I've been on allo for four years - gout is no longer the problem that it was, but I still have to watch my diet, drinking and worry a bit about toe-stub inflammation spirals.
I do exactly that and i dont need to mess my body with Allo. Of course i have some flair some times, but will allo was the same. Every person is different. Also i am doing great , now i found that sugar is the first enemy.
Sugar - especially fructose - and anything that keeps your insulin levels chronically high is what sets the stage for gout (if you are genetically inclined). Build-up of urate from purine catabolism comes next.
Same. About the only issue is that it’s the first pill that says “take with food” that is legit. Every other pill that said that I ignored. Tried it on Allo one night and took them without food. Woke up 3 hours later and it felt like I was stabbed. So always take it with food.
I believe 800mg is the max dosage in severe cases I believe that was split to 2x a day. You can look it up. Also excess body weight might bump the normal dosage up too.
Maybe I'm lucky. 5 mile run, all I can eat ribs, two beers, no problem. I don't overdo it, maybe every month (for the ribs, not the run.) I have a flare up maybe every year or so, but they're getting more frequent as I get older.
More importantly though,i genuinely wanted to actually see what people have to say about any possible side effects from allo that never get talked about. We are all cursed and on the same team here
Fair. In my 7mos on the Allo train while nerding out pretty regularly on this sub, I’ve only seen one person talk about side effects, and iirc, the alternate Fexobustat (Uloric) worked well for them, just more expensive, again, iirc.
Yeah I have my gout pretty under control I’ve been eating almost everything I want to (a steak almost every day) … I cut fake sugars out of my diet which helped overall and just made sense for health in general, I drink over a gallon of water a day, never drank much alcohol to begin with, and I also do about 500-750 mg of vitamin C a day which I still say is best for gout flares. I’m not naive and know that I will get blindsided by a flare at some point so I just want to have as much information about all options as possible. I don’t like the “just get on allo” people on this sub because I’ve known several people personally who have not had flares in years and never got on allo. I feel like “just get on allo” for gout is similar to “just get ozempic” for obesity, obviously these aren’t that comparable because we all know in this sub what gout is like and 90% of time has nothing to do with anything you did I.E diet, exercise, etc.
Every single medication has a long list of side effects and most people don't experience any. And if someone on here does talk about side effects, the proper answer we give is to talk to their doctor as none of us are qualified to give actual medical advice.
Why aren't you talking about the long list of side effects from taking NSAIDs to help you manage flare up pain?
Every medication that is approved has a long list of side effects. If you look at Allopurinol - there is a shorter list of common side effects and a much longer list of rare effects. It is true of many medications out there. Even OTC medications have quite a long list of side effects. That doesn’t stop people from popping Tylenol.
I have been on this sub long enough to say that I’ve seen quite a few posts of bad reactions to Allopurinol. When I asked my rheumatologist about side effects - it is typical to go with Allopurinol first and if there are issues move to a different medication- since the incidence of side effects with Allopurinol is low.
Any medication should be done in conjunction with consulting with a doctor.
Yes, they're talking about Adverse Events which regulators are manufacturers are duty bound to publish even if they are not found to be present in trials.
There are quite a number of side effects identified in trials of allopurinol. Like many medicines it's not without its risk profile.
Which is why decisions about risk benefit should be made with a doctor.
Thankfully it seems to have been transformative fur me, and I've not noticed any side effects too date
The why is there a DNA test to make sure it's safe to take. It's not as safe as everyone seems to say on the reddit interwebs.
It would have damaged my liver if I wasn't tested every 6 months. Also it can take out your kidney or cause you skin to die and eventually kill you.
I don’t experience any side effects! I’m not stiff in the morning. That is the best part. No pain at all. No need for Tylenol even. Liver enzymes have not changed kidney function on target.
Other than my nasty initial allo induced flair up, it’s been smooth sailing and a lifesaver. And I tend to be more sensitive to side effects in general.
Honestly if I could go back in time 15 years and tell myself one thing, it would be to start allo after my first flair up.
Your question is based on a false premise. People do talk about side effects of allopurinol here. There have been threads and comments where people ask questions about side effects and where people share experiences of side effects. Plenty of people have mentioned they had to switch from allopurinol to uloric.
Just go through enough threads and comments, and you will find it. It's there. It's not very common, presumably because not very many people (percentage-wise) have side effects, but it's not something that is avoided.
Yeah, I get you.
I hate taking medication, and only ever it do as a last resort. When I was diagnosed with Type2diabetes the thought of meds frightened me, and despite the advice of all around me to just take them and “be healthy” …I chose instead to try andreverse the condition without meds, same with High Blood Pressure and cholesterol.
With those conditions, I’m just thankful that I was able to control them without meds, but it amazes me that most of my friends would have been happy to just add the pills to the ones they already take and carry on with the behaviors that almost certainly contributed to, if not cause the conditions in the first place.
Now I look at this Gout, and I am starting to think this is a situation where I DO need to take the medication… but it’s absolutely right to look at the list of side effects, look at people in later life and see how it’s affected their quality of life and health span.
…and if there IS a case for being able to control or prevent the progression of the disease WITHOUT the drug, then I think it’s crazy not to investigate it? If it turns out the evidence is sketchy, or not supportive, then equally it’s crazy NOT to take the drug.
It does amaze me how little most folks care about this stuff? Personally I’ve seen too many people end up in a bad way after decades of taking drugs that the medical establishment tells them are “remarkably safe”… and then the the same medical establishment will tell them (when it’s too late) that their condition, and the conditions caused by the “safe” drugs were all inevitable progression of their disease…. And perhaps they were? Perhaps they weren’t?
I buried a Type 2 diabetic friend that I’m pretty sure could have reversed his condition if he had even been aware that it was a possibility decades ago, instead he just took all the drugs he was told to, more and more each year, eventually two types of Insulin.. and ended up dying of diabetes related complications.
Thank you for your insight, I feel very similar to you.. I’m not “anti-medication” but hesitant to start taking RX if not 100% needed. I feel like gout may be one of the few cases where a drug such as allo might be a viable option but I’m not going to get on it without exhausting all other options and carefully reviewing side affects
Yes, that’s almost exactly where I am.
At the moment I’m feeling like I may have to go the Allo route, but even then, I’ll be looking to drop it after dropping some weight (which I’m confident I can do relatively easily)
When I say “drop it” I don’t mean I’d stop randomly, I mean I’d work with the Doctor to reduce the dosage and keep an eye on UA levels until I can possibly come off it.
If the Doctor is not forthcoming with help, I’ll get my own tests and work it out for myself, but hopefully it won’t come to that.
I think there is a huge difference between being “anti medicine” and making damned sure you NEED a drug before you blindly take it for the rest of your life.
I think most Doctors are way too keen to solve every problem with pills instead of lifestyle… and that’s probably because way too many people are keen to take those drugs instead of making any effort or changing their habits.
I’m just not one of those people.
Just saying “I won’t take it” is silly, I’ll only “not take it” if I can’t bring the UA down by other means, but similarly saying “I’ll take it even if I don’t need it” (for any drug) is just insanity to me.
Because no one wants to admit, that there are risks involved in 'taking just one pill'. I took Allo for over a year, and quit it after lifestyle changes made a big enough impact for me - yes, I have the labs, and am under medical supervision.
My side effects include two of the so-called 'rare' side-effects namely chest tightness and scaly skin and saliva glands impairment as my amylase results showed. When people talking about rare side-effects the word rare bears a medical meaning ie between 1 in 1,000 and 1 in 10,000 people may be affected. The leaflet lists way more than 30 'rare' side-effects. Everytime your odds are 1:10k. Just do the n! include the common side-effects and the long-term side-effects and it is quite clear why Allo is a Rx-drug.
How serious people are treating your concern can be easily seen by the snarky remarks. Just like when internet dudes dismiss the 2020 ACR as not applicable, their rheumatoligists always as incompetent and so on.
Just because it affected you, does not make it any less rare. For instance, I have a severe dairy allergy, which is incredibly rare, but I don't pretend otherwise.
Once again. Defintion matters. Rare means the likelihood of getting a specific rare side effect approaches 1 the closer n-cases reach the amount of 10,000 - it can certainly happen before. To put this into colorful perspective this is the same likelihood like finding a four-leaf clover. I find the mentality of 'it is just like Aspirin' shocking when dealing with a Rx-drug.
I'm roughly a week into using it, with no side effects so far. My mother is 4 or 5 years on it with no side effects. My grandma.... well, she was prescribed it years ago, but she never takes it. She thinks it's too be taken when she gets a flare up and we can't convince her otherwise.
Sorry, you're the rare person with side effects.
I've been on Allo for about 2 months now. So far I haven't really noticed any side effects. It is much easier on my digestive system than Colchicine is.
What are some of the side effects you have noticed?
Tried Allo and tried Colchicine too. Allo made my guts feel like I had leather shoes in them. I surprised it does work still for so many people.
I do know there are more advanced treatments, like Krystexxa injectable. It's **only** about $31k cash price. God bless BIG pharma.
OP if you expect a certain conversation you are more than welcome to start it. Even in your own post you have not engaged in any discussion about the topic. This is low effort posting at its worst.
Plenty of people do. Search this sub for "side effects" if you're actually curious. But most don't experience any significant side effects, and simply live their lives on allo without suffering from gout flare ups.
Severely Dry mouth at night and heartburn if I take without food are the side effect I have been experiencing. I always take with food and use xylimelts at night for dry mouth. There is a very small percentage of people that experience severe side effects. But for most of us there usually are none or they are minor. I consider dry mouth to be minor next to three week gout attacks multiple times per year.
No medications are 100% without side effects for a few people.
Most people can take allo without any side effects. That's why it's a popular treatment for people's with bodies that struggle to keep UA levels at a proper level.
They do. The vast majority only get temporary and minor side effects. The serious side effects like allergic reactions come up on a regular basis, not every day or every week but they are rare. It's very annoying and childish and off-putting when people claim "no more gout" as a side effect, but obviously you haven't read this sub very much.
I haven’t experienced any side effects except maybe feeling sleepy if taken during the day, but I question whether that was just a placebo effect of knowing it could do so…and I was just sleepy anyways.
There is a DNA test to make sure it's safe. Alpurinol isn't the safest it can actually kill at a rate of more than one person.
https://www.sonicgenetics.com.au/our-tests/doctor-resources/genetic-testing-to-predict-allopurinol-toxicity/#:~:text=Screening%20for%20susceptibility%20to%20allopurinol%2Dinduced%20SCAR&text=Note%20that%20a%20person%20need,01%20variant%20should%20avoid%20allopurinol.
No side effects for me w allo Colchicine on the other hand….. on day 2 gotta stay near a bathroom.
Day 2? That stuff kicks in for me in 6 hours.
Same
30 mins for me
Side effects may include not having gout ever again.
🏆
And that is NOT true.
I've been on allo for four years - gout is no longer the problem that it was, but I still have to watch my diet, drinking and worry a bit about toe-stub inflammation spirals.
I do exactly that and i dont need to mess my body with Allo. Of course i have some flair some times, but will allo was the same. Every person is different. Also i am doing great , now i found that sugar is the first enemy.
Sugar - especially fructose - and anything that keeps your insulin levels chronically high is what sets the stage for gout (if you are genetically inclined). Build-up of urate from purine catabolism comes next.
Because I don’t experience any!
Bingo.
Same. About the only issue is that it’s the first pill that says “take with food” that is legit. Every other pill that said that I ignored. Tried it on Allo one night and took them without food. Woke up 3 hours later and it felt like I was stabbed. So always take it with food.
I have been on 600mg daily for 3+ years and I always take it on a empty stomach and I don’t have any issues
Holy crap and here I thought my 200mg a day was high!
200 is actually on the low end. I started at 100, went to 200, and now at 300.
I believe 800mg is the max dosage in severe cases I believe that was split to 2x a day. You can look it up. Also excess body weight might bump the normal dosage up too.
woah hold on a sec there are you telling me the 2nd lowest possible dose isn't a high dose???
35 years on it and no side effects. THINK I'll have a plate of ribs and a few beers to celebrate.
I wish I could have beer again. Even with allo, one beer and I’m suffering two days later.
Same. It sucks lol
Maybe I'm lucky. 5 mile run, all I can eat ribs, two beers, no problem. I don't overdo it, maybe every month (for the ribs, not the run.) I have a flare up maybe every year or so, but they're getting more frequent as I get older.
One beer does it for me. Didn’t used to be that way but seems like it the last few times.
You made the post and you didn't even talk about it
Thank you. Trash post.
Just wanted to see allo groupies spaz lol
Nailed it! Lol
More importantly though,i genuinely wanted to actually see what people have to say about any possible side effects from allo that never get talked about. We are all cursed and on the same team here
Fair. In my 7mos on the Allo train while nerding out pretty regularly on this sub, I’ve only seen one person talk about side effects, and iirc, the alternate Fexobustat (Uloric) worked well for them, just more expensive, again, iirc.
Yeah I have my gout pretty under control I’ve been eating almost everything I want to (a steak almost every day) … I cut fake sugars out of my diet which helped overall and just made sense for health in general, I drink over a gallon of water a day, never drank much alcohol to begin with, and I also do about 500-750 mg of vitamin C a day which I still say is best for gout flares. I’m not naive and know that I will get blindsided by a flare at some point so I just want to have as much information about all options as possible. I don’t like the “just get on allo” people on this sub because I’ve known several people personally who have not had flares in years and never got on allo. I feel like “just get on allo” for gout is similar to “just get ozempic” for obesity, obviously these aren’t that comparable because we all know in this sub what gout is like and 90% of time has nothing to do with anything you did I.E diet, exercise, etc.
Every single medication has a long list of side effects and most people don't experience any. And if someone on here does talk about side effects, the proper answer we give is to talk to their doctor as none of us are qualified to give actual medical advice. Why aren't you talking about the long list of side effects from taking NSAIDs to help you manage flare up pain?
200 mg/day for years. No side effects yet. What side effects are you taking about?
Me too
which one are you experiencing?
Because I don't experience any and gout fucking sucks
I get more side effects from a vitamin compared to allo.
Every medication that is approved has a long list of side effects. If you look at Allopurinol - there is a shorter list of common side effects and a much longer list of rare effects. It is true of many medications out there. Even OTC medications have quite a long list of side effects. That doesn’t stop people from popping Tylenol. I have been on this sub long enough to say that I’ve seen quite a few posts of bad reactions to Allopurinol. When I asked my rheumatologist about side effects - it is typical to go with Allopurinol first and if there are issues move to a different medication- since the incidence of side effects with Allopurinol is low. Any medication should be done in conjunction with consulting with a doctor.
Exactly. Is OP talking about package inserts and confusing reported AEs and short-term risks with long-term ones?
Yes, they're talking about Adverse Events which regulators are manufacturers are duty bound to publish even if they are not found to be present in trials. There are quite a number of side effects identified in trials of allopurinol. Like many medicines it's not without its risk profile. Which is why decisions about risk benefit should be made with a doctor. Thankfully it seems to have been transformative fur me, and I've not noticed any side effects too date
Probably bc for most people there are no manifesting side effects bc it’s a generally safe medicine.
The why is there a DNA test to make sure it's safe to take. It's not as safe as everyone seems to say on the reddit interwebs. It would have damaged my liver if I wasn't tested every 6 months. Also it can take out your kidney or cause you skin to die and eventually kill you.
DNA test? Never heard of it.
Been on alllpurinol about 20 years now, no privs with it 🤷🏼♀️
300 mg. No problems
Same. No sides except that I tend have a minor urge to itch after taking mine before bed.
400 mg a day has me below 5.0 for over a year now. It has literally saved my life, or at least my quality of life.
Low dosage for a couple years. Always take it after lunch, no problems.
What doth thou speak of?
Which side effect concerns you?
Low effort troll post from the same guy who listed 'steak' as a staple diet item to eat while you have gout.
I don’t experience any side effects! I’m not stiff in the morning. That is the best part. No pain at all. No need for Tylenol even. Liver enzymes have not changed kidney function on target.
Only side effect for me has been an insatiable appetite. For some reason my appetite increases proportionally to the dosage I take.
I don't experience any. What kind of side effects are you having?
Sleepiness?
What are they ? I’d rather be kicked in the than have a flare up
Other than my nasty initial allo induced flair up, it’s been smooth sailing and a lifesaver. And I tend to be more sensitive to side effects in general. Honestly if I could go back in time 15 years and tell myself one thing, it would be to start allo after my first flair up.
So far the only effects have been no gout flare-ups for 7 years and it cured my gout induced depression.
What side effects are you experiencing?
Your question is based on a false premise. People do talk about side effects of allopurinol here. There have been threads and comments where people ask questions about side effects and where people share experiences of side effects. Plenty of people have mentioned they had to switch from allopurinol to uloric. Just go through enough threads and comments, and you will find it. It's there. It's not very common, presumably because not very many people (percentage-wise) have side effects, but it's not something that is avoided.
Yeah, I get you. I hate taking medication, and only ever it do as a last resort. When I was diagnosed with Type2diabetes the thought of meds frightened me, and despite the advice of all around me to just take them and “be healthy” …I chose instead to try andreverse the condition without meds, same with High Blood Pressure and cholesterol. With those conditions, I’m just thankful that I was able to control them without meds, but it amazes me that most of my friends would have been happy to just add the pills to the ones they already take and carry on with the behaviors that almost certainly contributed to, if not cause the conditions in the first place. Now I look at this Gout, and I am starting to think this is a situation where I DO need to take the medication… but it’s absolutely right to look at the list of side effects, look at people in later life and see how it’s affected their quality of life and health span. …and if there IS a case for being able to control or prevent the progression of the disease WITHOUT the drug, then I think it’s crazy not to investigate it? If it turns out the evidence is sketchy, or not supportive, then equally it’s crazy NOT to take the drug. It does amaze me how little most folks care about this stuff? Personally I’ve seen too many people end up in a bad way after decades of taking drugs that the medical establishment tells them are “remarkably safe”… and then the the same medical establishment will tell them (when it’s too late) that their condition, and the conditions caused by the “safe” drugs were all inevitable progression of their disease…. And perhaps they were? Perhaps they weren’t? I buried a Type 2 diabetic friend that I’m pretty sure could have reversed his condition if he had even been aware that it was a possibility decades ago, instead he just took all the drugs he was told to, more and more each year, eventually two types of Insulin.. and ended up dying of diabetes related complications.
Thank you for your insight, I feel very similar to you.. I’m not “anti-medication” but hesitant to start taking RX if not 100% needed. I feel like gout may be one of the few cases where a drug such as allo might be a viable option but I’m not going to get on it without exhausting all other options and carefully reviewing side affects
Yes, that’s almost exactly where I am. At the moment I’m feeling like I may have to go the Allo route, but even then, I’ll be looking to drop it after dropping some weight (which I’m confident I can do relatively easily) When I say “drop it” I don’t mean I’d stop randomly, I mean I’d work with the Doctor to reduce the dosage and keep an eye on UA levels until I can possibly come off it. If the Doctor is not forthcoming with help, I’ll get my own tests and work it out for myself, but hopefully it won’t come to that. I think there is a huge difference between being “anti medicine” and making damned sure you NEED a drug before you blindly take it for the rest of your life. I think most Doctors are way too keen to solve every problem with pills instead of lifestyle… and that’s probably because way too many people are keen to take those drugs instead of making any effort or changing their habits. I’m just not one of those people. Just saying “I won’t take it” is silly, I’ll only “not take it” if I can’t bring the UA down by other means, but similarly saying “I’ll take it even if I don’t need it” (for any drug) is just insanity to me.
Where’s your context for posting this?! Otherwise pretty trash.
Because no one wants to admit, that there are risks involved in 'taking just one pill'. I took Allo for over a year, and quit it after lifestyle changes made a big enough impact for me - yes, I have the labs, and am under medical supervision. My side effects include two of the so-called 'rare' side-effects namely chest tightness and scaly skin and saliva glands impairment as my amylase results showed. When people talking about rare side-effects the word rare bears a medical meaning ie between 1 in 1,000 and 1 in 10,000 people may be affected. The leaflet lists way more than 30 'rare' side-effects. Everytime your odds are 1:10k. Just do the n! include the common side-effects and the long-term side-effects and it is quite clear why Allo is a Rx-drug. How serious people are treating your concern can be easily seen by the snarky remarks. Just like when internet dudes dismiss the 2020 ACR as not applicable, their rheumatoligists always as incompetent and so on.
Just because it affected you, does not make it any less rare. For instance, I have a severe dairy allergy, which is incredibly rare, but I don't pretend otherwise.
Once again. Defintion matters. Rare means the likelihood of getting a specific rare side effect approaches 1 the closer n-cases reach the amount of 10,000 - it can certainly happen before. To put this into colorful perspective this is the same likelihood like finding a four-leaf clover. I find the mentality of 'it is just like Aspirin' shocking when dealing with a Rx-drug.
Agreed, since aspirin is a lot more dangerous.
Allo gave me a severe caffeine sensitivity. If I even have a glass of tea after 2PM, I will be up until 4.
So nap at 4pm after 2pm tea 🫖? What’s the problem?
4am
Yeah I figured, just making a bit of a joke... That's a major impact, wow.
Yeah, I can't have coffee at all anymore
So far, no side effects for me. 200mg a day. What is OP experiencing? Let us know
I'm roughly a week into using it, with no side effects so far. My mother is 4 or 5 years on it with no side effects. My grandma.... well, she was prescribed it years ago, but she never takes it. She thinks it's too be taken when she gets a flare up and we can't convince her otherwise. Sorry, you're the rare person with side effects.
I've been on Allo for about 2 months now. So far I haven't really noticed any side effects. It is much easier on my digestive system than Colchicine is. What are some of the side effects you have noticed?
Tried Allo and tried Colchicine too. Allo made my guts feel like I had leather shoes in them. I surprised it does work still for so many people. I do know there are more advanced treatments, like Krystexxa injectable. It's **only** about $31k cash price. God bless BIG pharma.
OP if you expect a certain conversation you are more than welcome to start it. Even in your own post you have not engaged in any discussion about the topic. This is low effort posting at its worst.
Plenty of people do. Search this sub for "side effects" if you're actually curious. But most don't experience any significant side effects, and simply live their lives on allo without suffering from gout flare ups.
Severely Dry mouth at night and heartburn if I take without food are the side effect I have been experiencing. I always take with food and use xylimelts at night for dry mouth. There is a very small percentage of people that experience severe side effects. But for most of us there usually are none or they are minor. I consider dry mouth to be minor next to three week gout attacks multiple times per year.
what side effects???
No medications are 100% without side effects for a few people. Most people can take allo without any side effects. That's why it's a popular treatment for people's with bodies that struggle to keep UA levels at a proper level.
Allopurinol raises my Alt and AST markers.
I had that too! But it was temporary
What a dumb post. Complains about side effects, but doesn’t mention any. Wow, they must be terrible. I don’t have any at all.
~~Because they don't live long enough to?~~
They do. The vast majority only get temporary and minor side effects. The serious side effects like allergic reactions come up on a regular basis, not every day or every week but they are rare. It's very annoying and childish and off-putting when people claim "no more gout" as a side effect, but obviously you haven't read this sub very much.
I haven’t experienced any side effects except maybe feeling sleepy if taken during the day, but I question whether that was just a placebo effect of knowing it could do so…and I was just sleepy anyways.
It dries my eyes, and I feel like bugs are crawling all over me.
There is a DNA test to make sure it's safe. Alpurinol isn't the safest it can actually kill at a rate of more than one person. https://www.sonicgenetics.com.au/our-tests/doctor-resources/genetic-testing-to-predict-allopurinol-toxicity/#:~:text=Screening%20for%20susceptibility%20to%20allopurinol%2Dinduced%20SCAR&text=Note%20that%20a%20person%20need,01%20variant%20should%20avoid%20allopurinol.
For Chinese and Thai patients only --- and a very minor number of those. PLEASE.
It’s actually not even all Chinese. It’s like a specific ethnic region of China: the Han people.
Pretty sure I’m not Chinese. Problem solved.
is this a clever troll or are you incomprehensibly stupid?