Thalassemia, gout, uric acid, and allopurinol

[d q]

Hello everyone,

I hope the festive period has got you all excited..!

I’d be really grateful if I could get some advice from the people here as the internet can be extremely daunting with all the varying suggestions and treatment plans.
In 2015 I had what one would have assumed to be a gout attack (Urate was at 614ummol). All the usual symptoms, went to A+E and got a dose of Naproxen and was told to visit my GP to obtain further supplies and to speak with her with regards to be referred to a Rheumatologist. That is exactly what I did and I finally got to see him. After explaining the entire situation to him he explained that it was more than likely to be gout with such a high urate level. I also explained I have thalassemia which causes blood cells to die quicker than a healthy person. He then explained to me that that is what is probably causing the high Uric Acid thus the acute attack as cells are dying much faster and the turnover of blood is much higher this in turn is causing massive release of Uric Acid because each cell that dies releases a little Uric Acid as such. This seems to make perfect sense.

He told me there is pretty much two ways of going about this, one is to take NSAID’s when I feel an attack is about to happen or two is to start a medication called Allopurinol. He advised that it may be in my interest to see if another attack comes along before going onto lifelong medication. This is exactly what I did and exactly one year later I got another attack. I took the Naproxen which helped significantly with the pain and the time in which the attack lasted.
The worry that another attack could come along at any time and the fact that Naproxen didn’t exactly stop the attack but reduced it was enough for me to decide to start Allopurinol.
I waited a few months before starting and finally took the plunge. The start dose is 100mg and I will be tested for Urate levels in mid-January to adjust the dose accordingly.

My concerns are the following:

1. Why does one have to take Allopurinol for the rest of their life if it take it took 34 years for my first attack to strike? I mean can’t one take the medication for 3 years, once all the crystals are dissolved, stop the medication and deal with the problem after another 20 years or whatever time it takes to build up again?

2. I did lots of research about Allopurinol and if will actually help in my condition (thalassemia) however information isn’t that great on the internet. I did discuss it with my haematologist which ironically also has gout and takes Allopurinol who says its fine to go onto it and that he hasn’t had an attack since. Does anyone know anything about Thalassemia and Gout / Uric Acid?

3. Lastly, I’ve read a lot about adjusting lifestyle to suit a low purine diet in order to reduce levels but my Rheumatologist said that all these lifestyle changes will make a maximum of 10% difference and won’t really help in most gout cases. Is this true?

4. How does Allopurinol actually work? I mean I know it prevents the conversation of Urate into Uric Acid but since it prevents the conversion how is the ‘unconverted’ Uric Acid flushed from the body? Is the unconverted Uric Acid bad?

5. Does anyone know any good Rheumatologists in the UK / London?

Sorry for the extremely long post but I’m just coming to terms with it all and found this site / forum to be the most informative site.

Thank you all for taking the time to read and help.

Regards,
James

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Is Thalassemia causing your gout?

Click image for thalassemia slideshow details.

[Keith Taylor]

Thanks James,

Also, thanks for reposting here from the Helpdesk. It’s saved me a job. That might not sound significant, but every little helps when you’ve got presents to wrap.

I’ll give short answers for now. Then, people can ask for more information if they need clarification.

1. Yes, you can do that. At least one eminent rheumatologist has suggested that intermittent uric-acid lowering treatment will become common in future. From memory, he was suggesting annual treatment for a few weeks.

There are dangers with this approach that need to be carefully managed. The biggest hidden danger of excess uric acid is joint damage. Al joint tissues are susceptible. I wrote about tendon damage in gout. But, cartilage and bone will suffer the same fate.

Therefore, the intermittent allopurinol strategy could avoid gout attacks. But, it could raise the risk of bone damage. We also now understand heart valve issues better where they are attacked by tophi. I’m not certain how soon that becomes an issue, when uric acid rises above the safe level. Current research is limited. However, now that pathologists are starting to understand the fatal nature of gut, this issue might get more attention.

To me, daily allopurinol seems a small price to pay for heart and joint safety.

2. That seems to add weight to my response to 1. If you share the links of what you’ve found so far about “about Thalassemia and Gout / Uric Acid?” I might be able to do more research.

3. Perfectly true. Wise rheumatologist. But, gout sufferers need personal management. So, purine intake control can work in rare cases. If the person’s gout is managed properly.

4. No, this is about the conversion of purines into Uric acid production by our enzyme, xanthine oxidase. Allopurinol inhibits that enzyme. Unconverted purines are pissed away.

5. No, sorry.

I hope that helps, James. Please feel free to ask for clarification. And, post more questions as you think of them.

[d q]

Hi Keith,

Hope your well mate – Sorry for the delayed response. It’s been a while since I’ve had time to sit down and focus on a detailed response and I also wanted to wait until those Mod-January tests. OK, here goes with the answers / updates:

1. I asked my rheumatologist about ‘start/stop’ Allopurinol treatment plan and he explained that a trial was conducted and most people that did stop treatment eventually got an attack between 4-24 months later. I asked him to elaborate further as to why it took so many years to build up and yet after stopping treatment all it takes is just 4/24 months before an attack occurred. He’s answer was as simple as ‘our kidney’s become less efficient with age’ what we could excrete in our teens/twenties is not the same as the kidney can excrete in our thirties and over. He basically said we get older, we get less efficient. I’m not too sure if its as simple as that but that’s apparently why it takes just 4 to 24 months for an attack to strike back.

2. Links to reasonably useful information I have are:
1) http://williams.medicine.wisc.edu/thal_intermedia.pdf
2) https://books.google.co.uk/books?id=5UcgAwAAQBAJ&pg=PA376&lpg=PA376&dq=thalassemia+intermedia+and+gout&source=bl&ots=6pDb6ruqLq&sig=-FRCFE0F0nvJBvzaV1-VAvlQGso&hl=en&sa=X&ved=0ahUKEwjH0cafx9bRAhXJC8AKHZUaBtk4ChDoAQghMAE#v=onepage&q=thalassemia%20intermedia%20and%20gout&f=false

3. I re-asked the question about diet and gout and to cut a long story short, take Allopurinol and you should be able to enjoy most foods in moderation without having to count life by the minute and avoiding all sorts.

4. Perfect – got you.

5. No worries mate thanks.

With regards to numbers, so after one month on 100mg daily my levels have dropped to 555 umol/L and as a result he has increased my daily dose to 200mg daily in attempt to get me below 360 umol/L. We will retest blood levels in March.

He asked me again if I would like to take Colchicine as a precaution as we increase the dose to find the right dosage for me but I refused and said if an attack should occur during the dose increase I will just deal with it using Naproxen and he said that’s OK too.

Do people starting Allopurinol always get an attack as they increase the dose or is this not always the case if its done slowly and carefully?

Thanks Keith! 🙂

[Keith Taylor]

Hey James, that was well worth waiting for! 😀

First, a massive thank you for inspiring me to write Don’t be a Gout Statistic. Please note, that is not a personal response to you. It is some general thoughts I have about the value of gout statistics. Ie, gout statistics are very important in the context of general gout guidelines. But, they are mere pointers for investigation and action, when it comes to personal gout management plans.

So, for point (1), I can’t agree with your rheumatologist. That does not make him wrong. But, we have different reference points. I don’t want, or need, to discuss the statistics with your rheumy. What matters to me is, are you happy with allopurinol for life?

You might see I’ve flagged my allopurinol vacation article for review. I need to clarify general principles. But, beyond general principles, you need to be happy with your personal treatment plan. Of course, the idea of a break from allopurinol is a future concern. First, you must demonstrate that you have tight control over uric acid. And, your uric acid burden needs to be considerably reduced before you can contemplate an allopurinol vacation.

It’s up to you if you want to discuss it now, or in a few months time.

2) Thank you for those links. I’m short of time to investigate them fully at the moment. If you, or anyone else wants to prioritize this, I suggest a separate topic.

3) “take Allopurinol and you should be able to enjoy most foods in moderation without having to count life by the minute and avoiding all sorts.”

I don’t think avoiding certain foods is ever the answer. But, we all (gout sufferers) do it. What I learned most from controlling uric acid is that diet is very important for general health. No point in controlling gout, only to die of a heart attack.

I remember reading that allopurinol stops all uric acid production from food intake. And, it stops about half of uric acid production from our own flesh. So, for gout diet, there is no purine consideration when taking the right dose of allopurinol. And, the gout risks from being overweight are halved.

But, there’s more to life than gout control. Which is why I should spend more of my time adopting and promoting EFSEP. But, that’s a different topic.

Gout Pain Control
If “as required” gout pain control works for you, I think that’s best. Personally, I also preferred this to preventative gout pain medication.

The most important thing for all gout sufferers is to feel comfortable with their personal gout pain control therapy. Then, gout attacks are much less fearful. And, your last question about gout attack risks on allopurinol become less important.

In principle, I answered that in the article you inspired. But, on a personal level, I’d need much more precise information, James. Risk of gout flare depends entirely on individual uric acid levels. Both current, and historic. Historic uric acid levels determine the size of your uric acid burden. That, in turn, determines part of the risk factor for gout attacks. But, the risk is in 2 parts: risk from new crystals forming. And, risk from old crystals dissolving.

The risk from the uric acid lowering part of the equation only comes into effect when uric acid crystals start to dissolve. At core body temperature, this is 400 μmol/L (6.8 mg/dL). Lower at the joints due to temperature, so certainly not a consideration at this stage in your gout recovery.

[skip next 2 paragraphs if this is getting boring]

Once you lower uric acid to therapeutic levels, you might be able to titrate allopurinol treatment to slow down the rate at which old crystals dissolve. In theory, that would reduce the risk of gout flares from allopurinol. But, you also have to consider the lifetime risk. This is an exercise in improbable uric acid lowering measurement, and incredibly complex gout flare risk assessment. My mind boggles at the complexity of risk assessment at each joint with the range of differential temperatures; uric acid burden; and localized uric acid blood concentration.

Academically, it might be an interesting project. In practical terms, the way to reduce the risk of gout flares is to aim as low as possible for uric acid. And, if you’ve tested positive for low uric acid excretion rates, supplement allopurinol with uricosuric gout medicine.

Sorry, my last few paragraphs got outrageously technical. In short:
A. Be confident with gout pain control.
B. Get uric acid as low as possible.
C. Stop worrying about gout flare risks.

Thanks again, James, for your continuing support of GoutPal. I look forward to your next inspiring contributions.

[George Civitelli]

Started taking allapuronal and have flair ups

Elbow and hand

[d q]

Hi Keith,

I’d like to start by thanking you for all your advice / information.
This site and forum has provided invaluable advice for us gout sufferers.

With regards to our thread;

1. A tablet or two of Allopurinol a day for life to keep gout and further complications at bay is certainly a very small price to play. I’m not quite sure what the ‘long long’ term effects of Allopurinol is on the body beyond the immediate treatment start side effects but let’s hope that these are not anything to worry about.

2. I’ve had another chat with my haematologist about the situation and he has confirmed that there should be no issues with me taking Allopurinol however anyone who does have thalassemia should definitely consult their haematologist first to be sure as their conditions may differ.

3. Thanks for this. I am however a little curios as to what you mean by ‘uric acid produced by our own flesh (do you mean by cell breakdown / cell death)? I was under the impression that uric acid in foods isn’t that much anyway so this will impact minimally and most uric acid is produced during cell death. Can you explain a little further?

4. Speaking of pain control, I was hit with a gout attack yesterday and immediately started Naproxen 500mg twice a day and it seems as if I have dodged the bullet. The pain is very minor and the inflammation seems to be coming down all in just 2 days. Like you have mentioned, it is imperative to detect an attack as soon as possible and strike back with all your medication artillery to keep the attack as small as possible.

Could the above attack be the result of my recent Allopurinol dose increase? I went from 100mg daily to 200mg daily? My Uric Acid levels on 100mg was 555 ummol and my rheumatologist increased this dose to 200mg about 2 weeks ago to drop uric acid levels further. Could it be that the dose increase caused some crystal dissolving to occur? Will this be the first of many more to come?

Once again, thank you so much Keith for all your help.
You are amongst the best contributions to the gout arthritis industry.

Regards,
James

[Keith Taylor]

Hey, thanks again James. Your closing comments are very welcome indeed. In fact, all your posts are always welcome.

On point 3: yes, uric acid is produced from cell breakdown. So, when we eat animal flesh, we normally produce some uric acid. But, allopurinol will stop that process. For some reason that I don’t quite understand, allopurinol seems less effective when inhibiting uric acid production from cell breakdown from our own bodies. I only mention it as a general point. In practical terms, it means that allopurinol takers do not need to worry about special diet restrictions for gout. But, we should always remember that being overweight will increase uric acid production. That’s usually easily managed with increased allopurinol dose.

So, my main concern, personally, is: I don’t want to have gout under control, but suffer other health problems by being overweight. Or, other health problems from having too much animal flesh in my diet. The answer, for me is I do “enjoy most foods in moderation”. And, I don’t “count life by the minute and avoid[ing] all sorts.” I try to count life by the week, and adjust my grocery shopping to my healthy requirements. Nothing to do with gout really – just my EFSEP project to:
– Eat Food.
– Sufficient.
– Especially Plants.

I’m glad you are being advised that long term risks of allopurinol are not worth worrying about. I’ve never seen any research that raises concern. But, I’ve seen lots of horror from not taking allopurinol (or not finding another way to make uric acid safe).

I’m also glad that you’ve got the knack of spotting gout attacks early, and stopping them. Without a current blood test result, I can’t say if it’s uric acid crystal dissolving from your allopurinol dose increase. If you’re down to 300 or lower, it’s almost certainly uric acid crystals dissolving. If you’re still over 400, it’s almost certainly new uric acid crystals forming. Anything in between is a risk assessment that depends on secondary factors, such as weather, temperature, and inflammation factors in meals (very complicated).

Take care James. And, look forward to Gout Freedom in 2017! 😀

[d q]

Hi Keith,

Hope your well mate.

I’ve got a little question on point 3 that I’m hoping you may be able to help with. When you mention that uric acid is produced from animal flesh and cell breakdown but Allopurinol it is not as effective on cell breakdown and that in most cases not much uric acid is produced by food consumption then were does the efficiency / solution come from?

The reason I am asking is because most of my uric acid is produced as a result of cell breakdown (blood cells do not live as long in thalassemia as other people) so I am a little confused as to whenever or not Allopurinol will help much?

The other concern I had was about my recent (and ongoing) gout flare. With regards to the pain and inflammation this has significantly improved thankfully however since going on 200mg daily I haven’t had a recent blood test (it’s only been about 14 days on this new dose). Should I wait a little longer before having another blood test or is 2 weeks too little to see a change? I remember earlier on in the thread you mentioned that 400 ummo/l was the magic number with regards to the start of dissolving crystals but your most recent message states 300 ummo/l so I was a little worried that the gout is actually getting worse with new crystals forming rather then old ones dissolving giving me my most recent attack. (Baring in mind this attack was extremely less painful and sever)?

Weather and temperature, would it be advisable to wear socks whilst sleeping for gout sufferers, sleep cooler or warmer? I tend to like sleeping on the cooler side 🙁

Thanks again Keith, you are fantastic!

Regards,
James

[Keith Taylor]

Hi James,

I fear I may have infected you with my tendency to overthink simple situations by analyzing what-if scenarios before they’ve happened.

I appreciate your concerns regarding cell breakdown from thalassemia. But, allopurinol has proved to be effective for uric acid reduction whatever the cause. Therefore, I think we should wait for blood test results.

Speaking of which, I have a standard view of the time between starting, or changing, allopurinol dose and retesting. 2 weeks is the minimum time to allow uric acid to stabilize. In my opinion, it’s best to go for 2 week intervals to get to the right allopurinol dose quickest. 4 weeks is common. Anything longer than 6 weeks indicates lack of effort.

Then, we move to interpreting the uric acid blood test results. I’m sorry for any confusion. But, 400 μmol/L is not a magic number. It’s the announcer, or magicians assistant, letting you know that magic is on it’s way.

In the lab, scientists have shown that uric acid crystals form at standard human body temperature when uric acid is 400 μmol/L. But, real life human uric acid tests are just a snapshot of an ever-changing environment. Take a test 4 hours later, and you’ll get a different result. When we account for the fact that joint temperatures are lower, the long term target is 300. That way, we can be sure uric acid is safe. Unless, exposure to prolonged low temperature is contributing to gout. In such cases, we can see that gout can occur at 268 μmol/L (4.5 mg/dL), if joint temperature is 30 centigrade (86 fahrenheit).

More importantly, during early uric acid lowering therapy, we get tremendous benefit from getting uric acid as low as possible. So, for me, the magic number would be your uric acid blood test result when you were on maximum allopurinol dose. Obviously (I hope), increased allopurinol doses should be monitored by blood tests every 2-4 weeks. Tests must be for kidney function and liver function, as well as uric acid.

Unfortunately, that type of maximum treatment can be difficult to sell to doctors. It depends on individual circumstances. But, at 300 μmol/L most gout sufferers will be safe.

[Patrick]

Man, great dialogue on this thread. It should be a must read for the entire forum. Not much to add, but I will say this DQ (and I’m not nearly the Subject Matter Expert as Keith) but as a “regular Joe” here are a few things I do to protect myself.

First off, I eat sensibly. Animal proteins in moderation with lots of vegetables. I never thought I’d ever be such a “salad guy” but I am. It helps with keeping excess weight off, which in turn helps with your overall health and well being.

Exercise…even it is just a walk with your significant other, or with your dog. Get your heart rate up and keep it up for 30 minutes. Also, hydrate. Limit your sugar intake, which includes Fructose and Sucrose. Drop the Cokes and Energy Drinks and substitute water with lemon or cucumber. Alcohol in moderation.

As for Gout and Gout management, here is what I do. I had been going to get my blood screened every 4 to 6 weeks. Since my labs have been stable, my Rheumotologist has scaled that back to every 12-14 weeks now, but every blood test includes a kidney and liver function test, as well as my Uric Acid screen. I also keep a 6 day Methylprednisone pack on hand. Just in case. I travel a lot, so if I DO get a flare up, I kill it immediately with Methylprednisone, Colchicine and my regular 300mg of Allopurinol. More often than not, it’s gone in 2-4 hours. Again, I only keep the 6 day of Methylprednisone as a precaution. I haven’t needed to use them in over 8 months but one can never be too cautious.

That’s my remedy and it works for me. You may choose other ways. Keep up the great dialogue and good luck.

[Keith Taylor]

Great thoughts, Patrick. But how do you become a salad guy in the States?

Maybe it’s better on the West Coast. But, down South, the nearest thing to salad is ketchup on your fries! 😮

[d q]

Hi Patrick / Keith,

I wanted to start by saying you guys are absolutely fantastic.
This forum has answered nearly all my worries and woes about gout.

Just a quick update with regards to the situation:

Firstly its great news to hear that Allopurinol also helps with cell breakdown. I was a little worried that it had little to no impact. I’ve also today received a letter from my haematologist for my recent visit saying he is glad that I have started Allopurinol. Thanks Keith for that extra reassurance 🙂

Thanks for the info of the kidney and liver function test Patrick. I will be sure to highlight it to my rheumatologist next time I see him. He wants to see me again on the 31st May and have a blood test just before which is ridiculous if you ask me. Lets say those uric acid test results come back still a little high before I see him. Waiting from now until the 31st May only to increase just to increase the dose is just my rheumatologist being lazy and should have dealt with the problem sooner. I will be seeing my haematologist again soon and will ask him to measure my uric acid levels before so that if they are high I will email my rheumatologist directly asking him to increase the dose.

With regards to eating habits, I think i’m usually very healthy on that front.
I hardly ever drink sugared soda. I drink a lot of yogurt though, is that ok?

Meat is amongst the lowest on my list of foods, I eat that about once a week but I eat chicken breast almost daily (should I be concerned)?.

I do eat a lot of though is chilli in fresh form. I chop lots of chilis and put them into olive oil, garlic, ginger and lemon juice and eat them regularly. Are any of those ingredients to worry about?

I eat grapes daily before going to bed but so much information on the internet contradics and conflicts itself (especially guys trying to sell ebooks).
So I would like advice from you experts if grapes daily are ok?

Finally, I’m a little confused about crystallisation and its effects.
I mean, if crystals form and get caught in joints during lower temperatures which causes the painful inflammatory response yet having warm feet prevents this then why isn’t this published or made more clear at rheumatology appointments. What is even more confusing is the fact that advise during a gout attack is to put ice packs to ease the pain which doesn’t make sense as it drops temperatures further which may cause further crystallisations?

It should be a very common practise for a rheumatologist to advise accordingly.

Thanks Keith and Patrick! 🙂

[Patrick]

Great thoughts, Patrick. But how do you become a salad guy in the States?

Maybe it’s better on the West Coast. But, down South, the nearest thing to salad is ketchup on your fries! 😮

Dude, I’m a West Coast, southern California guy. Salad is a staple food here. Everybody eats it, that’s how we keep our beach bodies (sarcasm intended..) But we also have In and Out Burger here. I treat myself to that once in a great while.

DQ–to your question. Yogurt, fruits and vegetables, chilies, etc., from all I’ve read should be no issue. Some nuts and beans can be problematic (per SOME studies) but you have to take information you gather from the internet with a grain of salt. Most info is old, outdated and downright mythical.

Here is the cold hard fact. Get in full control of your Uric Acid, which includes getting and maintaining it as low as possible, and you SHOULD be able to lead a very normal life. That includes eating habits. But remember, as a Gout sufferer you are always in danger if you don’t make at least some wholesale changes. In no way am I saying you need to lead a “meat free, booze free, sugar free, vegan lifestyle” but everything in moderation. That’s the key, buddy.

[Keith Taylor]

First, imagine I copied and pasted everything Salad Guy said. (that’s your official name now, Patrick 😉 ).

James, I love your opening sentences about taking control of your uric acid lowering treatment. I find it very empowering to discuss treatment with doctors, rather than simply accepting what they say. Of course, the real value comes when you realize you contributed to your own gout recovery. That will not be long.

I’m also amazed by the medical attitude to icing. They will say, if icing brings relief (which it often does), then that justifies using it. But, there is growing evidence my jaded experience to suggest that some doctors turn their brains off after qualifying. But, I should stop being so negative. What’s most important is personal informed choice.

[d q]

Hi Keith / Patrick,

Thanks for all your help – good to see my eating habits aren’t too bad.

So daily or every other day of chicken breast and chilli is definitely ok?
Oh and one other thing, I was wondering if it was effective to take my daily Allopurinol dose with a cup of milk rather then water, I tend to have a coffee latte in the morning with breakfast? I mean does it have to be water?

Thanks again guys!
James

[Patrick]

Oh and one other thing, I was wondering if it was effective to take my daily Allopurinol dose with a cup of milk rather then water, I tend to have a coffee latte in the morning with breakfast? I mean does it have to be water?

Thanks again guys!
James

You can take your meds with anything. Milk is beneficial for Gout sufferers. So is coffee. Take your meds with whatever you feel like.

[d q]

Thanks Patrick and Keith! 🙂

You guys are fantastic!

[Keith Taylor]

It’s been a long time coming @d-q but I finally got a bit further with

Does anyone know anything about Thalassemia and Gout / Uric Acid?

To the extent that I found a slideshow about thalassemia that mentions gout and uric acid. So I used that to illustrate this topic (above).

So despite this being your historic first topic, it looks like we’ve come full circle. Because your most recent posts indicate your strong hope that new medication for your underlying condition is your best chance of curing secondary gout.

I realize I’m a bit slow. But it’s all starting to make sense now! 😀

[d q]

@Keith – I will be sure to keep you updated on the new medication front. I think I’ll keep that in a separate post in order to keep things tidy and then you can consolidate and edit as you deem beneficial for everyone. For that matter, my next blood test after being on this medication is next week. I am super excited to see if it has made any difference. I’m not raising my hopes just yet however.

On a separate note;
Thank you for everything Keith, honestly, you are a true gentleman.

[Keith Taylor]

Thank you for everything Keith, honestly, you are a true gentleman.

Thank you for your kind words, sir. How did you know? 😀

A True Gentleman takes the weight on his elbows!

[d q]

Thank you for your kind words, sir. How did you know? 😀

Keeping ultra concise, let’s just say you made a positive impact on many many people’s lives 🙂

[Author]

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