[d q]

I realize I have advantages. I’m not the one who used to argue that our situations were similar. 🙂
Yes sir, but we did share a few similar symptoms! That you cannot deny! 🙂

About enjoying life, there have been times when I wanted to die because of my joint troubles.

@nobody – believe me mate I know exactly what you mean. It was a feeling of torture and wanting to give in, it was horrible pal. I have to admit, since my last gout attack a few weeks ago, both my feet have been feeling much better. I think its very much a question of keeping your UA under 350 for a period of time. That’s were all that toxic junk starts to clear out of muscles too. I have every bit of belief now that keeping it at this level is as you say beginning to show its advantages.

Not sure what “saving”
I knew that wasn’t the right word to use! my bad. Let’s say the blood meds don’t really have a positive impact on UA (next blood test in 10 days), would being at 343ummol generally be better then taking more Febux to get down to let’s say 310 or 315ummol? In any case I believe you’ve answered that by saying it depends on your symptoms which makes sense. I’m assuming symptoms meaning ongoing pain and gout attacks? Reason I am asking is aren’t attacks likely in the first few years – so how does one generally decide if sub 350 is working in a few months? – This would really help knowing.

Now I only need to find some other metabolic tweak to deal with insomnia.
My dad suffers the exact same issue, can’t sleep before 4am. I also get the occasional few days depending on stress and family. I try and read (a book) as that really helps sometimes. Have you tried the cocoa and milk approach? 🙂

[d q]

to worry less and enjoy life.
You know mate, I should apply that more. I’ve been really set back this year. I’ve had ongoing pain, a few disappointing results, and maybe even deflated at times.

One advantage you have over me is that it looks like you can handle serious NSAID dosage. Yet it seems you aren’t taking full advantage of that bit of good luck.

In all honesty pal, your probably right with regards to the “not taking full advantage of NSAID” I’m assuming you mean for the lingering pain I currently endure? I only ever took Colchicine once in my gout attack history and it reduced the last attack miraculously to only 4 days. I’m guessing applying maximum dose Naproxen would probably bring that down to 2 days or something?
p.s. Believe me you have many many more advantages.

Dropping SUA under 300 hasn’t been shown to dissolve old UA crystals anywhere as quickly as we’d like. That’s the problem. The same goes for 250 and so forth.

Well that’s a relief, at least we’re not trailing along hoping and hoping to get lower UA levels for those “many benefits”. In your opinion and out of curiosity would opting for 340ummol be better then opting for 100mgs of Febux to gain maybe +/-30 ummol less (p.s. I’m just assuming that UA level saving)?

I don’t quite subscribe to this “gout hell” notion in the first place but for what it’s worth I think it would mostly be a concern when your tests aren’t consistently under 400.

Interesting comment. I mean I can see the logic behind gout hell though. It does make sense don’t you think? On the dangerous edge of crystallise and dissolve sort of level.

The effectiveness of your “buffer” is also going to depend on your body’s excretion abilities (urine isn’t the only pathway). So possibly my 350 is your 320? Shit’s complicated.

I love that comment.. I have to admit hitting the good ol’ loo does bring relief on every level..! I believe we excrete 1/3 of our UA through crapping! 🙂

As if I haven’t I asked you enough already in this post so I thought I’d make the last bit informational only.. That abdominal pain I was having? It seems to have become a fart in the wind. Thanks to you in one way or another 🙂

[d q]

@nobody – Hello mate. Yep, it is more then just the one 🙂 I’ve decided to keep everything just the way they are for now. If the new medication starts to work on hemo it would show results from around the third dose which is what I’ll be on in a few weeks. I’ll definitely be having another blood test in between however, so I’ll have an update with UA levels then.

Dropping levels to under 300 wouldn’t magically just protect you? That’s bizarre? I would have thought at sub 300 crystals can’t physically be created in the first instance? Educate me on this on buddy?

It’s mostly recommended for people who used to have worse gout than us. Ahh, that’s very interesting! I think I get you. I’m assuming you mean a high UA for a longer period?

patience and a powerful set of emergency pills just in case.
Patience – Gout amongst a very few other life experiences has overtaken all other patience teaching exercises in life. So I guess a few more months or years can’t destroy me further. I wish there was an accurate way of predicting the time left.

Powerful set of emergency pills – Oh no.. why is that? I’m assuming because of the lower UA levels attacks will become imminent or is it because of the low buffer between “Good and Gout Hell”. Advise me on this one pal..?

Finally, just out of curiosity, when would one generally be concerned about “gout hell” at the 388 result?

You are the man nobody! 🙂

[d q]

@nobody @keith

Just an update on this update – I took the blood test a few days ago and the UA levels have dropped further to 343 ummol without me making a single dose change.

18th April – 388 ummol (60mgs)
23rd May – 413 ummol (80mgs) <— Strange result
18th June – 377 ummol (80mgs)
11th July – 360 ummol (80mgs)
15th August – 343 ummol (80mgs)

Liver markers and Kidney markers are fine so far. I doubt its the new blood medication working because the targetted haematological values haven’t changed yet as they generally require a little more time under normal circumstances (unless for some reason the UA levels are getting impacted first).

So that leaves me in a really tricky situation!

Why are UA levels continuing to fall since May even without increasing my dose?
Is this an example of less crystals to dissolve or just a lucky one off?
I was preparing to start 100mgs and now I’m really not so sure what to do.
Maybe get tested again? :/

I really don’t want to end up in the crystallise/dissolve gout hell situation?

Thanks guys.

[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 🙂

[d q]

@Keith – Your comments make very valid points

I have an alternate view. Unfortunately, I can’t find the exact studies to back up my theory. But I believe that long-term gout patients generally have a health advantage. Because they are more likely to get regular health checks.

You know, I never once thought of it like that. I’m generally watched over by my haematologist but it does make perfect sense.

Primarily because most doctors can’t get past the mental block of increasing dose once patients get average uric acid scores around 400-420

This is absolutely without a doubt spot on as my second opinion rheumatologist was “happy to see that my uric acid levels are now within the normal range at 413ummol” -What a load of garbage.

Is it time to worry less and get back to “5 years ago I didn’t know what gout even was and enjoyed work, life (in most cases anyway)”

Believe me buddy I wish it was a simple as that. Every time I get a feeling of pain I panic and limit activities for that day. I would love to be able to just go on holiday and not worry about all of this. I just wish it would end.

p.s. @Keith, what is your current gout situation? Are you still on your Allopurinol break? How do you manage it these days?

[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.

[d q]

Well, let’s be honest, I’m shot and bleeding either way really. Take the pill and burn my heart and liver a decade or two earlier but have mobility OR have serious gouty Arthritis by mid 40’s wishing I did take it;

1. Food alone won’t solve it, or even get close.
2. Combination therapy with excretion drugs have more worrying side effects and have to be taken twice a day.
3. Allopurinol wont work for me (Maybe try this again one day)

The only really viable options are;
1. Wait to see if 80mgs keeps bringing the level down naturally as it has been.
2. Take 90mg-100mg rather then 120mg
3. See if this new blood medication trial has an impact (my best shot really)
4. Sticking with 80mg @ 360-380 and go through a slow slow dissolve?

Some die taking these drugs, some die because they decided not to take them 🙂
Consider yourself very lucky @nobody. Your slice of the gout cake is indeed tiny

[d q]

@nobody haha – you are indeed an interesting character! no worries mate, I’ll kick of the process in a separate thread and forum and we’ll take it from there. Relax a little my friend.. Put a little faith in your friend [hopefully anyway] across the pond. A dedication of a little patience will indeed be the proof 🙂

p.s. Curiosity killed the cat;
1. how long roughly did you keep it untreated?
2. exactly why I want this s*** behind me. There is so much I still want to do. It was only a 5 years ago I didn’t know what gout even was and enjoyed work, life (in most cases anyway), etc.

[d q]

Wow, that is indeed way off the mark! Yes, my haematologist still believes till this day that hemo drop was due to some sort of inflammation or infection. They are simply not convinced it was the Alo. One of hypothesis was since uric acid acts as a powerful anti-oxidant and such low levels may have impacted the already fragile red cells and in my case causing accelerated cell death OR it was causing bone marrow suppression causing uric acid to drop heavily simply because there are less red cells in the blood to start with. It was a little ironic with each dose increase (and uric acid decrease) did we see a hemo drop. The first major hemo drop happened at 336ummol and we aren’t there yet with Febuxostat. Either way it may be an option to explore if Febuxostat cant control the situation. I guess the way to look at it is if they make a 120mg pill then some people just need that much.. Worst goes to worst I’ll live a little shorter but a lot healthier (go figure) 🙂

[d q]

Hi @Keith

Yes, laboratory based environments are completely different and as you say and that is probably why my rheumatologist wants me under 360 at all costs with a ‘if possible’ aim to get me to a 300.

Thankfully all my regular blood tests conducted for my haematological condition always include FBC, liver and kidney function tests so it is being monitored by both rheumatologist and haematologist.

The 24hr urate excretion test was in addition to other tests the haematologist wanted to conduct for various other reasons. It was never there to alter the treatment method. In any case, from what I understand Febuxostat does not increase uric acid excretion through urine so checking what the capacity of excretion rate does have its benefits. For e.g. if the excretion rate was low, we would at least know that the blood condition might not be the only reason for high urate values. Does Febuxostat act on the kidney’s to excrete more urate too? If so do you have any articles pointing to numbers? That would be very interesting!

Thanks buddy.

[d q]

Hello @Keith – good to finally hear from you mate. I see you don’t really spend much time on the boards any more. Any particular reason?

Yes, that 413ummol was definitely a strange result and happened right after the increase so I assume the UA levels dropped rapidly and something immediately dissolved and returned that result. In any case there does seem to be a gradual overall decrease. Well maybe just until another cache of crystals dissolve that is. Unfortunately I couldn’t do my blood test this week and I will now be doing it next week. I guess that result should give us a good indication as to where we may be heading especially since I would have been taking this new blood medication for over 5 weeks. To be honest I’m really hoping that I don’t need to increase my Febuxostat dose further.

From what I understand 80mgs of Febuxostat is ‘loosely and usually’ compared to 300mgs of Allopurinol. I remember I required 400mgs of Allopurinol to get to 283ummol back when I tried it last year. Maybe 120mgs of Febuxostat is the equivalent to roughly 400mgs dose of Allopurinol?

When you say support with Naproxen, do you mean take Colchicine followed by my usual dose of 500mgs twice a day? Or should the dose be decreased when taking it with Colchicine?

The new trial of the medication is supposed to correct late stage erythropoiesis (maturation of red blood cells). This technically means less defective or non-functional red cells floating around which effectively results in less uric acid from their premature death. Let me know if you wish to explain this in greater detail however.

Cheers mate.

@nobody if you have comments on the Allopurinol vs Febuxostat numbers please comment pal. Thanks!

[d q]

@nobody Yes, when I got under 300 with allopurinol before stopping it I got the worst attack ever and even today I have lingering pain with good days and bad days. MRI’s and X-Rays show no damage however I’m almost certain something is wrong. I need to ask my rheumatologist but do you know if the possibility of short month course of low dose Naproxen or colchicine can possibly have an impact? He wants me under the UK therapeutical limit of <360 whilst keeping the option open of even possibly getting me to the European therapeutical limit of <300 (if I understood him correctly). Is <300 the magic number in your country?

Those minor gout symptoms you get which luckily for you are decreasing are pretty much what I get and keeps me constantly worried and in some cases keeps me from enjoying certain aspects of life. I don’t get swelling but I just get pains around the joint all the time which keeps me thinking should I go out, travel, etc. or just stay home and keep it elevated. Anxious an attack is coming up.

Well good luck with 2020 mate. Its ultimately its physiology isn’t it? Reduce UA, wait a few years ffs and done? (well that’s what i’m banking on). Out of curiosity how do you deal with these annoyances by the way? Colchicine? Naproxen? etc?

Well we’re going to have to have a coffee either before this shop closes. Find me a way to safely get my contact details across and I would happily come over to visit you.. Don’t give me a complicated to that specific question now nobody 🙂

p.s. excuse any grammar or linguistic mistakes, I typed this really fast on a portable device.

[d q]

Yes, maybe I should have tested and even used Colchicine earlier on. Heck, some may say I should have even taken a tablet a day when starting Febuxostat and gone straight to 80mgs working my way backwards if there were issues or changes. In all honesty however nothing major has happened going slowly upwards apart from that mild attack a few days ago. I started Febuxostat in November 2017 and have been titrating slowly and cautiously and I have no regrets.

I’m not too sure a 24hr UA test needs to be done when your off UA therapy. It’s a simple case of your kidneys removing adequate levels from your blood and if you have less of it in your system as a result of ULT then you will generally have less excreted, if more was in the blood you would still fall under the normal rate. Besides, I’ve had this discussion with my rheumatologists both of which have told me that those drugs are generally avoided wherever possible.

I know your very cryptic and occasionally worry too much about giving out any information about your particular situation especially when it comes to certain questions but how long have you actually been on Febuxostat and when was your last gout attack? [surely you cannot think I can take you to court for such an answer] 😉

My blood test is next week and am a little anxious! I am really hoping to see a number less then 360, even remaining at 360 will bring comfort!

Otherwise it seems your condition is generally stable – I’m delighted for you mate. I hope that continues to be the case going forward. Either way, if your ever over in the UK and don’t want to remain nobody then please feel free to message for a real catch up. It would be interesting meet for sure 🙂

[d q]

yep, absolutely right. I’ve slept over it and decided to stick to the 80mg and will see how the new blood medication works out. From a theoretical stand point it should reduce UA but in reality standpoint who knows. I’m due my next dose in a few days and the results should be visible around a month later. If there is no benefit then 100mgs will definitely be the way forward.

Agreed, 120mgs definitely won’t be an overnight cure neither will 900mgs of Alo but at least its a movement in the right direction (providing liver and hemo hold up – which thankfully seems to be the case even at 80mgs). http://drugs.com and http://fda.gov stipulate as you say 40mg with 80mgs being the maximum whereas http://nice.org.uk says 120mg may be considered if 360ummol cannot be achieved. I’m not too sure why the UK has a higher max dose level as normally they are more cautious and slow?

I haven’t done much research on saturation/crystallisation points and had a quick look today. It seems 408ummol / 6.8 mg/dl is the number you want to stay below if you don’t want crystals forming (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3975080/) [but temperature has a huge role]. On the other hand however as you say crystals may be dissolving at 360-380 albeit probably very slowly unfortunately. I’m also aware that 360-380 is so close to the edge that any slight food ‘break’ may cause that spike and a bunch of crystals may form again. The gout attack I have seems to have settled down 95% however I’m getting stone like pressure on the middle of my foot. Not at the gout site but more towards the centre toes. I’m not to sure what all that may be about. Crystals dissolving at the centre toe joints / if they even accumulate there too? Do you occasionally just take a Colchicine tablet when you feel any sort of foot pain as a precautionary measure and for how long or do you just take it when you are almost sure the pain is gout related and take no risks regardless?

On an entirely different note I forgot to mention I finally managed to get a 24hr uric acid test done. Here are the results of that;
Urine Output (24 hours) = 2.5 litres.
Urine Urate Output = 2.4mmol/24hr <— The scale for this is: 1.2-5.9
Urine Urate = 0.95

A quick google / conversation on those numbers show that the urate output is actually normal. So that’s finally, after 3 years, pretty much closed that chapter of my worry on being an under-excreter. It’s taken 4 doctors to finally get that test done. I know it doesn’t change treatment options but I guess it gets me closure.

So how has your UA levels / Diab levels coming along? My father had he’s usual bi-yearly DB tests recently. We are waiting to here back. flour-gel ey? I may just look into that sir. LOL about the toothpaste. If you visited even the smallest of chemists here mate you will find that there are more brands, colours, packages, textures and ‘mint’ flavours then the amount of medications that are available in the pharmacy section. It may be the case that you can even find that rare hipster toothpaste yet you may not find Colchicine!
😉

[d q]

I never had an attack lasting more than 4 days while taking that much colchicine, whether I was on ULT or not. I thankfully didn’t have cause to test that statement properly so take it with a grain of salt but, my experience aside, stopping attacks within 3 or 4 days is what colchicine is supposed to do when you take enough.

Now had I have known what pain relief Colchicine brings I would have taken the whole bottle of that stuff. My second attack put me out for 2 weeks almost. To be honest though I’m not entirely convinced it was just the Colchicine. I really do believe the lower UA levels are playing a part. After all, my levels have been between 360-380 ummol (except for that 413 result when starting 80mgs).

The antibiotics were a precautionary measure and were started a day after the Colchicine so maybe they actually kicked in as two factor protection [one against the possibility of the toenail infection and one the other as protection from any immune drop Colchicine inflicts.]

I never tried putting salt in the foot bath.

This is indeed a tricky one as Epsom salt brought me pain relief last time maybe table salt does the opposite and potentially helps loosen crystals faster. Who knows.

Don’t underestimate random variations as an explanations for small changes in SUA test results. 413 isn’t far from 388.

Very true sir however 413 to 360 is indeed a fair drop without a dose change.
100mgs is definitely on the cards. I’ve started this new blood medication that could potentially be a game changer but that will take at least 6 weeks to see a change. I’m not too sure what to do! Go up to 100mgs or wait another 5 weeks or so and see if this drug makes a difference! What do you think? Not to sure what you mean by 120mgs won’t be a cure-all btw..? Lastly, face more attacks if I drop my SUA lower down? What’s that supposed to mean! lol.. I thought doing this very gradually would potentially keep that all smooth! i.e. Sticking at 360 for a few months then targetting 340, 320, etc? That was one of my worries. Are crystals actually dissolving at 360 or forming?

I too am due my blood test next week so we shall compare and contrast next week sir.. I’m popping down to the shops, floss, anything else mate? 🙂

[d q]

So pretty much the diabetes my father has. Good to hear your levels are better and stable now mate.

Scepticism is painted pessimism brother. You gotta engage more in optimism and achievement and most importantly hope. That’s what I’m clinging onto anyway 🙂

p.s. drifting back to diet for a sec, I was wondering if you know much about sesame seed paste? There is a food that I like which requires me to add some and was a little concerned with purine content?

Cheers.

[Author]

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