Keith’s GoutPal Story 2020 › Forums › Please Help My Gout! › Your Gout › Tophi
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January 10, 2011 at 1:57 pm #10868GerryParticipant
Being new here, I hope that I am posting this in the right place.
I have suffered periodically with gout in my feet for several years – maybe every 6 months but it usually lasted only a few days.
But about 9 months ago it started again but seemed different so I did not recognise it as gout.
My middle toe on my left foot had a white lump which I now know was a sure sign, but I put it down to bad fitting shoes.
After a while the lump burst and crystals formed on top.
My doctor told me it was gout and put me on Lengout (which contains colchicine as the active ingredient) but I was unable to continue taking this as it gave me bad diarrhoea.
I am now on Probenecid to lower the uric acid and a recent blood test put the uric acid level at 0.32 mmo1/L
This seems a different way of expressing it to anything I can find here.
I have had the tophi scraped off several times which was rather painful process, and as I have been unable to wear shoes (too painful)? for over 7 months, my toe keeps getting infected.
My main aim in life is for the wounded toe to repair and once again be able to put on shoes.
January 10, 2011 at 1:57 pm #3482GerryParticipantJanuary 10, 2011 at 9:09 pm #10873hansinnmParticipantGerry said:
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I am now on Probenecid to lower the uric acid and a recent blood test put the uric acid level at 0.32 mmo1/L
This seems a different way of expressing it to anything I can find here.
I have had the tophi scraped off several times which was rather painful process, and as I have been unable to wear shoes (too painful)? for over 7 months, my toe keeps getting infected.
My main aim in life is for the wounded toe to repair and once again be able to put on shoes.
Gerry, you have a couple of problems here, if you don't mind me telling you that.
1) Your “main aim in life should not be for the wounded toe to repair and once again be able to put on shoes. Your main aim in life should be to manage your uric acid level in your body.
You are doing the right thing by using Probenecid. Just keep an eye on your kidneys and have a complete metabolic panel test performed. Your doctor, GP or rheumatologist will be able to tell if anything is starting to go wrong. Please, do not let my remark disturb you. It's just a precautionary remark.
Your blood test of 0.32 mmo1/L = 5.4mg/dl shows that Probenecid is doing the trick for you. (6.8 mg/dl is the critical point.)
2) Your more serious problem is your tophi on your toe. Don't try to scrape it off yourself. you do not want to get the inside of your toe infected. See a doctor and make sure you don't have an infection. I think I have a picture on this site to show what happens when an open gout wound gets infected. (Not nice. 4 days in hospital for surgery and $30,000 med bills.)
3) I wear Birkenstock sandals since shoes aggravate a gout -inflamed toe/foot.
January 10, 2011 at 11:38 pm #10875GerryParticipantThanks for your comments hansinnm.
I visit a podiatrist who scrapes the tophi from my toe. The last time she did this she noticed pus under the tophi in the cavity that remained. I then had a swab done by a doctor but that did not show infection.
The doctor has given be a swab to do myself if I notice any discharge but the tophi hides what is underneath.
Next time I visit the podiatrist to have the tophi removed , I will take the swab along.
I have also recently had my toe xrayed to make sure infection had not gone into the bone but all is ok there. At that time it was infected and I was on antibiotics.
I found this forum via google and it looks like a very informative place.
Also I live in Queensland, Australia where at the moment are possibly the worst floods in our history. This makes it harder to resist infection as water is coming out of the ground as well as from above. I wear sandals but they do not give much protection from the elements.
Thank you for taking the time to reply.
January 11, 2011 at 2:59 am #10882trevParticipantThat mucky water is a serious risk for causing infection, Gerry.
Have you thought/tried to put some strong [and hopefully?stretchy] plastic bags over yout feet when near a water soaking- even taping up round ankles?
This would help your chances of staying infection free in the lesion area
-?but remove the cover as soon as possible after to stop sweating up. An antiseptic swab, or cool antiseptic salt/BS soak after, might be a good idea, too.Worth looking like a refugee occasionally -?to save problems developing ..
January 11, 2011 at 3:05 am #10883odoParticipantHave you tried 'finger cots' – like tiny condoms for your digits, so at least you should get a laugh down the pub. Don't know if you can get ones especially for toes, but I've used them in the past and they're quite effective at keeping wounds clean. Can get a bit sweaty, so it's a toss up between keeping dirt out and letting air get in to help heal.
January 11, 2011 at 3:30 am #10884Keith Taylor (GoutPal Admin)ParticipantGerry said:
I am now on Probenecid to lower the uric acid and a recent blood test put the uric acid level at 0.32 mmo1/L
This seems a different way of expressing it to anything I can find here.
Hi Gerry,
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See the tables on uric acid levels, also reproduced on the left (top and repeated at the bottom because they are Important).
mmol/L is common in many countries outside USA. From the table, 0.32 is in the safe zone, and should stop new crystals forming.
Old crystals will dissolve slowly, and eventually you will see tophi disappear. You can escalate this process by lowering uric acid further for a few months. Discuss increasing probenecid dose, or supplementing with allopurinol, with your doctor.
mmol/L January 11, 2011 at 8:26 am #10886hansinnmParticipantGerry said:
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I visit a podiatrist who scrapes the tophi from my toe. The last time she did this she noticed pus under the tophi in the cavity that remained. I then had a swab done by a doctor but that did not show infection.
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Gerry, you seem to be doing all the right things to get or keep control.
Apropos Probenecid: How many mg/day are you taking? I was on Probenecid in one of my past lives and found out that one tablet (500mg) was not enough. I upped it to 1000mg/day and my SUA got in the 4-5 mg range. However, do not forget:That was for ME! YOUR metabolism may need more or less.?
Here is another thought you may want to consider: Living in Australia, you shouldn't have much of a problem to get your hands on Manuka Honey from NZ. +15 or ?+20 strength. Whenever you have an open wound (from tour tophi scrape or any other type) put a patch with that honey on it and change every 24 hours. It will close it w/i 3-5 days and prevent infection, too. (Google Manuka honey)
January 11, 2011 at 10:32 am #10892GerryParticipanttrev, I have put a shopping bag over my foot when walking through wet grass hoping that noone was looking but did not leave it on for long as they sweat and I have been told not to get the dressing wet as that causes the skin to go white and peel off, plus the chance of infection.
odo, the finger cots sound interesting but I have enough trouble now changing the dressings daily. I am getting on in years and am finding it more difficult to reach my toes, lol.
Keith, that page you gave the link to is great. Why do we have different ways of measuring uric acid in different countries ? I appreciate your comments but am a little reluctant do increase the dose of probenecid (edit:2 by 500mg per day) as it seems to be working as is plus I am always wary of other effects of these drugs.
I was reading elsewhere on this forum the amount of water that some drink and was amazed at the amount some consume as I can only get about 2 litres a day down.
The dietician I visit has suggested among other things, taking chewable vitamen c tablets and drinking more coffee.
I notice here that some do not think diet is really effective so would be interested as to what you think about those 2 items (I dont normally drink much coffee)
January 11, 2011 at 10:40 am #10893GerryParticipanthansinnm said:
Here is another thought you may want to consider: Living in Australia, you shouldn't have much of a problem to get your hands on Manuka Honey from NZ. +15 or ?+20 strength. Whenever you have an open wound (from tour tophi scrape or any other type) put a patch with that honey on it and change every 24 hours. It will close it w/i 3-5 days and prevent infection, too. (Google Manuka honey)
hansinnm, what you say is true.
As it happens my daughter's partner is a bee keeper in NZ and recently visited me and brought over 4 containers of manuka honey. I am a firm believer in the anti bacterial properties of honey so appreciate your suggestion.
January 11, 2011 at 12:36 pm #10895hansinnmParticipantGerry said:
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As it happens my daughter's partner is a bee keeper in NZ and recently visited me and brought over 4 containers of manuka honey. I am a firm believer in the anti bacterial properties of honey so appreciate your suggestion.
Man, you are fortunate. If you check manuka honey and my comments on this forum you'll find what a literally life/foot/toe saver it was.
January 12, 2011 at 9:59 pm #10898Keith Taylor (GoutPal Admin)ParticipantGerry said:
Keith, that page you gave the link to is great. Why do we have different ways of measuring uric acid in different countries ?
Not different ways of measuring – just different scales, just like some countries govern road speeds in km/h where others use miles.
I appreciate your comments but am a little reluctant do increase the dose of probenecid (edit:2 by 500mg per day) as it seems to be working as is plus I am always wary of other effects of these drugs.
No worries – you are on the right track, so as long as your level remains in the safe zone, your gout will improve.
I was reading elsewhere on this forum the amount of water that some drink and was amazed at the amount some consume as I can only get about 2 litres a day down.
That amount is fine – drinking too much can strain the kidneys, so 2.5l per day is about the max, increased only to account for excess sweating.
The dietician I visit has suggested among other things, taking chewable vitamen c tablets and drinking more coffee.I notice here that some do not think diet is really effective so would be interested as to what you think about those 2 items (I dont normally drink much coffee)
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In my view diet can be effective, but you have to be very clear about your goals, and not expect miracles. There are some substances that appear to lower uric acid. The two you mention, plus skim milk and onions, possibly orange juice (but beware excess fructose) have been shown to lower uric acid, but effects depend on how high uric acid is to start with. Thus, if probenecid is already lowering uric acid, the effects of these foods will diminish. The only way to know is to fix your diet, then add one of the aforementioned until the next test, then swap for another addition until the next test. You'd need to repeat this several times to be sure which foods were beneficial. It sounds very boring to me
By the way, if you do opt for vitamin C, then I believe 500mg/day is suitable – some vendors promote megadoses, but these may have a poor effect on uric acid levels, as they compete for excretion in the kidneys.
January 14, 2011 at 11:23 pm #10905GerryParticipantThanks Keith, your comment on the water intake is reassuring.
I said earlier that the podiatrist mentioned that she noticed pus under the tophi she scraped off but when I had a swab done it tested negative.
From other posts I have read here I am starting to wonder if she actually saw pus.
Yesterday as I was cleaning and dressing my toe I noticed that the tophi had lifted on one side, so I pressed on the top of the toe and out came a white sticky fluid, maybe slightly denser than pus. I then wondered if this was what she had thought was pus.
Was it pus or urate or uric acid (still getting used to the terms)
What does the uric acid look like when it first breaks thru the skin ?
I am glad I found this forum – so many answers to be found here.
January 15, 2011 at 8:18 am #10906hansinnmParticipantGerry said:
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Was it pus or urate or uric acid (still getting used to the terms)
What does the uric acid look like when it first breaks thru the skin ??
Gerry. I am kind of an expert on this, although I am not getting paid for it nor am I proud of it. I have been dealing with this for more than ten years.
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You are actually looking at the least three different conditions here:
1) Dissolved uric acid in your blood, generally referred to as SUA or Serum Uric Acid, is the stuff which every human being has in his/her system/body/veins.
2) Excess uric acid (>6.8mg/dl) is generally excreted/deposited on your joints which is the cause for your gout attacks. But it isn't all that easy. You can read up on it here on the forum. This excretion comes in two forms/ways:
2a) White/milky stuff, looking like puss, but has a whitish color instead of a yellowish color. Consistency is pretty much like puss. This whitish looking stuff, I call it: Shit, is MSU (Mono Sodium Urate) or the salt of the uric acid (which, by the way, is also a solid, not a liquid like lots of acids.) It first shows up as a whitish bubble directly under the skin. People, like Zip and I, who don't fear god or the devil any more take matters in our own hands and puncture the bubble with sterilized needle (generally done in a hot gas flame (that's me, I don't know about Zip.) People who are afraid of dieing generally wait till Mother Nature busts the bubble or have a doctor do it. (I used to belong to them, in one of my past lives.
Now, one of the things you must be aware of, having become a self-acclaimed doctor without that piece of paper from an accredited institution, be it from a university, college, or the internet, that is: Infection. When you puncture, cut your precious body, there is always the risk (almost certainty) of? getting an infection. (Look at the thousands of people who go into a hospital, practically half healthy, coming out as a body because of a staph or other infection, caught in there. Why do you think they say: Operation successful, but patient died!?
Anyway, you must have some kind of anti-bacterial ointment to cover the open wound/cut/puncture. I use Manuka Honey +15, from New Zealand to prevent infection and speed up the healing process.
2b) The white stuff in the liqid “puss” generally settles out as what's called “tophi”. If you let the white, milky stuff sit on top of your finger or toe, it will turn solid into a whitish crust. That is also MSU. Generally, that will fall off after some time or get ripped off by accident with opening up the skin and bleeding. Be aware of infection!. (I got several “nice” photos of what I described here on this forum.)
I hope these explanations helped scarring the daylight out of you and every one else (except Zip.)
January 15, 2011 at 2:38 pm #10907GerryParticipanthansinnm, that was the sort of reply I was hoping for so thanks.
But this learning process means every bit I learn , I then have more questions.
I am a great candidate for infection as I have Non-Hodgkins Lymphoma which means my immune system is faulty and bacteria has a way of finding only me in a crowd. I have had Golden Staph infection after an operation on my leg which took 6 months to heal so I am very aware of that.
I gather from what you say that the white gunk coming out of my toe is monosodium urate? which becomes tophi or at least adds to the tophi that exists.
My dilema is do I let this MSU continue to leave my body via the toe (which seems to be a good idea to me) or do I try and seal up the toe to prevent infection and thus leave the build up of MSU in the toe hoping I will get rid of it thru my urine.
This might not make sense as I am trying to learn and like things to be black & white (simple) and have lost confidence in one doctor who I pleaded with to help me and was not willing to treat the cause for several months, instead just giving me a pain killer which I could not continue with due to side effects.
From reading items on this site I gather it could be a long time before the tophi disappears. I accept that if I know it will eventually disappear.
January 15, 2011 at 8:30 pm #10908hansinnmParticipantGerry said:
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I am a great candidate for infection as I have Non-Hodgkins Lymphoma which means my immune system is faulty and bacteria has a way of finding only me in a crowd. I have had Golden Staph infection after an operation on my leg which took 6 months to heal so I am very aware of that.
I don't know anything about that subject.
I gather from what you say that the white gunk coming out of my toe is monosodium urate? which becomes tophi or at least adds to the tophi that exists.
Yes.
My dilema is do I let this MSU continue to leave my body via the toe (which seems to be a good idea to me) or do I try and seal up the toe to prevent infection and thus leave the build up of MSU in the toe hoping I will get rid of it thru my urine.
That's YOUR judgement call. You can always have an operation on your foot/toe and have the tophi removed that way. However, I would consult a knowledgeable podiatrist on that matter. (I, personally, prefer to have NO open wounds on my body.)
This might not make sense as I am trying to learn and like things to be black & white (simple) (there is NO such thing as black and white when it comes to GOUT.) and have lost confidence in one doctor who I pleaded with to help me and was not willing to treat the cause for several months, instead just giving me a pain killer which I could not continue with due to side effects.
I would get rid of a doctor who is not cooperating and willing to treat the cause.
From reading items on this site I gather it could be a long time before the tophi disappears. I accept that if I know it will eventually disappear.
There is medical proof that tophi do dissolve over time (a year, more or less), provided your SUA is on the low side, preferably 3-4 mg/dl. ?
January 16, 2011 at 5:10 am #10911zip2playParticipantIf I had a compromised immune system, what I would do is let it drain but with every daily shower I would smoosh on some cheap OTC triple antibiotic ( typically bacitracin, neosporin and neomyxin?or some such combo) and then wrap it with gauze until the next morning. Probably a cream formulation is less messy than an ointment, but an ointment provides more of a seal.
That way you will get drainage of urate while keeping infective agents out.
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Damn, I HAD one tiny tophus the size of a lentil over the distal joint of my right little finger. I have been drinking beer like a sailor?for?5 months?because of the stress of finding a new home. Anorexia the last month (moving)?caused a 15 pound weight loss which is welcome BUT it also caused the topus to move 1/2 inch in towards me and a second tiny topus is forming over the joint where the original one was. This in a guy who has not had a?frank gout attack in almost 20 years.
I can understand why big old tophi look like a bunch of grapes with each new one adding another “grape” to the pile.
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(When I find and unpack my camera I'll take a picture of the finger.)
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I have gone on the wagon as of January 1 and will not have another drink until April?I do this every year. But I am still musing over the possibility of upping my allopurinol to 400 mg./day.
January 18, 2011 at 7:06 pm #10930GerryParticipanthansinnm said:
You are doing the right thing by using Probenecid. Just keep an eye on your kidneys and have a complete metabolic panel test performed. Your doctor, GP or rheumatologist will be able to tell if anything is starting to go wrong. Please, do not let my remark disturb you. It's just a precautionary remark.
After seeing the replies here I have a better idea of where & how to go, wheras before I joined here I knew very little.
hansinnm, your comment about kidneys is valid.
I had a CT scan 2 days ago where they injected a dye into me.
To be able to do the scan they do a test of my kidneys. I was told that 60 or higher is good and if the result was 44 or less they could not do the scan – mine was 56.
56 what I dont know, but I will mention this to my doc at next visit.
January 18, 2011 at 9:22 pm #10931hansinnmParticipantGerry said:
?56 what I dont know, but I will mention this to my doc at next visit.
Gerry, as I mentioned before, make sure your doctor orders a “complete metabolic panel test”.
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Get all the figures (numbers) of the various tests. Watch the BUN (Blood Urea Nitrogen) and Creatinine numbers carefully, since they tell the story about you kidneys and the ?Albumin, Alkaline Phosphatase, ALT, and AST numbers tell the liver story.
Here is a URL which gives you detailed info about any medical test for almost anything a doctor wants to know about or keep an eye on:
http://www.labtestsonline.org/understanding/analytes/liver_panel/test.html
Here is e.g. what you get when you put the word : Creatinine in the Search field:
Creatinine
Also known as: Creat; Cre; Blood creatinine; Serum creatinine; Urine creatinine
Formal name: CreatinineRelated tests: BUN; BUN/creatinine ratio; eGFR; Creatinine clearance; CMP; BMP; Urinalysis; Urine protein to creatinine ratio; Microalbumin
The Test
How is it used?
When is it ordered?
What does the test result mean?
Is there anything else I should know?
Your number 56 refers to the so-called eGFR CLASSIFICATION which has to do with your kidneys filtering Creatinine. The higher the number the better the filtering process. <15: Kidney Failure or receiving dialysis. Just one example.
They give easy to understand explanations and descriptions.
March 28, 2011 at 4:42 pm #11312GerryParticipantAn update.
I posted this photo in another thread to which zip2play correctly pointed out that it was difficult to comment on as he would have to search my previous posts, so i will again post it here (photo taken mid Jan).
As I previously I mentioned that my uric acid level was 0.32 mmol/L (5.8 mg/dL) last November
I had another blood test yesterday and it is now 0.24 mmol/L (4.3 mg/dL) so it looks like the probenecid plus diet plus reduced grog intake plus podiatrist's scraping the tophi is working.
Also the tophi? is disappearing – although still a bit there. The swelling is almost non existant so I am hopeful that within the next month or so that my toe will look much more attractive LOL.
It has taken many months but at last I can see light at the end of the tunnel.
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March 29, 2011 at 2:02 am #11317trevParticipantI'm really glad things have improved Gerry- that old shot looks a doozy, as Zip would say.
When those little miniture tophi like surface specks on your 'free' toes go- you will know you are ahead.
I saw them in my?attacks but they have now gone on me , now things are? a steady <5 SUA.
March 30, 2011 at 8:26 am #11329zip2playParticipantGerry,
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I had to reread your post. I breathed a sigh of relief when I realized that the picture was the OLD one and not the “new improved” toe.
Why not post of picture of “after.”
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Damn tophi,
I raised another one the size of a small citrus seed on the second joint of my left index finger. I guess I am proving that we can raise tophi, presumably in cold joints, ?without having an attack. I will say that I think STRESS is a stong adjutant to tophi formation.
I tried puncturing it with a carpet needle yesterday but no luck. If it continues to get on my nerves, I'll silce it with a sterilized razor blade.
April 8, 2011 at 7:18 am #11354zip2playParticipantNeedle puncture and suction didn't work, all I got was blood,?but it is getting on my nerves so I nibble at it. Eventually I will chomp down hard and open it up.
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I guess even when controlling uric acid there is little that can be done about one's hands being a lot cooler than the rest of the body.
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At least it's completely painless.
April 2, 2012 at 5:03 am #5029Al O’PurinolParticipantThis forum is now closed.
Please see latest tophi information:
http://www.goutpal.com/gout-symptoms/tophi/You can share your gouty tophi photographs at http://www.goutpal.com/gouty/gout-picture/gout-pictures/
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