allopurinol dose was too little to make uric acid safe. I’ll never forget his tears during that conversation.
So, I hope I’m not being melodramatic, Chris. But, this is important to me.
What is your uric acid level?
Do you get annual blood tests for uric acid, kidney function, and liver function?
Hi Ross,
My best guess of your prednisone situation is that your gout is now much worse. It’s common in patients who get pain control, but no uric acid control.
I note your comments about starting allopurinol too early, with some concern:
I took your advice and started the allopurinol right away but the doctor still swears that’s a bad idea. I read the link you posted about it being fine to do, but that doesn’t seem to be the popular notion around here. I’m a little discouraged given the amount of pain I’m still in.
I need to re-evaluate my advice, and I apologize for any confusion. I need to make it clear that taking allopurinol early assumes that you are getting correct gout pain control. The logic, and the outcomes of that gout study, is clear. If you are having a gout attack, you should be getting effective gout pain treatment. In that case, starting allopurinol will make no difference to gout pain. However, it will start uric acid control sooner, which is the best thing to do.
Unfortunately, if you are not getting proper gout pain control, taking allopurinol just reinforces the idea that it is not good for you.
I’m lucky enough to have had my pain control training from nurses in hospital. They know how to stop gouty old men crying out in the night! Seriously, nurses care that their patients experience minimal discomfort. They use their skills to promote combination pain packages that work. Perhaps sitting in your doctor’s waiting room in tears because he wont deal with your pain properly might be an option.
Sorry about that rant!
I simply cannot understand why, in 2016, doctors get away with such brutal treatment of gout pain. Anyway, I’ll add a warning about ineffective gout pain management to my Allopurinol Quickly article.
Hi Robert,
Listen to Linda!
Another alternative is that we work together to train your GP. The conversation I would have with her goes something like:
"I absolutely agree that I need to improve my diet, and lose more weight. However, this is going to take me at least a year. It might take longer, because gout pain is limiting the amount of exercise I can do. I am also worried that uric acid crystals are damaging my joints, and strenuous exercise might cause serious damage. If I can start allopurinol now, it will reduce the risks of continuing damage from uric acid crystals. That will help me to exercise more and get healthier."If she can’t accept that Robert, can you see another GP? I had to consult 4 before I found one smart enough to listen to the facts.
Please don’t play around with pills nicked from your wife. Allopurinol needs to be taken at the right dose for each patient. Sharing just means neither of you are getting enough.
Under-dosing allopurinol does very little to reduce the burden of uric acid crystals.
Under-dosing allopurinol does a lot to increase immediate risk of gout flares! Who wants the science?I’ve discussed the combination of allopurinol and probenecid with other gout sufferers. It’s a great combination for some gout patients. There are some important factors to consider, but before I ask about those, there is a much more vital question I have to ask:
What are your uric acid levels?
Have you have had a gout flare soon after changing your gout medications? It is much more likely to be a sign that your treatment is working better. But, I don’t want to waste your time discussing percentages. Please post your latest uric acid test results. That is most important. If you have time, I can also help you better with more information about:
How long have you had gout?
When did you start allopurinol?
History of allopurinol doses
History of gout flaresIn general Linda, the more information you can give me about your gout history, the better I can help you.
Probenecid with allopurinol can be a lifesaver or a waste of time. It depends on you.
Ooops! I just spotted another minor issue: “allopurinol program to follow the treatment of the current flare”
There is no need to wait for gout flares to subside before starting allopurinol. Start Allopurinol Quickly, But Carefully
Hi Ross,
Thank you for your patience on your first post here. First post gets moderated, but all your subsequent posts go straight through.
The process you describe for allopurinol treatment is almost perfect. The graduated program is so that your doctor can check your reaction to allopurinol during the first few weeks. Your uric acid tests should be accompanied by liver function and kidney function tests. This is not to alarm you – it’s a safety check, and is almost always OK.
You are lucky to have a doctor that cares, and understands the correct protocol. At least, she seems to. I have a complaint, and a minor observation.
The minor observation is that, the 100mg start and increment should be reduced to 50mg in some patients with chronic kidney disease. I’m hoping this doesn’t apply here, hence ‘minor.’ Clearly, it’s not minor if you fall in that category.
My complaint concerns ‘topping out at 300mg’ 300mg has no significance whatsoever for allopurinol dosing. If your allopurinol label mentions maximum dose, it is generally 800 or 900 mg per day, depending on the country you live in. For some people, 100 mg is enough, 300mg might be enough, but that is not important. What matters is that you get an allopurinol dose that makes your uric acid level safe. There is no point in taking allopurinol unless it reduces uric acid below 5mg/dL.
There are personal considerations relating to this. For example, I aimed ‘as low as possible’ in order to address visible tophi. We can discuss this further, if you want.
In any case, Ross, I hope you’ll return to update us on your progress. Few things in life make me happier than seeing someone permanently control their gout.
Wow, what a contrast to the previous post I responded to about starting gout treatment. That discussion is about starting treatment. This is about the opposite end of the first gout treatment cycle. How do you improve medication for gout, once treatment has stabilized.
Before I answer specific questions, as the help desk team mentioned, I’m not a doctor. Even if I were, it would be irresponsible to give medical advice. Professional medical decisions require physical examination, medical tests, and medical history. All I’ve got is random uric acid numbers with no measurement scales and no test dates.
Short answers to your questions are:
What is the risk of low UA ?
My answer: No risk.
Should I take tablet Day/yes Day/no ( in that case I will reached 40 per day, )
My answer: That could work if uric acid, liver function, and kidney function are being monitored by your doctor. It depends on the results of blood tests.
Evgeny, if you want more detailed explanations, please ask me. You sound as if you intend reducing medication for gout. That’s a great achievement, but is it too soon?
Hey, Francesca – no apologies needed. (should I have just said “No Dramas!” ?)
I like having lots of detail because it makes it easier for me to give the personal answers you deserve.I’m relieved your uric acid is well below .30 mmol/L. As you are due to be married soon, I’d recommend staying on your 300mg allopurinol per day. In some circumstance, I might advise aiming even lower. But, this might encourage more gout attacks from dissolving uric acid crystals. Normally, you might judge that it’s worth a little pain to get rid of the crystals quicker. I don’t think we’ll risk that for you 🙂
What we need to do, is track any pain symptoms that you have over the next few weeks. Your doctor is right in saying indomethacin as required. But, I want to be doubly sure that you have gout pain completely under control. There are extra things you can do if necessary. You need to be confident that gout pain can be completely controlled (trust me – it can!)
I’m not saying post here every day, but certainly post whenever you experience any gout symptoms, or any doubts. That way, we can be certain your big day will not get spoiled with gout pain.
If you post 2 or 3 times a week, you’ll keep this topic near the front of my mind. It’s up to you if you want to post an essay. I’ll enjoy reading it. But just a few words is OK.
Hi Francesca,
Thank you for your detailed post. There’s a very important fact missing. Without it, I’ll have to qualify everything I suggest with ‘if and maybe.’ That’s confusing for both of us.
Please post your uric acid test results, and I promise you a pain-free wedding.
A “blood test with normal results” is dangerously misleading. Nobody with an ounce of sense wants Normal Uric Acid. That’s why I keep the handy guide to uric acid levels in the right sidebar. (see Stop Gout With Safe Uric Acid Levels)
Every gout sufferer should join me with NUANT – Normal Uric Acid? No Thanks! We might persuade the medics to “Think Gout Safe” instead of normal uric acid.
Francesca, when I get the vital uric acid numbers, I’ll set you up with a personal gout profile. Then we can get your gout controlled properly.
Thanks Neil, that sounds sensible to me.
My only other comment would be that it seems a long time between each of your earlier blood test. It takes two weeks for allopurinol to reach it’s full effect, so that is the minimum time between tests. Anything beyond six weeks seems like missed opportunity to me. Maybe you can make future appointments monthly until you’ve got uric acid well below 0.30mmol/L.
Anyway, I look forward to your next report.
By the way, Neil, I should have asked about your fluid intake. Are you adequately hydrated? That means urine should be pale straw colored. Dehydration can restrict uric acid excretion.
Hi Neil, that’s a very interesting question about supporting allopurinol with probenecid (often sold under the Probalan brand). Allopurinol works by reducing the amount of uric acid our bodies produce. Probenecid works by encouraging our kidneys to excrete more uric acid in our urine.
Before I comment further, I must apologize, Neil. You originally submitted your question via my Gout Helpdesk (aka the orange Gout Help button). I have to admit I’ve been overwhelmed by the number of tickets in the helpdesk. I’m slowly working through them, but I always give priority to GoutPal members who post directly in the forums. I’ll mark your Helpdesk ticket as ‘Resolved’ and continue to help you in this forum.
Back to allopurinol with probenecid. This is a good idea for some patients, and if your doctor wants to try it, then it’s a good idea if it lowers your uric acid. Having said that, personally, I would ask for another allopurinol increase first.
The reason I say that is because to describe the level as “plateaued” based on one result seems premature to me. This is especially true when you have a significant burden of uric acid crystals. Blood tests only measure dissolved urate. So, if a large number of crystals start to dissolve, blood test results will show slightly higher levels. Your test results went from 0.40 to 0.37 with 150 mg allopurinol daily. This is a 7.5% fall. When I’m thinking about uric acid, I regard the uric acid range as more significant than an individual test result. In essence, any single test result can easily fluctuate by 10% from natural daily fluctuations, dissolving crystals, or both. I believe this is a possible explanation for your static uric acid level.
I’ve seen other cases of allopurinol being supported by probenecid. From memory, these have involved higher allopurinol doses, and static results over more than one increase.
Ultimately, it’s always best to discuss the pros and cons with your doctor and reach a mutually agreed strategy. There are other factors that your doctor might be aware of. Significantly, there might be reasons why he is reluctant to increase allopurinol beyond a relatively low dose. I always recommend that anyone taking any uric acid lowering treatment should combine uric acid blood tests with kidney function and liver function tests. It might be that the results of these persuade your doctor against increasing allopurinol further.
It’s great that your doctor realizes the need to get uric acid lower. It is definitely your best chance of reducing your urate burden, which will shrink your tophi.
I think you have to check that there are no special reasons for restricting your allopurinol dose. Then, the question is if it’s better to increase allopurinol, introduce probenecid, or both. That’s the discussion you need with your doctor.
I hope this helps. If not, please ask for clarification. Otherwise, I look forward to reading the outcome of your visit.
@mark-vannortwick prompted by doubts about correct allopurinol treatment, I’ve created an allopurinol treatment guide.
I think it needs a bit more work to be all-encompassing. I especially need to include links back to the science that justifies my approach. Nevertheless, it should be useful for all allopurinol patients, and those considering taking allopurinol.
I hope it helps.
Hi Mark, and Happy New Year to you. I hope we can make 2016 the year you finally get rid of all gout pain and discomfort.
It’s great to see that you are taking allopurinol. That is the easiest way for most people to resolve tophi. By getting your uric acid level low enough, all your worries about gout will disappear. But, it takes time.
You probably have around 14 years of uric acid crystals deposited all round your body. With allopurinol, you can cause these to dissolve, but you have to get uric acid as low as you can. The ‘toothpaste’ in your foot is certainly uric acid crystal deposits. Though you have no physical signs yet, you can be sure that uric acid crystals are spread round other parts of your body. The professional rheumatologists advice recommends aiming for lower than 5mg/dL until the uric acid crystal burden is mostly removed. Therefore, it makes sense to go for the maximum dose of allopurinol.
The maximum allopurinol dose is 800mg per day in USA, and 900mg in UK. Doctors have the ability to prescribe off-label doses of higher amounts, or they can also add probenecid, which works for gout patients who are under-excreters of uric acid.
Allopurinol dose should be increased slowly, with at least 2 weeks between tests. Blood tests should include kidney function, and liver function, as well as uric acid.
Pain control is required until most of the uric acid crystal burden has dissolved. I was prescribed preventative colchicine for two weeks around each allopurinol dose increase. Outside that time, I was prescribed additional colchicine to take at the first sign of a gout attack. Even with the colchicine, some gout attacks might start. In that case, your Nabumetone is useful, and you might get even better relief if Nabumetone is supplemented with a compatible pain-blocker. Ask your doctor for a safe combination that allows you to keep active. Gentle exercise resolves gout pain quicker. It will also help you lose weight. Gradual weight loss (say 2 pounds a week) is one of the best things you can do for your gout.
Mark, I hope this helps as a starting point. Every year, I help people control their gout, and allopurinol is usually the easiest and safest way to do that. It’s very important to control uric acid properly, and also to understand that pain control is vital until old uric acid crystals are dissolved.
I need more information to be able to help you.
Please login and let us know more about you and your gout history.
You should act quickly. Uric acid above 7mg/dL is certainly dangerous.
What have you tried so far?
What does your doctor say about your gout and your uric acid level?My immediate thought is: “what dose of colchicine were you prescribed?”
There have been some very bad dosing practices. They should have died out by now. Also, colchicine by itself is rarely enough, especially once a gout attack has started.
It is perfectly wise to start allopurinol immediately, but you must do it right. Back in 2012, I published Start Allopurinol Quickly, But Carefully. Scientists had just proved that allopurinol could start during a gout flare. It makes no difference to immediate gout flares. But, the sooner you start allopurinol, the faster you get rid of gout. Unfortunately, there are also bad dosing practices with allopurinol. I mention them in that article.
With gout, it is never good enough to “have tried colchicine.” It is never right to simply “start taking allopurinol.”
Dose is vital.
Get dose right, and gout is easy to manage, and quickly controlled. Get dose wrong, and it might be useless, or even make gout worse.
Joy, I urge you to post more information about your doses of colchicine and allopurinol. Also, colchicine alone is not sufficient once an attack has started. What other pain relief has been prescribed?
Some very wise words from Yakpi:
Luckily I have a good doctor and was able to get on 300mg Allopurinol that I have been taking since then. I don’t know why some fear taking this miracle drug, while at the same time be OK with popping vitamins daily. It is very clean with no side effects for most. I can eat and drink whatever I want and have never had a flair up since I started.
I understand some of the reasons why people deny the correct treatment, but I’ve never seen one reason that is justified.
Even if you don’t feel like taking action today, at least discuss your fears. Always be aware: Untreated excess uric acid is a killer! Also, especially if you are in doubt, read Can Gout Kill You?
Thanks Yakpi. I hope you’ve inspired gout sufferers to start their journey to Gout Freedom.