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An 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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zip2play said:
from Gerry: That photo was taken 3 days after it was cleaned of all tophi.
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Your podiatrist missed a bunch becasue I can clearly see exposed “chalk” which is FAR from where your toe joint should be. Is it possible he wants you coming back every fortnight FOREVER?
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What drugs are you taking and how long have you been on it/them?
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(I apologize for my memory and ther's no way that I can see?to call up your old posts in one place.)
My uric acil level is 0.32 mmol/L, I am on Probenecid since November and the tophi only takes a day to form after the toe is cleaned but it is getting less painful and the amount of urate coming out is slowly decreasing.
The toe is clean after being scraped.? ?
zip2play said:
OUCH,
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Jerry, If I had that toe at the end of my foot I wouldn't be able to resist taking a dental pick GENTLY to that whitee area on the top inside of the toe. Perhaps I could ignor it for an hour or so but then I would HAVE to dive in.
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How long did it take to get that big?
It started as a white lump which burst in April 2010.
As I said the podiatrist scrapes ir fortnightly.
That photo was taken 3 days after it was cleaned of all tophi.
This is a photo of tophi on my toe.
I have the tophi scraped off every 2 weeks by a podiatrist.It is now 9 months since this started and my uric acid level has been normal since november at least.
Do you think I will win a foot beauty contest ? LOL
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hansinnm 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.
hansinnm, 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.
Thanks 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.
Brett Thurston said:
I take a view of short term pain relief, coupled with long-term uric acid reduction. Ice and NSAIDs did the trick for me during the worst times, but obviously reducing the UA levels was the chief thing I needed to do (and did do)
I agree.
I have found (and this is my experience only) that as soon as I feel the first twinges of gout coming on, I take one viclofen 25mg pill which usually kills the pain within 2 hours. The longer I go without any medication the longer it takes to get rid of the pain.
If ice contributes to the crystals why not take a pill instead of the ice treatment.
This along with the long term uric acid reduction suits both purposes, defeat pain and lower the uric acid.
As I said, this applies to me and I am just a learner and that is why I am here – to learn more about my gouty problem.
I have learnt more in a few days here that what all the health professionals ever told me.
(I hope this is on topic)
hansinnm 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.
trev, 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)
Thanks 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.
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.
