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??????? For the past three months or so, I have been suffereing with the swelling and AGONY of two seperate flare ups. I believe my biggest problem is having nobody who knows what to do with me in the doctors office.? Two weeeks ago they put me on Allpuinol and 15 Indomethasin. I ran out of the Indomethasin and when the swelling didnt get better, they put me on Predisone, which is helping.. But now the pain is back and I can barely walk, its in my left ankle and right knee now.I see a brand new doc on Tuesday, and my hopes are up as much as they can be. I am so gratefull for all the information and support here. I have learned so much but now that I see the full picture, I am really scared that thie could run my life if I cant get it under control. I do not drink any alcohol but I do drink soda's, which I have cut down on since. My new friend is WATER.. Can anyone give me ideas to get the pain under control and what to say to this new doc on Tuesday?
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Thanks again.
Penny
Two attacks in 3 months?
What dosage of Allopurinol are you on?
How long have you been on it?
Had you had gout attacks before the last two? Or was that your first three months ago?
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3 things have really helped me out so far, helping me feel more in control.. by way of education.
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1. Reading a book called “Beating Gout” cover to cover?
2. Buying a Uric Acid meter to monitor my own UA levels ..?
3. This forum. Wealth of information and help to explain what is happening to you along the road to recovery.
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Unfortunately when taking Allopurinol it tends to get worse before it get's better.?
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Regarding ? controlling the pain? this is hard once the attack has progressed. If you act quickly when that familiar feeling of an attack begins there is a good chance you can break the cycle of your body sending in red blood cells to attack the crystals that have formed. Many here recommend a drug called colchicine?(I think) which I am not familiar with. I have been taking naproxem (anti inflamatory) or voltaren for a few days which seems to help prevent major pain and reduce the duration of attacks if taken early enough.?
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I think the most common advice you will get is.. increase your dose of Allopurinol to 300mg with the intention of reducing your Uric Acid to below 6.0mg/dl.. Allopurinol makes you excrete more of the harmful Uric Acid that causes crystals to form in your joints. Drink lot's of water whilst taking Allopurinol to assist this process and prevent kidney stones from forming. In fact, drink plenty (2-3L per day) of water from here on in anyway. If you get an attack while on Allopurinol, don't stop taking your dosage. (Don't increase it during an attack either).
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As your UA level drops you are prone to more attacks for several months. Perhaps someone can clarify better than me, but my understanding is that this is caused by crystals in your body diluting, which creates some fluctuations or perhaps more movement of UA around your body until you have lowered it to a safe level.
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UA levels can be difficult to measure because they tend to drop drastically during an attack and then taking several weeks to rise again. It's a long process of measuring and understanding UA levels, so it's nice to have a meter at home. (You can find out more about the meters int he forums if interested)
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So what to say to your Doctor?
Ask about having your UA levels monitored regularly if you are not already doing that.
Depending on what dose of Allopurinol you are on, you should find out what the doctor has planned with that medication. E.g. they should be monitoring that your UA levels reach safe thresholds.
It's likely you will have more attacks, in which case you should have some sort of anti inflamatory available to take at the earliest sign of an attack.. so ask about that. Once your current attack has subsided that is.
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You mentioned that you cut down on Soda.. Someone else may have comments, you may want to consider cutting that out completely for a while. Others may like to comment but, there is a lot of discussion around the strong relationship between sucrose / fructose and gout that you might want to read a little more about.?
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Best of luck, I hope you are feeling better soon.
Hi Penny,
You CAN get this under control, but you will need to be determined with the medics. If you control your uric acid, pain will stop eventually, but you need good pain relief for a few months. I only take it daily when I am increasing my allopurinol dosage. After a week, I stop daily, but keep it on hand to take if I feel an attack coming on.
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I find a combination of anti-inflammatory and analgesic works best, combined with one or two colchicine per day. This is what you need to discuss with your doctor. In my opinion, prednisone is not good if there are alternatives that work. If you get chance to talk to a pharmacist before you see your doctor, ask what they recommend ? pharmacists are usually up-to-speed with the most effective pain relief.
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The other important thing to discuss with your doctor is your uric acid level. You need the number (not a meaningless high/normal/low) and you need enough allopurinol to get it below 5mg/dL.
Hi Keith-
? I am on 100 mgs Allpurinol. I started it a lil less then a month ago.These are my first attacks of gout. They started in mid July.
Thank you and God Bless you for taking the time to post a response to me, which I read VERY carefully.? I have found this web site very educational, and knowledge does help you feel empowered. I am upset that I am in a crisis with my health, it seems like it has been nonstop since Nov. or 2010 when I had open heart surgery done. I was dx'd with Takayasu's Arteritis. I am still in soooo much pain and? with that pain comes the inability to get around. I? feel trapped in my own body! I am really in a bad mind frame right now.. I am normally very independant and never ask people for help.
??? Now, I Feel its gonna be a decent day if I can go to the bathroom without taking 10 minutes to to get there. I know this is just another battle I am facing and I wont make it with the attitude I have right now.
?????? I am so impressed by your bravery and positive attitude, I am hoping it will rub off on me.
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Penny
ouchiefeet said:
? I am on 100 mgs Allpurinol. I started it a lil less then a month ago.These are my first attacks of gout. They started in mid July.
That is a HORRIBLE dose almost guarantted to increase the number of attacks…go to 300 mg. ASAP.
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?I was dx'd with Takayasu's Arteritis. I am still in soooo much pain and? with that pain comes the inability to get around. I? feel trapped in my own body! I am really in a bad mind frame right now.. I am normally very independant and never ask people for help.??Arteritis is a terrrible affliction,?do you think it was a result of sloppy heart surgery?? Are they treating the arteritis with prednisone?
and 15 Indomethasin.
When I?had my first attacks many years ago, I was prescribed indomethacin (Indocin) and it?helped but I found it unpleasant BUT I was prescribed 3 x 25 mg./day. It sounds like you should have been taking more.
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With 300 mg. allopurinol per day, your attacks will soon become a thing of the past but I wish I could say the same about your arteritis.
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zip2play said:
and 15 Indomethasin.
When I?had my first attacks many years ago, I was prescribed indomethacin (Indocin) and it?helped but I found it unpleasant BUT I was prescribed 3 x 25 mg./day. It sounds like you should have been taking more.
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Yes, that is a point I often forget when I am talking about pain relief. Gout deserves something a bit better than normal over the counter doses. Whatever pain relief you take, always ask the doctor or pharmacist what the safe maximum dose is, and if the med can be combined with a different type of drug between doses.
zip2play said:
ouchiefeet said:
? I am on 100 mgs Allpurinol. I started it a lil less then a month ago.These are my first attacks of gout. They started in mid July.
That is a HORRIBLE dose almost guarantted to increase the number of attacks…go to 300 mg. ASAP.>>>>>
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Zip2play,
? I will increase that dose myself if I can.? This is what my problem has been all along.. I cant find a doctor who knows what hes doing. Now that I have read your suggestions, I may try to gt in to see the urgent care doc who seemed to help the most and get him to increase the dose. I really appreciate your advice, it helps.
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Penny
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The doctor was reluctant to perscribe the indomethacine because it conflicts with the coumadine? Thats what he said any way. Also, I believe my heart surgeon was a really great specialist. I think not being diagnosed for so long has done a lot of damage to my body.?
?? Thanks for the assistance :o)
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Penny
Penny,
I do not want to disagree with zip2play, who knows more about gout, and most other things, than the rest of us put together, but I have an issue with 300mg allopurinol.
It is certainly better than 100mg, but the determining factor must be your uric acid level.
Set a target – 5mg/dL is best, but I prefer to go lower for a few months to speed up getting rid of the old crystals. This also cuts the time you need to depend on pain relief.
Take enough allopurinol to reach your target, up to a maximum of 900mg.
Get tested at least once per year, but every 4 weeks when you change dose until you reach stability.
In a few months you can contact me to see if I can change your username to usedtohaveouchiefeet.
Keith (Gout Admin) said:
Penny,
1) I do not want to disagree with zip2play, who knows more about gout, and most other things, than the rest of us put together, but I have an issue with 300mg allopurinol.
It is certainly better than 100mg, but the determining factor must be your uric acid level.
Set a target – 5mg/dL is best, but I prefer to go lower for a few months to speed up getting rid of the old crystals. This also cuts the time you need to depend on pain relief.
2) Take enough allopurinol to reach your target, up to a maximum of 900mg.
3) Get tested at least once per year, but every 4 weeks when you change dose until you reach stability.
In a few months you can contact me to see if I can change your username to usedtohaveouchiefeet.
Ad 1): I am glad to see that I am not the only one who dares to disagree with Zip. However, I now must disagree with you, Keith. Between you and me, we two know just as much as Zip does, if not more, and “the rest of us put together” certainly know more than Zip by himself. Please, don't forget, there are several gouties (without ?mentioning all their names) around this globe who also have contributed invaluable knowledge and help to other gouties.
Ad 2): I also question your 900 mg figure. Who has established with certainty that 900mg is good or could be bad(too much)? I, personally, think that the maximum figure aught to be established by the patient, with the help of a knowledgeable representative of the medical industry.
Ad 3): Lab tests should be done before and at the end of the experimenting stage of lowering the SUA, with regular weekly home testing, till stability and desired SUA level is reached.
I wrote 1) deliberately to wind Hans up and it worked.
I wrote 2) because it is true. Documentation and references are widespread, but this one is pretty clear from the British Society of Rheumatology (uric acid scale adjusted to the more common mg/dL):
Recommendation
Initial long-term treatment of recurrent uncomplicated gout normally should be with allopurinol, starting in a dose of 50?100mg and increasing by 50?100mg increments every few weeks, adjusted if necessary for renal function (see further), until the therapeutic target (SUA<5mg/dL) is reached (maximum dose 900mg).I wrote 3) because I believe it is my primary duty to encourage the dialog between doctor and patient, so that gout patients know what questions to ask, and can understand the responses. Where doctors do not listen, or are unwilling to research current best practice, then I encourage gout patients to insist on proper treatment according to the latest guidelines. I support everyone who wants to take a more active role by monitoring their own uric acid, but I believe they have a right to get this service from their doctor.
Initial long-term treatment of recurrent uncomplicated gout normally should be with allopurinol, starting in a dose of 50?100mg and increasing by 50?100mg increments
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I can just HEAR that patient screaming in pain?and I have my windows closed. :D:D
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I realize that as site owner you must say ask your doctor about everything, clear it with your pharmacist, test uric acid on a weekly basis, watch for rash, etc.
I on the other hand have the luxury of just spitting out the truth. But then I know if I just give the capsule view, you're there? to fill in the details.
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And then hans is always there to kvetch pointlessly…and rudely.
Zip2play, I am not merely trying to cover my own back.
Though hundreds of people contribute here, many thousands take the advice without joining the debate. Also, I want Penny to know that I care, and I am not just another gout website owner who dishes out a few set pieces just to sound good.
I know that the risk of allopurinol hypersensitivity is very low. However, if 1 in the thousands of people who read this gets hurt by going on higher doses of allopurinol before they are ready, then I have failed.
The slow and steady pathway advised by the specialists works every time. For impatient patients (and I am one of them), there is a shortcut that I have described earlier – just double your dose, and halve your time to the next dosage review appointment.
In the grand scheme of things, following the slow and precise path might add a few weeks to the path to gout freedom. Colchicine plus anti-inflammatories plus analgesics will ensure that those weeks are pain free. A few weeks of discomfort after several years of gout attacks seems insignificant to me, but I am always interested in refining the finer points of a treatment plan if it does not quite suit the individual.
As for Hans, his? kvetching is not pointless. It has the noble benefit of keeping me interested and entertained.
Hans,
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If you knew what humor was, you'd have a point. Alas, elderly petulence does not not qualify as humor.
And raging and stamping your feet like some tophaceous Rumplestiltskin because someone paid me a compliment is just petty and small minded and ANYTHING but funny!
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Can we presume you live alone?
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Keith,
As we know antibiotics are FAR more likely to have an?adverse, even dealdy,?allergic reaction than allopurinol. Have you ever heard of a doctor prescribing a sustandard dose of antibiotics for weeks or months to avoid the possibility of an untoward reaction? Of COURSE not, the EFFECTIVE dose is the one prescribed.
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Have we not both witnessed time and time again the agony suffered unnecessarily by poster after poster started on a 100 mg. dose of allopurinol. It is NEVER enough. One might call a gout attack slight while one is not having it…but often for the siufferer a single unnecessary attack can be Hell on Earth.
What happened to the Hippocratic prime dictum: FIRST, DO NO HARM! A substandard dose of allopuinol DOES harm.
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Doctors prescribing the go slow are just being stupid, and?thoughtlessly repeating the same stupidity, ?especially? in light of the real possibility that NOBODY ever died from a dose of 300 mg. allopurinol. Any evidence to the contrary?
You cannot say that for aspirin, penicillin, antidepressants, tranquillizers, and probably even diuretics. Rare is the drug that is as safe as allopurinol.
zip2play said:
As we know antibiotics are FAR more likely to have an?adverse, even dealdy,?allergic reaction than allopurinol. Have you ever heard of a doctor prescribing a sustandard dose of antibiotics for weeks or months to avoid the possibility of an untoward reaction? Of COURSE not, the EFFECTIVE dose is the one prescribed.
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Have we not both witnessed time and time again the agony suffered unnecessarily by poster after poster started on a 100 mg. dose of allopurinol. It is NEVER enough. One might call a gout attack slight while one is not having it…but often for the siufferer a single unnecessary attack can be Hell on Earth.
What happened to the Hippocratic prime dictum: FIRST, DO NO HARM! A substandard dose of allopuinol DOES harm.
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Doctors prescribing the go slow are just being stupid, and?thoughtlessly repeating the same stupidity, ?especially? in light of the real possibility that NOBODY ever died from a dose of 300 mg. allopurinol. Any evidence to the contrary?
You cannot say that for aspirin, penicillin, antidepressants, tranquillizers, and probably even diuretics. Rare is the drug that is as safe as allopurinol.
Comparing allopurinol with antibiotics makes little sense. We know that antibiotics are there to kill germs, so underdosing is like arming soldiers with a sausage – pointless and dangerous. Allopurinol is more akin to an intelligence agent tackling insurgents that have established themselves for years. A cautious approach ensures we defeat the baddies without harming the goodies.
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A far better comparison is something like carbamazepine. This, like allopurinol, has a rare but potentially deadly side effect where, for no apparent reason, white blood cells called eosinophils go out of control and kill you. Guess what the recommended dosing strategy is for carbamazepine?
No, it is not 300mg to start, it is 100mg followed by increases of 100mg. The maximum is different – 1200mg compared to 900mg with allopurinol. The principle is the same.
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On a personal note, 400mg for me was little better than 100mg – probably because I'm a fat bastard. I never tested a 300mg dose, because I took my own decision to jump from 100 to 400 instead of the recommended 200. The exact numbers are not significant, but the principle is. As someone wrote recently – first do no harm.
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Where is the evidence?
Look no further than the report I mention towards the end of my recent 300mg allopurinol myth article.
An 80 year old man started treatment with 300 mg allopurinol a day for
asymptomatic hyperuricaemia. Uric acid concentration was measured as
part of a routine biochemical profile, and was 517 ?mol/l. Six weeks
later he developed asthenia, anorexia, fever, diarrhoea, jaundice,
abdominal pain, and pruritic skin lesionsHe died.
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Now, I have to point out that this is very rare. It is not isolated, and there are similar cases reported in PubMed. This just happened to be the first I looked at, but death at 300mg was enough to convince me that the slow but sure approach is effective and safe.
I acknowledge everyone's right to do it their own way. Start with 900mg if you want, or blow your life savings on a feast of febuxostat. Just get your uric acid down. Preferably sooner than I did. zip2play is not wrong, he just has a different view than me (and probably easier to understand).
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[If limpy is reading this – that, my friend, is a lecture]
Keith (Gout Admin) said:
?death at 300mg was enough to convince me that the slow but sure approach is effective and safe.
Me too.
?Now we can turn our attention to trying to convince Drs that only a couple of weeks (1 month at the most ) is necessary before an effective dose can be prescribed. 3 months, which seems to be the default here in the UK, is waaay too long and, as Zip says, likely to cause unneccessary suffering.
Keith (Gout Admin) said:
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Look no further than? my recent 300mg allopurinol myth article. ??
Now, THAT IS the most sensible thing you wrote about Allopurinol all year.
?I am glad to see you are calling the 300mg Allo dose a MYTH.
No Gout God and no doctor SLOULD tell anyone what the right dose for you, a gouty, is. Only YOUR BODY and YOUR BRAIN, provided it hasn't been “washed”, SHOULD tell you what is right and what is wrong. All a doctor should do is helping you and your body to find the RIGHT dose.
It's too goddamn bad that most people have been submissive to the notion that they must be told, or must do as they are told, how to live their lives!!!
hansinnm said:
Keith (Gout Admin) said:
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Look no further than? my recent 300mg allopurinol myth article. ??
Now, THAT IS the most sensible thing you wrote about Allopurinol all year.
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I am glad to see you are calling the 300mg Allo dose a MYTH.
No Gout God and no doctor SHOULD tell anyone what the right dose for you, a gouty, is. Only YOUR BODY and YOUR BRAIN, provided it hasn't been “washed”, SHOULD tell you what is right and what is wrong. All a doctor should do is helping you and your body to find the RIGHT dose.
It's too goddamn bad that most people have been submissive to the notion that they must be told, or must do as they are told, how to live their lives!!!
Nicely put, Hans.
odo said:
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Now we can turn our attention to trying to convince Drs that only a couple of weeks (1 month at the most ) is necessary before an effective dose can be prescribed. 3 months, which seems to be the default here in the UK, is waaay too long and, as Zip says, likely to cause unneccessary suffering.
3 months!
?I get my checks at 4 week intervals. Someone must be doing some thinking, cos the allopurinol is packed in 28 tablet boxes.
2 weeks is the minimum, as that is how long it takes for the dose to be fully effective (or at least I read that somewhere on the Internet, so it must be true). It takes one week to get test results at my doctors, so I figured an extra week was not worth worrying about.
I do not know how widespread the procedure is, but at my doctors, you make your own appointments with the receptionist or online. No way would I wait 3 months.
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I just remembered. One joker tried to increment from 100mg to 200mg. The 100mg made very little difference, and I suggested 300. He stuck to his guns, and gave me a prescription for 8 weeks. After 4 weeks on 400mg I returned claiming mis-hearing. He got the message.
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Keith (Gout Admin) said:
?No way would I wait 3 months.
[edit]I just remembered. One joker tried to increment from 100mg to 200mg. The 100mg made very little difference, and I suggested 300. He stuck to his guns, and gave me a prescription for 8 weeks. After 4 weeks on 400mg I returned claiming mis-hearing. He got the message.
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Neither did I. Stuck it out at 100mg for a month then took 200mg for a month & went back and got a scrip for 300mg thereafter. Still too long imo.
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