🕖Latest Change: Oct 5, 2023 – ⎙Published: Mar 5, 2015.
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Now 3 months in with Allopurinol – started at 100mg and progressed up to 200 and 300/day alternate days now. 1 colchicine daily for first 2 months.
Mini flare ups in right ankle still coming and going, although I’m wondering if there isn’t now some permanent damage/arthritis in this ankle – it’s one I’ve gone over on and twisted a lot ever since my 20s (now 54).
Couple of other potentially connected issues as follows.
1. I have had an annoying itchiness with small pink bumps for the last couple of months – built up to a crescendo with outbreak of most spots (max of 50 spread evenly across whole body) a week ago and actually now settling down/subsiding. I’m well aware of allopurinol rash and its potential seriousness, but I’ve had this variety of hives on and off (every couple of years or so) all of my adult life – usually occurs several months after an extended period of stress such as I had mid-late last year. The rash I’ve had also looks nothing like as bad as the images of allopurinol rash on Google images!
2. Loose bowels. Last month in particular first visit to WC first thing as soon as up – sloppy. 20 or 30 minutes later another visit – the same. And possibly another visit later but this is largely wind. And a LOT of flatulence all day! But I have upped the veggie intake and cut down the carbs as in wild rice and rye bread that I used to eat of lot of. Anyone else had this/get this with allopurinol?? Would be interesting to know.
UA meter indicates my levels currently in the high 5s so getting there but not there yet.
Any and all input/responses would/will be much appreciated.
Best regards to all,
Mike
Is pink skin rash from allopurinol? 1 I’ve had that itchiness. I put it down to uric acid crystals under my skin dissolving and causing small localized reactions. It went away after a month or so. What really matter here is for your doctor to see it when you discuss the results of your follow-up blood tests. When you take any uric acid lowering medication, you should always get blood tests between 2 weeks and one month from any dosage change. The tests are uric acid, kidney function, and liver function. Your doctor can then assess the severity of any reactions to your drugs. Also, it is a good idea to login and record these results, on your Personal Gout Profile.
2. Are loose bowels anything to do with colchicine? If yes, this should recover. If not, try taking allopurinol at different times, e.g. before a meal, with a meal, or after a meal. You probably need to maintain each option for a few days before noting effects. What does your doctor say about this?
Please do not rely on personal uric acid meter test results alone. They are a useful measure of progress, but it is important that your doctor also monitors progress with the blood tests I mentioned earlier.
Thanks for that Keith.
Just had some blood-work done – getting the results tomorrow but what I do know is my UA is down to 3.8. Currently on 300mg Allo/day now. I do now have (which I never have had before starting Allo) some constant largely unremitting low grade pain in my right ankle. It’s alike a gout attack that rumbles on in the very initial stages without ever really getting going. It can lift for a few days but soon returns and is there some 80% of the time – it’s unpleasant but I can just about walk without a limp. I’m left wondering if this is just the UA being released form tissues ‘nibbling’ at my most frequent and vulnerable historic gout location and hope that it goes altogether once the Allo eventually (6-12 months?) flushes all of the UA out of my system. Does the aforementioned compromise a viable scenario in your opinion please Keith?
Still a bit of itching but that seems to have eased a bit this last couple of weeks. Another poster to this forum Alan mentioned SJS so took a look at that just now – very scary! But can be caused by all sorts of meds – including some antibiotics, penicillin and even NSIADs so miles away for being just Allo. Also looks like affects more women than men, usually kicks off within a week of commencing whatever medication is implicated, 25-50% of case have no underlying reason, 3-6 cases per 1,000,000 people per year overall etc. etc. So I’m with you that the risk of NOT taking Allo highly likely FAR outweighs the risk of taking it if one must to keep one’s UA levels under control.
As I’m on 3.8 UA presently, would it be prudent/wise to break the 300s in half for a while and see how things go, or best to tough it out on the 300s??
Many thanks again for all of your help Keith. (Would be good to have a chat with you on the phone sometime, but I appreciate/understand that you really wouldn’t encourage that sort of thing otherwise you’d be constantly bombarded!!)
Best regards,
Mike (in tyke-land!)
I’m picking up on:
As I?m on 3.8 UA presently, would it be prudent/wise to break the 300s in half for a while and see how things go, or best to tough it out on the 300s??
If I relate that with your first paragraph, I’m perceiving a view that you’re blaming your current discomfort on allopurinol. I just don’t see it that way.
Allopurinol is good for two things – protecting you long-term, and helping you get rid of old uric acid crystal deposits. Mainly, it protects you from excess uric acid throughout your life, so you never have to worry about gout. So, you once had a life where you never worried about gout, and in time, you’ll get back to it.
In-between, there was a slice of your life, the painful gout years, where you suffered. At the moment, you are in a very thin slice of your life that I call your Debulking Period. It’s very tempting to make decisions during this period that affect the rest of your life, but let’s focus on the real issue.
Allopurinol dose affects the length of the Debulking Period. The higher the dose, the shorter the period. Never forget sufficient daily fluid intake to allow allopurinol to work without causing additional problems. But, water aside, the equation is that simple.
Now, I believe that reactions to dissolving crystals, once you get uric acid below 6, are random. On a risk basis, the lower you get uric acid, the less risk you have of triggering your immune response. That does not mean that you won’t get gout flares, just that you are less likely. On the other hand, there is also a slight increase in a different risk from lowering uric acid. I’m thinking of the case where some deep-seated crystals might dissolve slowly at 4mg/dL, but 3mg/dL might just release a large deposit of crystals that don’t dissolve completely before your immune system spots them. My point is, that this is not something you can control. During the Debulking Period, you would have different gout flare profiles at 3, 4, or 5. It’s impossible to say which profile would produce the worst pain. It’s also impossible to say if your low-grade pain will get any less if you reduce your dose. It might happen, but you’d have to keep repeating your dose changes over 2-week cycles to be certain.
The only thing that you can be certain of is that lower uric acid = shorter risk period. That’s why I concluded that, for me, the best way was to aim for minimum uric acid, minimum Debulking Period, and deal with the pain as it happened. That suited me, but it might not suit everyone.
I don’t believe in adjusting allopurinol dose to try and change your gout pain experience. You cannot use allopurinol against specific gout flares, but you can use it to change the length of time you are exposed to them.
I hope that makes sense, Mike. I’m looking at things from a different perspective, and I know it’s not me who is suffering the pain. Get back to me if I need to clarify anything I’ve written.
On the phone thing, it is definitely something I’ve considered, but I can’t see how it would work in practice. More useful, might be a Google Hangout where anyone can join in from around the world. My only issue with that is complete lack of experience, but hey – how hard can it be?
Many thanks for that Keith. Yes you got the gist of what I was trying to say and yes I understand and largely concur with your response – albeit with the caveat that we are all unique experiments of one!
Over the last 15 years I’ve had by far the most gout attacks in my right ankle. It’s also the ankle which I seem to have occasionally gone over on/twisted a lot all of my adult life with it likely having become weak/vulnerable as a result. As such, I’ve not unreasonably contemplated that it might be osteoarthritis that is in it now, but my GP and I doubt this as a) I have no signs of any arthritis anywhere in smaller bones (like fingers) and have never had any signs on X-rays taken during the last 10 years on ankles, knees or shoulders, and b) the pain in my ankle switches on and off like a light bulb – no pain at all for a few days/weeks and then just suddenly appears and lasts for weeks and then suddenly disappears. Often no accompanying rise in temperature to the touch or swelling – sometimes a bit of both. Also not associated with cold weather or any such. And it has been far more pronounced since I started the Allo – hence my admittedly not-all-that-convincing hypothesis as per my last post.
Anyway, I’ll stick to the 300s and tough it out!
Cheers Keith,
Mike
Hey, Mike.
I think your hypothesis is sound. I didn’t mean to disregard it, but I wanted to focus on what I felt was the best action, rather than the underlying cause.
Your description is typical gout:
the pain in my ankle switches on and off like a light bulb ? no pain at all for a few days/weeks and then just suddenly appears and lasts for weeks and then suddenly disappears
That doesn’t mean it can’t be something else, but gout is our prime suspect. That’s why I suggest max dose allopurinol during debulking, as it eliminates gout as a suspect quicker than lower doses. So, why is gout the prime suspect?
Your on-off pain is gout-typical, and one of the factors in the gout calculator.
I do now have (which I never have had before starting Allo) some constant largely unremitting low grade pain in my right ankle. It?s like a gout attack that rumbles on in the very initial stages without ever really getting going. It can lift for a few days but soon returns and is there some 80% of the time ? it?s unpleasant but I can just about walk without a limp. I?m left wondering if this is just the UA being released from tissues ?nibbling? at my most frequent and vulnerable historic gout location and hope that it goes altogether once the Allo eventually (6-12 months?) flushes all of the UA out of my system.
That is a fine description of gout-typical pain during uric acid lowering. It doesn’t matter if it’s allopurinol, a different uric acid lowering drug, a herbal medicine, or lifestyle changes. Anything that lowers uric acid below the crystallization point will produce these symptoms. Here’s how.
First, crystallization point. At normal blood temperature, uric acid crystallizes at 6.8mg/dL, but temperature and other factors mean this is a range. For convenience, let’s say this is 6 to 7. The point to remember is that 6 should be below crystallization point in most cases, and 5 removes most of the risk. In prolonged low temperatures, I think I recall 4 point something in one medical journal. Crystals forming at 3.8 would be making more medical history.
When crystals form, they do so very slowly. Most of the time, our immune system deals with them quietly. White blood cells engulf uric acid crystals, as they would with bacteria, virus cells, or other invading foreign bodies. Inanimate uric acid crystals can’t be killed, but they are hidden from further action by their immune system sheath. If the numbers get too big, for whatever reason, then you get a gout flare, as our immune system calls for reinforcements. The pain process is quite complex, but the trigger is always the same – too many uncoated uric acid crystals in one place.
As an organic compound, uric acid (or mono-sodium urate), follows laws of equilibrium. As concentration rises, crystals form. As concentration falls below the variable crystallization point, crystals dissolve. As they dissolve, two things happen:
- Immune system coating is shed
- Dissolved uric acid, i.e. the thing we measure in a blood test, rises slightly
If the crystal dissolves completely before being ‘spotted’ by the immune system, all is well. If it doesn’t, and localized numbers are high enough, then a gout flare is triggered. At the same time, that slight rise in uric acid level, might be enough to push concentration over the crystallization point. If you imagine this in places that have been subject to years of slow uric acid crystal deposition, you can see how low-grade pain from dissolving crystals happens. As far as I know, there’s no medical term for this – until now! It’s called nibbling.
Mike, you are inspirational!
Expect an article on Nibbling Gout Pain very soon.
Thank you for this thread. I have been experiencing this “nibbling” for awhile and now understand it as a benchmark of Allopurinol actually working. I am now on a 300 mg daily dose since the last week of January. This nibbling in my right big toe has been a daily occurrence though it’s more intermittent than steady all day. This was very discouraging. I was worried that my gout was growing intractable but, because of this thread, I see it’s part of the process of dissolving crystals. As background, my first flair up was 8 years ago; I was 56 at the time. It was dormant until I had four flair ups since last summer, one of which was induced by increasing from 200 mg to 300 mg of Allopurinol and stopping the concomitant Colchicine (at Drs’ recommendation.) I went back on when I recognized what was going on and gradually tapered off (I now use Colchicine to stop incipient flare ups which for me are indicated by a steady nibbling for hours.) I’m now eating a mostly vegetarian diet with meat at no more than 4 to 6 grams per day when eaten. I stopped alcohol except for a glass or two of red wine. So thanks for this and I look forward to Keith’s article on Nibbling.
You can continue this gout discussion in the Gout Forum.