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nokka,
I would go to 300 mg. allopurinol as soon as possible. A week at 100 mg. is long enough to ascertain hypersensitivity like hives, itching, swollen lips and eyelids etc. After 2 months of 300 mg., a blood test will tell if you can decrease the dose but NOBODY stays on 100 mg. as the final dose.
I think fiddling with too low a dose of allopurinol INCREASES the chance of further attacks, the last thing you want when travelling. Better too much allopurinol than too little. In that respects it's a bit like antibiotics…a half dose is worse than none at all.
How so ? I can't see how decreasing my UA levels INCREASES the chance of having an attack. (apart from the crystals melting reason). I appreciate that it may be that I have a higher chance than if I am on 300mg and therefore have lower UA levels. But surely my chances are better than if I took nothing.
My feeling is that I am a borderline case and it is touch and go whether I need the drug or not. A low dose, logic suggests, will get me below the danger levels the majority of the time. Unless I'm missing something ???
Nokka,
Just a heads up, but I started on 100-200mg of AP and my levels dropped to 4.5-6.0 (or somewhere around there). It was great at first because the initial lower dosage decreased my SUA to an acceptable range. The challenge is that once the “initial” acid is removed, your body stary\ts breaking down the solid crystals which once dissolved, can spike your levels back up above 6.5 and cause another attack (just like what happened to me).
So a long story short, when I started on 100-200mg of AP my SUA was between 4.5-6.0. I’ve now been on 300mg of AP for almost 2 months and my SUA is 4.5- 5.5 so the lower dosage would probably not be sufficient anymore.
This adjustment to dosage witth meds is probably why many are wary of long term meds [as for BP for example].
Once the body adapts to incoming meds- levels are either needing to be increased, the effects reduce or further adjuncts are needed.
Some report this effect on here after years on Allopurinol.
This isn't a reason to refuse it, but CJ above has illustrated how it can show up in use.
The unknown variable here is the amount of entrained urate in the joints etc- and how it comes into solution over time, with or without uroscoric drugs.
My caution about more meds isn't just the side effects & loss of effectiveness over time but the hit and miss tendency of what is really going on in the recipient and the real long term cost to health.
Thanks, guys.
I see your point cjeezy, but remain confused. Someone who is not taking allipurinol is advised to reduce their UA levels, usually by a more suitable diet or weight loss and exercise. Surely if they get their levels down to, say, 4.5 to 6.0 they would be in exactly the same position ? ie dissolving crystals increasing their levels back up again which could trigger an attack. As its extremely unlikely that a gouty without meds could get any lower than this, then that means someone without meds is NEVER going to be free of gout.
I'm also a bit confused by the numbers, to be honest. We are advised to get below 6 mg/dl as below that figure existing crystals will dissolve. Right ? I think I've also seen somewhere that above 6.8mg/dl they start to form. Is that right ? This suggests that between the 2 numbers nothing much happens. If, on occasion, someone goes above 6.8, but most of the time they are below that figure – indeed below 6, why is that such a danger ? Surely it has to be better that way than to be nearly always above 6.8, which I suspect where most people with gout are at.
Nothing surprises me with this upside down, Alice in Wonderland condition where nothing is as it seems, so perhaps my logic falls down somewhere…
Great issues nokka,
On the first point, the issue of 300mg v 100mg is separate from the comparison between allopurinol-taker, and diet-manager. Once you have made the decision to take allopurinol it is a question of how best to take it, and zip2play's advice is spot on.
On your second point, you are absolutely right to say that between 6.0 and 6.8, nothing much happens. Natural fluctuations mean that either of these readings could mean that new crystals are forming, old crystals dissolving, or no change. No number can be interpreted precisely because many other factors come in to play. What is certain is that, the nearer you get to 6.8, the higher your chances of uric acid crystals forming. This risk reduces as your uric acid level reduces until, at 6mg/dl, the risk of new crystals forming is very, very slight unless you are very, very cold.
Moving on from that generalization, you need to consider your own situation. On allopurinol, once you have proved it is safe for you, your plan is to stabilize uric acid around the 6 mark. This is easy if you've only had gout for a short time, as the pool of existing crystals is too small to have much effect. Where you have substantial deposits, these will affect the early months of allopurinol significantly. Dissolving crystals can push the levels up again, and there is a hellish place around the 6-6.5 mark where you are almost perpetually dissolving and recreating crystals.
That is why it pays to aim for 5mg/dL. If you want to get rid of old crystals as fast as possible, aim for 3.
On allopurinol, you have that choice. A diet-manager can only aim as low as possible and accept that it might take years, if ever, to get rid of old crystals.
Maybe this is why, if not taking UA lowering drugs, beer is such a risk around the 6 mark [in an established gouty]?
Zip has expanded how the old crystals can be kept quite well wrapped up- if not disturbed ! (radically by Alcohol or urate lowering meds)
Beer contains known purines in a very easily absorbed medium and also, with the alcohol, loading the liver at the very moment when the urate needs moving out!
To anyone on that knife edge- beer is the last thing to risk.
If your body is just seen as a vehicle to ride, whatever, and you have to drink through critical times- then so be it. Take the meds.
I see. I think
Makes you wonder all this. If you're a bit high and your crystals don't get disturbed too often, well maybe you'll not have an attack for some time. If you get your figures down to 6 – 6.5 you have a bigger chance. Food for thought !
Clearly below 6 at all times is the place to be. I'm averaging 6.0 at present and have only been on the drug for a week and a bit. It may be sensible to move to 200mg per day, though would like to see where I stabilise with the 100mg first. I've read it can take a couple of weeks before the drug takes full effect.
I'm not particularly averse to moving to a higher dose; if that's what's needed, that's what's needed. But I am mindful of increasing dose when overseas and I especially do not want to cause a major flare while away.
Thanks again for all your inputs.
nokka said:
I see. I think
Makes you wonder all this. If you're a bit high and your crystals don't get disturbed too often, well maybe you'll not have an attack for some time. If you get your figures down to 6 – 6.5 you have a bigger chance. Food for thought !
This is also my view. I know my levels are high (not currently monitoring so don't know exactly), and I have several coping strategies for when new crystals form. I cannot be certain, but prior measurements suggest, that I experienced old crystals dissolving, and I found this much worse. I know this isn't very scientific, but it is logical that reaction to new crystals forming will be less painful than reaction to crystals dissolving and reforming. “bigger chance” is key – there are few certainties.
Clearly below 6 at all times is the place to be. I'm averaging 6.0 at present and have only been on the drug for a week and a bit. It may be sensible to move to 200mg per day, though would like to see where I stabilise with the 100mg first. I've read it can take a couple of weeks before the drug takes full effect.
2 weeks is probably a maximum. Most effect of a change is the first 4 days, with effects diminishing day by day. Incremental changes in the second week are not significant.
I'm not particularly averse to moving to a higher dose; if that's what's needed, that's what's needed. But I am mindful of increasing dose when overseas and I especially do not want to cause a major flare while away.
Thanks again for all your inputs.
I think it wise to adopt a plan you are comfortable with. As we are dealing with chance, you will never be certain, so stick with your plan, and avoid worrying about different options.
There is no way to avoid the risk, though I hope you avoid the actual. Be sure to have the pain relief on hand. Early action seems to be the key, in my experience, so if a twinge comes, pop the pills with copious water, and keep warm and active.
Here's a way to look at it. If you take allopurinol you will disturb some old deposits, those not quite bound up tight by the immune system but not so exposed as to cause a major attack. IF you set up this disturbance, some urates will go floating about and llikely find a cold acidic place to repark.
Thus my logic is that if you are going to cause this disturbance, make sure that the blood's uric acid level is as low as possible with the RIGHT dose of allopurinol, rather too high than too low. Thus even if urate get's shaken up, if you have an SUA of 5.0 or lower, the migrating urates won't find any place to park and cause an acute attack…the blood will absorb them until they can be carried to the kidneys a couple dozen times and tossed away. Over time these urate deposits that are PARTIALLY sequestered will be emptied of urate, but the key words are “over time.” After a while there will be no marginal stores, only thhose invisible to the bloodstream. Thus I feel the most important time to keep SUA as low as possible is when initiating treatment.
That is why I think it might be better to leave your urates undisturbed rather than to take too small a dose of meds. That's why I am not fond of the 100 mg. allopurinol regimen except for just the shortest time to check for rare hypersenstivity or allergy. I started right on 400 mg. allopurinol and NEVER had one of these rebound attacks, but I DO know that I am just a sample of one…purely anecdotal. After all does a doctror who sees a bacterial lung infection recommend 100 mg. azithromycin to check for sensitivity, or does he prescribe a Z-pak with a potent 1500 mg. antibiotic dose?
After all, if one is hypersensitive to allopurinol, won't a 300 mg. tablet establish that fact and perhaps more definitively than a 100 mg. pill?
And in plain fact, I really doubt that anyone, anywhere has been killed by the first dose of allopurinol nor rendered hospital-worthy and that is after billions of doses over more than a half century. It is among the SAFEST of drugs, much safer than aspirin, penicillin, Tylenol, or any vaccine.
In truth, this new caution on allopurinol started surfacing only when febuxostat began being developed as a pricey patrentable alternative. Before that, allopurinol was spoken of as beijng EXTREMELY safe.
This would not be the FIRST time doctors started pooh-poohing an old well tested, well tolerated, CHEAP generic in faor of the hideously expensive NEW kid on the block. In fact I doubt it would even be the HUNDRETH time these techniques were used to peddle a new drug. The “special care” now being given to people starting allopurinol may well be part of nothing more than a clever marketing ploy.
After all, is anyone started on a 10 mg. dose of Uloric to check for hypersensitivity…no! And that is a drug with NO track record being prescribed for a lifetime.
I wouldn't be so callous if I hadn't seen the same shenanigans pulled innumerable times in the past.
Yes, I see your point and will think further on that. Fantastic explanations, guys.
Couple of extra thoughts. Each time we increase dose, don't we also increase the chance of having an attack ? There seems a lot of anecdotal evidence of this, no ? Also, in a few days I will be in tropical temperatures. As clearly my body will be significantly warmer than where I am now
, will that help me avoid those floating urates resettling somewhere cold ?
nokka,Yes, I would think that the tendency for crystallization would be lessened in a tropical climate…I wonder if anyone ever compared gout rates between populations at the equator and those at 40 or 60 degrees Latitude?
Just don't pound your feet too hard, something that might be likely trying to see EVERYTHING in a new land in limited time.
Good luck and keep in touch; online connections are available EVERYWHERE.
(Wear sandals instead of shoes!)
zip2play said:
Post edited 3:21 pm – November 20, 2009 by zip2play
In truth, this new caution on allopurinol started surfacing only when febuxostat began being developed as a pricey patrentable alternative. Before that, allopurinol was spoken of as beijng EXTREMELY safe.
This would not be the FIRST time doctors started pooh-poohing an old well tested, well tolerated, CHEAP generic in faor of the hideously expensive NEW kid on the block. In fact I doubt it would even be the HUNDRETH time these techniques were used to peddle a new drug. The “special care” now being given to people starting allopurinol may well be part of nothing more than a clever marketing ploy.
After all, is anyone started on a 10 mg. dose of Uloric to check for hypersensitivity…no! And that is a drug with NO track record being prescribed for a lifetime.
I wouldn't be so callous if I hadn't seen the same shenanigans pulled innumerable times in the past.
This makes one wonder when AP will be taken off the shelves and redistriibuted under some fancy name @ $50/mo for a prescription!
nokka said:
Each time we increase dose, don't we also increase the chance of having an attack ?
On the contrary, everything I have seen points to the fact that gout flare risk decreases as uric acid decreases.
Unfortunately, all the studies I've seen compare uric acid levels above 6 mg/dL – nothing to compare 6 with 5 with 4 with 3. E.g “Gout in the UK and Germany: prevalence, comorbidities and management in general practice 2000–2005″.
[Part of]Table 3 Association between serum uric acid (sUA) level and the number of flares
sUA level* Odds ratio
(mg/dl)
6–7 1.33
>7–8 1.49
>8–9 1.71
>9 2.149*Conversion: sUA (mg/dl) ×59.48 = μmol/l.
Something at the back of my mind is suggesting that the trend continues to decrease in the 6 to 3 range, but I cannot find it.
Anyone else seen anything?
Hi, guys. I'm in Northern Thailand at the moment. I've been on allop for 4 weeks now; been here in Thailand for 2 weeks. I decided to stick with 100mg and see how it went. My last 2 home tests before leaving were 5.2 and 4.7 mg/dl, so all seemed well.
I brought the testing kit with me, to keep an eye on things. Tingling and general soreness continues. I've been eating mainly Thai food, probably a bit more fish & chicken than I was eating at home. Also, been having some alcohol most nights, though generally no more than 2 drinks – either wine or gin and tonics. I've had a couple of beers, but very few. Anyway, I've only tested a few times, first one 5.6 was OK. Then a few days later jumped to 8.0, then 8.3 and today 7.6. Seemed odd to me and had planned to get a proper blood test done while here in Chiang Mai. Went down to the hospital and for 100 Baht (£2) got a very quick uric acid test done. Result 6.0 mg/dl. Back to my room to see what the home tester said again – 7.3mg/dl.
Not sure now whether the tester doesn't like travelling, or whether its always been giving me incorrect scores. Either way I no longer trust it. I move on to Laos in a couple of days, where I'm sure the health service isn't as efficient as Thailand's, but think I'll stick with official blood tests from here on in.
I'm stil umming and ahhing about increasing dose and may go to 150mg. I've avoide d seafood so far (though would love to try some) and a worry free beer sounds good. At the same time, no flare as such, toe seems good – just thisl soreness and tingling, I don't wish to rock the boat – I really don't want a full blown attack while here.
Your thoughts, as always, are most welcome.
nokka,
Go to 300 mg. allopurinol. Don't linger at that 6-7 range or you're going to get into trouble with a big attack. Why stay at the borderline between effective and ineffective dosage?
I don't trust testers that depend on the size of a blood drop for accurate results, thus I have never sprung the couple hundred bucks to begin my own testing. I've seen too much variability in glucose testing with testrips (but the DID give me that tester for free!.
)Have a nice shrimp pad thai on me!
Hi, guys. Thought I'd post an update as (unfortunately) I am now home from my travels.
Straight after my last post I put up my dose to 150mg. Hey presto, within 24 hours all tingling disappeared and I felt good. Although I remained generally well-behaved, inevitably with no tingling or gout reminders I loosened my diet a bit. Drank a bit more beer, started to eat some seafood (those prawns in Asia are too tempting to avoid). After about 4 weeks the tingling started to come again.
Late January I was back in Bangkok, so hightailed it for another blood test. Showed 6.2mg/dl. The blood test was at a hospital in Bangkok called Bumrungrad; generally regarded as one of the best hospitals in Thailand. It was a lovely place, more like a 5 star hotel than a hospital. My consultaion this time cost 1000 baht, or about £20, though for this I got a mini health check and a consultation with a doctor. The doctor said my figures were fine (I would have preferred them a bit lower). I asked whether I should change my dose (thinking maybe I should go to 200mg.) She said that I could safely reduce to 100mg. Hmmm..decided to ignore that advice.
Stayed on 150mg and that's where I am now. I would accasionally get a bit of tingling as time went by, but no gout flare, so was generally happy. I managed to drink some alcohol most evenings, though never much – and though in the heat I would have preferred to stick to beer, I would more often have a glass of white wine, or a gin and tonic. Diet stayed good and I lost about 10lbs while away – I am now moving towards being skinny. Whenever I got the tingling I would wonder whether it was an old crystal dissolving, or a new one forming. Its so difficult to know.
Returned a couple of weeks ago; almost immediately tingling started up again. This may be due to the cold weather, or due to other changes – who knows. Had a blood test last week and will get the results in another weeks time. I'll post the result when I get it. Now I'm home and nearer my GP I want to move to the next stage. I feel I may need to increase the dose a bit more yet to get to about 5, though will wait to see what my score is now before deciding.
Nokka- I reckon you finessed your diet and travel dang well!
Stick with the tester if you can , it takes time to get confident of results- and a movement of 1 point give or take during the day is quite plausible.
You're a guy who like paddling his own canoe- so keep that expensive Tester string in your bow twanging ! I'm not suggesting you test between beers- but wouldn't put it past you…
I actually gave up with the tester after it gave me a conflicting result to an official test. In the end I sent it home with a bunch of other stuff from Vietnam. They said it would take 3 months surface mail and so far it hasn't arrived. Its about 3 months since I sent so maybe it will come soon. However, I don't have a great deal of faith in it anymore, unfortunately, so not sure if i'll use in the future anyway.
I love the food in south east Asia, though was never really sure whether it was gout friendly or not. Much of the food derives from Chinese cooking and those guys eat anything, as you know. Vegetarianism is not something South East Asians understand. Plus they cook everything in concentrated fish sauce or shrimp sauce. In the end I pretty much ate what I wanted, though would often have just stir fried veg with noodles or rice for lunch. (Delicious anyway). The diet is undoubtedly healthy, though sadly some are starting to get a taste for our western foods.
My aim now is to eat a balanced and healthy diet, but hopefully without too many restrictions. I seem to tolerate Allopurinol OK so don't really have an issue with it. I just want to make sure I'm on the right dose presently.
Go with the averages and stay on 300 mg./day for a long time. Since the drug is forever you will soon know when and if to adjust the dose and you'll have plenty of time to do it. THere's a reason they make the pill in a 300 mg. size.
But there's no reason to take the minumum for the minimum's sake. With the daily swings in Uric Acid, acidity, and temperature it always is wide to have a little extra for “insurance.”
Got my blood test result yesterday and it was 6.3mg/dl. This was not a lot more than the results I was getting in Thailand, but I was disappointed nevertheless. After discussion with my GP we chose to put the dose of allop to 200mg per day (from 150) and see how that affects things. Since returning home I have had more soreness in the joints and more tingling generally.
I feel a bit frustrated. First blood test back In Sept shortly after gout attack was 7.8mg/dl. After hard diet work got this down to 5.7 a few weeks later. This was before I started allop. Now, despite taking allop for about 5 months I get a result of 6.3 mg/dl. Grrrrr.
Of course, it may be due to a sudden spike from old crystals dissolving. Who knows. I guess I'll have to wait and see how I feel now I'm on 200mg and also what my next blood test in June shows. I'm feeling my way slowly with increasing dosage on purpose. I haven't had a flare since all this started, so I suppose that that is encouraging. I just want to be on the right dosage and stop the soreness/tingling.
Does anyone know, as a rule of thumb, how much we can expect our uric acid levels to fall for every, say, 100mg of allop we take ? Or are we all different and a small dose for one may reduce levels significantly, but change another hardly at all ?
nokka,
I can speak from my experience. I started with 150 mg and moved to 300 mg in increments of 50 mg over a period of 2 months. And with every increment, the SUA levels changed as shown below –
1. Started with 150 mg on 7/31/2009, SUA levels 9.2 before starting Allop
2. Tested Aug 21, SUA levels 6.6
3. Moved to 200 mg Aug 25
4. Tested Sept 1st week, SUA 5.5
5. Moved to 250 mg Sept 7
6. Tested around Sept 15, SUA 5.0
7. Moved to 300 mg Sept last week
8. Tested Sept end, SUA 4.3
Since then on 300 mg, SUA in the range of 3.5 to 4.5, average of just under 4.
Thanks for the replies, guys.
Veg Guy, you may be right – I may yet end up on 300mg. I prefer to take things steady though. I haven't had a flare since starting on Allop and note from the forum that sometimes those who increase dosage quickly do. I certainly didn't want to do that while overseas; now I'm home I'm happy to increase, though realise geetting to the correct dosage may take a little time.
Utubelite, thanks for posting your figures. They would suggest that the increased dosage should get me regularly under 6mg/dl. Whether it is sufficient to get low enough we'll have to wait and see. If not, I'll increase again.
Will keep you posted.
zip, I'd be interested in knowing about your “9 day attack of podagra from Hell” if you're willing to share it.
Well it started at 5 AM, a very common time. I found I could barely step on my foot to go to the bathroom (almost “en suite.”) Since this was similar to about 4 earlier attacks, I figured 3 day of pain and I dug out the crutches. For the earlier atttacks in my instep and ankle I had not yet made the gout connection…young and stupid but also not in the most common joint.
As the first and second days progressed it was clear that nothing could be put on my right foot and swinging the foot with crutches was too painful so I took to my bed the second day (if memory serves.) I took everything in the medicine chest including ibuprofen, acetomenophen with codeine, aspirin (later fouind to be a big no-no,) phenobarbitol, librium. Nothing worked. I could not bear anything but the lightest sheet covering my foot and just changing position was horrible. To go to the bathroom I had to crawl on my hands and knees, keeping my right foot elevated behing me, VERY careful not to bump it. That was so difficult that I switched to a hospital style pee bottle…and tried to hold the rest in until I HAD to make the hallway crawl.
My right bunion joint was purple and the front half of my foot badly swollen with the skin so stretched it looked like it might burst.
My bed partner became an ancient 1400 page volume of the PRINCIPLES OF INTERNAL MEDICINE with a good long chapter on gout (Al Gore hadn't invented the internet yet.) I diagnosed myself with gout. THe book talked about the HUGE excretion of urate with 6 grams of aspirin daily (like 19 a day) for a week. I made it 2 days before my stomach told me NO MORE ASPIRIN!
But I also found the OTHER cure, colchicine, 2 to start and one an hour til pain relief or severe diiarrhea. So I called my doctor and TOLD him I wanted him to call in an Rx for 60 colchicine. Friend went for the Rx and the next morning I started before dawn. I took a total of 22 pillls on day 9 (no mention the daily UPPER limit is 16.)
At pill 22, all Hell broke loose and I sat and shat for 45 minutes nonstop/ I would drink a large glass of water (I knew to avoid dehydration) and it would immedicately spill though within a minute…I worried whether I was going to find my eyeballs in the toilet. At the end of the 45 minutes the pain in my foot was gone…a couple hours later all signs of swelling were gone and I arose, Lazarus-like and went for a walk…the first time out of the house in 9 days. That week I went to the doctor and got an Rx for 400 mg. allopurinol per day, a year later I dropped it to 300 and have not had an attack in the last 24 years. When I tried 200 mg + lasix + losartan for a few months, I started getting some little twinges and ran a 6.7 SUA…quickly went back to 300 mg.
I have NO dietary restraints and like meat, even liver, shellfish, and wine and beer (perhaps TOO much.
)CAUTION: Do NOT take 22 colchicine. I'm 6' 2 inches and over 200 pounds so MAYBE for me it wasn't QUITE an overdose.
Hello Zip, I read on here somewhere (maybe in the wish forum) that there should be some sucess stories. Well I think yours should top the list. I hope I have your kind of luck with the meds once I get this constant pain in my foot cleared up. LIMPY
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