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Hi Patrick / Keith

Thank you both for your encouraging posts.
I did my blood test today and I’ll have the results on Tuesday. We’ll know were we stand then. It’s more then likely they will increase the dose but we’ll find out soon.

I was just wondering and wanted to confirm, is it when crystals form and get stuck in joints or when crystals break away from joints does inflammation occur and the pain start? The reason I’m asking is because I was curious as to whenever it’s crystals breaking away from let’s say ankles and getting trapped in other joints (like my elbow) or if it’s just crystals breaking from the same plac and causing pain there?

How long or how many attacks did you have to endure until you got to your therapeutic stable doses?

Thanks!

[d q]

Is this joint pain related to Gout?

Hi Patrick / Keith,

I was just wondering as I’m now getting pain in various joints but more specifically my right elbow joint. The rest are all pretty much ok. I haven’t taken any anti-inflamatories as of yet as I seem to be dealing with the pain reasonably well despite it actually being quiet painful.

My question is similar to Mauri’s. I started on 100mg and my UA dropped from 580 to 555 after a month (not much). My rheumatologist increased my dose about 6 weeks ago to 200mg. I’ll be taking a blood test this week and should have the results early next week. As you say Patrick I also don’t think 200mgs will be enough so I think the dose will probably be increased further to 300mgs.

Could these joint pains be a result of crystals dissolving despite not yet finding a stable therapeutic dose? I mean will crystals still dissolve at lower then a patients usual UA (originally 580 in my case) but far greater then the 350 safe limit? Or are these pains completely unrelated?

Thanks 🙂

[d q]

Hi Patrick,

Thanks for the valuable information.

I think that sleep apnea may also have to do with oxygen levels and premature ageing / stress and as a result may contribute to gout or generally higher uric acid levels.

I too am not a doctor but as we both agree sleep plays such an important role in our general health and lack of sleep (sleep deprivation) or even low quality sleep can cause so many general issues that may even relate back to uric acid / gout that even scientists have ye to explore / discover.

Again I am not a doctor though.

[d q]

This has been an extremely interesting post as I’m still in the “finding the right dose” stage and currently on 200mg once a day which I doubt will be enough to bring my 570ummol down to safe levels. 100mg brought that down to 555ummol only. Let’s see what 200mgs does when I get tested next week or so.

Thanks for the interesting question Mauri and the informative answer Keith.

James

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What a lucky guy you are! I just don’t have the courage to get myself on a snowboard 🙂

Yikes, $4500 for the study! I’m based in the UK so at the current rates that’s probably around £4000.

Just out of interest Patrick, why would sleep apnea and overweight people be higher gout linked? I thought that the general idea is lack of sleep being the actual disturbing factor?

p.s. Is there any specific symptoms that immediately give a pretty good idea that someone may have sleep apnea.

Thanks mate. 🙂

[d q]

Hello Keith,

Believe it or not I completely forgot that time is a huge limiting factor with regards to the amount of advice that can be provided during a consultation.

With regards to Sleep Apnea, I’ve never had myself checked / diagnosed however to be honest I think a significant proportion of my sleep problems have only recently become an issue and are a result of “worry or stress” of a Gout flare possibility when waking up. (Ridiculous I know). 🙂

I’ve started using an iPhone App to monitor my sleep over the next month or so to better understand what could be the problem. Making small adjustments to see what can improve sleep. I can guarantee that being in the IT industry doesn’t help however 🙂

Regards,
James

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Hi Keith,

With regards to the second paragraph, it seems that rheumatologists never give all this information out. They just give the very basic and prescribe medication. It would be nice if they discussed sleep patterns and maybe a little information on self test uric acid kits.

Funny actually as I’ve always preferred sleeping on my front but it makes me bend my toes more (worried that causes attacks) so I started avoiding sleeping in that position and moved over to my back but after reading those last articles it seems as sleeping on your side is the ideal compromise.

Ive recently started using sleep monitoring apps to see which time and position works best for me.

Regards,
James

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Hi JQ,

In the UK we have PL numbers on boxes which means medications must match precisely in formula in order to be considered or categorised as “the same”. Maybe they have a similar pattern or method in the USA you could check?

James

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Hi Deana,

Being a thalasemmia patient we have to constantly monitor our iron levels.
How are you checking iron levels, you need to be sure you are doing the right blood tests as ferritin levels alone are not enough for accurate results. There are techniques / medication to remove excess iron from the body like ‘Chelton therapy’ which you can read or ask your haematologist about. Keep us informed on how things go.

James

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Yes, it does sort of make sense (sleep apnea) and uric acid levels.
I’m definitely going to read that technical article. It seems interesting. My sleeping patterns aren’t great being in the IT industry and it would be nice to know if resolving sleep problems could potentially help with attack frequencies.

I don’t know if rheumatologists these days are just being lazy in trying to assist and make information more readily available in consultations or if they are looking for more ways to make money by trying to maintain as many visits by patients as possible.

Thanks Keith!

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Hi Gavin,

A good explanation is here:

Why Not Talk About Urate?

by Keith Taylor himself 🙂

James

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Thanks Patrick and Keith! 🙂

You guys are fantastic!

[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

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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! 🙂

[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

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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

[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! 🙂

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