Allopurinol for Gout

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Glassman

Original Poster:

22,543 posts

216 months

Wednesday 19th July 2023
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Can you get gout in two limbs at the same time?

After a very good run of being attack free, my (right) knee is swollen. Several days before that my right index finger felt like it was broken, but I'm not convinced it's gout too. Currently immobilised on the anti inflams.

plfrench

2,386 posts

269 months

Wednesday 19th July 2023
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Not had it in two limbs at the same time, but had my lower back and right foot at the same time.

I've got my first clinic appointment this Friday of a Treat 2 Target trial that Southampton and Keele (I think it was off the top of my head) universities are running. Be interesting to see how that goes.

Panamax

4,055 posts

35 months

Wednesday 19th July 2023
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plfrench said:
a Treat 2 Target trial.
Having read about the study it sounds exactly like what I did.
https://www.3chequers.co.uk/media/content/files/Pa...

I bought a home test kit for blood urate and take as little allopurinol as possible to,
Get blood urate within the normal range, and
Prevent flares.

As you may know, different people suffer flares at different urate levels. There's no "one size fits all" answer.

Here ya go, available from Amazon and - for anyone who's experienced the pain of gout - worth every penny,
https://www.ninelife.uk/products/uasure-uric-acid-...




Glassman

Original Poster:

22,543 posts

216 months

Tuesday 25th July 2023
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Tomorrow will be a week on crutches.

A week of my (right) knee looking like a beluga whale's forehead; my (right) foot resembling something you'd buy from Coopers joke shop for Halloween and I haven't been able to straighten my (right) forefinger to point at anything.

All three feel like gout pain.

Colchicine, anti-inflams, ice packs and gallons of water later I seem to be on the right side of recovery but not out of the weeds just yet as I cannot walk unassisted. All that water in me, and the meds nuking my stomach lining means I sound like a duck drowning when I (eventually) get to the khazi.


thetapeworm

11,239 posts

240 months

Tuesday 25th July 2023
quotequote all
Glassman said:
Tomorrow will be a week on crutches.

A week of my (right) knee looking like a beluga whale's forehead; my (right) foot resembling something you'd buy from Coopers joke shop for Halloween and I haven't been able to straighten my (right) forefinger to point at anything.

All three feel like gout pain.

Colchicine, anti-inflams, ice packs and gallons of water later I seem to be on the right side of recovery but not out of the weeds just yet as I cannot walk unassisted. All that water in me, and the meds nuking my stomach lining means I sound like a duck drowning when I (eventually) get to the khazi.

Apologies if I've lost track but were you on 100mg Allopurinol and then did you decide you no longer wanted to take it?





Panamax

4,055 posts

35 months

Tuesday 25th July 2023
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If you're in that much trouble Steroids are the heavy artillery.

Jobbo

12,972 posts

265 months

Tuesday 25th July 2023
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Glassman said:
HotJambalaya said:
I just dont really get that, unless you were having proper side effects from the allo, (and im not talking about the initial flare that some people get going onto it) why would you panic about the dose being adjusted according to your needs?
Decided that I would rather not rely on meds if I could.
I think there are enough success stories that allopurinol works for you to give it another try. You're relying on meds currently and they aren't even alleviating the symptoms. I took diclofenac and high doses of ibuprofen when first diagnosed and they didn't do very much at all. Allopurinol works by balancing your urate levels so the dose almost always needs some adjustment; the doctors go in low with the prescription, see the effect with further urate tests and work up from there.

Glassman

Original Poster:

22,543 posts

216 months

Tuesday 25th July 2023
quotequote all
Jobbo said:
I think there are enough success stories that allopurinol works for you to give it another try. You're relying on meds currently and they aren't even alleviating the symptoms. I took diclofenac and high doses of ibuprofen when first diagnosed and they didn't do very much at all. Allopurinol works by balancing your urate levels so the dose almost always needs some adjustment; the doctors go in low with the prescription, see the effect with further urate tests and work up from there.
thumbup

I remember something about being clear of an attack for something like six weeks before starting on Allopurinol. Is that the case?

Also heard someone talking about taking them during an attack?

Jobbo

12,972 posts

265 months

Tuesday 25th July 2023
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I would ignore any advice about not taking it during an attack and just get on with it, to be honest! All of that is intended to try to prevent an attack, I believe, but if you're already suffering you're just delaying the beneficial effect.

It was massively frustrating taking 100mg when I first started and still suffering gout attacks; and you can't just get a blood test next week, you have to wait a month or two for your body to settle down. But a decade or so on from starting allopurinol and getting the dosage right (I jumped straight from 100mg to 300mg), I've had at most a few pre-gout twinges since. Quite a contrast.

Panamax

4,055 posts

35 months

Tuesday 25th July 2023
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Jobbo said:
I would ignore any advice about not taking it during an attack....
I wouldn't!!

Jobbo

12,972 posts

265 months

Tuesday 25th July 2023
quotequote all
Panamax said:
Jobbo said:
I would ignore any advice about not taking it during an attack....
I wouldn't!!
Go on - what effect does it have?

thetapeworm

11,239 posts

240 months

Wednesday 26th July 2023
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Jobbo said:
Panamax said:
Jobbo said:
I would ignore any advice about not taking it during an attack....
I wouldn't!!
Go on - what effect does it have?
I was always under the impression it can trigger more attacks or make what you have last longer but it depends where you go for information and this stuff is always changing, I've also read that it's perfectly OK to start taking it during an "acute" attack and obviously it's fine to keep taking it.

Ultimately I think it's important that the OP seeks actual medical advice, gets some blood tests done to get an idea of levels and then hopefully gets some 300mg allopurinol and gets their baseline down to a point where the issue is being managed effectively and the odd venture into the realm of "bad" food and drink isn't impactful.

I watched this the other night, I was amazed that they didn't mention medication at all and that the chap in question was still wanting to eat and drink the stuff he was, I can't even begin to imagine the pain he was in based on what's I've experienced. This clip focuses on the treatment bit but there was a decent chunk before and after where he was berating his wife for not giving him bacon and him demanding steak and beer etc biglaugh

(video might not show due to age restrictions, apologies if the thumbnail puts you off your dinner, NSFW due to surgical content etc but I found it intriguing to see what's going on under the skin...)






Edited by thetapeworm on Wednesday 26th July 09:52

Jobbo

12,972 posts

265 months

Wednesday 26th July 2023
quotequote all
thetapeworm said:
I was always under the impression it can trigger more attacks or make what you have last longer but it depends where you go for information and this stuff is always changing, I've also read that it's perfectly OK to start taking it during an "acute" attack and obviously it's fine to keep taking it.

Ultimately I think it's important that the OP seeks actual medical advice, gets some blood tests done to get an idea of levels and then hopefully gets some 300mg allopurinol and gets their baseline down to a point where the issue is being managed effectively and the odd venture into the realm of "bad" food and drink isn't impactful.
Agree entirely with that - the GP won't prescribe it yet if it's not safe to take it, but getting an appointment straight away is the way forward.

FWIW, I was having attacks when I started taking allopurinol and they did not get worse; I can see that altering the balance in your body may cause that but if you're already suffering pretty constantly I don't think there's anything to lose.

Glassman

Original Poster:

22,543 posts

216 months

Wednesday 26th July 2023
quotequote all
Thanks for the advice , everyone. It's appreciated.

I have had medical advice and even spoken to a gout specialist. Whilst gout is the same affliction, everyone has different triggers. I really don't know what mine is because even when I've been careful - or abstained - I've still had a flare-up. I like craft beer and used to drink a lot of it. I would go for months almost forgetting that I suffer with gout and then one day, after a week off it, wallop!

Most people would say it's the alcohol, but someone I know doesn't drink and still gets it. My problem is me. I don't look after myself as well as I should.

thetapeworm

11,239 posts

240 months

Wednesday 26th July 2023
quotequote all
Glassman said:
Thanks for the advice , everyone. It's appreciated.

I have had medical advice and even spoken to a gout specialist. Whilst gout is the same affliction, everyone has different triggers. I really don't know what mine is because even when I've been careful - or abstained - I've still had a flare-up. I like craft beer and used to drink a lot of it. I would go for months almost forgetting that I suffer with gout and then one day, after a week off it, wallop!

Most people would say it's the alcohol, but someone I know doesn't drink and still gets it. My problem is me. I don't look after myself as well as I should.
While it's entirely plausible you're playing a part in all of this (I know I was, albeit on more or a "binge" and stress basis with very little water consumption) there are 1000s of people out there eating worse and drinking more that don't have gout, don't negate the "medical issue" side of this and take all the blame yourself, some people just get it, others don't.

I'm not a drinker at all but did enjoy the odd night out every few months, I definitely went heavier than I should have on the pork products, liked prawns, enjoyed pate now and again, ate a lot of Marmite, enjoyed a bone both with noodles, used Worcester sauce in cooking etc so suspect I was on the cusp for a while and then when I was at a low point and totally let myself go it hit me hard, that didn't suddenly mean I deserved it or it was all my fault but I played a part in it and now have a better appreciation for the condition.

I guess what I'm saying is don't beat yourself up, try to be a little bit more aware of what's going in but ultimately take the help the meds can offer without feeling like it's a sign you've failed, some people just need the help from them to be able to exist like others do withput in the same way people take tablets for other medical conditions they haven't necessarily brought on themselves.

bigdom

2,086 posts

146 months

Wednesday 26th July 2023
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I'm on 200mg a day, I drink, not often to excess, some weeks I'll go beyond the guidelines. I mainly follow a mediterrean style diet and have done for 30 years.

My Father has Gout (non drinker, meat and 3 veg man), Mother Rheumatoid arthritis, both in their 80's.

I had a flare up earlier this year, no changes to anything. Left foot, then 3 week later right foot. Lasted about 6 weeks in the end Bloods were fine, X-rays taken on both feet 3 weeks apart. Colchicine did very little this time. 1st time on Corticosteroids, they started working in hours.

I have various opioid painkillers for longterm back issue, none of them would touch the pain, anti-inflammatories made no difference. I was prescribed Nefopam for the pain, absolute game changer for me.

The jury is out on diet (1.4), alcohol 'may' be a factor (1.5). https://www.nice.org.uk/guidance/ng219/chapter/Rec...

I think mine is lack of activity since March 2020 and a few more KG's. now pretty much homebased. I used to commute mainly by bicycle circa 120 miles a week. Starting to get back to regular exercising.

In the past week or so I've spent a week over-indulging. 1st Belgium drinking the local >8% beers for a mates 50th, and last week Devon. I was expecting a few symptoms, as diet has also very rich. Absolutely nothing.

wildoliver

8,788 posts

217 months

Tuesday 29th August 2023
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I get gout and absolutely hate it. I'm also my own worst enemy with it as I know being fat is a contributing factor but just can't leave food alone.

Most of my attacks have been fairly minor, the first one was not great, but I think it was about the third was horrendous, I thought I was going to lose my big toe nail due to the swelling.

The only reason I'm posting here is I've found how to manage it fairly well, I still get it from time to time but most of the time I can spot the early warning symptoms, cramp like discomfort in the joint, if at that stage I stop the aggravating factor it usually goes away, I sometimes need to detox on water for a week or so, but it does work (for me). And is far nicer than an attack.

Aggravating factors for me seem to be artificial sweeteners, pepsi Max is horrendous for it. If I drank a 2l bottle of pepsi Max cherry I can almost guarantee I'll get the twinges, a couple of bottles I'll probably get an attack, too many energy drinks etc. All risk starting it off. I am lucky in that not much else seems to really be an issue.

Try to find your kryptonite and control/avoid it. Mine couldn't be bloody salad could it!

Big Rat

331 posts

47 months

Wednesday 30th August 2023
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I’ve had gout for a little over a year now….. been on 100mg of Allopurinol and it seemed to hold it at bay….. always in my left big toe….. until last nite this is my left leg at 3am this morning all the way to my tackle went a crimson red and the pain was unbelievable… still waiting for doctor call back ….. tackle safe I’m happy to say ….


Panamax

4,055 posts

35 months

Wednesday 30th August 2023
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Big Rat said:
this is my left leg at 3am this morning all the way to my tackle went a crimson red and the pain was unbelievable… still waiting for doctor call back
What makes you think that's gout?

plfrench

2,386 posts

269 months

Thursday 31st August 2023
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Big Rat said:
I’ve had gout for a little over a year now….. been on 100mg of Allopurinol and it seemed to hold it at bay….. always in my left big toe….. until last nite this is my left leg at 3am this morning all the way to my tackle went a crimson red and the pain was unbelievable… still waiting for doctor call back ….. tackle safe I’m happy to say ….

Are you sure that’s not cellulitis? I’ve never had a whole limb go red with gout, but my lad gets cellulitis quite regularly (long story he’s a bit of a complicated medical case!) and that always makes his entire leg turn red. Have you got a temperature or other systemic symptoms like rigors?