July 30, 2019 at 11:22 pm #9028
Hey Everyone. I am 55 and been suffering from Gout attacks since I was in my mid 20’s. Purely genetic (so I have been told) and no particular lifestyle issue that has created this horrible malady. For years I could deal with twice a year attacks and either Colcochine or Pred. Over the past few years though the attacks were becoming more frequent.
My doctor finally got me to start Allopurinol at 300mg. For the first month he prescribed it alongside a daily Colcochine. Everything was fine and no attacks at all. I went off the Colcochine after the first month as ordered and BAM…attack. I called my Doc and he said that he doesn’t want me on Colcochine for longer than a month as there are too many issues with long term use. He then prescribed Indomethicin to take three times a day during an attack and once a day with no attack until things calm (he advised it could take a few months for Alopurinal to really work and stop triggering them). I tried to take it but it did little for me as far as pain and inflammation though – other than make me feel really loopy. Each time over the past two months since going off Coclochine I tried the Indo but gave up after a day and went on Pred which killed it right away for me.
I am just now starting on month three. I know that the Pred is not good to be using every time you get a flare up (especially twice a month since this damn cycle with Allupruino started, and even though I only use the Pred for 4-5 days and taper it down from 40mg to 10mg). I am feeling really out of options here and I wish I could just go back on Colcochine until things even out with the Allopurinol.
Any other similar experiences and/or suggestions?
July 31, 2019 at 6:41 am #9029
Yes, going back on colchicine for a little while sounds like a good idea. However…
First, it is very important that you make sure the allopurinol dose you are taking is appropriate for you and your lifestyle. The most straightforward way to do that when you are starting allopurinol is to test the amount of uric acid in your blood several times after you start the drug. It is not to late to do this if you haven’t already. You need to get blood tests to make sure your allopurinol use isn’t impairing your liver or kidney function anyway.
Second, you could try a lower colchicine dose to limit its side effects and possibly combine it with indomethacin. You could also try to use colchicine only after symptoms start (but without delay!) instead of every day.
Third, the amount of indomethacin you took may have been insufficient (a small amount would work better in combination with colchicine).
Fourth, there are lots of other drugs similar to indomethacin you could try to see if they give you more acceptable side-effects.
And finally, even with an appropriate allopurinol dose, it may well take more than “a few months” to completely cure your gout considering it sounds like you have been managing the symptoms of gout without addressing uric acid for such a long time. So it’s worth finding ways to deal with gout symptoms which do not involve a daily colchicine dose (though that could be your best option right now).
July 31, 2019 at 5:25 pm #9030
@nobody. Thanks for this thorough advice. Really appreciate it.
I talked to my Doc again today and the issue with the Colcochine is that it interacts poorly with a statin I am on for cholesterol. There have been, while rare, some reported cases of it causing rhabo and a few deaths.
Also, the reason the Indomethacin was not working as well is that I was not taking three a day during an attack, just one or two. This time I went to three and while it takes longer to gain relief in comparison to Prednisone it did work and this morning I am pain free. While it makes me feel a bit “high” I will deal with it for now so as not to get carried away with Pred.
Interestingly he also wants me to take one per day in between these Aluprurinol induced attacks as a preventative.
Really looking forward to the moment Allupurinol starts working and this ramping up cycle ends.
July 31, 2019 at 7:08 pm #9031
Allopurinol starts working on the first day. Gout is simply a slow disease… you can have it for a long time before you notice it and curing it is likewise very slow regardless of whether you do it with allopurinol or anything else.
Be sure to double-check your uric acid test results though. You can get allopurinol-induced attacks even though the dose is insufficient which would be a real shame.
I’m not a big fan of prolonged use of indomethacin-type drugs. These drugs are invaluable if you get hit by a serious attack (indeed you could probably take more than three per day if it was really severe but check with your doc first). The thing is, there are side-effects which can develop over time, some of which are deadly. People often think nothing of it since doctors hand out such drugs routinely and you can get them directly from a pharmacist without checking with a doctor first. But this class of drugs actually kills lots of people every year. They aren’t very dangerous as such but they are frequently abused.
In particular if you’re going to take one pill every day, I would recommend looking at different drugs within this class. The one my rheuma gave me when I started a drug similar to allopurinol is banned in some countries so I’m not going to recommend it but there are many alternatives which are supposed to have fewer side-effects than indomethacin. With any of these drugs, if you take it every day you want to get very regular blood tests which can detect some of the painless side-effects early.
And be sure to check your blood pressure a couple of times when you feel especially “high”.
Also see if there’s any way you could adjust your diet in order to allow you to go off this statin for a while. If that could allow you to use colchicine, this could potentially end up being a life saver.
July 31, 2019 at 10:07 pm #9032
Great advice and this arms me with things to talk with my Doctor about more.
His plan is a month more on the Indo while things settle down. Not a permanent thing and he felt it is far less dangerous than the Colcochine (given the statin interaction) or Prednisone (which comes with a laundry list of issues).
If needed I could go off the statin for a period…this is another option if I am just not happy with the Indo. My cholesterol issue though is odd. Not really a product of diet…I eat very healthy and am quite fit for my age with numerous sports and a diligent exercise routine. Again, like the gout, it just seems to be there. The statin seems to be at my age a needed addition to an already decent lifestyle…not much more I can do.
Let’s hope for an eventual shift with the Allupurinol as the cycle wears down. And yes, with a 26 year history of Gout and never taking meds for it I imagine I am dealing with a lot of history that needs to allow for time to kick in.
July 31, 2019 at 10:14 pm #9033
And one question from your experience…..with the Indo…once the pain and inflammation is gone what is your advice as to when you can stop taking it for that attack? Or in my case the three tablets a day?
Not sure if it’s like Pred and you need to keep the dose going for 4-5 days or with Indo you can stop right away when the pain and swelling subside.
Again, thanks so much, @nobody…nice to have someone who understands the complexities to tap in to their experience.
July 31, 2019 at 11:44 pm #9034
Generally, taking a large dose of anti-inflammatory drugs when the symptoms start is better than taking a smaller dose over a longer period of time. Certainly I would not recommend taking the same dose irrespective of your symptoms.
But it would depend on the type of attack. Especially if you aren’t taking colchicine and prednisone and your uric acid isn’t low enough, you can get attacks which seem to last forever. With that self-sustaining type of attack, you would need to keep taking anti-inflammatory drugs several times per day (unless you have extended-release pills in which case one pill per day might suffice). With the more typical attack type, you should be able to stop taking anti-inflammatories or at least take a lot less pretty quickly. You’ll have to experiment and get a feel for this.
I’m a bit vague about on the exact number of tablets since I don’t know how much of the stuff is in each of yours. And I assume your size would also affect how effective a given dose is.
Different people’s gouty episodes work differently anyway (and you should feel your own typical attacks slowly changing if allopurinol is working).
I’m not too worried about you taking indo for a month. My concern is that your doctor is too optimistic and that you might find you are still getting frequent attacks at the end of the month while the anti-inflammatory is slowly becoming less effective and new side-effects become apparent.
There are individual variations which are poorly understood to say the least so maybe your bad patch will be over soon but I think you should also have a plan for a less favorable outcome.
A diet might be “very healthy” for most people without being the best for your cholesterol, precisely because the way your body works is a bit odd. I can’t speak for what’s going on in your body obviously but generally, cholesterol is one of the things which react the most dramatically to non-conventional diets.
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