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Hi there,
I have been watching from the sidlelines and have just created a profile. So happy this site exists. Great posts by some really well-informed individuals.
Here is my story:
After a couple of issues involving mysteriously hurting feet I awoke with a GIANT toe that had a smart red racing stripe just below the toenail and continued to just above the base of the toe. The pain was pronounced and ater searching the internet, I figured it was gout. I have had pain for a little more than 3 months and have been still going to work limping and sometimes shuffling along. My first uric acid reading was 9.4 and the last time it was checked it had been lowered (with Allopurinol which I have taken religiously for over a month – 200mg) to 6.3. This was 3 weeks ago and I plan on going in in another week to have it checked again.
From all the searching of the forums, I am puzzled by the fact that-after I demanded colchicine I still have pain. I took them first 2 and then 1 per hour until I reached 10 and had not much benefit. I awoke to both diarrhea followed by vomit and then the two actually started happening together-a logistical nightmare. The pain went away only after this – the next day was fine. Now a couple of days later the pain is here as bad as ever. The doctor prescribed me Probenecid now and Colchine to be taken together and I am unsure how to proceed with the pain back again. I have only been pain free for about 4 days since this started.
I am wondering if I am hovering at some place where deposits are being mad and dissolving explaining the constant pain. Also, why only temporary relief from the colchicine? I knew I couldn't take it for 3 days after the first course.
I guess I am afraid of a lifetime of this and I'm thinking maybe it might not be gout too – but maybe I am a bit hasty in my thoughts. I must say that the pain makes it difficult to be clear-headed sometimes.
Any insight would be greatly appreciated.
Thanks
Sorry to hear it. Have had the same problem on and off. I take a couple teaspoons of baking soda a day which seems to help. This is discussed on the site in other forums. I have seen no studies providing evidence that it works, other than the intuitive point that the baking soda is alkaline and will help reduce acid.
But there seems to be strong evidence for Vitamin C helping
http://www.medicalnewstoday.co…..141562.php
and strangely coffee
sirlimpsalot said:
Post edited 11:32 pm – October 28, 2009 by sirlimpsalot
My first uric acid reading was 9.4 and the last time it was checked it had been lowered (with Allopurinol which I have taken religiously for over a month – 200mg) to 6.3. …
I am wondering if I am hovering at some place where deposits are being mad and dissolving explaining the constant pain.
At 6.3, I fear you are in exactly that hideous place. I'd seriously consider a phone call to the doc with a view to increasing to 300mg.
This will not do much immediately for the pain, but it should get your uric acid down to a level where this stage of your treatment (dissolving old uric acid crystals) is over quicker.
It is hard to form an exact opinion on the colchicine issue, but my bet is that you are in that place where uric acid crystals are partially dissolving, and possibly reforming, so the pain becomes almost continuous, and too much for the colchicine to counteract. I can only suggest another discussion with your doctor about alternative pain relief.
Please try and stay positive. If you can get your uric acid levels down to the point where most of the crystals dissolve, then you will get into the pain free phase.
Can I finish on a completely “off topic” note, and congratulate you on winning this weeks best user name competition (no prizes – just the warm glow of recognition).
sirlimpsalot,
I agree with GP that 6.3 is still not the safety level and that GP's advice to get a bump up to 300 mg. allopurinol is good advice indeed. Probenecid and colchicine (a combo drug called col-benemid is available branded and generic) is a good combo IF you have had a urine test and are determined to be an underexcreter.
All that said, a trial to 300 mg. is the better choice…one should not abandon the best drug on the basis of prescribing too little of it? THe fact taht your doctor stopped at 200 mg. without achieveing a <6.0 is a mystery and NOT good medicine.
You and I have both found that for an acute attack treated with coclchicine, pain relief and diahrhea go hand in hand (sorry about the vomiting…there is little doubt that the gastrointestinal tract does NOT like colchicine) The fact that you were cured and then had another attack a couple days later just means that the GODS were not in your corner and gave you another attack because they dislike uric acid over 6.0 for people with gout…and you cannot argue with Zeus' thunderbolt…although gout ight be handleed by one of the lesser gods with a small hand drill and a gleefull leer.
Can I presume that you are now taking 200 mg. allopurinoll PLUS the probenecid and allopurinol? THat should bring some relief soon AND get your numbers down BUT taking 3 drugs is thrice as likely to cause untoward side effects rather than just taking one. THe regimen of the three drugs is usually reserved for thouse with bad tophaceous gout and a desire to get UA down around 3.0. How much probenecid, how much colchicine?
Best choice SEEMS to be just one drug, allopurinol 300 mg. forever and aim for a 5.0 UA reading. Once it gets your UA under control you likely will noot be bothered by any more attacks.
It sounds enough like gout to warrant 300 mg. allopurinol for at least a year…if you still have some doubt about the diagnosis THEN go back to 200 mg. and see if that will still keep you pain free…and then 100 mg. Your correct diagnisis will soon become apparent.
Podagra is a better diagnosis of gout than an “inconclusive” joint aspiration.
“If your “sir” comes from the Order of the Garter, I'd loosen it a bit to get better blood flow to that toe.
(Keep your foot elevated and warm/hot.)
((Personal note to self: perhaps there are some people who need the FULL dose of 16 colchicine and 10 is not QUITE enough?{wink, wink, nudge, nudge!}))
Ha!
“Order of the Garter” Nice one… 🙂
SirL -You're right about pain making judgement difficult- This site helps a lot in that direction.
First off, I must say you guys are funnier than hell. Thanks for the accolades on the choosing of the name. I perseverated on it last week. Also thanks for the words of encouragement. You don't get many after this much time going by. I used the “sporting injury” thing many times now at work and at with the wife it has tested our relationship – we have an 18 month-old and he runs around a bit.
I am taking 500mg Probenecid twice daily along with .6mg Colchicine (twice daily). No relief so far…but just recently started this – maybe a little of the edge taken off the pain. I'm not taking Allopurinol, but plan to give this some time to work and then call doctor to see about re-issuing a prescription. i have tried the baking soda and drink coffee in sufficient amounts already. Believe me, I would see a witch doctor if I thought it would help.
I guess I just have to be patient. Of course this is difficult when you are missing out on life in the meantime.
Thanks for all your insightful comments – I appreciate hearing from fellow soldiers in the war on gout!
Check you UA as often as your insurance will allow…or what passes for insurance in SANE countries!
THe 1000 mg./day of probenecid is a minimal dose as was the 200 mg. allopurinol. Why is your doctor afraid of adequate dosing?
I am tempted to say, but I won't, if you have any allopurinol still lying around why not consider adding 200 mg. to your current regimen…nah, I won't say it.
I appreciate you not saying that
and thanksCan you also not tell me if you would advise whether I could take 3 colchicine per day?
I wouldn't recommend 3 colchicne a day for an extended period…you'd probably soon develop the worst kind of incontinence…the back kind.
The body doesn't tolerate long term colchicine in anything except the tiniest dosages. I think it should be reserved for allopurinol initiation and the BIG attack (and then taken quickly and in a large amount.)
But get on the 300 mg. allopurinol as soon as you can.
sirlimpsalot said:
First off, I must say you guys are funnier than hell.
There's a current thread in Gout Cures [link deleted – old discussion now archived] which Sir Limp(s) A Lot might not find so amusing.
On a more serious note, the concensus is to do something to get your uric acid down well below 6. This should make any gout flares that do occur less-prolonged.
Beyond more pain relief, the only other advice I can think of now is:
- Keep affected joint warm (but 10 minute ice-pack may help as long as you get temperature back up straight after)
- When resting, try keep affected joints elevated, (but also keep mobile as much as you can – I've noticed attacks go quicker if I keep moving – presumably from better blood flow)
GoutPal said:
sirlimpsalot said:
First off, I must say you guys are funnier than hell.
There's a current thread in Gout Cures [link deleted – old discussion now archived] which Sir Limp(s) A Lot might not find so amusing.
On a more serious note, the consensus is to do something to get your uric acid down well below 6. This should make any gout flares that do occur less-prolonged.
Beyond more pain relief, the only other advice I can think of now is:
- Keep affected joint warm (but 10 minute ice-pack may help as long as you get temperature back up straight after)
- When resting, try keep affected joints elevated, (but also keep mobile as much as you can – I've noticed attacks go quicker if I keep moving – presumably from better blood flow)
I was wondering about the icing technique slowing blood flow and causing a metaphorical “log jam” myself. Also, I think I read or heard somewhere to increase colchicine until results are reached. Obviously, not to toxicity.
I have had gout for ten years, and just recently started 300AP(12 days). My ankle inflated for a month. For the last two weeks(before AP), it has moved to my right hand and wrist. Due to a cervical spine op and previous RA diagnosis, I am on time released morphine. It doesn't come close to cutting the pain. I too, have taken cochicine until it made me ill. Six weeks ago, I began drinking water at an astounding rate, baking soda, vitamin c, and even the black bean broth which works a bit. I wonder might it take more than 300AP to stop the uric? My last lab value was 11.0. I have siome really bad tophi, and I know it will take a while. One question is this: If I am not taking enough AP, will tophi continue to build? It seems like some have disintegrated a bit, but I might be wishful thinking. Alluding to the previous poster; Pain sometimes affects my judgement and patience. For the record, I intend to stop the pain meds as soon as I get this under control, but not about to before.
I am scheduled to see a good rheumatologist on Dec 10. Hopefully they will draw labs and give me a more detailed insight. I would consider surgery on my elbow tophi, if it would be beneficial and less painful. The tophi lumps built very quickly once they started. Now, I'm freaking out. I just want to make sure I'm heading in the right direction. Is not any decrease in UA levels helpful. That's the part that concerns me.
that I might still be above 6 and therefore buiding more tophi
I am for sure suffering the BIG ONE every day!
If you've been on allopurinol for 12 days, you are 2 days away from your first uric acid level test. This will determine if 300mg is OK or if you need to increase it. You need to get down to at least 5, but I would suggest lower, say 3 to 4, to get rid of the tophi quicker. This is a better option than surgery, though if tophi are still causing serious discomfort by the time you see the rheumatologist, you can discuss surgery then.
What's that? You don't have a uric acid test scheduled for 2 days?
Get one.
I use home test kit for testing SUA levels and have compared them with the lab results. The home tests seem to be relaible as the home and lab results were very close. I have compared them couple of times.
Besides, I have seen that the results are very consistent, for example, I have seen clear trend based on medication and time of test….nothing out of range or shocking.
Here is the link for testing kit
I've tried to cover the key points about home test kits in my uric acid levels article. There have also been several discussions here, which you will find by searching for home test, or uasure, or similar.
The key point is that you should be getting all the testing you need from your doctor. I would go further than that for anyone who is on uric acid lowering (allopurinol, febuxostat, probenecid etc) and say that, for those patients, inadequate uric acid monitoring should be a criminal offence. It is certainly, in my opinion, medical negligence.
Having said that, myself and many other people have found the kits useful. Others have experienced quite wide fluctuations in testing, though this seems to be largely overcome after some practice in establishing a repeatable testing routine. I plan to do another article sometime, though the essence of it is in the Monitor results discussion.
One question is this: If I am not taking enough AP, will tophi continue to build?
And the answer to that is a big YES!
If I had severely tophaceous gout I would take probenecid AND allopurinol and aim for uric acid levels below 4.0 to dissolve as much deposited urate as the blood and lymph systems can reach.
I am going to make an iconoclastic pronouncement here: Do NOT ice a gouty joint. THat icing recommendation is a knee-jerk reaction from doctors who see all swelling as from a common cause…gout is different.
So just like one should never ice a severe case of frostbite, do NOT ice a gouty joint, it will only cause more crystallization. HEAT the joint and keep it nice and toasty warm.
I have totally come to the same conclusion. I bought a device that consists of a bag of clay with a cloth cover that you put in the microwave. I plan on keeping up the blood flowing as well as possible.
I do see where some of the tophi has visually dissolved, but I think it is landing back around the wrist on my other arm. I am getting tested ASAP. Also getting home tests.
I have plenty of 300 mg Ap from the first time I was too stupid to take it. I don't go to the rheumy until dec 10. I also don't know if my insurance will pay for labs again this soon. I am just wondering……….
What would be a good dosage to go with? 600? Would it it kill my liver?
Not saying I'd ever do that. But if I did.
i
zip2play said:
I am going to make an iconoclastic pronouncement here: Do NOT ice a gouty joint. THat icing recommendation is a knee-jerk reaction from doctors who see all swelling as from a common cause…gout is different.
So just like one should never ice a severe case of frostbite, do NOT ice a gouty joint, it will only cause more crystallization. HEAT the joint and keep it nice and toasty warm.
Again, a brilliant observation. Sometimes I don't see the wood for the trees, and STILL repeat stuff that others have suggested.
To be honest, I have used an ice pack (OK bag of frozen peas) in the past when my ankle was at a stage where the alternative was a hacksaw. Some relief, but there is clearly a better way.
I'll review as much as I can and make sure my articles warn of the obvious dangers of ice.
Thank you once again.
P.S. to everyone looking at the microwave warmers. These are quite easy to make using rice, grains, even cherry pits and an odd sock or similar. Just search for make a microwave heat pack in the blue leapfish search box at the foot of the page.
roosterwes said:
I have plenty of 300 mg Ap from the first time I was too stupid to take it. I don't go to the rheumy until dec 10. I also don't know if my insurance will pay for labs again this soon. I am just wondering……….
What would be a good dosage to go with? 600? Would it it kill my liver?
Not saying I'd ever do that. But if I did.
i
You are in danger here of following the stupidity of whoever prescribed the allopurinol in the first place.
Allopurinol without before and after uric acid testing is stupid. It's beyond stupid, it is negligent.
Allopurinol should only be used to manage uric acid levels. It is part of a therapy that, whilst not over complicated, goes beyond merely popping pills.
If no provision was made for testing when the allopurinol prescription was drawn, get your lawyer to suggest that the doctor pays for the test.
By the way, 600 mg is within the maximum prescribed dose of 800, but I must stress that it is irrelevant without uric acid monitoring.
Thanks GP, Zip, Trev and others, I too am waiting a long time to see the rheumatologist. December 7th. I know…a “day that will live in infamy.” But am cautiously optimistic and feeling a bit better in the feet department. I upped my AP to 300 got off the probenecid and colchicine and am taking an occasional NSAID or two for pain. I have had a couple of good days, so I think I may not be out of the woods yet, but I am hoping. I will give you a full report with numbers after my next appointment. I am keeping my upcoming blood test with my regular doctor in the mantime too.
Thanks again gents
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