Gout Forum : Probenecid Experiences

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Probenecid Experiences

UserPost

12:45 am
April 13, 2009


apcoach

Toe Torture (status changes after 50 posts)

posts 42

I was just diagnosed by my dr. as being an under-secretor and have been put on 500 mg of Probenecid a day.  I was not given any colchicine which i may call ask for him to include.  My question is:  who has any experiences with probenecid they can share? 

5:02 pm
April 13, 2009


Tom

Guest

apcoach said:

I was just diagnosed by my dr. as being an under-secretor and have been put on 500 mg of Probenecid a day.  I was not given any colchicine which i may call ask for him to include.  My question is:  who has any experiences with probenecid they can share? 


A few years ago my Dr tried to end my gout attacks using Probencid. He gave me a relatively large dose (500 or 600 I think) and some colchocine. I had a very small amount of gout in my  right foot at the time. Ended up in a few days withthe worst gout attacj ever in BOTH feet. Couldn't walk for days. The colchocine didn't seem to help. I didn't continue with this path.


Still having gout attcks every 8 to 10 months though.

5:56 pm
April 13, 2009


zip2play

Member

posts 1278

coach,

I think you may be the first on the board to try it. Let us know your experiences with it. Be on the lookout for any rash or any urinary difficulty or back pain. Aspirin interferes with its effectiveness and it enhances the effects of penicillin.

If the drug causes you problems allopurinol is second best and works for underexcreters as well.


Were you able to collect every drop for 24 hours. I know you mentioned you might have forgotten some. My thought was that unless you got it all, it would show as underexcretion.


Good luck with the drug…if you like it I might ask for it or at least for the excretion test.

7:43 pm
April 13, 2009


Tom

Guest

Some more info on my gout and the treatments.

The Proenecid path was chosen as I had multiple gout attcks in various ares of my body (areas on both feet, knees, elbows). They did a 24 hr urine collection and the uric acid was “normal”. Also had multiple blood tests done where the uric acid was either normal or slightly elevated. My weight is a bit high and I have also developed type 2 diabetes over the last 3 years.

I had been using the left over colchocine from the Probenecid experience when I woudl get early gout symptoms. I had not had a serrious gout attack for over a year until Nov of 2007 and again right now. Both times in my ankle area.

I did not notice any side effects when I did take the Probenecid, but I didn't take it for too long due to the extreme gout attack it created.

Planning to try the black bean drink this evening after reading on this web site. Taking 4 advil at a time now to lessen the pain, but its been 3+ weeks. 4+ as it started in my big toe and “jumped” to my ankle.

New doctor on April 24th (moved) so we'll what the blood tests show.

Has anyone used the uric acid tester? How accurate is it? I am very familiar with testing my blood for sugar levels which is pretty accurate.

7:56 pm
April 13, 2009


zip2play

Member

posts 1278

Tom,

Be patient…I think our very first post must be approved by GoutPal (Steve.) He's probably enjoying a nice long weekend somewhere.

But let me guess…you've tried probenecid.Laughing

9:40 am
April 14, 2009


GoutPal

Admin

Baildon, Yorkshire

posts 1200

zip2play said:


Be patient…I think our very first post must be approved by GoutPal (Steve.) He's probably enjoying a nice long weekend somewhere.


Nice long(ish) weekend – thanks zip.

The approval thingy is to do with registration – if you register (and login), your post gets approved automatically. If you don't, it doesn't!

The other big advantage of registering is that you can (optionally) get email notification whenever anyone adds a post to a topic that interests you.

Unless replying to specific points in this topic, please start a new topic. See new topic link above, or gout forum guidelines.
Current gout status in my profile.

2:05 pm
April 14, 2009


zip2play

Member

posts 1278

Welcome back Steve.


Tom,

I know Steve has bought and used the uric acid tester…I'm musing over it but the price is a bit high (well over $100 U.S. + test strips.) You can find a link to the purchase site somewhere in this forum. Have they ever put you on allopurinol? It (or probenecid) is a FAR better choice than treating attack symptoms. Since you obviously are almost at the “chronic gout” stage, you might have to carefully titrate your dosage of any drug up slowly lest you go itnto multiple excruciating attacks while your tophi get “liberated.”

On the matter of “normal uric acid,” what is defined as a normal range for people who have never had gout the upper level (7.0 mg./dL) is crucifyingly high for those with proven gout. And thus “slightly above normal” is anything but slight. You really MUST contol your uric acid down to the 5 level even if getting there involves some BIG hurt. The alternative is deadly.


I read that people with severest gouty tophi get good results with a combo of allopurinol AND probenecid which often brings their serum uric acid to the 3.0 level. Perhaps with levels that low attacks might be prevented even in the earliest stages of treatment.

Let us know the results of any uric acid tests you have.

3:13 pm
April 18, 2009


apcoach

Toe Torture (status changes after 50 posts)

posts 42

With my wife out of town and my caring for my two small children I waited to start taking Probenicid until today for fear of sparking an attack.  I'm excited to see what happens next.  Many have said the length of time before stabilization depends on the body's storage of MSU crystals so there is no way of knowing, but I don't think I have any tophi.  I do have la lump on the base of my hand that I have had for several years that doesn't fit the description or appearance of what I have read or seen regarding tophi.  If it is tophi I may be in for a longer process.


On another topic, I am reluctant to take the indocin the dr. gave me in the case an attack is triggered by the Probenicid because of all of the negative reports I have read on other sites about people having disorientation, dizziness, palpatations, etc.  Is that something I am over-analyzing?  I've been able to keep attacks at bay for the past four months using baking soda, which I will continue, and organic apple cider vinegar to keep my ph well over 7 at all times.  I think I may just take my chances with those methods if an attack comes my way.  The biggest concern is when I exercise which seems to be my surest trigger.

3:36 pm
April 18, 2009


zip2play

Member

posts 1278

Well THAT's a first: I added wrong!Yell


To repeat:

Coach,

I'm excited for you. I recommend COPIOUS amounts of water at first both to prevent dehydration during exercise (and concentration of UA) and since you will be dumping a LOT of urates you don't want preciptation in your kidneys. Maybe 1.5-2gallons of water a day.

For a couple days do all you can to alkalyze your urine with bicarbonate or fruits and veg, perhaps some magnesium supplements or antacids.


Keep us posted


(Let's see if I added right this time!)

4:07 pm
April 18, 2009


apcoach

Toe Torture (status changes after 50 posts)

posts 42

10-4 on the water.  I've already had a half gallon and it isn't even noon yet.  I just want to thank you, Zip, for all of your insight on this site.  You and the Goutpal are a great combination.  Most of all, I can sense that you really care about helping people.  I'll keep posting my experiences with Probenecid.

4:06 am
April 23, 2009


apcoach

Toe Torture (status changes after 50 posts)

posts 42

well, with five days in the books i've received what the prognosticators had warned, twinges, discomfort, and flares.  i have been working out and drinking a little wine a night, but i've been drinking water all day and a 1/2 tsp of baking soda every few hours.  after a a tough workout the day before, i took my first doses of indocin yesterday which i liked its affect on the gout but not the dizziness and fatigue that accompanied it.  I feel better today but can tell i would be close to an attack if my big brother, baking soda, weren't scaring it away.  we'll see what tomorrow brings.

3:35 pm
April 23, 2009


zip2play

Member

posts 1278

Sounds like you're walking on eggs there coach.

Indocin: Yeah, me too. After he first dose I ever took, for back pain I believe, I went shopping. All was well til I rode my first escalator. How I got to the top without fainting, falling or throwing up I;ll neve know. If I take any more indocin it will be on a sofa with nothing more taxing than using the TV's remote.


For grins I just pulled my indomethacin bottle…I filled the Rx March 1, 1985!Surprised Maybe I can offer it for sale on Antiques Roadshow?


If you feel you're flirting too close to an attack perhaps you can titrate your probenecid down a notch. Your steady state might take a while longer but you might avoid some discomfort. Or else call your doctor and have him call in an Rx for cochicine. Taking one or two teeny pills a day for a while is good insurance.

8:35 pm
May 2, 2009


apcoach

Toe Torture (status changes after 50 posts)

posts 42

I'm on day 15 and I'm feeling great.  I can't say that it is all due to the probenecid but it sure feels like it.  I have no pains whatsoever, except after especially difficult workouts and the soreness lasts only a day at the most.  On a couple of occasions I've even had multiple alcoholic drinks with no repercussions.  I've even reduced the amount of baking soda I'm taking to three times a day.  Maybe it was just a good week and unrelated to the drug, but who cares, right?

4:34 am
May 3, 2009


GoutPal

Admin

Baildon, Yorkshire

posts 1200

That's what I like to see.

Gout sufferers enjoying life without a care.

Here's to many more weeks of the same.

Unless replying to specific points in this topic, please start a new topic. See new topic link above, or gout forum guidelines.
Current gout status in my profile.

1:58 pm
May 3, 2009


zip2play

Member

posts 1278

Coach,


Let me also add my best wishes for a life free of gout pains.

(Now if only someone could figure a way for sexagenarians to pump heavy iron without all those OTHER pains.)

8:27 am
May 13, 2009


apcoach

Toe Torture (status changes after 50 posts)

posts 42

My first month on Probenecid is only a few days from complete.  Last week I had a day with pain and soreness in my left arch, a sure sign that an attack was on the horizon in the past.  After a gallon of water and baking soda it disappeared the next day.  I'm not sure what caused it but I had exercised hard the week before and drank a little too much one night.  Anyway, I'm feeling great at the moment.  I still feel as though the crystal elimination period is not complete yet.  I don't know if I'll know when it is over.  A question i posted on another topic is whether i should breaking the 500 mg pill in half and taking a half twice a day.  My doc did not tell me to do this but I've heard others do.

10:06 am
May 13, 2009


zip2play

Member

posts 1278

I don't see why you shouldn't take half a pill IF taking half gives you the desired serum uric acid level below 6.0. You have a lifetime of trial and error ahead to determine your optimum routine. Of course any acute attack is a SUPER warning to exercise tighter control.

8:45 am
June 6, 2009


apcoach

Toe Torture (status changes after 50 posts)

posts 42

About 50 days of Probenecid has turned me into a different person.  I am reluctant to think I am completely “through the woods” but I feel as close to normal as I ever have.  I am working out three to five days a week, eating and drinking whatever I like, and feeling no pain, twinges, or swelling.  I am religious about drinking water throughout the day and still take baking soda three or four times, especially if I am having beer or wine.


What I hope has happened, is that the crystals in my feet have dissolved and the drug is excreting the uric acid I am currently producing.  The great thing about it is that the guilt or fear I may feel after several beers is replaced by the sense of security the morning dose of Probenicid provides.  Each day starts over and the uric acid is on the way out.  I am concerned that i will get too complacent down the road and forget that this disease is still present without the drug.  As long as I am on it, I am a normal person!

4:12 am
June 7, 2009


trev

Tophi Terror

England

posts 809

Q: @Zip  upper level (7.0 mg./dL) is crucifyingly high for those with proven gout.

I have to concur here!

My SUA was 7.5 in a test 30/4/09 and I have just scraped through a bad gout attack without using much Colchicine (due to starting Statins  – temp.ceased now).

Max sleep period.: about 2 hrs. not a good night! 

I hesitate to get onto AlloP. so Probenicid may be a better long term therapy.

I have a kidney scan in a month to do with High BP/LV Hypertrophy query, so no doubt this would show the way in terms of drug toleration potential.

The other comment here I find of note is the taking of Soda BiCarb- I have seen this mentioned many times and always baulked away due to High BP not doing the sodium well.

MY BP has been well high and so till I get it stabilised I am totally cautious about SBiC- some working figures relating to this would be helpful but I realise to mention this to the medics is likely to cause  a severe sucking in of breath in response!

Somewhere else it was mentioned that used, only when needed short time, has no great detrimental effect on BP, but mine can be very unstable right now..

8:15 am
June 7, 2009


zip2play

Member

posts 1278

Hi trev,


I think allopurinol has the better record for safety so I would prefer it to probenecid. Probenecid's predilection for high kidney excretion mankes urate crystals in the kidneys somewhat likely unless alkalinization is practiced…and for a lifetime that could be tough.


I too have hypertension and I recommend a regimen to you: Lasix followed by losartan a few hours later. A Japanese study found this combo reduced uric aicid 32%…it controls my BP also. There is no other anti-hypertensive that works the way losartan does, not even other angiotensin receptor blockers.

I'm loathe to recommend it but I may try for myself using POTASSIUM bicarbonate. It's benefits are that it replaces the KCl supplement I use (Lasix causes K+ loss,) it is a potent urine alkalyzer, AND it helps lower BP. The downside is that careless use can raise K+ levels too high and hyperkalemia can be dangerous. BUT the body can readily use 5 grams a day of potassium and that's a LOT of bicarbonate. Generally speaking we get far too litttle potassium rather than too much.


Why not have a uric acid excretion test when you go for your scan? The only good reason that I see for using probenecid over allopurinol is if you are a gross underexcreter of uric acid. Maybe I'm partial since I've used daily allopurinol for almost 2 decades with never a problem.


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