Febuxostat purchase advice

[Keith Taylor (GoutPal Admin)]

Hi

I have stage 3 chronic kidney disease and had my first gout attack in April 2007. I haven't had an acute attack since, but my uric acid levels are elevated (aorund 6) and I regularly suffer from arthralgia in my hands and feet.

 I started taking allopurinol in 2008 but had to stop earlier this year due to a number of adverse reactions (skin rashes and deteriorating kidney function).

I have been told by both my nephrologist and rheumatologist that Febuxostat is unlikely to be available in the UK for a number of years and that my only options are uricosuric drugs that will put more strain on my kidneys.

I am thinking of travelling to the U.S next year to find a rheumatologist that will prescribe Febuxostat and would be grateful for any advice that forum members can provide, e.g. are there any specialists that you'd recommend? Would I be able to bring back a year's supply of the drug? Is the drug available on mainland Europe?

Also, can forum members shed any light on the debate concerning whether elevated uric acid levels long term can damage one's kidneys and arteries? Both of the aforementioned doctors have told me that the jury is still out on the question, but I'm not entirely convinced.

Thanks

[Keith Taylor (GoutPal Admin)]

Febuxostat (marketed as Adenuric in Europe, as opposed to Uloric in US) is licensed for gout in the UK, but the manufacturers can't cope, so the Government (through NICE) has withdrawn the requirement for the NHS to fund it.

That decision will be reversed once the drug is available.

In October this year, Ipsen of France, who have the manufacturing rights, struck a deal with Italian pharmaceutical company Menarini to manufacture and promote throughout Europe. They expect to launch early 2010.

That, of course, is the official view, and I have no idea on the practicalities of getting hold of febuxostat. If you find a genuine source, your doctors should be supportive in supervising the treatment, as the license is OK – it is just manufacture that is slow.

[Keith Taylor (GoutPal Admin)]

LR said:

Also, can forum members shed any light on the debate concerning whether elevated uric acid levels long term can damage one's kidneys and arteries? Both of the aforementioned doctors have told me that the jury is still out on the question, but I'm not entirely convinced.

---

The jury isn't so much out, it is just that some members were asleep when the latest info came through.

Those that heard Mohandas & Johnson in “Uric Acid Levels Increase Risk for New-Onset Kidney Disease” will be doubtful of a verdict if all they heard was the conclusion:

although the concept that uric acid might have a role in kidney disease once suffered a requiem, it has undergone a revival and seems deserving of additional study. If indeed it represents a remediable target for intervention, then a new chapter in the treatment of kidney diseases may result.

Perhaps the thought of a new chapter made them sleep through (what I think is) the latest evidence from Obermayer et al:

the risk for incident kidney disease increased roughly linearly with uric acid level to a level of approximately 6 to 7 mg/dl in women and 7 to 8 mg/dl in men; above these levels, the associated risk increased rapidly. In conclusion, elevated levels of uric acid independently increase the risk for new-onset kidney disease.

Maybe you could send your doctors a little light festive reading in the form of High Uric Acid And Increased Kidney Disease

[Keith Taylor (GoutPal Admin)]

Thanks Admin, I shall be sharing this with both of the specialists that I've been seeing.

I'd be interesting in hearing from anybody in the UK that has successfully procured Febuxostat.

[rjse]

Well, I am in the US and on the Uloric drug.   I'm researching where I can purchase quanity of the febuxostat drug as I believe it will treat my condition as well.  The problem with Uloric, as is the case with any sole sourced pharmaceuticals is drug companies charge whatever they want for it.  However, in defense of the filthy rich drug companies, I realize there is no lack of a buyer market for the stuff…  Does anyone know how to go about importing this type of product into the country?

Also interested in knowing were to find information on shelf life of the febuxostat drug?

[GoutPal edit: suspicious link removed]

-Jack

[Keith Taylor (GoutPal Admin)]

Sorry Jack,

I do not want this forum to get side-tracked into unapproved drug sources. I actually hate censorship, but I really do not want to be associated with the murky world of dodgy importers.

Please keep this thread for advice on legitimate purchase advice. (i.e insurance deals / buying assistance etc)

[trev]

Could you clarify GP- Is it illegal to import Uloric into the UK?

Can it be prescribed by private  prescription?

I appreciate you have to protect your position over illegal importations.

[Keith Taylor (GoutPal Admin)]

Febuxostat is approved by the appropriate European bodies that now govern UK medicine restrictions, therefore it is entirely appropriate to get a private prescription and import the properly manufactured febuxostat.

Uloric and Adenuric are the official brands, so I see little problem with these.

Dodgy off-label products are an entirely different thing. It is not just a legal thing – taking medications from unregulated sources is very risky. There are enough side-effects reported with controlled versions without adding in risks from poorly controlled manufacturing sources.

China (the home of the removed link) is a wonderful place for so many things, but copied drugs and medical equipment are not one of them.

[cjeezy]

Just curious,

Why not try Allopurinol?

[Author]

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