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  • #18510
    Will
    Participant

    I found some great information on this website and wanted to post my situation. For the past two years I have had attacks about every three or four months. I will wake up and have severe pain on the outside of my ankle. Sometimes the night before I can start to feel the attack coming on. There is no visible swelling or redness. I am 36 years old, 165 pounds and don’t drink. My grandfather and my great-grandmother both had gout.

    Several doctors did not think it was gout because it wasn’t impacting my big toe. However in June of this year my primary doctor did a uric acid test and it came back it 8.2 mg/dl. He started me on allopurinol 300 MG. I retested my uric acid level in late August and it was down to 5.2 mg/dl. I went 5 1/2 months without an attack. This morning however I woke up with pain in my ankle. I have taken one Colcrys every 4 hours today (3 total so far). I see my primary doctor in the morning but he did call in 50mg pills do Indomethacin with the instructions to take three per day.

    I have had blood tests done over the last year for about auto immune disease imaginable and all came back negative so that is good.

    Even though I do not fit the typical gout profile forget I had hoped that I had it solved but I’m very discouraged after 5 1/2 months that I’ve had a flareup. It has me questioning if I really do have gout as I assumed with the lower uric acid level I was out of the woods.

    I wanted to see if my case did sound like gout to you all.

    (note, after taking the Colcrys and Indomethacin my for one day my flareup seems to be gone. Also all of my flares of the last two years of been in my right foot.

    Thank you
    Will

    • This topic was modified 7 years ago by Do Not Post.
    • This topic was modified 7 years ago by Will. Reason: Update
    #18526
    Keith Taylor
    Keymaster

    Hi Will, welcome to the gout forum.

    It is clear from what you have said that you do have gout, but the question is: Is it controlled?

    To me, there’s no such thing as a “typical gout profile.” There are many different causes of excess uric acid. The common view of overweight gluttons is not typical. Excess weight plays a part, as it does in many diseases, but not being overweight is no guarantee. Just as not smoking is no guarantee against cancer.

    In your case, you have the most common cause of excess uric acid – genetics. You can’t change your parents, so you have to control uric acid by other means. Allopurinol is the best option, and getting down to 5.2mg/dL is good, though strictly speaking, lower would be better. This is particularly true for the first year or so of allopurinol treatment. Very low uric acid is the best way to dissolve old uric acid crystals that have usually grown over many years.

    Normally, I say that if you have maintained uric acid at 5 or lower for six months without a gout flare, you have gout under control. The six months starts as soon as you record a blood test result of 5 or lower, but restarts if uric acid rises above 5. I know that your case is borderline, but it strongly suggests that you have not yet got gout under control. The only way to prove that is rheumatological tests, but I believe these are unnecessary. If you increase allopurinol to at least 400mg, then you should be out of the risk zone in a few more months.

    Until you are out of the risk zone for gout attacks, it is important to learn how to deal with them properly. Colcrys (colchicine) is great at stopping gout attacks getting worse. That is why it should be taken at the first sign of an attack, or as a preventative for the first months of uric acid lowering drugs. It works by poisoning your immune system. 1 pill is normally enough, but 2 might be required. 3 or more is dangerous. Excess colchicine will not make gout pain any less, but it will make you ill. Colcrys has no pain relief property. All that happens is, the inflammation subsides naturally, or faster with anti-inflammatory drugs. That’s why I always recommend a combination package, and colchicine-indomethacin is as good a combo as any.

    Will, I hope this makes sense to you. You are so nearly there, that a little more allopurinol and patience will see you through to Gout Freedom. I know it’s disconcerting when the unexpected flare happens. However everything you describe says normal gout to me. And normal gout is very easy to treat, as long as you treat 5 as the upper limit, and aim much lower at first. Please stick to the maximum 2 Colcrys per day – there is no benefit from taking more.

    If you need clarification on any of the points I’ve made, please ask. And please come back to share your progress in future.

    #18658
    Will
    Participant

    Keith,

    I appreciate your response. My update is this. My flare-up only lasted 1 day. The Colcrys/Indomethacin combo seemed to help a lot.

    This week I had my uric acid retested and it came back at 5.3.

    The nurse called and I asked for her to request my doctor in increase Allopurinol from 300mg to 400mg. The nurse called back this morning and said my doctor said that wasn’t a great idea and for me to just watch my diet more carefully. (I had eaten ham and turkey the day before my flare though I have no idea if this contributed to the flare or not).

    I was a bit disappointed that my doctor did not increase the Allopurinol. I am not sure what my next step should be. Perhaps I wait and if I have another flare then I go in and force the issue?

    #18705
    Keith Taylor
    Keymaster

    Sorry for delay in replying @wpack3

    Diet is a long term control for gout. Allopurinol is an immediate control. I think your doctor is suffering from wooly thinking about patient-centered gout control. 5.3 is acceptable for people with kidney problems, or other issues that prevent increasing allopurinol to the correct dose.

    It is not certain that you will have another flare. My recommendation for an increase is based on the guidelines from the American College of Rheumatology. They do allow for the higher level of 6mg/dL, but in these cases, patients are probably being monitored quite closely. The reason for the safe level being set at 5 where possible is to give an adequate safety margin. Also, there is no downside to going lower than 5, and plenty of benefits. Main benefits are a shorter period of time you are at risk of a gout flare, and better chance of repair to damaged joints.

    I’m a great believer in improving diet. Once I started allopurinol, I felt I could eat anything, and reverted to many bad eating habits. Too much food, especially meat and fish. Eating takeaways late at night after excess alcohol. Then I realized I was seriously at risk of heart disease or other obesity-related problems. I’ve improved my diet considerably but even after a year, I’ve probably got another year to get where I need to be. If I had to, I’d make a deal to get higher allopurinol dose for 1 more year until I get down to normal body weight.

    Will, I’m not sure what works best for you, but if it helps, I’m happy to email your doctor with the medical references that support the move to 400mg per day allopurinol. As I say, you’ll probably be alright with 300, but I believe 400 is a safer option. If you agree that the diet option is better, I can help you with that too. Your doctors advice to “just watch my diet more carefully” is, in my opinion, inadequate. You need specific advice that matches the food that you like. Eat food that you like, sufficient (not excess), mainly plants.

    #19399
    Will
    Participant

    Keith,
    I wanted to give you an update. About a month ago my doctor increased my Allopurinol to 400 MG. the past two weeks or so I have not been very active and my foot was doing really well. Well the past 3 days I have been very active and doing strengthening exercises for my ankle as well as range of motion exercises because the ankle that has gout doesn’t have the same range as my left ankle.
    The pain has returned to my right ankle. It isn’t like a full blown attack yet but I am walking with a slight limp. The pain is on the outside of ankle and top of foot.
    My question is this. I was on 300mg of allopurinol for 5 months and have been on 400mg for 1 month. Is it possible this pain is just irritation in the foot has been activated by exercise and the pain is due to some crystals that haven’t yet dissolved? I don’t know if this is a possibility or not. Activity and ankle exercises are clearly bringing on pain when I put weight on the ankle. Can gout cause nagging pain or does it only trigger full blown attacks?

    Update: about an hour after I wrote this the pain has increased. It is now getting similar to a full-blown attack. Just thought that would be helpful to know in your response.

    Thanks for your thoughts.

    • This reply was modified 6 years, 10 months ago by Will.
    • This reply was modified 6 years, 10 months ago by Will.
    #19462
    Keith Taylor
    Keymaster

    Sorry, Will, I don’t know how I missed this. And not for the first time. I really must try to find out why my notification system isn’t working.

    First off, if your doctor increased allopurinol dose a month ago, you should have had a retest by now. Anytime after two weeks is OK, but leaving it too long just wastes time. The only reason for taking allopurinol is to get uric acid lower, and so it has to be monitored. The test result history makes it much easier to judge what is happening. These are important facts to add to your profile, which helps understand what is happening in future.

    Also, I can get easily confused without reminders of these important facts. I know I’ve discussed the risks of exercise and gout-weakened joints recently, but I can’t remember who with. Is anyone supervising your exercise routine? Do they/you have a grasp of the basics of exercising tendons that have been weakened by uric acid crystal damage?

    After your update, it sounds like the discomfort is either over-zealous exercise, or the first signs of a typical gout attack. Are you still taking the colchicine? That might have prevented discomfort becoming a full blown attack.

    #19558
    Will
    Participant

    Keith-
    My doctor has not discussed a uric acid retest but I will call tomorrow and request one. My doctor also has never addressed my exercise program. I think the time has come to set an appointment with a rheumatologist.

    Last week my attack peaked Friday. I made a mistake not starting the Colcrys earlier in the week. I took Indocin Fri morning and evening and by Saturday the pain was gone.

    The first 5 months on Allopurinol I had no foot pain. But the last 2 months certain exercises have brought on foot pain and I have had several flare ups. We have had cold weather so that may be playing a part? Is it possible remaining crystals are “melting” after 7 months on Allopurinol? I am just trying to understand why I have had more trouble recently.

    Thanks again for all you do.

    #19564
    Keith Taylor
    Keymaster

    It is quite likely that recent gout flares are because uric acid crystals are dissolving. Partially dissolved crystals can cause gout attacks. However, as long as you maintain safe uric acid levels, those attacks will get less frequent, and less intense.

    Without physical examination, it’s impossible to know if exercise is contributing to pain, or if it is entirely down to old uric acid crystals.

    Exercise can be tricky to manage for gout patients. On one hand, exercise is generally good for gout. On the other hand, joints are weakened by the presence of uric acid crystals. Therefore, it is best to avoid stressing the joints with exercises that could overstretch tendons, or induce impact damage to cartilage and bone. There is some evidence that shows that, if damage is not too serious, then joints will repair themselves slowly, once old crystals have dissolved.

    Common sense says that, if certain exercises are bringing on pain, they are best avoided until you have gone 6 months without a gout flare, whilst maintaining safe uric acid levels. It is very wrong to increase allopurinol dose without new blood tests after 2 to 4 weeks. These tests must cover uric acid, kidney function, and liver function. If kidney function and liver function results are OK, it might be a good idea to increase allopurinol again. The lower you get uric acid, the faster you dissolve old uric acid crystals. That, in turn, reduces the period of time you are at risk from gout flares.

    I don’t think a rheumatologist would advise anything more at this stage, but consult one if you feel better. In any event, you need to take charge of your own uric acid tests. Get tested every 4 weeks or so, and post your results here. You need six months with uric acid below 5mg/dL, and no gout flares. After that, you can be fairly certain that most of the old crystals are dissolved. All you need to do then, is get the 3 blood tests at least once a year. You might be able to reduce allopurinol to maintain uric acid at 5. Just as with increasing dose, blood tests should also be done 2 to 4 weeks after reducing allopurinol dose.

    A new gout member has committed to posting here every day for 30 days. I think that is a great way to stay focused on getting good control. Maybe 3 or 4 times a week is more realistic. My point is, by regular posting, you stay aware of what really matters. In this case, it is your uric acid levels first. We can also discuss exercise in more detail.

    #19631
    Will
    Participant

    Tomorrow morning I have labs for uric acid, kidney and liver function. I had an x ray of my foot last Juky, just as I was starting Allopurinol and the dr said my foot looked good. But yi assume the crystals wouldn’t show on imaging anyway.

    Twice this week I have had to take Indocin and Colcrys as I felt pain coming on in my foot and didn’t want a flare. Both times the pain went away quickly.
    I just don’t get why I went 4 months with no pain and being able to exercise and now in last two months I have had a lot of days with some pain and several flares, though at their peak they aren’t as bad as they used to be before treatment. I don’t know if it is a combo of cold weather and crystals now desolving or if gout is not the culprit.

    I will keep posting updates.

    #19632
    Keith Taylor
    Guest

    Yes, Will, x-rays are of limited value, but can sometimes show if there is any joint damage. Imaging for gout is getting better, but not yet mainstream enough for helping gout management.

    It’s good that you are getting pain under control quickly.

    As for why you went 4 months without a flare – that’s a mystery. It’s also a mystery to me why any gout patient starting allopurinol, goes 4 months without tests and dose review. I can only assume that, in the first 4 months, dose was only slowly dissolving crystals. Another possible explanation is that a large deposit of uric acid crystals was hidden for a while by sheaths of white blood cells, and these suddenly became exposed. We’ll never really know.

    The important thing is regular tests to keep uric acid below 5, whilst also monitoring kidney and liver functions. After another six months of that, I hope the gout attacks will become a distant memory.

    I’m looking forward to your updates.

    #19674
    Will
    Participant

    Keith,

    I got a call today and my uric acid level is now 4.3. It was 5.3 before I moved from 300mg to 400mg of Allopurinol.

    My kidney and liver function tests were both normal.

    #19683
    Keith Taylor
    Keymaster

    This is great news, Will.

    You still have a few months before gout is completely under control, but you are definitely on the right track.

    Gout flares are still a risk until the bulk of your uric acid crystals have dissolved, but these get less intense, and less frequent, as time goes by. If you do notice a twinge, Colcrys at the first sign, and Indocin if necessary, will soon clear it up. I hope you can stay confident if the occasional flare bothers you.

    Thanks for the update, and I hope you’ll stay in touch – maybe your perseverance will encourage others in a similar position.

    #19954
    Will
    Participant

    Keith,

    I wanted to give you an update. For the past 3 weeks any kind of activity I do is causing some level of pain in my foot. I went 6 months after starting Allopurinol with no pain but for the past 3 months I have had fairly persistent pain, and any activity causes more pain. My uric acid level is down to 4.3. The activity that is bringing on pain is not strenuous so I can’t blame that.
    Prior to this 3 month stretch when I would have a flare it would last 3-5 days and then I would feel normal and could do anything. This time is not working out that way.
    I have an appt with a rheumatologist March 2nd. But I am so confused now. I guess the low uric acid level could be speeding up dissolving crystals but I don’t get why I have had trouble for 3 months when the attacks used to last 3-5 days. I am really questioning whether or not what I am going thru is possible with gout?
    I don’t know if it matters but it has been frigid cold here recently. I am not sure that matters because again I have been hurting the better part of 3 months but I thought I would mention it.

    Any thoughts would be appreciated.

    Thanks

    • This reply was modified 6 years, 9 months ago by Will.
    #19960
    Keith Taylor
    Keymaster

    Will, I’m sorry that this is continuing, but I’m pleased you have an appointment with a rheumatologist. I can’t prejudge what that outcome might be. I just want to reassure you that if you are not sure what to ask about, or don’t understand any part of what your rheumatologist says, I’m here to help.

    It is great for me that you have taken time to record some of your gout facts in your Personal Gout Profile: https://gout-pal.com/users/wpack3/profile/

    If I look at this objectively, I say you had uncontrolled gout for at least 2 years, but probably longer. You started getting it under control Aug/Sep 2014, and finally achieved safe uric acid last month. There’s a few unknowns, particularly the length of time that uric acid crystals have been building up. However, from a uric acid control point of view, you are doing everything right. Personally, I went lower with my uric acid levels, but I’d had over 16 years of uncontrolled gout, and I knew I had to act as fast as I could.

    You are now in what is usually referred to as the debulking phase. That is where uric acid is low enough to allow old crystals to dissolve. At your current level, I do not think there is any chance that any new crystals will form, but this is not entirely out of the question. The crystallization process is complex, but one major factor is temperature. Prolonged exposure to cold will lower uric acid crystallization point. Therefore, you should take time to explain to your rheumatologist the exact nature of your exposure to cold. Some rheumatologists believe that joint examination for crystal evidence should be accompanied by measuring the temperature of the affected joint.

    Fundamentally, there are 2 choices for the pain you are experiencing. Either it is gout-related, or it is something else. If your rheumatologist can detect something else, then that can be treated. If not, the assumption must be that it ought to resolve itself, once the threat of uric acid crystal reaction has gone. If that is the case, I believe your rheumatologist should advise you when to return for a follow-up examination. Or, they might tell you to make an appointment if you are still concerned after so many months.

    All I’d add to that is, if gout is still the main suspect, then it makes sense to me to increase allopurinol dose to get uric acid lower. This speeds up the time to dissolve old crystals.

    I’m sorry there are no definite answers, Will. However, I think you are doing the best you can to find the best answers you can.

    One final thing that might help your rheumatologist is to be as clear as you can about the impact of colchicine and Indocin. I’d recommend adding information to your Profile about when pain occurs, and when you take these pain control drugs.

    I hope this helps, but please feel free to ask for clarification if anything is unclear, or if you need more help preparing for your rheumatologist appointment.

    #20178
    Keith Taylor
    Keymaster

    Hey, @wpack3

    How did you get on at the rheumatologist?

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