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Keith TaylorParticipant
22 pounds weight loss in 30 days?
Keith TaylorParticipantExciting!
I’m looking forward to some inspirational gout recovery stories. ๐
Keith TaylorParticipantI don’t think any doctor has the time to give all relevant information. It would take a long time to prepare different levels of information to suit each individual patient. So, I’ve taken that on as my job. Speaking of which, the rheumatologist’s advice on self test uric acid kits should be: “That’s my job”.
But, we’re moving away from sleep apnea. So, better to start a new topic, if you want to discuss rheumatologist advice.
I never asked, James. Have you been diagnosed with sleep apnea? Or, is it general, undiagnosed sleep issues.
Has anyone else got any thoughts on sleep apnea and gout?
Keith TaylorParticipantThanks J Q, especially for:
I can tell you are very knowledgeable and appreciate your insight.
I have gathered a lot of facts during the war on my gout. So, now I’m trying to organize that knowledge better. And, make it more accessible to other gout patients. As for insight, I’m not sure, though I accept your compliment. Most of all, I’m thorough, and logical. My accounts and IT background taught me that. So, I asked my questions to get some essential detail. If the detail is wrong, the bigger picture is meaningless. Fundamentally, I guess, that’s why there’s so much crap written about gout.
Allopurinol Brand
Your clarification of the manufacturer name confirms they are a valid, respectable manufacturer of generic allopurinol. I think the brand switch is just coincidence.Uric Acid Control
Your recent attack might be because your uric acid is still too high, and new crystals are forming. Or, it might be because your uric acid is OK, and old crystals are dissolving. Both situations cause gout flares. But, without uric acid test results, we cannot know.I strongly recommend you get your doc to give you all the uric acid test result history he has. Then post it here. With that information, I can give you better insight into your gout. And, how to manage it better.
Gout Pain Treatment
Speaking of management, you’re not managing your gout pain very effectively. The usual gout strength dose for intense gout pain, under medical supervision, is 800 mg, 4 times per day. And, in extreme cases, that would be interspersed with max dose paracetamol. I can testify that, at least for me, that dose is effective enough to get mobile, and mostly pain-free. It’s important to manage gout pain effectively during the first few months of uric acid lowering.I hope you don’t think I’m too flippant when I say: 1000mg ibuprofen is more of a tickle, than a gout pain treatment.
Keith TaylorParticipantPlease can you post your uric acid test results, J Q? It’s best to post date, number and scale. Though, I can probably assume your results are mg/dL, as you sound to be in The States.
Also, can you post your ibuprofen dose.
Finally, can you post the manufacturer information from the allopurinol label. I can’t find anything gout-related for the Ingenius name that you mention.
Keith TaylorParticipantI’m not sure what you mean in your second paragraph, James.
With respect to sleep apnea, I believe it has different causes. Therefore, likely different solutions for different sufferers. I knew a man who required some sort of machine to help with overnight breathing. Burton has suggested that sleeping on ones back is a significant cause of sleep apnea. And, that proved to be the case for me.
Burton suggested sewing small plastic balls into his pyjama jacket to encourage himself to avoid sleeping on his back. As my “pyjama jacket” is my skin, I avoided that. But, I found that I could train myself to sleep on my side. In my case, sleep apnea had little to do with my gout. I guess it might have raised uric acid levels that were already too high. I’ll never know.
Also in my case, I never realized I had a problem until my daughter shrieked that I had stopped breathing when falling asleep watching TV.
On the whole, I think it’s something that is important to be aware of. That technical article explains the low level inflammation that is associated with sleep apnea. That’s not good for cardiovascular health. And, it might have a significant impact on gout.
Keith TaylorParticipantI don’t think you need a rheumatologist for gout, unless there are treatment complications. The key thing is to make sure you keep returning to your GP for allopurinol dose assessment until your uric acid is safe. Never settle for anything over 300 μmol/L. But, accept that it will take several months to get rid of old uric acid crystals.
So, as Patrick advised, you must be prescribed gout pain control. It’s up to you whether that is preventative or as required. You mentioned earlier, you took naproxen. Did that work out OK for you?
Keith TaylorParticipantYes, Burton Abrams work on sleep apnea and gout is interesting. He has contributed to the gout forum in the past.
It’s an area that would probably benefit from greater recognition during gout diagnosis. There is some relevant information if you use the GoutPal search box at the top of the page, for sleep apnea. I can’t find any other recent research into sleep apnea and gout. But, there is an interesting 2003 study that includes summaries of sleep apnea and uric acid research (Obstructive sleep apnoea syndrome: an oxidative stress disorder). Warning: it’s very technical.
Keith TaylorParticipantOK, Mauri. I got the impression that your joint pain was bothering you more than it actually is. It sounds like you are doing everything right.
I hope you have the “where did my gout go” experience. It happened to me a few months after starting allopurinol. I remember thinking one day: “I can’t remember the last time I had an attack”. So hopefully, you’ll experience that within the next few months. I hate putting actual estimates on how many months it takes. The main point is, as weeks pass, you notice that attacks become less frequent, and less intense.
Keith TaylorParticipantFirst, imagine I copied and pasted everything Salad Guy said. (that’s your official name now, Patrick ๐ ).
James, I love your opening sentences about taking control of your uric acid lowering treatment. I find it very empowering to discuss treatment with doctors, rather than simply accepting what they say. Of course, the real value comes when you realize you contributed to your own gout recovery. That will not be long.
I’m also amazed by the medical attitude to icing. They will say, if icing brings relief (which it often does), then that justifies using it. But, there is
growing evidencemy jaded experience to suggest that some doctors turn their brains off after qualifying. But, I should stop being so negative. What’s most important is personal informed choice.Keith TaylorParticipantYes, it is possible. And, expected.
No, you’re not crazy.
If you truly want to understand why, it’s all about uric acid levels. And, what happens during recovery from 20 years of avoiding uric acid control. So, post your uric acid test result numbers, if you want a complete explanation.Also, it’s avoidable, if you:
1. Take your prophylactic colchicine at night.
2. Take time in the morning to think about your body. If you have any gout pain symptoms, take a second colchicine plus anti-inflammatory.
3. After 2 hours, if you still have symptoms, take a pain-blocker.
4. After another 2 hours, if you still have symptoms, take another anti-inflammatory dose.
5. Repeat 3 and 4 as necessary until you reach the maximum dose.Notes:
A) 2 hours is a guide. 3 hours might work better for some people.
B) Anti-inflammatory should be at maximum dose, as prescribed by your doctor. Ibuprofen, naproxen, and indomethacin are the common options. But many others are available.
C) Acetaminophen (Paracetamol) is the popular pain-blocker choice. Again, your doctor should prescribe one that is compatible with other meds, and at a dose that is effective for gout.The best part, Mauri, is this will soon stop. Once the burden of years of uric acid crystals has dissolved, you’ll be gout-free. Isn’t that something wonderful to look forward to?
Keith TaylorParticipantGreat thoughts, Patrick. But how do you become a salad guy in the States?
Maybe it’s better on the West Coast. But, down South, the nearest thing to salad is ketchup on your fries! ๐ฎ
Keith TaylorParticipantI’m also glad you found it ๐
Whatever you do, it makes sense to start uric acid lowering treatment as soon as you can. That will start the tophi-shrinking process.
Keith TaylorParticipant6.9 is too high. So, if the rash does prove to be allopurinol, you need to try Uloric. Best way to tell is to restart allopurinol when the rash finally clears.
I think the most natural way of lowering uric acid is getting rid of blood.
Search blood donation in the search box at the top of the page.
I haven’t met anyone yet who has used this method to control gout. But, the theory seems logical to me.
Keith TaylorParticipantIt’s a learning curve, Johnson. Annoying sometimes, but it gets easier as you learn.
Thanks for sharing your experiences. I’m sure this helps other readers who are going through similar situations with new uric acid test kits.
Keith TaylorParticipantHi James,
I fear I may have infected you with my tendency to overthink simple situations by analyzing what-if scenarios before they’ve happened.
I appreciate your concerns regarding cell breakdown from thalassemia. But, allopurinol has proved to be effective for uric acid reduction whatever the cause. Therefore, I think we should wait for blood test results.
Speaking of which, I have a standard view of the time between starting, or changing, allopurinol dose and retesting. 2 weeks is the minimum time to allow uric acid to stabilize. In my opinion, it’s best to go for 2 week intervals to get to the right allopurinol dose quickest. 4 weeks is common. Anything longer than 6 weeks indicates lack of effort.
Then, we move to interpreting the uric acid blood test results. I’m sorry for any confusion. But, 400 μmol/L is not a magic number. It’s the announcer, or magicians assistant, letting you know that magic is on it’s way.
In the lab, scientists have shown that uric acid crystals form at standard human body temperature when uric acid is 400 μmol/L. But, real life human uric acid tests are just a snapshot of an ever-changing environment. Take a test 4 hours later, and you’ll get a different result. When we account for the fact that joint temperatures are lower, the long term target is 300. That way, we can be sure uric acid is safe. Unless, exposure to prolonged low temperature is contributing to gout. In such cases, we can see that gout can occur at 268 μmol/L (4.5 mg/dL), if joint temperature is 30 centigrade (86 fahrenheit).
More importantly, during early uric acid lowering therapy, we get tremendous benefit from getting uric acid as low as possible. So, for me, the magic number would be your uric acid blood test result when you were on maximum allopurinol dose. Obviously (I hope), increased allopurinol doses should be monitored by blood tests every 2-4 weeks. Tests must be for kidney function and liver function, as well as uric acid.
Unfortunately, that type of maximum treatment can be difficult to sell to doctors. It depends on individual circumstances. But, at 300 μmol/L most gout sufferers will be safe.
Keith TaylorParticipantI’ve followed Krystexxa from its early development as PEG-uricase. Medically, it’s now called pegloticase, and Krystexxa is a brand name for it. You can search for Krystexxa, pegloticase, or PEG-uricase in the search box at the top of every GoutPal page. There’s some fascinating information including a picture showing how pegloticase clears gouty tophi in weeks. Krystexxa has been extensively trialed. So, it’s better to call it “cutting edge” rather than experimental.
I’ve merged this topic with the Krystexxa discussion that Patrick refers.
Most animals don’t have uric acid in their blood. Because, they produce an enzyme, called uricase, that breaks down uric acid soon after it is produced. Early attempts to treat gout patients with uricase failed, as our bodies rejected the foreign enzyme. Scientists took uricase from pigs, and genetically engineered it to try and avoid the human rejection problem. They now grow the culture as a fungus, to provide pegloticase. Rejection problems have not yet been totally overcome. So, some patients cannot tolerate the treatment. And, for all patients, it’s a one-off treatment. That’s because our immune system produces antibodies during the course of treatment. Eventually, these antibodies make the treatment ineffective. But, once all your uric acid burden has been dissolved, it will be several years before crystals grow again. Often, this can be controlled with tolerable doses of other uric acid lowering drugs.
Krystexxa is a lifesaver for patients who cannot tolerate other forms of uric acid lowering treatment. But, it’s usually a last resort, where allopurinol or febuxostat (Uloric) have failed. Perhaps your doctor sees some immediate dangers from your tophi, Kevin. Dissolving them quickly might be vital to your health. I don’t know enough about your medical history to understand the urgency. An alternative is maximum dose allopurinol.
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