September 24, 2013 at 2:42 am #15362sorepawParticipant
Firstly thanks to Keith and everyone for maintaining this site which has been invaluable to me and my understanding of gout.
I am 47 years old, live in the UK, fit and healthy, not overweight, dont drink more than 20UK units of alcohol a week, and can manage to cycle 70 or 80 miles on a nice day.
I started getting a very sore big toe joint (different foot on different occasions) at about 3 week intervals, each time taking about a week for the pain to dissipate. Eventually I went to my doctor who was very helpful and prescribed diclofenac sodium for the inflammation. These sore foot episodes continued on about 2 week intervals and I started allopurinol and have now been on 300mg / day for about 7 weeks and have a few questions.
I have bought a home-test kit and test myself regularly. The highest it has ever been is 7mg/dl but it is normally about the 6mg/dl mark. Since I have been on 300mg allopurinol it has fallen to now between 3.5mg/dl – 5mg/dl. The level can vary daily by as much as 1.5mg/dl. (Sadly it can go up by 2mg/dl within 2 hours just by drinking 2 pints of London Pride – which has led me to pretty much quit drinking alcohol altogether).
I now drink loads of water all day.
I have been suffering flair-ups once every 2-3 weeks. The flair-ups now always occur in my left foot although I have had them in my right foot. They vary in their level of pain and severity but are always painful enough to stop me being able to walk or wear shoes. The attack seems to dissipate after about 2-3 days but it is a week before I can walk without a limp. So I have been suffering about 50% of the time in total. More recently since on 300mg allopurinol my last episode was 6 weeks ago but was struck again 3 days ago.
Is this frequency of episodes high?
Why do my episodes always seem to come on overnight?
When I get an episode I notice lots of heat around the pain-affected areas and usually redness as well. The skin is prickly to the touch and my big-toe joint becomes physically larger than my other foot through inflammation. I often find I get this prickly pain through most of the upper part of my foot and across most of my toes. Sometimes it even spreads as far as the ankle joint. Today for example I can feel all of these sensations and yet my uric acid level this morning is 3.7mg/dl and has been below 4 for 3 days since the current episode started. Keeping my foot raised above my waist for most of the day can significantly reduce the pain.
Does this all sound normal?
Is your big toe prickly with gout? Discuss it in the new gout forum
Am I correct in my understanding that the pain of an episode is actually caused by low blood uric acid level causing crystals to dissolve, which causes the area no longer covered by white blood-cells to be painful? The presumption here is that at some point all crystal matter will be dissolved and I can be pain-free?
How long am I likely to have to suffer these repeated episodes before I get prolonged periods of normality. Not being able to do exercise is causing me to become very unfit and unhappy.
What is an acceptably low level of uric acid which will allow my body to recover so I no longer suffer attacks.
Am I likely to need to remain on 300mg allopurinol for the rest of my life or will I be able to reduce / stop taking it as some point in the future.
Do other sufferers get regular checkups (with what sort of frequency) from their doctor to see how they are getting along? Is there any point in such checkups?
I am not meaning to ramble, just provide some information about my experiences so far and see if what I am suffering matches symptoms of others in some way.
Thanks for reading this and also for any help and advice you can provide.
ChrisSeptember 24, 2013 at 4:09 pm #15366CujoParticipant
Keith probably will give you a more comprehensive and competent answer, but here’s my two cents:
Since I started taking allopurinol passed more than three months before the crystals dissolved so that the attacks began to be weaker and finally stopped. From what I think and learned, uric acid measurements in this period can be a bit confusing. The low level does not mean the absence of attacks.
Uric acid crystals accumulate long years, you have to give them some time before they completely dissolve.
I understand that you are an active person and you do feel bad when you can not exercise but personally I would wait another month or two. Stressing affected joints is not a good idea.
Reducing the dose of allopurinol is possible only if the uric acid level is maintained at a level of 5 mg/dL or less. Examine the blood regularly once the situation is stable.
I think that the basic tactics in the fight against gout is this: remember the daily dose of allopurinol, test blood regularly and have at hand an anti-inflammatory drug (in my case colchicine works wonders) and apply it as soon as pain manifests itself.September 25, 2013 at 2:10 am #15370
I don’t know about more competent, @cujo. You pretty much said it with “Reducing the dose of allopurinol is possible only if the uric acid level is maintained at a level of 5 mg/dL or less.”
Maybe I can emphasize the “or less”
Everything I read before I went on allopurinol told me that it is best to aim as low as possible. It’s simple biochemistry, if ever there can be such a thing. When uric acid concentration is lower in the blood, uric acid deposits dissolve faster. Yes, there are complications where tophi are locked into solid lumps of dead cells, but those tophi are unlikely to trigger attacks anyway. The problem is caused by uric acid deposits that are spread throughout the body. These have taken years to form, but they dissolve quickly.
I have seen hundreds of discussions here where uric acid levels are floating around the 6-7 range. They are all tales of misery as crystals start to dissolve, then reform. I had something of a battle with my doctors when I started allopurinol, as they were easily satisfied with a 300mg dose that brought me down to 7mg/dL. In my group practice, I eventually found one doctor who listened to my thoughts on the crystallization point of uric acid. He agreed with me that maximum dose was best in order to flush out old uric acid deposits. I’ve been on 900mg allopurinol per day for 2 years, and I never get any twinges. There are still signs of a tophi in my elbow, and I will maintain the max allopurinol as long as my doctor prescribes it, in the hope that the one remaining sign of gout will eventually go.
Everything that @sorepaw says sounds normal. Normal for most doctors, but not acceptable to me. And, to return to Chris’s points, there is ample evidence to show that, once you dissolve all the old crystals, you can take a break from allopurinol. I might risk that with my doctor monitoring me. I doubt I would with yours.
Annual tests for uric acid with liver and kidney function tests are an absolute must. More frequent until you get stable.September 25, 2013 at 3:35 am #15373jasper65Participant
Having had gout for 6 years it may help someone to see what happened to me. GP never diagnosed my gout, he gave me cortisone injection into a gout inflamed knee which did nothing . Luckily for me a locum was in attendance at my next visit and seeing i was in pain and had been having pain in many joints ( both ankles, knees, elbows, finger joints , oh and lumps on fingers, earlobes and elbow) she thought it may be RA !! I was scared then …but she booked me an appointment at the hospital…saw the rheumatologist who said “Have you never had a test for gout ? ” ….NO….she was absolutely amazed. She gave me a blood test and i was 647 from memory and she put me onto allo with a review in 6 months….went to 300mg went down a bit but not to below 300….I had to argue with the GP to up my level to an eventual 600mg allo, to which i added anothe 100mg to make sure…he opened his book and said Oh ok 800mg is the top dose so ok 600mg ( do you think he understood gout ?? !!!! ).
It has taken a full year with Allo and Colcochine to stop the attacks, and reduce tophi. I have now been attack free for 8 months and my rheumatologist has discharged me and said come back if I have any more problems with my GP concerning gout.
That rheumy has literally saved me from having a life of being in pain, before I would have given over every penny of my savings to get my life back to normal.
Oh and my Uric is now 247…no bumps…happy days.
SEE A RHEUMATOLOGIST is my adviceSeptember 26, 2013 at 1:49 am #15379
Fantastic to know you’re gout free @jasper65. Also fantastic to know you’re helping other gout sufferers find their Gout Freedom. Like with many diseases, some doctors take the trouble to learn what’s best. If they don’t, as you say, a rheumatologist is the best option.September 26, 2013 at 2:22 am #15385jasper65Participant
As a quick note….A big thanks to you Keith and this site as it gave me all the ammunition I needed to “coerce” my GP into giving me more allopurinol…Thanks againJanuary 18, 2014 at 2:34 pm #15949red92xblueParticipant
I can tell you I was gout free by taking 300mg allopurinol for 7 years. I took a vacation from the pills for 20 months and i am now having gout attacks again. So I will go back on the 300mg of allopurinol. I tried to lower my uric acid eating better. But it only went down by .5 mg/dL. With no medication it was around 9mg/dL. With 300 mg of allopurinol it was down to 5mg/dL with no symptomsJanuary 18, 2014 at 10:33 pm #15962
Allopurinol vacations are OK, but you have to monitor uric acid levels. There are no clear rules on how long you can stop taking it. Personally, I’d get tested every three months, and make a judgment from the results. If it got to 9mg/dL on more than two tests, I’d be straight back on the allopurinol.
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