March 2, 2017 at 12:06 am #4919
1mg daily of Colchicine being a little consensual? I’m not too sure I understand mate? The ultimate goal was to remove the residual pain and little swelling that persists.
A few developments;
Adenuric (febuxostat) and Colchicine
My rheumatologist called me yesterday and we went over a few things with regards to starting febuxostat (Adenuric). He’s plan is for me to take 2 500micrograms of colchicine prior to starting febuxostat (one in the morning with breakfast and the second in the evening with dinner or before bed) and to continue for one month. Now I questioned the possibility of working backwards and starting febuxostat without any colchicine for preventative measures and dealing with any acute attacks as they happen which would ultimately lead to less medication buildup but with higher risk. He said that is also fine but did I really want to risk it. What are your thoughts on this? I mean I could potentially take a pill or two of colchicine -after my baseline blood test- (to make sure results are not hindered) and see how my body reacts to it prior to starting febuxostat? Would taking 1mg of Colchicine for a whole month be too much?
Building up on the Colchicine dosing he said if you do get an acute attack then you can take up to 4 tablets of colchicine per day (2mg) and no more then 6mg over 3 days. If pain or problems persist after the 3rd day of 2mg’s then you should switch to NSAID’s.
NSAIDs for Gout PAin
Moving onto NSAID’s. He also mentioned that if I decided not to take 2 Colchicine tablets a day for a month as preventative treatment while I start febuxostat I can go on 250mgs of Naproxen once a day or 25mgs of Diclofenac once a day for a month. He’s recommendation was Colchicine but he left the choice to me. Which is generally safer / better, a month of naproxen (250mgs once a day) or a month of Colchicine (500micrograms twice a day [1mg total])?
Finally, with regards to febuxostat, he mentioned that a rash means immediately stopping and a blood test after two weeks is essential to monitor liver, kidney and of course my usual blood counts and again after a dose increase.
(He asked me to start by breaking the 40mgs tablet into 20mgs and see how I go for the first two weeks. I mentioned that we do not have a 40mg tablet in the UK and we only have 80mg (believe it or not he didn’t know). So he said break the 80mg tablet in half and start with 40mgs. I asked why he wants to start me on 20mgs anyway and he said I just want to be extra cautious. Now he has me thinking of getting a pill cutter to take 20mgs to start with too. What do you think?
p.s. He did say taking both NSAID’s and Colchicine for an attack is not really recommended. So if the colchicine doesn’t make an acute attack better after 3 days of 2mg then stop the Colchicine and then I can start NSAIDs.
March 2, 2017 at 12:06 am #2699Gout PatientParticipant
Colchicine Proper Dosage
My doctor gave me a prescription for colchicine.
It was take 2 capsules wait one hour and take another one.
Wait two days and repeat dosage.
Your website says to take no more than one capsule a day. So, my dosage would be considered a high prescription.
I just want to be sure that I have the right information.
What is the proper dose of colchicine? The doctor says take colchicine every other day. But you say take it every day. What is the proper Colcrys dose?
March 2, 2017 at 10:18 am #2703
My website should not say “take no more than one capsule a day”
Please can you let me know where it says that, so I can correct it.
Also, Andrew, can you tell us which country you are in. Dosing guidelines, and colchicine pill sizes, vary from country to country.
March 2, 2017 at 4:48 pm #2704PatrickParticipant
I agree with Keith. I don’t think I ever read Keith or the website ever saying not to take more than 1 tablet a day. As a matter of fact, I think I’ve read many times Keith’s remedy for Gout Pain Management as taking up to 4 Colchicine tablets in a day (correct me if I’m wrong Keith). The remedy was to take 2 tablets immediately, then take 2 more later if pain doesn’t subside.
I think people may have been talking about taking Colchicine as a prophlactic in which 1 tablet a day may be sufficient. The dose I take occasionally is 0.6 mgs, but as I’ve discussed many times before, Colchicine in the US is quite expensive. I pay a $50 co-pay and my insurance is billed $600 for a 3 month supply. That’s ridiculous in my opinion, so I don’t take it very often.
March 15, 2017 at 2:57 am #2815CindyParticipant
Sorry this is not a reply to Andrew, but I’m surprise to see Patrick’s comment about how expensive Colchicine is in the US! 😯 Colchicine 0.5mg costs only less than US$0.1 in HK where I can buy them in drug stores easily. 😕
March 18, 2017 at 7:27 am #2820
Cindy, it’s a United States FDA corruption thing. Use the search box near the top of each page to search for Colcrys Price, or similar. I believe it’s made worse by the collusion of medical insurance companies and pharmaceutical companies. But, what do I know. Be thankful you’re in Hong Kong. One of my favorite places in the world 😀
June 19, 2017 at 2:57 pm #4242
Hey Andrew ( @andrew-kelsey ),
Have you found where we put “Your website says to take no more than one capsule a day.”? We would like to correct it. Because you should take colchicine every day, as a preventative. But, some gout patients take it as required at the first sign of gout.
June 17, 2017 at 9:14 pm #4198
Preventative Colchicine dosing vs As Required
How you doing guys.
I was just wondering what dose of colchicine you guys take during preventative and during acute attacks of gout..?
I’ve been given the all clear to use it should I need to but I wanted a general idea of what dose you guys take or use to take during treatment?
June 17, 2017 at 9:46 pm #4199MauriParticipant
I don’t use it for treatment ; only for prophylaxis. Took it for 6 months to prevent attacks after starting allopurinol 600 and my dose was 0.5 real day. Did not have any issues. Good luck
June 17, 2017 at 10:17 pm #4200
Right now I’m not doing too well. No biggie but I’m wasting more time online than usual.
Is your hemoglobin situation improving?
Cochicine is kind of a puzzling drug to begin with. And the dosing recommendations are all over the place. You’ll have to experiment and weigh the risks for each situation.
As with any unfamiliar drug, go easy at first and watch for interactions with other drugs you’re using or unusual conditions you’re suffering from.
Maybe because I’m large, I haven’t had a good experience taking 0.5mg/day. I’d rather go 1mg or alternate between 0.5mg and 1mg.
To attempt to speed up the resolution of a serious situation without NSAIDs, the MINIMUM dose I’d use is 2mg. No more than 1mg every three hours though, as per the doctor’s instructions. I would then progressively lower the dose over the following days (unless perhaps the symptoms actually got worse but that’s a situation I have yet to encounter).
June 18, 2017 at 1:27 pm #4203
@Mauri – thanks for your contribution mate.
Why mate, what’s bothering you? We are all heading or already are spending too much time online, being out with people is like being out with smartphones and tablets! I was out enjoying the few summer days we get yesterday and believe it or not it was like being out with smartphones. Every beep or ring everyone would look at their devices. But whats on your mind pal..?
With regards to the Colchicine, well since stopping the Allopurinol on May the 31st I did another blood test on June the 16th and it turned out the haemoglobin actually went up slightly to 5.7 g/dl. Now although not significant I am extremely thankful as the trend seems upward and haemoglobin generally takes longer then white cells or platelets to recover. My next blood test is due at the end of this month but I might postpone it slightly until first week of July as I’ve had 4 blood tests each with two tubes alone this month for all the required tests (kidney, liver, iron, fbc, urate) which can also impact haemoglobin so levels might actually be higher and recovering quicker but being hindered by the amount of blood tests I’m having.
In any case the rheumatologist prescribed two 500microgram Colchicine tablets so 1mg total a day to take for foot my which is still slightly inflamed from my 12 week attack and as preventative treatment so that I can start febuxostat immediately. I personally will not be taking any drugs including Colchicine or febuxostat or naproxen until we get to the bottom of the current haemoglobin issues (if they were allopurinol).
However I kept the tablets in the unfortunate case of an ad-hoc acute attack over the next 3-4 weeks. I am approximately 58kilos and was wondering if 500micrograms twice a day was sufficient or even too much for dealing with it?
p.s. Baring in mind this is the same rheumatologist who wanted me to go straight to 80mgs of febuxostat.
Thanks as always.
June 18, 2017 at 2:52 pm #4205
Having been blindsided by a flareup in the big toe, I was simply in pain. Like I said, no biggie.
Not much of a smartphpone user myself. I use mine like a dumbphone with a better keyboard and I rarely allow the thing to disturb me. I guess that makes me a weirdo.
Good to know your hemoglobin stopped falling. Looks like it really was allopurinol.
For what it’s worth, my hemoglobin dropped a bit after a while on febuxostat (about 1 g/dl, more than the usual variations but a good bit less than the drop I got from minor abdominal surgery for instance) but it might have been an odd coincidence. I don’t get that tested often. But in the data I’ve got, I didn’t notice any effect from colchicine on my hemoglobin.
When using it after a serious attack has started, 0.5mg cochicine doesn’t do much (if anything) for me. I guess two such pills a day would be helpful to prevent the attack from coming back or lasting weeks though.
Whether small doses would work better for you, I can’t say. Small doses might also work well in combination with naproxen. You’ll have to try.
And I don’t know the impact colchicine would have on someone with your blood problem. But as far as the general population is concerned, 1mg/day colchicine is very far from the maximum dose. It’s nothing like 80mg/day febuxostat.
June 19, 2017 at 12:20 pm #4209
believe me mate, I totally understand. Insidious disease, horrible pain.
Frankly speaking I admire people like you who are able to part from their smartphone. It makes me sick watching all these people using them with no regard to how quickly life goes by. All I hear is Facebook post, or twitter feed or whatever. I personally don’t use any of it.. So call me a weirdo too 🙂
Yep, that is certainly good news with the haemoglobin mate. I can’t tell you how much weight has been removed from my shoulders. We still aren’t sure it was the allopurinol but lets hope it was.
So do you still use febuxostat? Is it a good drug? Just out of curiosity how come you got hit by an attack whilst being on it? Was it the usual after starting ULT attack?
Well at least its good news to see my rheumatologist went a little more conservative with colchicine dosing to start with. Initially he prescribed it as preventative when starting febuxostat and to reduce this long standing inflammation I have. I think he wanted me to hit 3 tablets should I get an acute attack. I am just reluctant to taking absolutely anything right now. Believe me the risk of not taking any ULT is killing me. I’m banking on the 4 months of hardcore low uric acid levels to have dissolved as much as possible and to give me some breathing space until at least I see my new rheumatologist in mid July (and if the haemoglobin shows recovery after allopurinol).
June 19, 2017 at 1:48 pm #4210
This was more of an overconfident-after-a-while-on-ULT attack… assuming it was gout (got no tests done seeing it struck during the week-end). Haven’t been through something this nasty in years.
I did more “hardcore” ULT than you. But you know how the time it takes for the old crystals to clear seems proportional to the time you’ve had high UA or gout? Well, in light of that I should have been more careful.
Correction: with your hemoglobin so low that it’s got one less digit than mine, I messed up my unit conversion above. Febuxostat (which I’m still taking) might have caused my hemoglobin to fall by about 1 (something like 6%), not 0.1 (which is nothing).
June 20, 2017 at 8:00 pm #4317
I’m so sorry to hear that mate. The attack I got in March really really punished me too. Even till this day I still feel some of the aftermath pain and have some inflammation and I tend to just ignore it and get on with it despite the rheumatologist seeing it and telling me to take 2 * 500micrograms of colchicine a day till it resides. No thanks. I’m on a pill detox for now.
Yep, believe me after starting allopurinol and the attack I got I certainly am aquatinted with how it all works. How do you mean more hardcore? Did you take a really high dose of febuxostat for a short period of time? Or was it that you just got really overconfident with diet? I’d like to know since I might be on the same drug as you in 3 weeks! 🙂
I figured 0.1 was a typo 🙂 Ah, that’s very interesting, So you got a little dip in haemoglobin too after starting febuxostat, by any chance did it recover?
oh and I forgot to mention with the slight increase in haemoglobin after what we think was because of stopping allopurinol my uric acid has spiked to 760ummol. It was never that high and always sat at 550-600 at most. I’m hoping it could just be that residuals from what was dissolving whilst on allopurinol?
A few questions there for you 🙂
June 20, 2017 at 9:49 pm #4319
I’m not surprised you were recommended colchicine in your condition. It’s not good at relieving acute inflammation but it’s good at putting it to rest, slowly but surely.
I was talking about SUA, as you did when you used that word. Starting from a lower level than yours (thanks in part to my diet), I ended up with lower SUA test results than yours even though I’m only taking a small dose.
I never took a very strong dose of febuxostat. I wouldn’t dare as my liver is touchy.
I was overconfident in terms of how I neglected both to baby my joints and to take a prudent (meaning pretty large) amount of colchicine at the first sign of trouble.
re: my hemoglobin
The dip showed up in my last test. I would usually not get tested for this stuff as I have no blood problems (well, I routinely have abnormal white cell fractions but I suppose that’s to be expected when someone’s got chronic inflammation) so I’m probably not going to be able to tell you if it was a temporary dip anytime soon. If it turned out to be permanent or even if it got a bit worse over time, that wouldn’t be an issue for me.
re: your SUA test result
I warned you about this. I also got a surprisingly high result shortly after quitting ULT (that was before my current ULT). But I’ve got to say 760 is even higher than I would have guessed!
I don’t know why SUA rebounds that way. The crystals must be part of it but it’s possible your metabolism tried to compensate for your lowish SUA by overproducing and hasn’t adjusted back yet.
For what it’s worth, going by the tests my SUA seemed to have dropped back to normal fairly quickly after that ULT-discontinuation spike.
June 21, 2017 at 5:23 pm #4330
the rheumatologist was also pretty shocked to see such a long standing attack. By the way, assuming one doesn’t take colchicine will the inflammation eventually go on its own..?
Ah right. So what dose are you taking now then?
So how long have you been on febuxostat prior to this attack. I know crystals can linger around for possibly years but when did you actually start taking febuxostat after learning you have gout?
re: my hemoglobin
Chronic inflammation is exactly my worry. Its been ages with this minor inflammation I have and I have no idea when it will go. Is your chronic inflammation a result of not treating it with colchicine or is it something that may never go away?
re: your SUA test result
Yep, you sure did and to be honest I never thought it would go up by 160ummol. I was thinking more 50 or so. Let’s hope it is just a “drug stop shock” and the body just re-adjusts. When you say fairly quickly, how long roughly after stopping? So you are no longer taking ULT?
June 19, 2017 at 2:14 pm #4211
Returning to colchicine dosing, I still struggle to accept that it has any anti-inflammatory effect. So, I never took more than 2 a day (2 times 0.5 g = 1g/day). But, I did rely on ibuprofen – probably because I was used to it, and never had problems (I remember a nurse saying I had a cast iron stomach. She made no comment about any other part of my anatomy). On a few occasions, I supported ibuprofen with intermediate paracetamol (acetaminophen).
That’s when I came up with my 3-pronged strategy of:
– Stop/slow inflammation spreading (colchicine).
– Reduce inflammation (NSAIDs).
– Block residual pain (paracetamol).
Of course, the principles can be applied to different treatment combinations. But, I’m always wary of too much colchicine, based on how it works.
June 19, 2017 at 2:51 pm #4241
The issue isn’t whether colchicine technically has any anti-inflammatory effect (as opposed to a pro-anti-inflammatory effect?) but whether 1mg/day does indeed “stop/slow inflammation spreading”. In my experience, it does not do so in a timely fashion.
In any event, it’s obvisouly not going to have the same effect as ibuprofen-type drugs.
June 20, 2017 at 5:40 am #4310
Nobody, just to be clear, are you saying that if you take 1mg colchicine during a gout flare it gets worse after an hour, yet taking a higher dose makes gout pain the same or slightly less in an hour? My choice of an hour is just random. It might make more sense to say half an hour.
June 20, 2017 at 4:48 pm #4316
Of course that’s not what I’m saying. I wouldn’t know because I never tried taking more than 1mg colchicine at a time, as I was told not to do so. But really, do you think it’s possible colchicine could work that fast?
The timeframe I was talking about was the one you originally were talking about: a day. My flareups have previously gotten worse by the next day when I took less than 2mg. But every time I took 2mg or more, whether it got worse over the next few hours or not, by the next day the flareup had started abating. It could of course be a coincidence.
What really makes no sense to me is to take the same amount the first day as during the following days. The stuff is going to build up in your system so if you’re not afraid of what that’s going to do to your body on day 3, why not take more colchicine the first day and get the full effect quicker?
July 31, 2017 at 11:55 pm #4892
@nobody – I was just reading through this thread again. Just to clarify you take 2mg a day during an accute attack but no more then 1mg at a time?
1. Are you saying you take two tablets then a further 2 tablets a few hours later? If so how, how many hours later?
2. Do you use any NSAIDs with your treatment package “in combination”?
August 1, 2017 at 1:32 am #4895
My tablets are 1mg. I usually take halves as I prefer spreading the intake over time but have many times taken a whole tablet without issues (mostly as an emergency measure).
I’ve taken different amounts. It depends on the situation. I have no fixed rule other than: no more than 1 mg every three hours.
Now I’ve never kept taking that much past the second full tablet and I might split that second tablet depending on how the symptoms evolve. Part of the reason I start cutting my intake at that point that is significant side effects supposedly suggest the dose was excessive and I know I’ll get side effects later if I push it further. But over the course of a whole day, I’ve taken more than 2 mg.
There might be other reasons to take less: if I had already been taking lower amounts as a prophylactic (the stuff can build up in the body), if I was already struggling with the side effects of a different drug, if I didn’t have easy access to a toilet and so forth.
I generally avoid NSAIDs as I tolerate colchicine way better but I would take a moderate NSAID dose on top of colchicine if I had a really bad attack. If I took that NSAID however, I wouldn’t take so much colchicine.
My doctors are concerned about drug interactions. Perhaps that’s only because they know I’m prone to serious side-effects. For instance when I started my current ULT I took neither colchicine nor NSAIDs for a while out of concerns about interactions and that is not what most patients do.
While I’ve used low-dose NSAID along with prophylactic-dose colchicine, my serious attacks have been few and far between since I’ve been taking colchicine and I never tried to use an NSAID along with a large colchicine dose. The one time I was tempted to do that was the first (and only) time I took a large colchicine dose while on febuxostat and I was reluctant to mess with that experiment by adding in another source of side effects.
I also never tried throwing alcohol into the mix. I don’t drink anyway but I’m just mentioning that as a warning since lots of people do and interactions aren’t only between pharmaceuticals.
Has your hemoglobin been improving by the way?
August 3, 2017 at 11:01 am #4910
@nobody – good to hear from you mate. The information on Colchicine really does vary across the board. My rhumatologist advised me to take two 500micrograms tablets a day in attempt to finally rid me of the slight swelling and pain I still suffer from today. As you know I refused to take any medication until we isolate and try and resolve my haemoglobin issue.
Which brings me to some very interesting findings over the last 6 weeks. As you know I stopped allopurinol on the 31st of May. A week later the haemoglobin climbed slightly to 5.7 which was encouraging but still worrying, if you remember my uric acid also shot through the roof to 700ummol which is what you expected.
Fast forward slightly under a month and a blood test taken first week of July showed uric acid down to 650ummol and a haemoglobin of 7.3. Fast forward a further week to around mid July and uric acid had dropped further to 600ummol and a haemoglobin of 7.5.
So, it “seems” allopurinol was the culprit however my haematologist says it could have been an internal viral infection and not to just rule out allopurinol. He also went on to say that we can follow the rheumatologists opinion to try febuxostat if he feels it may be better suited because the rhumatologist suggested that allopurinol may cause anemia.
Now prior to starting fexbostat I have one more baseline blood test to do next week. I’ve asked them to include liver function, kidney function, full blood counts and finally uric acid. Once we get the results were going to start fexbostat.
I know you are taking it and from what I understand it’s best to start with a lower dose then 80mgs so I’ll be splitting that tablet to 40mgs but are there any other hints, tips, pointers that I should be aware of before jumping onto your febuxostat boat? 🙂
August 3, 2017 at 6:36 pm #4912
1mg daily is a pretty consensual colchicine dose actually.
The controversy is about what dose to take when dealing with an acute attack. I think it’s obvious that it should be a good bit more than 1mg if you hadn’t been taking colchicine previously considering that the stuff is going to build up in the body if you take the same amount daily.
I recommend you try colchicine before taking febuxostat if you’re going to use it because you don’t want to be testing two unfamiliar drugs at the same time.
Ideally, you’d have a blood test on colchicine alone (or colchicine + NSAID if that’s what you’re planning to take) prior to starting febuxostat so as to avoid blaming the wrong drug for abnormal test results.
About febuxostat, I’m going to go into paranoid mode since you seem to have had trouble with pharma before…
The most important thing to understand in my opinion is that even in the UK, doctors are often subject to local profiteering biases. In the case of febuxostat, this can lead to improper dosing. Yes, I did recommend against starting with more than 40mg. But I did also recommend starting with less, didn’t I? In case you didn’t get it, I’ll lay it extra thick for you…
I don’t think you should consider 40mg as a mere starting dose. I doubt you’ll have a use for 80mg except possibly as a way to make you sick. And if it turns out you get nasty side effects at 40mg, it wouldn’t mean febuxostat is not for you because it’s not a given you couldn’t acheive an adequate SUA with a lower dose, especially with dietary support. The way your system reacts to the stuff will of course trump all prior guesses…
Here’s a quote you might find interesting: “The usual adult dose is once daily orally starting from 10mg. Thereafter, increase the dose gradually as needed while monitoring blood uric acid level. Usual maintenance dose is 40mg once daily. Dosage should be adjusted as needed according to the patient’s condition. The maximum dosage of febuxostat is 60mg once daily.” This was as you may have surmised not issued by the profiteers who saw fit to make ridiculously strong (and therefore expensive) pills and to make a show of marketing them at patients who got insufficient SUA reduction from inadequate allopurinol dosing (or for want of an uricosuric) rather than at the patients feubuxostat was designed for and who actually need to buy these pills.
If you decide to cut the pills smaller than they were designed to be cut, precision is not critical.
Other than that…
Don’t be panicked by initial side effects, especially if you go straight to 40mg from zero. Your body will need to adjust and there are ways to mitigate this type of side effect. The one type of side effect I’m aware of which might warrant stopping the drug immediately is an allergic-type reaction such as a rash. I would also consider stopping the drug pending testing in the event of cardiac side effects.
Don’t be disappointed if your SUA doesn’t drop immediately. You should get a large drop fairly quickly but it would probably keep dropping for several weeks without a dose increase.
I would recommend you initially avoid alcohol as well as other non-essential drugs or anything else which might upset your liver such as fatty meals until you know for sure it’s coping well. That would mean no paracetamol/acetaminophen… if you have no alternative on hand, consider asking your doctor about painkillers which do not hurt the liver before an acute attack gets you, stressing the temporary nature of the situation. For what it’s worth, colchicine is easier than NSAIDs on my liver.
If you’re going to have a baseline blood test, you could add bilirubin, TSH, CPK and blood urea (some of these may already be planned but unlike ALT and so forth, they are not routinely done here) which are known to be affected by febuxostat in some cases. Urine tests may also be affected but unless you have kidney concerns, it’s probably not worth the bother to baseline that.
You might also want to initially monitor your blood pressure, cardiac rythm, frequency of bowel movements, appetite and weight. Febuxostat can (if indirectly) affect them all and simple changes might provide useful clues. Occasionally monitor your skin and eyes color as well. Possibly there’s something else you are equipped to monitor on your own.
August 4, 2017 at 7:40 pm #4920
Congrats! You’ve found a doctor who seems to have a clue about febuxostat.
You can’t cut Adenuric pills to 20mg precisly by yourself (or at least I wouldn’t know how to do it). Some pharmacists ought to be equipped for this but the service may be expensive and my rheuma said imprecise cuts are fine. You can cut to approximately 20mg without a pill cutter. Some (most?) pill cutters are actually worse than kitchen knives for this job. I use a tool not designed for cuting pills. You want a sharp, straight blade such as a razor blade and you want to be able to apply significant pressure.
About 1mg colchicine daily being consensual… well, I simply mean that this is a dose which would get recommended to you by different folks in many places. Like there’s a consensus on the matter.
The dosage to deal with acute attacks is another matter. I’ve been given different instructions, all different from the ones you’ve just been given.
Regardless, I agree you should be getting better after 3 days on 2mg colchicine. In fact it would be mighty disappointing if you weren’t better a good bit sooner.
The problem with not having a blood test done while on colchicine only is that you won’t be able to tell the effect of colchicine and febuxostat apart once you start the latter. Yes, both affect the liver. But then so do NSAIDs. And like I said, in my case NSAIDs are worse than colchicine. But you won’t know for sure which is worse in your case if you don’t get blood tests.
It would be a good idea to try some colchicine pills before going on febuxostat to see what side effects you get and understand how they work. But to get an idea of what 1mg daily over a month (or more) would do to your liver, you’d need to be taking the stuff every day for at least 10 days before getting a blood test I would think.
I forgot something else which may be dangerous liver-wise by the way: mushrooms. If gathering mushrooms is popular in your area, consider not eating that for a while. Professionally-grown mushrooms ought to be safer.
Now about going on febuxostat without taking a prophylactic daily… like I mentionned, that’s what I did and I got away with it. But your uric acid problem is a good bit worse than mine. It seems like it’d be risky in your case. But your experience with allopurinol ought to be the best guide as to what you can expect. Just be aware that febuxostat is very roughly 10 times stronger than allpurinol by weight. So even 20 mg daily would be a more brutal ULT than your initial allopurinol dose.
August 5, 2017 at 4:13 am #4921
@d_q I just found myself Googling “memory problems from trauma or dementia” because I feel I should know what you are talking about. But I don’t.
Why febuxostat instead of allopurinol?
The colchicine limit of 6mg over 3 days is peculiar to Britain. I can see the point of that. Because creating rules means you can try to protect the safety of the general population. But, as far as I know, there is no specific medical evidence to support it. As nobody says, dosing guidelines for colchicine vary considerably. America did some real research with Colcry$. But ultimately that became more about wealth transfer to the rich rather than safe medical advice. That is, “Here’s a tried and tested safe dose for colchicine that works. Now give me $194.93 to reduce your gout pain by half.”
In essence, you cannot get a universal medical consensus on colchicine dose. But that’s OK with me. Because I believe colchicine dose should be down to the individual (within the bounds of safety).
More importantly, your rheumy is a prime example of doctors who have no clue about pain control. Talk to a senior nurse. They have better pain control experience and lower morbidity rates.
I made that last sentence up. Because it’s the kind of nonsense that fits well with statements like “So if the colchicine doesn’t make an acute attack better after 3 days of 2mg then stop the Colchicine and then I can start NSAIDs.”
Reading this back, @d_q, I realize I’m being less than helpful. But, you’ll be aware that I like to start a problem by understanding its purpose. And, I’m really not sure what we are trying to achieve here.
3 days of gout pain when you can stop it in 3 hours!?! It’s no wonder people turn to ACV and baking powder.
August 5, 2017 at 9:32 pm #4939
@nobody – Thanks for the excellent advice mate – great help.
Yes, that is indeed true about not knowing what effect Colchicine and Febuxostat have on blood tests. The problem of waiting a further 10 days to get an accurate picture of what Colchicine does (if anything) on my blood tests would mean at least a 2 week delay on starting febuxostat but I do agree safety is far more important then just starting febuxostat. An option might be to do the baseline blood test next week, whilst those results coming back maybe take colchicine for 2 or 3 days to see how I react to it and then stopping. Then finally starting febuxostat.
I am exactly like you in not wanting drug build up and feel that maybe dealing with an attack as it happens with a little extra colchicine safer then a gradual buildup over a month (if anything even happens). Yes, I did have a bad attack on allopurinol but to be honest maybe it was my fault for not treating it aggressively enough.
With regards to febuxostat dosing, I’m looking around for a good pill cutter and I’ll be experimenting with a kitchen knife a little later to try and split the pill even further to 20mgs. I’ll end up splitting the 80mg to 40mg and the 40mg to 20mg. I’m taking your advice on this one as I’d much rather micro manage the situation this time round. Thanks for the advice on that.
Now what I did want your advice on was:
How long should one stay on 20mgs before moving up (if necessary). From what I understand I should stay on 20mgs for at least two weeks as I’ll see a dramatic drop afterwards?
Could I get an insight as to what your rheumatologist recommended for your Colchicine dosing? Also did he mention which was generally safer NSAIDs or Colchicine? I’d just like to have a rough comparison of thoughts. Thanks mate.
$194.93 is extortion! As you know I’m UK based and the rheumatologist that actually gave me those dosage guidelines are infact higher then the ones stipulated at Medicines.org.uk (https://www.medicines.org.uk/EMC/medicine/21325/SPC/Colchicine+500+micrograms+Tablets/). So I guess he is following some other rule or experience as it certainly isn’t the one on medicines.org.uk site. I am assuming the bounds of safety is 6mg in 3 days?
I think my rheumatologist was trying to play it safe since allopurinol didn’t work with me if you remember (haemaglobin) so, taking febuxostat with colchicine with nsaid’s all at the same time might not exactly be safe in he’s eyes. Out of interest, did your rheumatologist actually say it was fine to take Colchicine with NSAID’s?
Stop it in 3 hours! Well thats something I would love to be able to do! Its been 3 months of slight swelling and residual pain that comes and goes since my last attack, please do tell us your secret.
Now I feel in safe hands 🙂
August 5, 2017 at 11:04 pm #4940
Stopping pain need not take 3 hours. Just take enough proper painkillers. But of course pain isn’t the issue…
In my opinion, you should have tested colchicine earlier. Besides the issue of febuxostat and colchicine independently stressing the liver, possibly colchicine would interfere with your haemoglobin production. So I would have thought your blood specialist would be the one you’d talk to about colchicine rather than your rheuma.
One option would be to do without colchicine until the effect of febuxostat alone on both your liver and haemoglobin is establised.
If you’ve tolerated NSAIDs in the past and your liver function tests haven’t shown any signs of stress, I would think NSAIDs would be safe for you to take along with febuxostat. An advantage of NSAIDs over colchicine in my opinion is that you can wait until you get an attack to take NSAIDs while colchine works best if you take it ahead of time. So you needn’t take NSAIDs every day.
I’ve already told you what my rheuma recommends w.r.t. colchicine. And you don’t want to take anywhere as much since you’ve never tried the drug, much less done a blood test while taking it. As with most drugs, small doses are best until you know for a fact your body can handle the stuff.
Colchicine vs. NSAIDs didn’t come up with my rheuma because colchicine is obviously much safer for me (as well as for the thousands NSAIDs send to an early grave every year). Iron Stomach here seems to do fine on NSAIDs though and he’s not the only one. So really, your experience and blood tests ought to be what guide you in this matter.
Now, about how long to take 20mg. I would say: until the results from your first blood test come back. If your liver and haemoglobin seem OK and no other red flag is raised, increase the dose. Obviously, that’s assuming you’re not experiencing serious side effects.
I should stress the following though: testing normal or abnormal is irrelevant. If your liver function tests are elevated compared to your other tests for instance, they would likely become worse over time even if you didn’t increase the dose. Don’t wait until your test results actually get bad enough to raise a red flag to act on any information they provide. The same goes for haemoglobin.
Also note that elevated ALT is expected. If it’s the only liver function test that’s outside your usual range and if it’s not ridiculously high, I wouldn’t worry about it. Febuxostat will affect the other tests as well if you take more than your liver can handle.
I’m not sure what you mean with “I’ll see a dramatic drop afterwards”. The full effects of febuxostat on both uric acid and liver will take more than 2 weeks to become clear. I’m guessing the same goes for haemoglobin. But you don’t need to know the full effects to see where the values are going.
If you’re going to try to cut these hard pills with a knife, the following may sound obvious but the force is going to make the fragments fly orthogonally to the blade. So use some obstacle or container to collect them or the dog will find the fragments before you do.
With some cutting tools, you can safely cup the pill with one hand while the other is applying pressure.
August 7, 2017 at 12:29 pm #4957
Pain is most certainly the issue buddy 😉
I agree I should have tested Colchicine sooner but getting to speak to doctors in the appropriate (one recommending, the other appointment a month later) order is not always possible. If you remember I was already given the green light to try colchicine by my haematologist here. For that matter even after I was given the OK to use it I did my own research and found out it has potential to cause some anaemia (less then 0.1%) though. If you remember Allopurinol also took about 2 months to see a clear drop in haemoglobin (although I wasn’t tested during those 2 months so it may have been dropping weekly) so I think a few days using it during an acute attack whilst starting febuxostat should be ok. I hope.
In any case I’ve decided not to use it as a preventative approach as that will lead to higher risks in my case especially with febuxostat running in tangent giving us no clear indiction on what “may” cause a haemoglobin drop (if any). With regards to NSAIDs, yes I have taken them in the past with no issues at all. They didn’t help much in the past during an acute attack but during the visit to new rhematologist he recommended taking 250mgs Naproxen or 25mgs Diclofenec for a week when starting febuxostat and with every potential increase so that may prevent an attack even occurring further reducing my requirement on them. iron stomach here.. haha 🙂
The dramatic drop comment was simply my own since I believe we were discussing 40mg at the time which is a powerful dose. The best approach would be as you say to start at 20mgs watch both uric acid and haemoglobin in 2 weeks and then in another 2 weeks giving us a month in total. If all looks good, bump febuxostat up to 40mgs and watch and wait. Thanks for your pointers on the mushroom. What I would like to mention is I eat a lot of cheese and drink lots of milk. calcium levels are fine however.
i’ll be practising with cutting one of those pills today, how long can I store the cut pills in a jar for? Can I just go -bull in a china shop like- and cut the whole pack up and store them in a jar for easy taking?
p.s. Out of interest, what dose of febuxostat are you taking and what are your current uric acid readings?
August 7, 2017 at 6:14 pm #4958
If pain is still a problem for you, again, ask your doctor about proper painkillers. Pain relief doesn’t have to be complicated.
I’d be more concerned about the damage inflammation is doing than pain but sometimes, pain relief is indeed what you want. Clearly, you wouldn’t be using it to defer treatment.
You have a (so far as I know) rare condition so I wouldn’t be reassured by numbers such as 0.1%. These numbers are often dodgy but in any case they are relevant to people who have no special health concerns.
But yeah, I would assume the main risk for cochicine would be if you took it regularly for quite a long time.
I’ve never been told to abstain from cheese or milk due to liver issues but it’s easy to eat too much cheese and common sense tells me it can’t be easy on the liver.
I have no idea how long you can store cut pills. I’ve been cutting them one pill at a time just in case.
I’ve been trying different febuxostat doses. For what it’s worth, I got SUA readings at 4.3-4.4 while on 20mg. But you should need more of the stuff to get there so depending on your subjective experience and test results, I’m not sure it’s best to keep taking only 20mg for so long (though four weeks is what was recommended in the document I quoted to you a few days ago).
More relevant to your situation than my test results are studies. Here’s one: after 16 weeks, 46.5% of patients on 20mg had a SUA at or under 6 against 2.6% of the patients on placebo and 82.9% of the patients on 40mg.
August 11, 2017 at 9:54 pm #5064
The inflammation has significantly reduced. I don’t think there is much to worry there. I mean these things have to go at some point as you said and I’m just hoping it will soon. I could take anti inflammatories to potentially speed things up but I would really much prefer to use them when required to avoid plaguing my body with further medication. I want to try and have the most organic start before starting febuxostat. Unfortunately I still get daily pain and on some days it can be bad. It’s such a shame as 2 years ago I was as fit as a fiddle and those memories alone torture me.
Colchicine should be safe during flare ups for those 3 days but I most certainly don’t want to use it for preventative treatment until I see the impact of febuxostat. Starting colchicine now would just delay things further. I need to start febuxostat asap.
Cutting the 80mg to 40mg and then half again to 20mg was and is a little tricky but I’m not taking the risk, in fact I want to do this mildly this time. The fast increase of allopurinol caused this massive attack and my colchince ignorance and NSAID could have avoided this. I know I would have had to stop it eventually but I could have at least avoided the attack.
If 40mgs can keep me at 300-350ummol I would be happy, let crystals dissolve as slow as they want if it provides an easier long term ride.
By the way, do you have any ideas about “vitamin E’s” influence on uric acid. From what I understand its a powerful antioxidant and can potentially extend the life of red cells reducing turnover (which in my case is huge). My assumption is the result would be reduced uric acid release into the blood. I’m going to try a short 2 week course to see if it helps at some point. I’m not sure but I assume it ‘might’ also be beneficial for people without my condition but with gout. That’s just my guess.
August 12, 2017 at 5:11 am #5068
do you have any ideas about “vitamin E’s” influence on uric acid
I know you didn’t address that to me @d-q but I’ll butt in any way. (BTW, probably a new topic?)
Uric acid and Vitamin E are both chain-breaking antioxidants. So, the theory says if your body has access to more vitamin E it has less need to produce uric acid. Unfortunately, as far as I can see, it’s an untested theory. Anyway, I’ve put 2 reports in the library for your perusal.
I’m particularly interested in your thoughts about the section near the end of the second report, “Synergistic Inhibition with Vitamin E”. Because, quite frankly, I only understand every other word! 😮
1. Ames, Bruce N., et al. “Uric acid provides an antioxidant defense in humans against oxidant-and radical-caused aging and cancer: a hypothesis.” Proceedings of the National Academy of Sciences 78.11 (1981): 6858-6862. Ideas about Uric Acid, Aging, and Cancer PDF.
2. Niki, Etsuo, et al. “Oxidation of lipids, XII. Inhibition of oxidation of soybean phosphatidylcholine and methyl linoleate in aqueous dispersions by uric acid.” Bulletin of the Chemical Society of Japan 59.2 (1986): 471-477. Uric Acid as a Chain-Breaking Antioxidant PDF.
August 12, 2017 at 9:39 am #5076
I know very little about vitamin E.
It’s not crazy to think that vitamin E might help but my doctors have recommended against this type of experimentation (vitamin C would also have been worth trying), reasoning that the aggressive supplementation likely required in order significantly impact on my UA would involve uncertain side effects, making this approach riskier than xanthine inhibitors (not to mention less reliable).
Moderately improving my vitamin intake on the other hand (for instance by eating a bit more of the relevant foods) was naturally OK’d (but without any hope that it would have much impact on my UA).
Your special condition might make the risk/reward of experimentation with large amounts of vitamin E more appealing though. Just make sure the risks are carefully assessed and the potential downsides monitored.
August 15, 2017 at 11:58 am #5178
@Keith – hi mate, thanks for those articles. I’ll get down to reading them and post my findings on a separate thread.
I might give it a try before starting febuxostat 🙂
August 31, 2017 at 1:13 pm #5540
After speaking with my haematologist Vitamin E is indeed a powerful anti-oxidant and prevents from damage to cells. Now how it will apply to the break down of cells in healthy patients I can’t answer.
The mechanism is all about how it protects cells from oxidation and prolongs the life of cells therefore decreasing the release of uric acid release from there rapid breakdown. The general idea is mainly applied to people with secondary gout as a result of blood condition disorders. I am not sure however if they apply to medications that accelerate blood cell breakdown such as chemotherapies in cancer patients etc.
By no means are my ideas medically based neither are they provided as treatment options by the doctors I see but from my understanding I can see potential gains (decrease in UA) they may provide.
I’ve started a short 3 week course of Vitamin E (400IU) prior to starting febuxostat and I’ll be measuring my blood UA levels in another week or so.
I’ll update you and nobody with the results soon. Should be interesting.
August 15, 2017 at 10:35 pm #5195
@nobody – How you doing pal.
Question for you, you mention;
I’d be more concerned about the damage inflammation is doing than pain but sometimes, pain relief is indeed what you want.
I wanted to know what you mean by this statement as I remember you mentioning you have had long attacks and after pains for over a month so you may have better experience then me. Does long term inflammation actually cause issues? More specifically, can NSAID’s which reduce this inflammation correct those issues that have developed and reverse the damage (if any) or would they stop it temporary until the dose wears off?
For that matter how did you resolve your long term inflammation, did it just get less and less over time or when starting febuxostat?
August 16, 2017 at 8:44 am #5217
I’m OK. Hope you are too.
I think we already went over this (or at least part of it) so I’ll try a different, synthetic approach…
Painkillers work quickest but only make you feel better and do not prevent damage.
NSAIDs work fairly quickly to reduce inflammation as well as violent damage but in my experience do not reliably put a stop to existing inflammation.
Colchicine works slowly but, in addition to its use as a prophylactic, actually seems to put a stop to existing inflammation. It won’t quite stop slow damage if crystals are forming obviously. And because it acts slowly, it’s not as effective as NSAIDs in preventing violent damage. It does however help prevent all kinds of damage including indirect damage such as the effects of long-lasting mobility loss.
Simply Waiting is the slowest solution. It works every time if you’re patient enough. But like painkillers, it does nothing to prevent damage.
I don’t have enough experience with corticosteroids and suchlike (never used that orally or intravenously) to comment on where they fit in the picture.
By the way, since you had asked about that the other day, I tried febuxostat+colchicine+NSAID+PPI (the last is apparently not something you require) during a flareup and it went well. Like I had told you, I didn’t take a very large amount of colchicine (less than I would have if I hadn’t taken an NSAID) because I like to experiment by starting with what seems the least risky before moving on to what might cause more side effects.
I also tried a PPI without an NSAID to pin down the cause of minor side effects and oddly enough, that did seem to relieve inflammation. Probably a coincidence.
December 17, 2017 at 7:38 pm #6168
Guidance on febuxostat, colchicine, and NSAIDs
Thank you for creating this amazing resource. I am posting on behalf of my husband, who has suffered increasingly severe gout for eight years.
His GP fobbed him off for most of that time. We got the diagnosis about a year ago. Unfortunately, I don’t have his most recent blood results yet, but the last urate level was around 300 and had been over 500 to start with. But his attacks are becoming more frequent, severe and lengthy.
He is currently taking 80 mg Febuxostat and using colchicine and NSAIDs during attacks. Unfortunately, he has a kidney GFR of 59, so there’s not a lot of room for manoeuvre. He has changed his diet to exclude sugar and processed foods. Also, cut down on meat drastically, and upped the veg. So far, he’s lost a stone in weight.
We see the rheumatologist on Tuesday, and I was wondering what were the right questions to ask, and avenues to explore. Any suggestions? We are also working out way through the resources on this site.
Thanks in advance for any replies, Sian
December 18, 2017 at 4:56 am #6169
My first thoughts are that your husband is on the way to gout recovery, but may need help to avoid the potholes. In this case, the potholes that your rheumatologist might help with are:
1. Preventative Colchicine
Rather than taking colchicine as required, it is often a good idea to take it as a preventative. Then your husband might need additional colchicine with NSAIDs on the worst days. The length of time for preventative colchicine varies from two weeks to six months, or more. So, that is the first thing I would ask about.
2. Different Febuxostat Dose
There are 2 schools of thought on this. My preference is to go for the maximum tolerable dose of uric-acid lowering medicine. In this case, febuxostat. So that old uric acid crystals dissolve as soon as possible. Also, I would support this with preventative febuxostat, as mentioned.
Other people have suggested a gentler course, with a less aggressive approach to uric acid-lowering. There’s no right or wrong here. So, it’s another good topic to discuss with the rheumatologist.
3. Blood Tests
As well as uric acid, your medics should test for kidney function and liver function. Because those tests give early warning signals for potential side effects. Also, the liver function test is particularly important for febuxostat patients.
All in all, Sian, I reckon your visit on Tuesday is mostly about reassurance that progress is satisfactory. After years of shoddy treatment, it seems to me that your husband is on the right track. So, I reckon a few more months will see him fully recovered from gout. It would be nice if your rheumatologist can confirm that. 🙂
December 18, 2017 at 9:01 am #6175
Thank you so much for your swift and incredibly helpful response. I just read the potholes page and feel I have a better understanding of what we’re aiming for. This is the first time we’ve had a workable paradigm for managing this unpleasant and potentially fatal condition. I just wish they had you training GP’s!
I also read the paper on the dark side of colchicine, and it made me quite cautious about the med. With a preventative dose, is there an amount that you know you don’t want to go above?
I know my husband needs to keep a diary, and have tried to see if there’s a template on the site, but haven’t seen one. Did I miss it?
Thank you again Keith for your wisdom and kindness. It’s such a relief not to be alone with this.
December 18, 2017 at 12:15 pm #6182
Wow! Thanks, Sian, you remind me why I do this in a very kind way.
I’m currently rethinking my ideas on the best way to keep a gout diary. Because I think I over-complicated my previous attempt. So, hopefully, I can restart that in the New Year.
Moving on to colchicine. I think you are right to treat it with caution. Because it isn’t best for everyone. But, I feel it’s vital to have an effective pain control package during the early months of uric acid lowering.
Colchicine is particularly effective in quelling the riot that takes place in our bodies when our immune system goes on the rampage against uric acid crystals. But the downside is, by suppressing the immune system, we might be more likely to get an infection. As with all medicines, it’s a question of balancing risk and reward.
If your husband has doubts, then tomorrow is the ideal opportunity to discuss pain control with your rheumatologist. Because there are many different gout pain relief options, with different risk-reward profiles.
Good luck to both of you.
December 18, 2017 at 3:31 pm #6184
The highest preventative colchicine dose I would be comfortable using for an extended period is 1mg per day. But I do not have a kidney problem.
And Keith is right to stress that every case is different. Do not increase the dose without a doctor’s approval and, in case of a large dose increase, pay attention to side effects (write them down) and do not wait too long before the next blood test which could potentially come back with a red flag.
Blood tests will also tell you if the febuxostat dose needs to be adjusted. Urine testing might also tell if your husband’s diet is kidney-friendly enough.
While your husband is still experiencing attacks, I would recommend making sure he drinks plenty of water (especially if the ambient temperature is a bit high or if he’s been sweating) and being careful with anything that can potentially cause dehydratation such as alcohol.
But most of all, your husband will need patience.
December 18, 2017 at 7:20 pm #6186
Thank you Nobody for your very helpful response. I have taken on board your cautions and we will be making no dosage alterations without the doc’s oversight. And thank you Keith – this is the first time I have clearly understood that colchicine can have an immuno-suppressive effect. I guess my husband’s strong familial history of auto-immune disease is partly what has predisposed him to gout.
I will be pressing the specialist tomorrow for their thoughts on why he seems to be worsening, with less and less time between attacks. We were both prepared for an uncomfortable few months on starting the meds, but a year in, with lifestyle change as well, we are surprised that things are not looking up. I fear he may be in the place you talk eloquently about Keith – of being stuck on a regieme which is not effective enough to de-bulk thoroughly.
But as you have both so wisely said, patience! He doesn’t drink alcohol, he hydrated, and he’s eating a Mediterranean diet.
Thanks again for sharing the journey. I’ll let you know how we get on.
December 18, 2017 at 9:50 pm #6187
More frequent attacks could on the contrary be a sign that the treatment is working more efficiently (as well as a sign your husband might benefit from beign constantly on colchicine for a little while).
Individual attacks being more severe and lasting longer however, I would not see that as a good sign. The thing is, you could easily get the impression that attacks are getting worse when they’re merely getting more frequent if you’re not taking into account numerous shorter and milder attacks.
The following might sound like reading tea leaves (I certainly can’t cite medical research to back it up!) but I think the duration of the average attack (taking even the mildest ones into account) matters more than the frequency of the serious ones.
I don’t know that there’s any treatment that can entierly prevent debilitating attacks during the “de-bulking” phase, especially after many years of untreated gout.
But one downside to febuxostat (as well as allopurinol) is that it does not directly help the body get rid of the uric acid which is released in the blood during attacks. Usually that is not a problem but with kidneys which are not working very well, I guess it could sometimes cause undesirable spikes in the amount of uric acid mixed in the blood. Tests done between such spikes would not show high uric acid.
80mg febuxostat should already be doing a very good job of preventing the body from producing much uric acid but maybe the doctor you’re seeing tommorow could determine if some other treatment in combination with febuxostat might help the kidneys in evacuating the uric acid which had formed before your husband started taking febuxostat. But I have no idea what if anything would be appropriate given your husband’s kindey problem.
December 19, 2017 at 5:58 pm #6199
Just wanted to update this thread after our appointment with the rheumatologist. He has increased the dose of febuxostat to 120 mg and suggested taking 1000 mcg colchicine daily for a month in split doses.
They are still waiting for the MRI results back, but he suspects that my husband has another form of inflammatory arthritis at work in addition to his gout, given that much of his pain is present in his spine, shoulders, and tendons. On that basis, he has suggested he add Naproxen 500 mg daily, with 300 mg ranitidine.
Not sure about how the kidneys are going to cope with all this. I asked about referral to a nephrologist, but he said best wait until the MRI results are back.
The latest blood tests showed reduced cholesterol into the normal range, and urate level of 250. The doctor felt this was likely to a ‘false negative’ in terms of urates.
My husband is starting another flare in his big toe. Fingers crossed that the new dosing will bring us to steadier ground.
Thank you again for your help. Your responses helped us ask better questions and I think get a more proactive response. We return for review in the same department in three months.
December 19, 2017 at 6:35 pm #6201
Some doctors do not realize how powerful febuxostat is. Why would 250 be such a surprising result on 80mg? That dose is easily sufficient to account for a 50% decrease in the amount of uric acid in the blood.
If your husband is going to take an even stronger dose, make sure the side effects are being carefully monitored. In particular, some doctors seem to be oblivious to liver function test anomalies until the values reach a very high level. And don’t allow the doctors to keep his dose that high after gout symptoms have stopped.
December 21, 2017 at 5:00 pm #6271
Hello Sian, being in similar situation I would also like to back a few of nobody’s comments in a concise fashion.
1. Febuxostat is a powerful drug. I took 20mgs and my UA dropped almost 100ummol. Make sure you closely watch the results on UA levels.
2. Check your liver markers (Albumin, Alanine Transaminase, Alkaline Phosphatase, Bilirubin). These are important numbers for Febuxostat as it is metabolised in the liver and not the kidney. These should be checked with every dosage change.
3. Make sure you have a blood test called FBC (Full Blood Count) after starting and increasing dosages of Febuxostat to make sure cell counts are not affected.
4. Ask about a 24hour uric acid excretion test. This should help to get an idea of just how much he’s body is eliminating.
5. Although an MRI will give you a fantastic picture of what is going on try and also get an Ultrasound scan / X-Ray to see if any joint erosion has already taken place.
December 26, 2017 at 11:01 am #6289
Thank you very much for your great pointers Fallars. A 24 hour uric acid excretion test is such a good idea, and I’m surprised the consultant didn’t suggest it. We will contact his secretary and see if we can arrange one. He is having his bloods taken every two weeks at the minute, to monitor kidney and liver function. I will check that a FBC is added.
Thanks again for your help,
March 13, 2018 at 10:32 pm #6639
Blood test done. Results expected on Thursday with rheumatologist on Friday and will update you in a separate post.
I was wondering if you could help with a few questions.
1. As you know I started Febuxostat last November and was around 58 kilos then. During the recent appointment I was down to 54 kilos and raised this with my haematologist. A few possible reasons were discussed one being diet. I told her I had cut down my sugars a lot which was a possible reason. From my own research afterwards I’ve come to know that drinking lots of water can also cause you to lose weight. What I wanted to know buddy is when you started Febuxostat did you lose any weight or were you always a large quantity water drinker therefore your weight remained the same?
2. Now I know we discussed the vegetable purine content vs the meats content and you have substantial belief that vegetable purines create the same effect as meat purines however do you know of any actual articles that prove this? The reason I am asking is because I have heavily increased my vegetable intake whilst mildly increasing my meat intake and wanted to know if it really makes a difference purine wise (I know this is healthier but I wanted to know purine wise).
3. In light of the increase in UA levels despite increasing the dose, maybe I am overthinking this but do you think it may be a simple case of ‘Febuxostat’ placement in the tablet? For e.g. where the actual drug composition resides in the pill. Maybe the distribution is biased to a given side or just a random concentration on either side or even the most concentrated parts being the edges of the pill as the largest UA drop was during 20mgs (approx 100ummol with hardly any further drops when going to 40mgs which if cut in half takes an empty or very low concentration middle? Maybe attempting to take the edge of the pills will result in a far greater drop?
There are a few more questions but I’ll ask them a little later.
March 14, 2018 at 9:57 am #6645
I can only comment competently on (2) as my febuxostat experience is limited to what I’ve written on GoutPal.com and these questions seem to go well beyond that.
The purine source (animal or plant) debate is interesting yet complex and largely misses the point.
Scientists have shown that different types of purines are digested differently. But most of the research is aimed at understanding purine metabolism. So very little useful purine research on gout sufferers is available. More importantly, I cannot recall anything like the type of investigation that is done when clinical research compares treatment options. Because the only research that matters is where gout sufferers are in controlled environments. Then we can compare different meal groups. But importantly, we must measure the purine type as well as its animal or plant origins. Also, we must account for temporary animal purine inputs from weight loss in the humans being studied.
With that level of research, we could gain more insight than current research. Which basically tells us that diets based on plant purines are more gout-friendly than diets based on animal purines.
But the real point is that we also need to consider non-purine issues that are related to this. Not least is Kanbara’s findings that alkalizing foods (mainly plants) are better than acidifying foods (mainly animals) at pissing away the purines.
In short, you need to consider what goes out as well as what goes in.
Finally, to bring this back to the topic title, I have a question I should have asked before I wrote the above. Why on earth does this matter when febuxostat effectively makes all food purine-free?
March 14, 2018 at 11:33 am #6646
1. When I started Febuxostat, doctors insisted I take too much. I had pretty bad blood tests, little appetite and obviously lost some weight (not a lot).
2. I have no beliefs about purines but I believe already asked you: what is there to prove? Purines are molecules, not life forms. Like Keith says, the amount of febuxostat you’re taking is supposed to dramatically lower the amount of uric acid made from the purines in your body anyway.
3. I wouldn’t worry about where the stuff is in the pill. But surely you haven’t thrown away pill fragments. Taxpayers are paying for them even if you’re not.
March 14, 2018 at 1:34 pm #6650
1. Ah right, maybe its the mass increase in the water intake as my appetite hasn’t really changed much outside of the decrease in sugar.
2. The reason I was asking was because I wanted to increase my educational curve on the subject (are purines the same across the entire food spectrum or do they differ between fruits, vegetables, meats, in their real contribution to UA etc) and I vaguely remembered you said you think they all contribute regardless from the food they come from.
3. Oh! these tablets are paid by taxpayers like myself? I guess my cat is not going to be too happy without it’s daily nibble any more.
March 14, 2018 at 1:55 pm #6651
@Keith – Agreed on the Febuxostat side of the questions. I guess over time these answers will probably come to me naturally through experience.
I love the ‘Why does this all matter if Febuxostat is floating around your system’. Truth be told, there are so many sites out there that say fruit and veg count and sites that say they don’t so just eat more without giving thought to purine content and this site is my primary reference point for answers. Since the situation was a little up-and-down with haematological problems whilst on Allopurinol I was trying to take pre-emptive action should Febuxostat fail because of my haematological condition. I guess pre-paring for the worst. Call it a bad habit 🙂
I should really try this Alkalising approach to see how it impacts my levels. I’ll have a look at your document repository to see if there is anything there on UA creation via cell turnover and if Alkalising actually helps or increases potentially increases turn over.
Maybe I should go back to university and study bio-science and research as at this rate my brain capacity for my regular job (which requires tons of research) is fast depleting 🙂
March 14, 2018 at 2:44 pm #6652
I don’t know a better way to learn about purines and uric acid than to read the litterature.
Briefly: purines vary between particular foods rather than between convenient categories like animals and plants. Purines are no different from anything else that’s found in food in this regard. But unlike proteins for instance, I’m not aware of a comprehensive database with quality information about the amounts of purines in foods. So it can get complicated quickly… arguably more complicated than it’s worth.
Some plants have next to no purines so they’re safe. And we know replacing meat with dairy and eggs (also next to no purines) works. We also know soy is quite nutritous relative to its purine content and soy eaters seem to have good SUA numbers as well. Other plants though are nowhere as nutritous yet pack a non-negligible amounts of the most potent purines. So you don’t want to rely on any plant for nutrition. It’s always going to come down to the amount you eat so you only have to worry about plants you’re eating in large amounts.
Most people would I think eat rather small amounts of vegetables even if you told them to “just eat more” so that would be good advice for them.
My suggestion: don’t worry about this yet. Diet isn’t as effective as drugs.
March 16, 2018 at 11:04 am #6657
Correct – all this diet stuff isn’t going to reduce levels from 585ummol to 360ummol and vice versa, I’ve always known dieting at that UA level is a waste of time (rheumatologist said no matter how hard you diet you’ll never get more then 10% benefit in reduction). The ultimate direction in which I was trying to head was to see if vegetables purines count or are these non contributing purines [in the sense that if they get excreted or broken down before metabolising into UA]. For what its worth, I believe all purines are purines whether be from animals, fruits or vegetables. I’ve introduced many new colours to my diet namely Kale and this link seems to say its fine https://goutpal.net/forums/topic/kale-information/ (a little reading on this little green veg shows enormous health benefits).
March 16, 2018 at 12:50 pm #6658
Rheuma would be wrong if they put it that categorically. You can get a lot more than 10% out of diet. I did, no thanks to any doctor’s dietary advice. That was still not enough for me in the long run but it would be enough for some people.
March 16, 2018 at 12:57 pm #6659
I found numbers for “Vegetable drink powder from Kale”. That contains mostly guanine which is a harmless purine. I don’t know if the same can be said about what you’re eating but the plant doesn’t seem to contain a whole lot of purines in the first place.
March 16, 2018 at 1:41 pm #6660
Maybe he just being a little pessimistic and wanted to give me the easiest solution at the time which was a cheap box of Allopurinol and get me on the once a year visit patient list. In any case 10% in the lower quartile actually does make sense. Consider a patient with 400ummol – 10% = 360ummol which actually just about takes you into the safe zone. So 10% is all some people need I guess.
That contains mostly guanine which is a harmless purine.
I was trying to obtain this answer all along. So there are harmless purines and hurtful purines? [different types of purine that metabolise into insignificant UA values regardless of their start purine content value].
Rheu appointment today, this will be interesting.
March 16, 2018 at 2:46 pm #6661
Yeah, eating guanine seems to have very little effect on people’s SUA for some reason. But adenine does have an effect and you find that everywhere you find purines. It’s just that the relative amounts vary a bit between foods.
Hypoxanthine seems to be a good bit worse than adenine and you don’t find that purine everywhere. But some plants have significant amounts so avoiding the stuff is unfortunately not quite as simple as avoiding animal flesh.
I doubt doctors would recognize gout symptoms in patients with 400 but yeah, even 10% might be enough in some cases.
In practice though, the pill is almost always going to be a better solution whenever people have recognizable symptoms because you ideally want uric acid lower than 360 during the initial phase of ULT.
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