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I have just joined this forum and have not posted yet but I am getting a bit desperate. I am 37 years old and have had gout for about 10 years. The infrequent attacks in my toe have now progressed to frequent attacks in my ankle, knee and elbow. I have had 3 attacks in the last 4 weeks. I now think that I didn't realise that previous pains in ankle etc were in fact gout (I wish I'd kept a gout diary!). I also often get a really bad fever which usually lasts about 48 hours and gives me the shivers, night time sweats and high temperatures (the doctors said this was a coincidence but I'm sure it is linked to the gout as they happen at the same time!) The gout attacks last for a couple of weeks although the elbow pain has lasted a lot longer. I am on a no alcohol, wheat, dairy, sugar, caffine, chocolate diet for 8 weeks (loads of fun!) and I have been on allupurinol but the attacks keep coming. The doctor said my uric acid level was normal and has asked me if I want to have 300mg of allupurinol a day. I can't understand why the level is normal yet I keep having attacks. It is really having a major impact on my life and I'm struggling to look after my 2 boys (4 years and 5 months) and run my business while these attacks are happening. I suppose I'm looking for a bit of guidance..also I have been recommended MMS1 as a form of cure…..has anybody used it?
Cheers for your time all the best
Rhodri
Hi Rhodri.
It would help here to say what dose of AP you're on now -and, importantly, what your serum UA levels were at recent tests.
Doctors see SUA levels that cause gout as 'normal' , sad to say.
To add to trev's request for your SUA let me say that fever is QUITE common with a gout attacks…as are chills and general malaise. Your doctor can not be more mistaken.
Good treatment is precisely 300 mg. allopurinol/day forever, best started at some time when a full blown attack is not in progress. If you are taking it now, continue taking through any attacks. After a while it will stop the attacks completely.
Thank you both for taking the time to reply. I am on 100mg of AP and I have just phoned the doctor to ask for the uric acid level and they said it was 0.41 but failed to give anymore info. Does this sound right?
Cheers
Just to add to my own post above. I was told the uric acid level was 0.41 but looking over the other posts I can see that we are looking for numbers around 6. I wasn't told the unit of measurement so not sure if the amount I was given is relevant.
Cheers
I think that relects as a 6.9 [x1000/59 approx] mg/dl.
As you know that is above the threshold for avoiding attacks, once they have started , and yours certainly are banging along right now!
I don't take AP so can't talk about my levels- but an increase would certainly speed things up.
Your Dr. seems OK with this- it seems the usual case of unfamiliarity breeding content!
He is letting you decide!
Even if you increase dose- you will still have some time to spend clearing your system of urate.
You will probably eventually follow Zips' suggested route -on your level of discomfort!
Thanks Trev
You are right about the Dr letting me decide! The last visit he told me my uric acid level was fine and I asked if that means I can stop taking the AP. He thought for a while then admitted that he had forgotten I was taking AP (even thought it was on the computer screen infront of him!) He then asked me if I wanted to up the dose to 300mg…I then lost a bit of faith in the whole proceedings so must admit I am glad I have found this forum. I have booked another appointment where I will ask to increase the dose. If you don't use AP, can I ask how you control the gout. Thanks once again.
How do I control Gout- I don't!My fingers are well crossed!
But- I try to control lifestyle choices that impact it.
Fortunately I have retired, so my previous stress has reduced, my BP is under better control and I've lost quite a few lbs in weight this year.
I've reduced alcohol consumption and tried the dietary cherries, BBB and water upping -hard to remember that one! ;~(
I've upped daily regular exercise,too.
I recently nearly broke a small toe (the Dr. in A&E thought I had) and it didn't develop gout. I've had small toe gout previously, btw. My levels are a bit higher than yours, last take- but my attacks were spread over some years and painful enough to stop work- but not like some on here report.
Probably, I've got used to living with it to some degree- but I realise this is not a good place to be. If I can't see improvements in SUA test results- I will probably end up on AP by default ,eventually -unless both attack and tophi free at a level <6 SUA. Only one full attack in a year though!
Hi rhodri,
Your doctor is not alone in not having a clue about gout, so you must change him. Either change him by getting another, or change him by training him to give you what you need.
I have to assume that you have no other medical problems, so your gout is quite straightforward.
You simply need to up the allopurinol dosage and get uric acid below .35 mmol/L – better still, aim below .3
The different units are explained in the Reference – Uric Acid Levels at the top of each page here. It is a good idea to ensure that both you and your doctor understand the procedure for managing uric acid. The figures in brackets on that page need a decimal point in front of them to match the mmol scale that you use.
You do not need to restrict your diet, though you should eat a healthy balanced diet and avoid sharp weight changes up or down. Drink plenty of water, and if you are not getting enough fruit and veg to alkalize the urine, add lemon juice or bicarb of soda. Alkaline urine helps prevent kidney stones forming.
Avoid pointless expensive supplements.
The fever and pain are symptoms of a battle that is being waged by your immune system because your curent uric acid level is at a nasty point where crystals are constantly dissolving partially, then reforming. Do try to repeatedly stab your doctor if you get chance – the effects will be similar though perhaps slightly less painful. It will give him an indication of what his inadequate dosing is doing to you, and the publicity will help others.
The increased allopurinol dose will allow you do get rid of old uric acid crystals quicker, but you may still have some pain. Coclchicine is usually most effective, but NSAIDs like naproxen and ibuprofen are also useful. Some authorities suggest a lowish, preventative (prophylactic) dose at the same time as allopurinol. Others suggest keeping it on hand to take as needed. Personally, I'd go for the latter, then suggest you discuss it with your doctor. Maybe you'd prefer to discuss it here.
Good luck, and try to avoid any distractions from getting your uric acid number below .3 mmol/L
Rhodri…this sounds very familiar. I followed this same basic advice that you have been givien here and it worked for me. Just getting through the ugly parts was trying for me. Don't lose hope. I was on 100mg AP to and this time was tantamount to beiing locked in a cage with a wolverine going at your feet while you try to carry on with your routine. One thing that worked for me was the colchicine 2 at once then one per hour until violent just-in-time visits to the bathroom are necessary.
This gave relief that seems to have broken my cycle. Hang in there. For me, this site filled the void between what my doctors were telling me and insanity.
All these replies have really given me hope and some fantastic constructive advice..thank you all very much. Just a few more questions. I am due to meet the doctor next Monday (only available slot as I have decided to see the same doctor rather than repeat the story to every doctor and locum who practices there), where I intend to ask for 300mg of AP….can I just start taking 3 x 100mg until I get the new prescription? Also sirlimpsalot mentioned using Colchicine, I was prescribed this a few years ago but it played havoc with my guts. This seems a common side effect. How long do you recommend taking it for? Also how long roughly do you think the new course of 300mg AP will take to take affect. I'm a bit impatient and just wondered how long to break the back of this infliction?
I think that's all, once again many thanks.
I can’t recommend changing dosage without consulting your doctor.
It takes 2 or 3 days for allopurinol dose change to affect your uric acid production. How this affects you personally is unknown until you try it.
Colchicine can be used as a low dose preventative at .6mg twice a day. There is an unofficial guide to colchicine for acute gout attacks splattered around here.
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