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Welcome back, Dave
First, a question. Because I notice on both your posts that you describe uric acid test results from a home meter. So I’m wondering if you’ve had any blood tests run by your doctor?
If so, it would be useful to compare lab test results with your home uric acid meter. Because I’ve seen significant differences in the past. But also some good correlations. Especially when gout sufferers have adopted a meticulous unvarying test routine.
As for PVNS, I’ve seen many cases where suspected synovitis has eventually been diagnosed as gouty tophi. Also, I’m reviewing cases to see if there are examples of the opposite situation. However, the general view is that gout symptoms often mimic other rheumatic diseases. So it’s important to consult an experienced rheumatologist. Because such gout specialists can test joint tissue to get a better diagnosis. Then that leads to the best treatment.
OK, as many visitors are interested in this topic, I’ll give my thoughts about the general considerations of diarrhea with allopurinol or colchicine. But never forget the overriding advice relating to this type of problem. Because with any medication, you must read the label and you must consult your doctor or pharmacist if you are worried by any unexpected effects of your medicine.
The first set of considerations are not specific to these gout medicines. Because there are common difficulties with nocebo effects that are not specifically gout-related.
Next, we should consider the specific gout medicines: allopurinol and colchicine.
Firstly, colchicine has a long history of association with diarrhea. But modern colchicine dosing recommendations should eliminate the worst of this. So for anyone who wants more help with colchicine and diarrhea, you really must describe your exact daily dose and when you take it.
Secondly, diarrhea is mentioned as a known minor side-effect of allopurinol. But this has been mentioned many times before in the forums. So I recommend you use the “Google Gout” search box near the top of every GoutPal page. Then you can see if the experiences of how other allopurinol patients have coped relate to your situation.
Finally, I remind you of my earlier comments about getting professional help. Because there are lots of ways to resolve problems of taking uric acid and gout medicines. But if you don’t take active steps to make sure you are taking your gout meds the right way, you might seriously delay your gout recovery.
Hi Danny ( @fxdc-fxdc )
Thanks for your post.
I split it from the GoutPal Testimonials topic because I think you’ll get better responses as a separate topic.
You don’t say much about your history, test results, or current meds dosage. Also, it’s not clear to me exactly what symptoms are causing you concern. But I’ll have a think about it and come back later with some general facts about managing gout medications.
Did you ask your doc about your concerns? If so, what was the response?
I’ve published the first installment at Help The Doctor Fix Your Gout.
It’s an overview of the whole process and I will start work on the details for each of the 3 themes.
The current version of the Interactive map is here. It’s simple at the moment, but I intend to grow it as I publish more articles in the series.
I’ve just published the details of the first theme referred to as “Processes” in the map above. So, I’d love to know your opinions about How do Patient Reactions affect Gout Management?
But please note that I don’t intend to change this public mind map until I complete the series. However, if active members want to see interim versions, you only have to ask 🙂
To get back to your uric acid test results fluctuations @d-q
I can understand your “need to know reasons”. In fact, it’s one of the cornerstones of an article I’m researching about doctor-patient relationships in gout management.
But I’m sorry that I can’t really add to the points already discussed. Except to think that the most likely explanation is that clusters of uric acid crystals dissolve haphazardly. So no uric acid blood test can accurately measure the debulking process. Ironically, they only become “accurate” in this context once the debulking phase has ended. So without DECT, there’s no way of knowing.
Sorry, I can’t give comfort. But the best analyst of individual results has to be the doctor who ordered the test. I trust you voiced your concerns about your results. So what response did you get?
I think doctor’s answers are very important in gout management. Because when I was at a similar stage to you, I was extremely frustrated that I knew more about uric acid test results than 3/4 doctors I consulted. Happily, the last one gave me all the help and support I needed. I still remember how I felt as if I was walking on air when I strolled home after that consultation.
Our medical situations are different @d-q. But the strength of good doctor support is something that helps all gout sufferers.
@d-q I spent some time a few days ago looking at pill-splitting. Then, I refrained from posting. Because I found that the bewildering range of opinions and practices was likely to cause more confusion. So welcome to my club for the bewildered.
To clarify some points:
– 40 mg Uloric is manufactured and sold in the USA with FDA approval. It’s also available in its home country of Japan alongside a 20mg dose. But the UK NHS approach is that 80 and 120 are acceptable doses.
– Doctors have always had the power to prescribe “off-label”. But that raises the question of how to supply it. In earlier discussions (regarding Colcry$) it has been suggested that compounding pharmacists could fill any off-label prescription to get round manufacturers “monopolitic rent”. At the time, I thought such pharmacies were USA-only. But I just found http://www.bcm-specials.co.uk/ as a UK example. Though I haven’t found if there is a UK compounding pharmacist who will create lower-dose pills.
– I also found a European study comparing 40 mg and 80 mg febuxostat. But they had to split 80 mg pills to get the 40 mg dose. They include the disclaimer in the report. Which is similar to my disclaimer below. So after considering all the data related to splitting or not, you should discuss this with your doctor.*
– During my research I stumbled across professional pharmacy forums which confirmed that pill-splitting is very much a pharmacists personal choice.
– Nobody hit the nail on the head about the coatings. If there was an enteric element, it would have to be listed in the ingredients.
In essence, there is no right or wrong answer to this. So if you always cross at the crossing, do not split pills. But if you save yourself the longer walk because you understand how traffic works, get a decent quality splitter and ignore the
* Flendrie, M., B. van den Bemt, V. Huiskes, M. Hoefnagels, and F. van den Hoogen. “AB1034 The urate-lowering effect of febuxostat 80 mg and 40 mg (80 MG FILM-COATED TABLETS SPLIT IN HALF) in gout patients in daily clinical practice.” (2018): 1633-1633.
More on compounding pharmacies in the UK.
Though they can create just about anything, it raises the question: Who will pay for it?
Now, this is governed within the NHS by the Drug Tariff Specials. Which means your doctor can prescribe any dose for drugs on that list, and the NHS will pay for it. For anything else, you will pay.
So now, I have to upset you @d-q. Because liquid allopurinol is on the list. Which is great for micro-titrating to build tolerance in cases of bad side-effects. But no mention of this new-fangled febuxostat stuff 😥
There has been another gout-related investigation of Singulair. This time with rats. So still no human trials.
Ibrahim, Mohamed A., Entesar F. Amin, Salwa A. Ibrahim, Walaa Y. Abdelzaher, and Aly M. Abdelrahman. “Montelukast and irbesartan ameliorate metabolic and hepatic disorders in fructose-induced metabolic syndrome in rats.” European journal of pharmacology 724 (2014): 204-210.
Serum levels of uric acid and TNF-α were increased significantly in MetS group compared with normal control. Rats treated with montelukast (10 and 20 mg/kg/day) and irbesartan (30 and 45 mg/kg/day), and a combination of montelukast 5 mg/kg/day plus irbesartan 15 mg/kg/day showed significant decrease in serum levels of uric acid and TNF-α
Any gout sufferers out there with asthma?
I know how depressing it can be when you are in this situation. But, you seem to have a good grasp of the medical issues that you face. Also, your uric acid is at a good level for getting rid of old crystals.
You will not be the first person on this forum to have to train their doctor. So I recommend sticking with that if you can’t easily switch. Personally, I had this quite easy. Because I was a patient in a large group practice with online appointment booking. So I just went to different doctors until I found one that listened and understood. Incidentally, that is the background to my claim that only 20% of family doctors understand gout.
Depending on what measurements are taken, that figure is supported (more or less) by many studies from around the world. Importantly, studies of rheumatologists performance with gout are not perfect. I’m not saying this to worry you. Instead, I want you to realize that taking the lead with your doctor is often the best way to get successful treatment. You tell your tailor how you want your suit cut. You tell your chef how you want your steak cooked. So tell your doctor what you expect your uric acid numbers to be.
Hopefully, someone with more local knowledge can suggest a practitioner who can give you a better level of support. In the meantime, discuss your hopes and fears here. Then you will see that the way forward gets easier each week. Trust me, it’s better than suffering alone.
October 22, 2018 at 1:10 pm in reply to: Diclofenac, allopurinol and colchicine safe to take together? #8363
Good to hear the pain has subsided Rebecca 🙂
I agree it is confusing to know how to class colchicine. Because it isn’t an anti-inflammatory in the way we normally think. That is, it blocks (or slows) inflammation spreading. But it doesn’t do anything to reduce existing inflammation.
So, we can wait for pain to subside naturally. Or, take something like diclofenac which reduces inflammation.
I’ve only been to the States once. But one of the joys for me was how the small differences make such an impact in everyday life. My favorite examples were from my traveling companion who refused to accept that he should adapt his ways. So he couldn’t understand the blank looks when asking for the restroom by asking “where is the toilet?” But the best bit was in a store when he couldn’t work out the ground floor!
I guess things like that are less funny when you are limping around with gout pain. So gouty travelers should always be prepared with sufficient meds of the right kinds. That is:
1) Enough allopurinol, Uloric, or other uric acid treatment to last for the planned duration plus contingency for delays and losses.
2) The right combination (as advised by doctor/pharmacist) of inflammation blocking (colchicine), inflammation reducing (ibuprofen, diclofenac, naproxen or other NSAIDs), and residual pain blocking (paracetamol/acetaminophen).
I think you might approach your pharmacist with the 100 mg febuxostat problem. Because some offer pill-splitting as a routine service. But it’s not something I have personal experience with. If your pharmacist does offer this, I suggest halving 80 mg and 120 mg tablets. Then half of each = 100 mg (my days of watching Rachel Riley have not been totally misspent 😀 )
Febuxostat time of day
If you were a mouse, I’d say 2 hours after your keeper turns on the light is the best time of day to take febuxostat. Because that worked well in:
Kanemitsu, Takumi, Yuya Tsurudome, Naoki Kusunose, Masayuki Oda, Naoya Matsunaga, Satoru Koyanagi, and Shigehiro Ohdo. “Periodic variation in bile acids controls circadian changes in uric acid via regulation of xanthine oxidase by the orphan nuclear receptor PPARα.” Journal of Biological Chemistry (2017): jbc-M117.
we also demonstrated that the antihyperuricemic effect of the XOD inhibitor febuxostat was enhanced by administering it at the time of day before hepatic XOD activity increased. These results suggest an underlying mechanism for the circadian alterations in uric acid production and also underscore the importance of selecting an appropriate time of day for administering XOD inhibitors. […] the excess production of uric acid induces hyperuricemia and gout in humans. XOD inhibitors are often administered to these patients after meals during the daytime. Febuxostat has an apparent elimination half-life of approximately 5 to 8 hours (46); therefore, this drug is generally taken once a day, mainly in the morning. In hyperuricemia model mice, the anti-hyperuricemic effect of febuxostat was enhanced by its administration in the early light phase (ZT2), during which nocturnally active mice begin to fall asleep.
I’m finding it hard to interpret that in human terms. But if it does translate then the right time for humans is before going to sleep. Also that ties in with other claims I’ve read that uric acid rises through the night in humans. Sorry it’s not exact, but that’s the best I can suggest for now.
Firstly Jason ( @jason-ayers ), I’ve merged your topic about Quorn here as the subject doesn’t generate enough interest to warrant 2 topics. However, if you want to ask about personal help planning a low-purine diet, then start another topic. But please see my comments below.
Secondly, I agree with Nobody’s reply to Jason’s post. I believe Jason should acknowledge it.
Thirdly, I want to share some science about Quorn (mycoproteins) and Purines.
Quorn and Purines
As far as I can see, the only study that directly addresses this issue is:
Havlik, Jaroslav, Vladimir Plachy, Javier Fernandez, and Vojtech Rada. “Dietary purines in vegetarian meat analogues.” Journal of the Science of Food and Agriculture 90, no. 14 (2010): 2352-2357.
Protein‐rich vegetable‐based meat substitutes might be generally accepted as meat alternatives for individuals on special diets. The type of protein used to manufacture these products determines the total content of purines, which is relatively higher in the case of mycoprotein or soybean protein. While appearing lower in wheat protein and egg white‐based products. These are therefore more suitable for dietary considerations in a low‐purine diet for hyperuricaemic subjects.
However, there is a 2016 study which references that 2010 study:
Lockyer, S., and S. Stanner. “Diet and gout–what is the role of purines?.” Nutrition Bulletin 41, no. 2 (2016): 155-166.
That refers to different types of purine bases discussed in the 2010 study (more later). Then it summarizes some earlier relevant work:
Finally, 100 subjects consumed 20 g dry weight mycoprotein in cookies, an amount comparable to an average retail portion of Quorn<sup>TM</sup> products, or control cookies for 30 days, separated by a one-week washout period (Udall et al. 1984). There was no significant change in Serum Uric Acid (SUA). A smaller study reported in the same paper (n = 13) also stated that SUA remained within the normal range after consumption of mycoprotein for 16 days.
Now, the more I study purines, the more I realize that they are only an indicator of what might happen to uric acid levels in your body. Because different types of purines have different effects on uric acid. Also, people process purines in food differently. So foods that raise or lower uric acid in one person might have no effect or the opposite effect in another person.
More importantly, most gout sufferers do not manage their diet in a way that allows them to monitor the effect on uric acid. In fact, of all the thousands of gout sufferers I have corresponded with over the years, only a handful have ever tried to correlate diet changes with uric acid changes. Fundamentally, if you are not prepared to monitor those changes, then you are much safer if you discuss allopurinol or it’s alternatives with your doctor. Because that makes all foods low purine. Allowing you to focus on eating healthily.
Which brings me to my final point on Quorn and purines. In my opinion, Quorn is not a healthy source of protein. Instead, I recommend you plan your gout diet around healthy whole foods. With my mantra being EFSEP:
Eat Food (avoiding processed food-like substances).
Sufficient (avoiding being overweight).
Especially Plants (avoiding excessive animal consumption which is linked to gout and many other diseases).
Probably best to start a separate topic on Alkaline Water. But the main points are:
1. Don’t paper over the cracks of a bad diet by supplementing with chemicals.
2. The pH of what goes in is irrelevant (except for certain types of reflux disease). It’s the pH of what comes out that matters.
It’s tawrikt. Or Tauriqt. The spelling is irrelevant. You’re not supposed to write it on stuff anyway. On the contrary, free men write on it.
But this man struggles to hold pen to paper after decades of keyboard use. So maybe I’m not as free as I thought I was.
October 22, 2018 at 12:54 pm in reply to: Diclofenac, allopurinol and colchicine safe to take together? #8362
Nobody doesn’t know but agrees it’s not a problem.
😀 😀 I’ve been waiting for that! 🙂
My last test was done earlier in the year I do have to remind my doctor as I don’t find that he automatically notifies me. He’s really good though and are usually just email the surgery for his attention and ask to be sent for blood tests which he happily does.
That’s a great attitude to blood tests. Because gout patients have to take responsibility for their regular uric acid tests. That way, you feel more in control.
More importantly, mistakes can happen in even the best run medical practice. So occasionally reminders can go missing.
I hope every gout sufferer reading this will follow Rebecca’s lead. Make sure you get uric acid tested at least once a year. But more frequently if you’re changing uric acid treatment – and that includes lifestyle changes.
Then when you do get your blood tests, start a topic to discuss your results. So we can celebrate together, or find ways to get better results.