Forum Replies Created
-
Posts
-
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 🙂
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.
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.
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.
Oui! 🙂
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.
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 😥
@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
trafficpill wardens.* 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.
Uloric 80 mg vs 40 mg Uric Acid chart
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?
Hi Dean,
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.
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).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.
100mg Febuxostat
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.
Congratulations on the weight loss Rebecca. 🙂 I’m also a huge fan of Slimming World meals. But I don’t bother with meetings – I just raid the freezers at Iceland! [apologies to readers outside the UK. Iceland is a food haven, not a country].
Uric acid testing must always be at least once per year for anyone who ever had actual or suspected gout. Also, you should get kidney function and liver function tests at the same time. But that’s the maximum frequency during gout maintenance phase. So the maintenance phase starts when you have all three of these for at least six months:
1. Uric acid below 5 mg/dL (0.30 mmol/L). Or 6 mg/dL if your doctor advises.
2. No visible tophi.
3. No gout flare or other symptoms.Prior to that, it depends on your situation regarding treatment. So doctors will normally start with monthly tests. Then this might be extended to three months or even six months. But that is entirely dependent on individual circumstances and not something you can ever apply a fixed rule or recommendation to. Except for the overriding recommendation which is to ask your doctor.
More importantly, you have to view weight change as part of your uric acid treatment program. But even without gout, all responsible medical advisers recommend that you discuss weight loss programs with your doctor before you start. So the sooner you get blood tests, the better.
Most importantly, I’m extremely concerned about your reference to 4.8 uric acid test result. In the UK, the standard unit of measure is mmol/L for uric acid blood test results, with a safe upper limit of 0.35 mmol/L. Though some labs use μmol/L which gives a safe upper limit of 350 μmol/L. So have you converted the 4.8 to mg/dL? or misquoted it. I feel we might have discussed this earlier. But I can’t find it in your profile. Anyway, it’s important enough to repeat.
I should have added that if uricosuric combinations are not an option, I agree with:
1. Cutting febuxostat pills to get 100 mg per day. Because alternating between 80 mg and 120 mg seems like too much of “rollercoaster”. If we were talking about allopurinol, I might have a different view. But febuxostat is metabolized differently.2. Time of day, especially in relation to meals is likely to have an effect. Though studies disagree if the action of food is significant or not. But frustratingly I can’t find any real-world studies on gout patients. So it looks like ” If you’re going to have frequent blood tests anyway you could use the opportunity to run some experiments” is a good option. However, you need to be aware that experiments involving a single subject are extremely hard to get convincing results from 🙁
In response to Nobody’s:
At this stage, I wouldn’t recommend a daily colchicine dose. If you were to feel incoming gouty symptoms a few days after the dose increase though, you could go for a pill just in case (and quit colchicine once that went away).
The only gout doctor I ever trusted advised 2 weeks colchicine with each allopurinol dose increase. So because I trusted him that’s exactly what I did the first couple of times. Then I went back to “as-required”.
For me, that worked better. But I’d had many years of recognizing gouty symptoms. So I could know upon waking if a flare-up was imminent. In which case, ibuprofen almost always worked for me.
It’s not that I’ve anything against colchicine. But personally, I found ibuprofen a better choice for me. So I feel it’s very important to:
1. Understand how each different type of gout pain relief works.
2. Be aware of your gout symptoms each and every day.
3. Discuss your options with your doctor so everyone involved is “singing off the same sheet”.In terms of uric acid treatment @d-q have you discussed uricosurics with your doctor in combination with febuxostat? I can’t see anything in your history here, but the search of topic histories is as fallible as my memory. 😉
Thanks, Nobody.
I like to think that our experiences differ. So some of our conclusions and opinions might be different. But we both seem to share a passion for helping people with gout problems. So I hope that continues for a very long time.
Ultimately, if we get gout patients to talk to their doctors with greater clarity on both sides, I think we’ve achieved something good.
I’ll get back on topic in a separate reply.