May 6, 2017 at 9:25 pm #3617
As suggested I consolidated the ongoing thread so I could ask you a few questions and update you;
I’ve decided to go ahead with the 400mgs and have been doing so for the last 6 days. (I was alternating between 300mgs and 400mgs for a week to prepare).
I’d also like to mention that the 6 week attack seems to have subsided. Some inflammation is lingering around but I am able to walk on it far more frequently. However, despite the toe joint pain (gout attack pain) reduction, I went for a 3km walk around a week ago (the exact time I increased allopurinol to 400mgs) and my ankle / entire foot is hurting now but primarily around my ankle bone and the small toe joints that are close to the gout attacked toe).
I doubt this is the result of the walk as I take long walks regularly (prior to this gout attack) and I don’t usually get any pains. Could this be a bad side effect of the increase in allopurinol to 400mgs? Or do you feel this may be evidence of further crystals dissolving in the region with the additional blood flow from walking on it? Maybe under-used joints? My other foot is not effected at all. The pains almost started exactly the same time as increasing my dose and I’m a little concerned..?
On a separate note, I was wondering how long you took the maximum dose of 900mgs of allopurinol and if you managed to check those UA levels before and after as I really want to discuss with my rheumatologist if I can do the same and then take time off allopurinol for a year or so like you did?
Thanks Keith 🙂
May 8, 2017 at 1:08 pm #3624
The foot pain might have nothing to do with gout. So, if it persists, you should get it examined.
But, let’s assume it’s gout related. If it is, when you’re reducing uric acid, it’s all about the level that you’ve reached. I can’t recall us ever discussing your uric acid targets. But, you should have a target for the debulking period. Also, a maintenance target for when you’ve gone 6 months without any symptoms.
Now, those targets are not strictly related to your foot pain question. But, they put it into a meaningful context. Otherwise, we just end up talking ifs, buts, and maybes. So, can you post your targets if you have them, and the last 2 or 3 uric acid test results?
Moving on to my allopurinol management plan. The truth is, I never really had one. The nearest thing I got was to aim for uric acid as low as possible during my debulking period (which is probably the best plan).
You really do not want to follow my example, d_q. I was spurred into action by a near-fatal accident. 3 and a half years later, I prematurely quit allopurinol because I was too depressed to leave home. Then, I kept making stupid excuses to myself for not restarting. The only good news is, thanks to you, I’m going to make an appointment today, and get back on the allopurinol.
So, I’m not really qualified to give any advice about gout management. Except that, like most teachers, I can explain the theory, even if I have no clue about practical reality. Therefore, my recommendation is to wait until you are fully recovered before you even think about pausing allopurinol treatment. But, I guess it’s good to think forward. So, any break needs monitoring by uric acid tests. Unfortunately, these ideas about allopurinol ‘vacations’ are very new. That means, we have no ideas about how long it is safe to take a break. It would be stupid (like me) to wait until gout symptoms return. So, a year off is probably OK. But, we need DECT for gout before this can ever be a reliable way to manage allopurinol treatment. My feeling at the moment is, once I get back on allopurinol, I’m unlikely to consider stopping it again. But, I can’t guarantee that some foolish action on my part won’t change that!
Reading this back, I suspect I haven’t been particularly helpful. Sorry, I’ll try harder next time.
May 8, 2017 at 4:09 pm #3626
nobodyParticipantŦallars: Ŧ 569.05
Here are DQ’s latest results (so far as I know):
They were all done while allopurinol dosage was being increased and DQ is now taking even more than in mid-April.
I’m a bit of a blood testing skeptic so I don’t think you can avoid the ifs and maybes. That said, DQ is arguably not getting tested often enough considering the pace of the dosage adjustment.
Regarding drug vacations, couldn’t they be managed based on blood tests instead of ridiculously expensive DECT scans?
May 11, 2017 at 10:12 am #3631
Thank you for those numbers, nobody. They definitely support your notion of not getting tested often enough. We can see that January, February and March are all spent assessing allopurinol sensitivity, rather than controlling uric acid. And even if we allow for vagaries of testing accuracy, this seems too long to me.
So, we have a strong likelihood that d_q’s uric acid is only now getting low enough for old crystals to dissolve in any significant number. Therefore this sounds like exactly what happens to most gout patients during the early weeks of uric acid lowering. I.e. gout flares in unpredictable joints.
Now, to many people, that sounds like bad news. But, it’s only a temporary situation. As more crystals dissolve, attacks become less frequent and less intense. Also, it might be worrying if a patient is already on maximum allopurinol. But, even in that situation, gout patients have improved their rate of recovery by adding probenecid to their allopurinol. So, if my view isn’t obvious, I’d better state it:
Titrate allopurinol from 100 to 200 to 300 mg per day. With test and dose change every 2 weeks. Then, if there are no adverse events, increase to 600 ten 900 (800 in USA). Once you have no symptoms for 6 months, reduce allopurinol slowly to a maintenance dose. There is debate in the rheumatology profession if this maintenance dose should be 300 or 350 μmol/L.
I hope that we get enough data from DECT experiments to allow us to judge when all uric acid crystals have dissolved. I guess there should be an approximate formula based on how long a patient has had gout, and the level they get down to during uric acid treatment.
May 16, 2017 at 5:43 pm #3731
With regards to the first post, I am so sorry about your accident and depression resulting in you stopping Allopurinol for a period of time. I know stopping for a period of time was generally part of your overall plan but I’m sure the depression and accident wasn’t – If you feel like talking about this, please do, I’m all ears. In any case its good news to see you back up and fully recovered and ready for action. If you haven’t had any attacks during your Allopurinol vacation then this is generally a good sign that it is possible. I will be sure to investigate the option further down the line, maybe January next year which will be my first year anniversary on Allopurinol. Hopefully all crystals dissolved and uric acid well controlled. With regards to your second post, as Tawrikit (nobody) posted, those results are absolutely correct. I’ve been on 400mgs for little over 2 weeks now and I will get tested either this week or early next week. I wanted a full 3 week to pass before checking levels to get a more accurate picture. Despite the little inflammation remaining from my 8 week gout attack! and the foot pain in general also seems to have settled. I think the move from 200mgs to 300mgs to 400mgs within a reasonably short period of time alongside the regular walking caused a surge of debulking to occur which is why this attack is taking so long! Once we get the latest results we can probably assume with more accuracy why this attack lasted so long. The target maintenance level that my rheumatologist wanted me on was under
Hi Tawrikit, thanks for posting those results quicker then I could get to them :). They are spot on and as you say are all the results during the dosage increases. I also think you are right in saying I’m not getting tested regularly enough but to be honest I just want to come out of this attack first. I agree that as per your previous post in a separate thread that these results are not quite as accurate as they should be because we haven’t arrived at equal equilibrium yet. I think now that things have settled quite well, the results we see will give a clearer picture. This in turn will as you say allow us to reach that maintenance dose quicker. I visited my GP today and highlighted to her exactly what you told me about the concentration levels being higher at first and if they will drop as crystals dissolve and moving down to a lower dose later and this is in fact 100% true, as the crystals dissolve levels go up, and once they are all ‘dissolved’ so to say, UA levels should generally just drop even further. Hopefully that will get me down to taking just 300mgs a day and not the 400mgs when things settle. Thank you for that.
I’ve got all my blood forms from my GP and will get the tests done shortly.
I’ll update you both on how it goes.
May 18, 2017 at 1:28 pm #3759
Thanks d_q 🙂
With regard to allopurinol, I recall reading an editorial style article by a rheumatologist. Unfortunately, I can’t remember who he is, or which publication he wrote for. But, he made a case for taking allopurinol for a month each year. Ie, by taking high doses of allopurinol for a month, that should dissolve any crystals that have formed in the year. Because 11 months of crystal deposition should not be long enough to cause problems.
Of course, that is just theory for now. Also, I’m not convinced that it’s very superior to just popping a pill each day. But, it’s always good to have choices.
May 23, 2017 at 10:26 pm #3836
@the usual team;
Just an update to say i’ve finally managed to get that appointment with another rheumatologist but its not until mid-July. I’ll be sure to test him with all the gout knowledge generated from this invaluable site and direct him here if he’s a little clueless too.. I’ll definitely bring up the allopurinol break topic with him… Should be interesting.. 🙂
p.s. blood test next week, we should know where the 400mgs placed UA levels.
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