This one is to allopurinol takers everywhere.
Why do you put up with such shoddy service?
Every week, I get messages from gout sufferers, and their carers, about problems with allopurinol. Most of these show that absolutely no thought has gone into the treatment.
If you bought a car with only two wheels, would you accept it and drive round in a shower of sparks?
If you called a plumber to fix your leak, would you be happy to pay a weeks wages for him to merely turn the water off?
Would you pay an optician who grabbed the nearest pair of specs and said, “Here, these will do,” without testing your eyes?
Why take allopurinol without checking that it is doing it’s job?
Allopurinol for gout has one purpose – to lower uric acid below 6mg/dL, so that you can rid yourself of uric acid crystals. If you do not get rid of these crystals, they will build up and do one or both of two things:
- Erode cartilage and bone in the joint causing permanent, crippling, damage.
- Develop into tophi that often burst through the skin and get infected, risking life threatening blood poisoning.
If you do not get your uric acid tested regularly, and the dosage adjusted to ensure the level falls below 6mg/dL, you are wasting your time. At best you are delaying the crisis, but this only means that you will have to cope with it later in life, when you are less able to deal with it.
I’m stunned by the latest gout forum post from a caring reader worried about a gouty father. The poor guy has been on allopurinol for a while, but clearly the dosage has been inadequate, and clearly the explanations he has received have been worthless.
Worst of all, the primary health care physician has ruled out consulting a rheumatologist.
So after years of inflicting suffering, the pompous b*st*rd won’t admit his mistakes and turn to the only source of proper gout treatment and advice.
Oh, if I could get my hands on him.
Sensibly, it’s best left to the lawyers, but nowhere near as satisfying as a swift elbow to the nose.
Here in the UK, we had a Dr Shipman, jailed for killing hundreds of his patients. Is giving shoddy medical care, to people who trust you, any worse? Given a choice of quick painless injection, or years of crippling agony, I know which I would chose.
But why can’t we just have proper medical care?
2018 Can Gout Kill You Update
In the comments below we see one tophaceous gout sufferer who died from septicemia when a tophus burst his skin. That is rare. But for more common ways to die of gout, see Can Gout Kill You?
When the doctors are reluctant to prescribe a medicine, it tells you that there must be some problem with it. Usually, they wait until there is at least three attacks.
The recommended procedure is to start at a lower dosage (50-100 mg) and then work up to a dosage that will bring the serum uric acid level to below 6.0. In actual practice, it seems they just sort of settle on 300mg.
allopurinol believe it or not seems to increase attacks for me/i dose 0.6 colchicine but develop a resistance or high level which which makes me have to take more of it.my current uric level today is 8.79. i watch my diet like a hawk but i seem to think that certain food additivesand really certain stores that i buy my meat from seem to bring it on we do not eat a lot of red meat at all mostly pork and poultry(chicken) since i live in florida, none of these according to my food diary seem to bring on attacts. dehydration is a killer for me as i am in the process of narrowing down cause and effect i have heard stories from other sufferers that food from certain countys even have caused problems for them one thing that really gives relief quick is drinking a quart of Montmorency cherry juice i have tried black cherry tablets from a high quality nutrition store but not have had the sucess i have had with the Montmorency juice(type of Cherry) i’d like to hear if any one has had similar experience”s like this
Allopurinol is quite likely to increase gout attacks when it is first taken. This should be a good sign, if it is a side effect of reducing uric acid below 6mg/dL. If your uric acid is so high when you are on allopurinol, then it is almost certain that the dose you are on is insufficient.
Not only is this a complete waste of time, effort, and money, but it will also prolong the length of time that pain troubles you.
I suggest an immediate consultation with a rheumatologist to get your allopurinol dose right. Also, it is important to keep hydrated. Plenty of water is important when you have gout. When you’re on allopurinol, it is even more important.
good info one of my friends is an arthopod and he performed surgery on my elbow for a bursitus (sic) type injury he said it was a mess lots of gouty tissue he removed i take fossinopril 20mg for blood pressure which has no diuretic .
as for your amputation GET A NEW DOCTOR gouty tissue can be removed mt elbow no longer blows up during weather changes ect… i’m mid 40’s 30lbs overweight and am learning that gout has alot of heredity….try to get some cherry juice and just pound mega amounts watch the rest of your diet i have pretty much narrowed down my attack to the store where i have buying my meat lately and i am inquiring to what additives they are processing the meat withalso a major over looked chemical is msg….watch that big time
I have had gout for over 20 years, with five or six attacks a year, in my big toe.
I have successfully managed the attacks with colchicine and diclofen. I am intolerant of Indocin. My health care has been with the same HMO all these years.
About 7 months ago, following a routine checkup, my high blood pressure was detected for the first time. I was unfortunately prescribed a blood pressure med that contained a diuretic, which triggered an immediate and sever gout reaction. In the 20 years of “treatment,” no doctor ever mentioned the word ” tophus” to me. So when my middle finger tip and first joint swelled to double, and was oozing a pussy looking goo, I was unaware it was gout related. I thought it was infected. The doctor opened it and cleaned it as though it was infected. I was given antibiotics, told to keep it freshly cleaned out and dressed daily. This painfully went on for three weeks with no improvement, worsening by the day.
Worried that the “infection” had gotten into the joint of my finger, the Dr. sent me to a surgeon. The surgeon said, “I’ve never seen anything like this!” He called in a consulting surgeon who said the same thing, and they took a picture of my grotesquely swollen and angry looking finger. He recommended I continue with the cleaning and dressing “treatment,” and required me to poke a wet sterile packing in the cavity the Dr. opened, every time the dressing was changed, the pain of which I cannot describe. They also took a culture to see what bacteria they were dealing with. I returned to the surgeon in a few days for follow-up. A physician’s assistant saw me, and for the first time, uttered the word “tophus.”
My Uric acid level was slightly over 7 at that time. My GP then prescribed allopurinol, 100 gms, for one month, to be increase to 200 mg for one month, then 300 mg for the rest of my life. This was six months ago. Uric acid levels decreased to 6.0 on 100 mg. The finger actually got better, and appeared to be on its way to healing. When I increased the allopurinol to 200 mg, as ordered, instantly the finger began to swell and ache again. The Dr. said to continue the 200 mg. The finger quickly became much worse than before, triple in size, unbearably painful. That was 5 months ago. The finger continues to worsen. The Dr. now thinks he should increase the allopurinol to 300 mg. I have no confidence in him. He referred me to the surgeon again, who is considering amputating my gouty finger!
I believe the entire finger problem was the Dr.’s fault, initially due to the wrong kind of blood pressure med for a patient with gout, then misdiagnosis for the swollen finger, then upping the dosage on the allopurinol, which grossly exacerbated the tophus problem, now to the point where I will probably lose my finger (which at this point may be a blessing, because I am tired of being in agony for such a long time).
Over 20 years as a gout patient, with only a few attacks a year, my gout was not that severe, and colchicine took care of it very well. By the way, “rheumatologist” was never a consideration for referral by my Dr., even when I requested it, just surgeons to assess whether the finger should be amputated. The GP does say, however, that he consults with a rheumatologist.
I want to quit taking the allopurinol, or at least cut back, to see if my finger does not get better. The GP is adamant I should not quit or cut back. I can handle a few gout attacks a year that respond well to colchicine treatment, if that is the trade off. To lose my finger instead of quitting the allopurinol seems an unnecessarily gruesome exchange.
goutfinger,
I hope things have resolved a bit for you in the last couple months. Tophi are VERY slow to shrink and a lot of the damage done to the joint is likely to persist.
To shrink large tophi in a reasonable amount of time, I think you need to consider an adjunct to the allopurinol to get your uric acid down FAR below 6.0 mg/dL, perhaps as low as 2, 3 or 4. You need perhaps an INCREASE in your allopurinol (to stop making uric acid) and the addition of a uricosuric to increase the rate of expulsion.
I also had my first (second third ad infinitum) gout attack brought on by a thiazide diuretic. I went for years with crippling attacks to my instep and ankle that had me using crutches for a day or two and then poof…gone as mysteriously as it came.
I had a thumb joint that formed a tophus that over a year went lower and lower until it pushed it’s way under my nail slowly making a hige bulge. I pierced it with a hot paper clip and it oozed slippery white goo over weeks like a volcano that dried into a masss of dendritic crystals (I have a microscope.) About 10 years later I think I can say the joint is almost as good as new.
Yep, a good micro surgeon can remove the tophus in your finger without removing the finger. The trick is to find the GOOD surgeon and not one of the many ham-handed fools practicing medicine.
I stumbled on your article and you have opened the door for me to find out what is going on with my husband’s fingers. As with you, it started out 18 years ago with him thinking he had twisted an ankle or provoked an old motorcycle injury. 2 different drs. even said that’s what it was. Gave him walking boot/cast and crutches. For years it would flare up and he’d don his bootie and then it would go. This would happen a couple times a year. Then ten years ago a finger got infected with white stuff coming out the dr took a culture and everything. Said he didn’t know but thought maybe cellulitis. Some antibiotics and a month of driving 3 times a week 72 miles one way to get it cleaned and squeezed it healed but nothing was diagnosed. 5 years later another finger infection. We go to an orthopedic dr and he does outpatient surgery and comes up with – he thinks it was a staff infection. That hospital was a 3 hr. drive one way. 2 years ago with more ankle pain and more lumps on the fingers the ankle thing again but this time his big toe is swollen and red. He looks at me and says I think I have gout. He goes to another dr actually a physicians assistant who agrees and says that’s what those lumps are too. Well, we’re happy to know what it is but the allopurinol and cherry juice every day doesn’t seem to help the lumps and they’re getting bigger. My husband hasn’t drunk alcohol for 14 years and doesn’t eat a lot of meat. He loves asparagus, mushrooms, and cooked spinach, but those are rarely on the diet. He’s thin but has a stomach on him ever since he had back surgery 8 years ago. I’ve heard surgery can trigger gout and that’s right about when his hands started getting bad. His cholesterol is high also the triglycerides, blood pressure is being watched. The dr. is trying to lower it without medication- diet, and exercise. The dr suggested a glass of apple cider vinegar (w/the mother), honey & water everyday to cut the acidity in his body. I haven’t seen much improvement in the last 3 months. So now I’m thinking hyperuricemia, maybe the high fructose in all the juice and the honey. Just trying to find an answer.
The Dr doesn’t really want to cut the fingers afraid it will just come back. My husband is only 52 and works with his hands all the time, construction, auto restoration and general honey doos. I worry about infection. I’m desperately looking for something that will dissolve these crystals. Can anyone help me?
Allopurinol for gout has one purpose – to lower uric acid below 6mg/dL
The tone of my original article is deliberately harsh.
There is only one way to stop gout ruining your life and that is to keep uric acid below 6mg/dL. If your doctor does not understand that, or if he cannot explain it clearly to your husband and yourself then he does not deserve to be a doctor.
If he has prescribed allopurinol without checking your husband’s uric acid level and adjusting the dose to achieve 6mg/dL then he deserves to be in jail.
I can see 2 choices. Find a better doctor or, if that is not possible, demand that you get proper treatment.
I have had gout pains for about 5yrs. My Dr. precribed indocine & it worked. anytime i felt an attack coming on i would take a indocine pill & it would knock it out. Only problem I began to have stomach problems & Dr. advised me to stop indocine. I have changed my diet, but don’t seem to help. still have pain in instep & ankle. I talked with friend that was takeing allopurniol & it works for him.
Indocin (one of many brand names for indomethacin) is simply a pain reliever. It does absolutely nothing to lower uric acid, which is what causes gout. Going back to the text of my article, I complain about the shoddy service from doctors who do not ensure that the allopurinol dose is adequate. Doctors who provide no uric acid lowering treatment are even worse. Would you accept a dentist just giving you a few painkillers instead of fixing your dental cavity?
My rheumy got my uric level down to .25ummol .No more attacks eat and drink what i want. I take 400mg allopurinol a day. I did change my gp due to his lack of knowledge about gout
That is exactly the right way to deal with gout.
It is a pity for other visitors that, at the moment, it is hard to see all the comments from one visitor. Searching for “donal777” works to an extent, but also includes links to the comments. I am working on fixing this, but for the benefit of other readers, you might like to focus on the donal777 journey.
donal777says: Tophi And Allopurinol (December 26, 2010 at 1:52 pm)
donal777says: Protein And Uric Acid Connection ( February 2, 2011 at 10:09 am)
Now read the third comment again.
In around 18 months, donal777 has found his gout freedom. I hope anyone who is struggling, follows his lead, and perseveres through poor advice to finally beat their gouty demons.
To donal777 I will add, if you ever want to share your story in more detail, as a guest post perhaps, please let me know. I’d love to publish it and share the inspiration.
I wanted to tell my story in the hope that it might motivate some of the gout sufferers on your forum to seek the correct treatment and to stick with it.
My Dad had his first gout attack in his forties. He continued to have episodes of one to two attacks per year for the next twenty years. In the interim he was diagnosed with high blood pressure and in addition was given a thiazide diuretic. He also believed in taking a low dose of aspirin daily. He consulted the same medical practitioner for at least twenty years and shared all of this information with him. At no stage were the mechanics and long term prognosis for gout explained to him. Most of the suffers on your site demonstrate the same level of ignorance with regard to their illness.
Eventually my father experienced severe knee, anke, toe and finger pain in his joints. His doctors response was we all have to get old. My parents at that stage moved cities and my dad was forced to find a new doctor who immediately put him on Allopurinol with the side effects that you describe without explaining the need to persevere. He did not! My mother is now a widow! My dad’s topherous gout on his toe burst and he developed septicaemia and passed away at 62 years of age. Do not be an ostrich – it will kill you.
can high dosage of allopurinol cause kidney stones or stones to develop in the bladder? I have developed some bleeding, quite painful, but not excrutiating. My Dr not available, so I went to a clinic. The Dr on call thought I may have passed a kidney stone. I am taking 600 mg of allopurinol a day. The Dr gave me an antibiotic to be sure I had no residual infection. I took the antibiotic for 5 days. I was ok for a few days apain. then the pain and the blood came back in my urine. My Dr is out of town until August 20th.
I thought of cutting back the allopurinol to 400 mg in the am and 100 mg in the pm and drink lots and lots of water.
When the blood shows in my urine, I experience quite a bit of pain. When the bleeding stops, which is within the hour, I am left with a lot of discomfort. I’m taking lots of Advil and I’ve even taken the endocin as it really helps with the pain also.
I am not dying with pain and no, I do not want to go and sit in emerg for 5 hours. I can wait until Monday. Anyway if any of you have had this experience, I’d appreciate some feedback. Carole
Yes, Carole, allopurinol can cause kidney stones, but it is vital that your dosage is correct. Under dosing means uric acid remains too high, leading to joint destruction. The dose must be set to maintain uric acid at 5mg/dL (0.30mmol/L) or below.
Other than seek an alternative, such as febuxostat, professional rheumatologist’s guidelines are:
> Drink at least 2 Litres of water daily.
> Consider alkalinization of urine with potassium citrate (60 mEq/day) in recurrent stone formers.
> Avoid dehydration.
To the second one I would also suggest an alkalizing diet.
I am 60 years old and in good shape. I had a massive gout attack three weeks ago in my big toe and foot generally. I tried aleve for a week with limited results. I took percocets at night to get sleep. Even then it was still painful. My doctor got me on colchicine 2X .6 mg twice daily. The pain is no longer excruciating, but still severe. Ice and aleve now seem to help. I seemed to be getting better, then started Allopurinal and it flared up again within a day. I expected some discomfort from the Allopurnial, but not that quickly. Is that a good sign? I took 100 mg for 3 days and then upped it to 200 mg. I still take the 2 doses of colchicine per day. Should I continue that? Can I take NSAIDs at the same time? I have a blood test UA, kidney and liver scheduled for next week.
Thanks for all your thoughtful help to all sufferers.
GP