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I've been suffering from Gout for about 5 years. When I was first diagnosed I was offered Allopurinol but turned it down, I don't like taking drugs unless I have to and I preferred to try and control it by lifestyle. Mostly keeping my weight down and drinking lots of water.
What REALLY worried me about Allopurinol when I was first offered it was that the doctor told me once I started taking the drug I could never stop, I was on it for life. Second if I missed just one tablet I would suffer a severe attack. Now I've only ever had mild attacks and they are bad enough, I dread to think how agonising a severe attack must be.
Five years later and I still have gout. I get one attack every 8 to 10 months at a guess and the most recent ones have been very mild (I can still wear a shoe) and fairly brief 4-6 days. I've just had another blood test and the doc says my uric acid levels are very high – a bit of a record breaker was how he put it and he has strongly urged me to take Allopurinol. I'm still not keen but I am considering it.
So my concerns – As I understand it Allopurinol probably won't stop the gout completely and since I suffer very mild and infrequent gout so am I likely to get much benefit from it?
Secondly are what my doc told me about being on it for life and missing just one dose being a cue for instant agony really true? Long term, if my Uric acid levels can be reduced by whatever means is there really no possibility of coming off the drug?
Baz- Everyone's different. Sufferers react to meds differently, Drs have different views, and some of those seem off target, often enough.
Post your result, if you have SUA [and the history- if you can get it]. This helps somewhat to pick up the thread.
Otherways, your advice is correct- if not the dire warnings.
People have reported taking and stopping AP long term here without falling over, I recently stopped it and got 3 mini attacks in a row, last few months, even whilst on a uroscoric- so it's a tricky business getting back on track. This goes for starting, adjusting or stopping meds.
They're more reactive, naturally , than lifestyle options- and if you're really high on SUA read you are better off biting the bullet and protecting your future health by getting on one or other available treatments.
I've found that lifestyle can help a lot to reduce the dose of meds [in the last 2 years] but it's your Drs. job- to reassure you and support your choices- not frighten you over a tricky illness, if that's what's happening.
If you get in earlier than you expected to, that's good- but high levels of SUA pressage a few 'possible' episodes and your Doc may be thinking this, so maybe is over sensitive to your condition rather than being dramatic.
If people react to AlloP– they are quickly taken off, so it IS done- and a slow start dose is usual in this event.
Later on- you're better off on a stable dose and lifestyle balance than risking serious gout pain and its complications.
All meds carry some risk, but less so than ignoring the problem, by far!
Hi Trev, thanks for your help. I just picked up my test results from the doc Serum Urate Level is 0.61mmol/L against a normal range of 0.13 to 0.45 – pretty high 🙁
Yeah Baz- that's 10.3 in mg/dl 'lingo' – which is more commonly used online.
6mg/dl is the max for established gouties – so you get the drift… aim for 4 or 5. [ie:Half whatever your reading is now = 0.3mmol/l -or mid range 'normal']
I was nearly your level myself this year, after not getting on with AP, [a bounce on stopping] but it came down soon enough on Sulfinpyrazone later.
I still watch food type [veggy+ skinned fish, small p/w] and 'try' to keep water intake up. [Always a struggle, as we age] -So a low dose works for me.
Get stuck in to the problem and you'll find a lot of support here- as we've all 'been there', to some degree, or other!
Thanks Trev, looks like I have to bite the bullet and take the Allopurinol. My concern now is that he's put me on 100mg for 2months then a blood test and adjust the dosage. From what I've read a low dosage like that for 2 months is just likely to aggravate the condition?
BazC –
To give you comfort, I am an extremely health, in shape, and young (42) year old that has similar levels uric acid.
I tried everything in my WORLD to lower via diet, and NO CHANGE in a year.
Unfortunately for many of us, drugs are the only choice. I think your Dr. is being a bit mellow-dramatic, but you understand that now.
Are you being prescripted anything else, like colchacine to control the flares you may get while working to reduce your UA? If not, you may want to check with your doc on the thoughts…
I been on meds for a few months, on 2 Colch a day to assist with flares and so far 0 flares…AND my diet has been almost normal, meaning I will even drink a beer or 3 at times…with no noticable effects. Granted, they are light beers, but still.
Best of luck!
That's encouraging Toofast! No no other prescriptions at the moment but presumably he'll prescribe something if it flares up. Actually that's not true, I do have Diclofenac which I've used to ease very mild attacks but I doubt that will help with a serious bout.
A lot of UK Drs seem to be rather cautious with initial dosage, which is quite unnecessary; if you're allergic to it you generally find out pretty quick. My Dr put me on 100mg for 3 months, but because I have my own SUA tester (highly recommended), I could see it wasn't doing the job and so I doubled the dose after 1 month and made another appointment a week before they ran out. He agreed that what I'd done was entirely reasonable and even offered to make the next scrip for 300mg if I wanted.
If you are doing your own testing and show yourself to be knowledgeable about the condition (which you soon will be when you've been on here a while) Drs are much more likely to play ball. With a SUA in double figures, you almost certainly need to be on 300mg. – the sooner the better.
Ask him if he's read the latest gout review in the Lancet (Aug 2010) and you will undoubtedly get his attention.
I've posted a link on here somewhere.
Quick follow up…does anyone have the “whole” article in the Lancet ?
I'd love to read it, but not sure I want to spend the money to suscribe for a one time article?
Thanks for the advice Odo, interesting that you recommend a SUA tester, I was thinking about getting one myself.
toofast said:
Quick follow up…does anyone have the “whole” article in the Lancet ?
I'd love to read it, but not sure I want to spend the money to suscribe for a one time article?
Got my dates mixed up;first article (the one I referred to in the above post) was in Jan 2010
http://dl.dropbox.com/u/128596…..202010.pdf
Second one in the the Aug edition of the Lancet was an article on new gout drugs/research
Interesting article…thank you so much. Here is what I find really interesting…so I meet 0 of the criteria, yet my doc insists on Uloric
Accordingly, febuxostat should be considered mainly for patients intolerant to allopurinol, for those whose gout is not controlled with other urate-lowering treatments, and for those with renal insuffi ciency (but whose creatinine clearance is higher than 30 mL/min). Febuxostat should be tried before an attempt at allopurinol desensitisation, a cumbersome and often unsuccessful strategy for overcoming milder allopurinol reactions. Finally, febuxostat should be used before uricosuric drugs in patients with nephrolithiasis
Baz,
Second if I missed just one tablet I would suffer a severe attack. Now I've only ever had mild attacks and they are bad enough, I dread to think how agonising a severe attack must be.
Allopurinol disappears quickly but oxidozes to an effective metabolite, oxypurinol. every bit as effective and oxypurinol has a very long half life. You can skip alopurinol for several days and still be pretty well protected.
And as odo said, get RIGHT onto 300 mg. THEN test in 3 months and see i it can be lowered. Taking 100 mg for a couple months is just bad medicine prescribed by someone who should NOT be treating gout. If you are allergic to allopurinol you will find out fast enough with either dosage.
zip2play said:
Allopurinol disappears quickly but oxidozes to an effective metabolite, oxypurinol. every bit as effective and oxypurinol has a very long half life. You can skip alopurinol for several days and still be pretty well protected.
Thanks for that reassurance! I was really quite worried about that possibility, good to know I shouldn't be too concerned.
Regarding dosage I'm sure you're right, it was the impression I got when reading through various threads on here that 100mgs wasn't going to help and could even make things worse. Still it's my GP that writes the prescriptions! I'll talk to him and see what he says though.
Just thought I'd post an update, I've been on 100mg Allopurinol for 2 months and I've just had my first blood test and I'm down to 7.4mg/dl from 10.3mg/dl! 🙂
That's good news Baz- now we get to the interesting stage when the dose should be upped and you pass through the 6.5mg 'barrier'.?
If you're on the same diet and lifestyle as previously, I would think your Dr would up the dose to 200 or 300 mg/day as you seem happy on the med. and 7.5 SUA?is still in urate laying down country , as you know!
Keep us posted -and be prepared for some ups and downs so common with this illness.
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