August 24, 2021 at 1:51 am #10506
To nobody and all bodies!
I am a “veteran” gout sufferer with over 20 years history.
My First extreme (pain intensity (10)) flair on right toe 20 years ago at age 50. It lasted about 2 weeks. occurred classically in the middle of the night.
It was treated by pain killers it was a singular event and I neglected it
I had no issues for 15 or so years all dough my Uric acid was around 9 all this years I developed some mid intensity of pain( level 2-3)at the sole of the right foot undiagnosed byte X-ray . Then on New years eve 2019 flair up on left toe high intensity Pain (7) lasted 4-5 days after colchicine / indometacine treatment. With continuing chronic discomfort on/off. I must mention that I had something that looked like bonion on that left toe for priory for 5-6 years with no real pain.
I must shorten my story and get to the wackiness issue.
I received my first moderna vaccine end of JanuRy 2021 and in 2 days felt a discomfort in my right sole in the area of cuboid bone .
The x ray shoved nothing and the discomfort fluctuated back and forth.
After 2-3 days of second vaccine the foot become painfull and turned swollen my doctor sent me to duel intencity ctscan that’s shoved scattered linier deposites of uric acid crystals up to 3 mm at different areas sole of the right foot and left foot with rather large tophie at the left toe and some bone deformation.
Interesting my original long time right toe flair has no signes of gout
I quit my alcohol and red meat etc and started on 300! Mg Allopurinol 5 month ago my UA fell fo 5.4 2 mo ago and than to 4.5 Recently wile I head a pretty big flair in a different place on my left foot.
Sorry for long post. Iwonder if any body has a similar experience.
I would like a reply from “nobody” who in my view has knowledge in gaut issues better then nobody’s else I know.
Sorry for spelling and syntax English is not my first tong
August 24, 2021 at 6:47 am #10507
As far as Moderna is concderned, I would have been surprised to get gouty side-effects from it since I assume my uric acid problem is sorted out (certainly I wasn’t experiencing recognizable gout-like symptoms in the months leading up to the shots) but I’m not surprised to hear that it seems to have been a gout trigger for you since anything that irritates the immune system could trigger gout. These mRNA vaccines are such a novelty that they might well have significant yet unknown effects on conditions such as gout.
I wasn’t lucky enough to get a DECT but am not surprised by the results of yours considering the history of symptoms and uric acid test results you described.
It looks like you’re doing the right thing and getting your uric acid under control. Because your gout was untreated for so long, you could perhaps discuss taking slightly more allopurinol with your doctors if they think your body is tolerating it well. That shouldn’t be necessary and isn’t risk-free but could speed up your treatment and therefore reduce the risk of serious side effects from the drugs such as indometacin you take to deal with symptoms. In any case, you’ll need to be patient because all these deposits (and there may be more that the DECT didn’t detect) will probably take a long time to be completely eliminated.
So the one thing you could perhaps work on at this stage is taking better care of your symptoms (prevention as well as treatment) while they are still serious. But since you’ve had much experience with them by this point, perhaps you don’t need any more advice. It would be the same advice I would give to most gout sufferers anyway and so is available in many other forum threads and explained more thoroughly in many of this website’s pages (outside of the forum).
August 28, 2021 at 7:17 am #10508
Unfortunately my original message posted prematurely before I corrected the misspelling and therefore even the header of my post is absolutely unclear of the fact that I am talking about.
My whole idea was to bring attention to the readers to see if other people experienced similar reaction to cOvid vaccine.
Id like to ask for a favour please correct the spelling at least the header (sorry I could not figure out how to edit my text myself)
I would like to login with a username rather than my real Name and did not see how.
Now a “interesting report” Monday I want shopping to Costco grabbed a rack of pork ribs and desided to test my low 4.5 UA Was a BAD IDEA my left toe the one with tophi presented me a “firework” on Tuesday . It is pretty bad in sense of size in colour of the Bump.
Surprisingly the inflammation and pain rose sharply when I applied ice pack
Normally pain releaves when I apply cold
It is Friday and I still sitting with a big red bump An my let toe
Pain is mild luckily
Please help to reregister and correct the spelling
Have a nice painless weekend all
August 28, 2021 at 7:57 am #10509
I understood your intent with regard to the mRNA vaccines.
But, as with your pork ribs test, testing at 4.5 during treatment implies a very different risk profile than testing at 4.5 after treatment. Most people taking a drug like allopurinol and testing at 4.5 would have completed the treatment and could probably eat a few pork ribs or get vaccinated without issues.
On the other hand people such as yourself who evidently still have plenty of UA in solid form around their joints are still very much at risk. Indeed the amount of UA in your blood could quickly rise to a very high level if many/large UA crystals started dissolving. That’s because allopurinol reduces the amount of UA produced by your metabolism (often quite drastically) but has no direct effect on old deposits/crystals.
Someone in your situation would therefore do well to take colchicine or some other immuno-suppressing drug before eating something like prok ribs. But how would such drugs affect mRNA vaccination? I have no idea. The whole point of these vaccines is to trigger your immune system. Hopefully colchicine is specific enough that taking it wouldn’t reduce the efficacy of mRNA vaccines but I have no idea if that’s actually the case and I suspect most doctors would be clueless as well.
The problem with ice if the amount of UA in your blood is low (or even only a bit high) is that it could easily prevent UA from dissolving. If the inflammation is due to a dissolving deposit, my main concern would be that ice could not only make it worse but also prolong the attack.
Regarding the login process, I agree you shouldn’t be required to login with your name and I did ask Keith about that a few days ago.
August 28, 2021 at 9:14 am #10510
Thanks for fest reply
When is after treatment point could be considered in your view?
From what I believe I red it’s not a real event
I am in L.A and may fall asleep prior to your answer so forgive if I want reply soon
August 28, 2021 at 11:06 am #10511
There are two ways to look at it: either the treatment phase is over simply when you stop having symptoms (inflamation and so forth) or when there is no more solid uric acid in your body. The problem with the first approach is that it is only knowlable in retrospect but, outside of clinical trials (and even then, what kind of deposits can DECT reliably detect?), no one is going to know when there is no more uric uric acid in their bodies either. In many (most?) cases, that’s not going to be clinically significant either so I would normally go with: the treatment phase is over when you stop having symptoms.
At that point, eating badly on a hot day might possibly give you very mild inflammation for instance but things like vaccines won’t be a real concern anymore as long as you keep the average amount of uric acid in your blood from staying too high for too long. How high is too high and how long is too long will depend on individual factors such as how chronic your gout was or how aggressive your immune system is (which varies with age) but in some cases that can be a very long time indeed if the relevant studies can be taken at face value.
For instance I haven’t used crutches for more than 3 years and I can’t recall getting any gout-like symptoms from either Moderna dose. Because I used to experience chronic inflammation, my behavior very much changed in some respects at the end of the treatment phase.
Please sleep quietly. There is of course no rush.
September 1, 2021 at 9:23 am #10512Edward GrobmanParticipant
I’ll be brief . Its bin a week since my flair at the left toe , the on with tophi . Bfore Vaccination and AP I managed for many years to escape ,just with mild inflammation and mild/moderate short term pain (just like you described the “cure”, in previous post nobody.) frankly I begin to be panicky a bid .I am eating no beef, only white meat chicken, only salmon in fish , salads , really boring food… except for the half rack of pork ribs that I am still exoerience the outcome. NO alcohol period, and I am (was) a pretty heavy every day drinker (probably the “best” on this forum),
…( could it be be quitting cold turkey is a problem? )
What I noticed to my surprise, thet the purine content in modern calculation is different since I first learned about the diet 15 years ago or so. Besides there is Nutritional value in purine tables that I don’t know how to consider or apply
Please advise what fish in general is better nowadays and can I have sushi (roe fish)
Sorry I lied- this message was not really brief
Thanks nobody, and everybody
September 1, 2021 at 12:48 pm #10513
There are a number of issues in there, so brevity is going to be impossible.
But yes, you can have roe as long as you take AP. Less briefly and according to the little information I’ve seen on the topic, ikura/sujiko and kazunoko seem OK wheras some others such as tobiko (which I understand is often used in sushi) are problematic.
Among fishes, monkfish (excepting its liver) is known to be less troublesome, purine-wise. But really, most large fishes aren’t that bad. And the amount you eat is more important than the species (you need to take the water content into account so dried anchovies could be especially bad for instance).
Taking enough AP means you don’t have to worry about purines. The trouble is that if you wanted to eat an obscene about, and use alcohol on top you might have to take a good bit more AP than if you were being reasonable.
I don’t know what calculations you are or were using but there’s plenty of terrible information about purines out there. Chicken and salmon are no better than most meats for instance (most chicken parts would be worse than tobiko even if they’re white, not accounting for the fact that people typically eat a larger amount of chicken).
Perhaps if you were to specify what “nutritional values” you are talking about, I might explain how you could use them.
Your symptoms aren’t the result of the pork ribs. If the ribs had anything to do with your predicament, they were only a trigger. The cause is of course years of high uric acid and no diet will take away the extensive deposits identified by DECT. People often blame all manner of symptoms on what they last ate but that’s often simply superstition.
Some people need to take care of triggers in their diet but purine numbers won’t tell you what happens to trigger you (unless you go really crazy with purines, which might be a trigger of sorts). There are many non-dietary triggers such as dehydration or (potentially) vaccines.
Some people also have an iron problem in which case the iron content of certain meats might be have on effect on gout but that is again a separate matter from purines.
I didn’t describe “mild/moderate short term pain”. What you seem to be describing is the period between actual attacks, which can sometimes last years at the early stages of the disease.
Starting AP often triggers gout, which is why people are often put on colchicine or ibuprofen-type anti-inflammatories when starting AP. Unfortunately, if you had loads of solid UA, that initial phase of the treatment is probably going to last longer than people are normally given such drugs for which is why it would make sense to take more AP (and avoid alcohol) in order to shorten this phase.
There’s no call to panic but you have to understand that lowering the amount of uric acid in your blood makes the solid uric acid unstable. That wasn’t much of an issue for me but if you rarely (if ever) had serious gout symptoms, this could be highly unpleasant. Many experience such unpleasantness as part of the treatment if they had negelected excessive uric acid for many years. If you stick with AP (and make sure you are taking enough), this will be transitory and can in any case be managed with the usual anti-inflammatory techniques.
September 2, 2021 at 8:53 am #10514Edward GrobmanParticipant
I meant asking about *nutrition density* quantities in one of the tables ,and its reflection on measuring gout dieting intake.
I just purchase a UA measuring devise “UA Sure” , mostly good reviews , I would like to do some research of how and when the UA fluctuates.
In my first post I stated that my Original flair on right toe many20 years ago was such that air movement was unbearable , since then I did not have a incident that strong and not with the Right toe.
I would appreciate you pointing me to a food table of your preference.
I would like to believe (and its encouraging ) that the diet is less important than AP ,
Dough I afraid that I have that peaty rare side affect of diminished interest in sex ,that coincided with starting AP 5 mo. Ago . I am a young fellow… only 29 years short of 100,. but still (on a serious note) it was a sharp change, that is bothersome… (Testosterone normal).
P.S I did not get a reply about loging in with a Nick , I would appreciate if it possible.
September 2, 2021 at 12:12 pm #10515
@Keith, we still didn’t get a reply about registering so that people won’t be forced to log in through some kind of social media account! As you can see, that can be a problem.
AP makes purines less important because it inhibits the purines which are typically responsible for the bulk of the body’s production of uric acid. AP does not however affect directly the uric acid you produced through the years and which accumulated in your body which is why many are troubled by gout symptoms for a while after starting AP. Purines still matter because (at reasonable doses anyway) the inhibition isn’t complete. And most of the other ways in which diet affect uric acid are not affected by AP so you might still need to watch the minerals and the amount of protein you eat for instance. This might help your body getting rid of the old uric acid faster.
Because I don’t think most people actually need tables and because I’m not aware of a fact-based document which explains what foods one should eat or avoid in a manner that anyone might understand, I’m reluctant to point people to food tables when they don’t seem to have understood how to interpret them. I certainly wouldn’t want you to obsess about the wrong things based on a table which is never going to be comprehensive anyway. I understand Keith stopped distributing some of the available technical information for similar reasons. That said, if you insist I could point you to a japanese paper featuring unusually pertinent measurements of the purine contents of some of the foods you seem to enjoy (and of some common foods).
I’m not sure what “nutrition density” is referring to exactly but, like I said, the amount you eat is as important as the purine content per volume or weight. And people would normally eat a smaller amount of a nutritionally dense food. So while regularly eating a food which isn’t very nutritive but has many purines makes little sense, eating a small amount of a nutritive food which has more purines than you’d like could be more beneficial than harmful.
The sex thing might be temporary, perhaps because your body is exhausted by its reaction to the unstability of the old uric acid. But you should talk about this to your doctors. If they think it is a matter of concern because it could be a sign of a worse problem or something, there are alternatives to allopurinol (one of which is quite common) you could try instead. But if your doctors aren’t concerned I think you should consider waiting until you are feeling well again (no inflamation and so forth) to see if things don’t go back on track at that point.
And if you changed your diet around the same time, it might also have to do with that rather than AP.
November 3, 2021 at 8:26 am #10522
Some new developments to report. Still confusing
My UA getting lower latest 4.3 on medical blood test while no inflammation present. ( my own UA Sure mashing shoved 4.9 same day a few hours later)
Then a few days later begins a minor swelling at my troubled with Tofied left toe and moderate but debilitating pain trughout many joints of both feet mostly bottom soles.
as I mentioned I pest a DECT in March that shoved some mild to moderate cristalls at the center bottom of R foot and significant tofi deposit Left big Toe , with mild bone deterioration in it
the tofi size not getting smaller,and I have no way to now if my 3 mm linier deposit on the bottom of my hill is dissolving w/o repeating the DECT
I have these moderate pain waives Avery 2 weeks or so , trying to keep the diet but not religiously , as you telegraphing, that diet is not the main key
I was recommended crystenza as a way for a speedy disolvement of tofi and A way out of my chronic discomfort with pain waives and possible way out of the continued intimacy issues
What do you think.? What are the draw backs of krystenza in my case
P.s is it still no way to register anonymously?
November 3, 2021 at 2:01 pm #10523
I don’t know what crystenza is so I can’t comment.
I haven’t seen a study in which someone tested at 4.3 without tophi shrinking. But it takes time. And while I have seen studies in which people who tested lower got slightly faster results, I’m not sure that warrants taking chances with higher doses in your case. Still, it’s something which you might want to discuss with your doctors.
I’ve never had DECT or obvious tophi but I still had to use canes over a year after starting a similar drug. And I wouldn’t be surprised if your uric acid problem was slower to resolve than mine.
As you point out, without repeating the DECT it might be difficult to tell how the process is progressing. Even the visible tophi are more complex than lumps of uric acid. And bone deformations among other problems can not only look like tophi but appear in locations previously affected by gout as a result of the damage done by gout in the past.
While swelling at the toe joint is typical of gout (and something I would expect in your situation), plantar symptoms (if that’s what you call “bottom soles”) could well be a different problem, perhaps only indirectly linked to gout (for instance by the way of mechanical stress).
I would recommend getting examined by a doctor anytime you experience symptoms that feel different or which affect a location previously unaffected by gout.
I assume you are taking colchicine and/or something like indo for your bouts of painful swelling.
With regard to diet, perhaps I should stress that you should support your kidneys’ work at this time with adequate water consumption as well as by eating enough vegetables and fruits (in part because they contain minerals which may affect the acidity of your urine). Obviously, this recommendation might not apply if you have severe kidney disease or some other problem such as diabetes which might require you to follow an unusual diet.
I haven’t heard anything from Keith lately (here’s hoping he’s OK!) and I’m unfortunately not aware of any change with regard to the registration situation.
November 4, 2021 at 5:40 am #10524
the drug is “krystexxa”. Or Pegloticase intravenous
my doctor is suggesting this treetment,and so far I kind of resisting because he seems me overly entusiastic about how he presents it, as the closest thing to cure, which it is not, besides there is a bag of side effectsthat comes with it.But I may give in and go for it, not so sure yet
I will like to point out to you anatomicaly to where my deposits are shown on DECT and that’s where I experience the stiffness and pain in the bottom of my R foot:
3 mm linear deposit betveen 3 and 4 metatarsals, and almost liniar 2.5 mm between calceneus an cuboid bones .Also Doted singular deposits in few other places
I describe this only to eliminate the idea of plantar syndrome
it is definitely Gouty moderate deposits but in such areas that makes walking a challenge
Sorry to be so “scientific”
Quastion About colchicine: since the beginning of the AP I took colchicine only when I felt the beginning of each flare for a couple days(and not everyday as is advised by some doctors).I was and still am convinced by a idea that colchicine is a dangerous drug that suppresses immune system and therefore I used it that way especially considering COVID.
Was this possibly a mistake ….? Should of I used it once a day for a
3-6 month or so .Share your opinion ,please.
Also, from reading your post I don’t understand the severity of your gout and it’s location and why you had to use canes for so long, if you don’t mind sherring
That’s it for now
Thank you, Pal
November 4, 2021 at 10:57 am #10525
Ah! I had heard of pegloticase, but not often enough that I’m confident about how to spell it (or aware of the brand names).
My understanding is that this intravenous drug works much better than anything else medicine has to offer. Most people have little use for it since AP (or equivalent) typically does the job if you take large enough doses but the trouble is there’s a limit to how quickly these oral drugs can get rid of extensive uric acid deposits because they do not actually break down uric acid. Pegloticase should in theory act much faster but as a result your body would have to deal with the byproducts of uric acid breakdown which I suspect might be dangerous for the kidneys in particular.
There might be other serious side effects I’m not aware of. This treatment is so rare that I’m basically ignorant about the risks so I can’t help you balance the risks and benefits. All I can tell you is that the benefits are real and that, in doubt, it’s generally best to get a second opinion from a different specialist if the treatment isn’t urgently required.
About colchicine: I agree it’s a dangerous drug and people are often told to take ineffective doses as a result. It’s also not specific enough to be very effective at any dose.
You might recall there was a COVID scare about regular anti-inflammatories but if you can handle the side-effects of a large dose, they work well enough without the help of colchicine. And unlike colchicine, they are used often enough that people know by now what effect they have on COVID. I woudn’t be surprised if the anti-inflammatory they give for COVID nowadays worked well for gout by the way.
But if you can’t take large enough amounts of these other drugs regularly, then colchicine can be useful. If there’s lots of virus circulating in your area however, it might indeed be prudent to abstain from rare drugs which aren’t life-saving.
I only used canes during some flares. Perhaps your immune system doesn’t react as strongly as mine (I was still in my twenties when I got the canes) but swelling in the feet sometimes makes walking extremely painful. I didn’t have extensive deposits so it was unsurprisingly the toe joints and ankle joint which gave me the most trouble.
I talk about the canes because it’s easier for me to remember the times I used them than to remember all the times I simply felt pain. But I know I had less frequent and less severe flares for a while after the last time I used the canes. The less severe symptoms are also less specific to gout so I can’t tell what caused every mild episode.
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