Stopping Gout Together › Forums › Help My Gout! The Gout Forum › Prolonged Big toe pain
Tagged: Forum for Gout Patients, gout moving from joint to joint, How Long Does a Gout Attack Last Forum, How Long Does Gout Last Forum, How long to reduce uric acid levels forum
- This topic has 15 replies, 8 voices, and was last updated 4 years, 7 months ago by Leyah Kelly.
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May 20, 2018 at 10:48 am #7706gouthelpParticipant
Here is my gout journey
– I am 39 now. In 09/2016 big toe swelled up and went away in couple of days without any medication. I had no clue what it was. When I mentioned this during my wellness check in 10/2016, my PCP prescribed Uric Acid test and it was 7.8. He identified it as Gout and recommended Allopurinol if a second flare occurs within an year.
– Uric acid result showed 8.2 in 09/2017 annual checkup. Didn’t start any medication.
– NO flares until 03/2018. I am a non-alcoholic and eat red meat(mutton) very rarely. Chicken and fish once or twice a week. Fairly a healthy eater otherwise.
– In 2018, as a new year resolution, started eating more healthy, more protein and started exercising and BAMMM-Gout flared up 03/2018. Uric acid result during flare in 03/2018 was 7.3
-PCP put me on Indomethacin, then methyprednisolone, Prednisone, meloxicam one after other for two months as the pain and inflammation never went down 100%. There is a lingering pain and after waiting for 2 months, In May 2018,
Rheumatologist has suggested to start on Allopurinol 100mg a day and Colchicine 0.6 mg twice a day even with the inflammation.
06/2018 Urid acid result 6.3. ALT levels were slightly elevated 49. Increased Allopurinol to 200mg a day. On 08/17/2018 Urid acid is 5.3 ALT levels were even more elevated to 69.
My big toe pain is still lingering and going for 6 months now. No pain in any other joints. My big toe swells up even with minor physical activity and not able to walk normally.I have gotten X ray and MRI done. MRI showed moderate cartilage loss, marginal osteophyte formation and a minimal soft tissue nodularity (tophus) 0.7*0.4 cm in axial dimension.
In a nutshell moderately advanced osteoarthritis of the MTP joint. However neither the Rheumatologist or the Podiatrist are able to explain the lingering pain. A steroid injection has also been administered as a last resort 15 days with not much improvement.Now here are my questions:
1. Doesn’t it take years of ignoring Uric acid, that Crystals accumulate and form tophus and eventual joint damage? How is my case explained?
2. Is it Gout or the Joint damage to the great toe that is causing this lingering pain? If it is the damage itself, does it mean I will have to live with this my entire life?
3. Don’t all the people with Gout have damage happening in their joints? Then why is that I have this lingering pain for months as opposed to occasional come and go pain.
4. I am afraid about the elevated liver enzymes. Is it time to look for alternatives to Allopurinol due to its side effects?
5. Can I stop the medication completely and manage with diet and exercise.
6. I have starting working out slowly. Will it make my condition even worse?
7. Scared of damaging the joint, am not walking normally but leaning the weight on one side of the foot. IS that OK?Any help appreciated.. Tired of this lingering pain with no answers from doctors.
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May 20, 2018 at 10:48 am #7064Will HeiParticipant
Help! Prolonged and moving gout
I am trying to find out if anyone has experienced the following…
I have been diagnosed with gout about 10 years ago (when I was 20) and have had periodically had gout flare ups, last one was in Oct 2016, but this time, it is very odd, I have had a gout flare up over 4 weeks ago now… but the strange thing about is that it has decided to move around… It started on my left big toe, moved to the top of my left foot, then back to my toe, then my left ankle (worst one), then to the bottom / back of my sole then back to my ankle… and more recently (and worryingly) it has now started to affect my right big toe and ankle as well…
Whenever it decides to migrate, the pain in other joints does ease, but now I’ve got pain in both toes and both ankles… can’t even walk as I was previously moving around with crutches.
I have gone vegetarian completely since the attack, drinking 4+ ltrs of water, eating cherries and celery every day, etc… I have been to the doctors and they have prescribed me with 500mg Naproxen twice a day.. which I understand it is a fairly high dosage.
Considering all of the above, it has not helped to ease the pain, all it is doing is moving around, every time it moves it feels like a new gout flare up… Has anyone else experienced this? or have any advice on how to stop it? It is very frustrating as I have been off work now for 2 weeks and one day I wake up thinking it is getting better and the next day it decides to flare up on a different joint.
For your information, I have been put on 300mg allopurinol before but have stopped it over a year ago due to fears of side effects etc. My uric acid was around 5.8 mg/dL back then, but since I have stopped allupurinol it was hovering around 8 to 9 mg/dL (the latter measurements was taken using a home kit so not too sure of its accuracy).
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May 20, 2018 at 11:27 am #7065nobodyParticipant
Hi!
What you’re doing to reduce uric acid, if it is inadequate (which it probably is, assuming your home testing was accurate) may actually be promoting an unending series of flareups. I have experienced something similar.
What I’d do to stop this nightmare would be to take colchicine in addition to Naproxen. It is slow-acting when you take it after a flareup is well underway but it should help it settle over a few days if you take a large enough dose. It is a dangerous drug so get it approved by a doctor but it is an ancient medication so it should be cheap (don’t overpay for the stuff).If allopurinol doesn’t agree with you, you should take something else. Testing at 8-9 isn’t OK.
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May 20, 2018 at 5:06 pm #7066Will HeiParticipant
Hi nobody?
Is that your nickname?. Thanks for the reply, I have only been trying to control my diet. Limit amount of red meat once a week, reduce the amount of meat generally, no alcohol whatsoever, eating more vegetables, fruits, cherries, etc.
I am pretty sure my home test machine always shows a higher reading, I have compared it with lab results and have also tested it on my friends who have all shown a marginally high reading but all their blood tests have shown normal U/A. I still use the home test kit because the readings are still consistent.
Regardless, I do agree with you that the UA is still higher than it should be and probably has been for the past year or so.
My plan now is to get back onto allopurinol once this episode is over, but my concern is that it has been almost 5 weeks and still no sign of easing… in fact it is getting worse as it is now affecting both of my feet and cannot actually walk.
I still have come colchicine in the cupboard, however this is from 2015… and if I remember correctly I started getting diarrhoea and the doctor has asked me to stop taking it, since then, I’ve only had naproxen.
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May 20, 2018 at 6:32 pm #7068nobodyParticipant
Nobody’s indeed my chosen nick. I’m easily amused.
Yes, your diet and increased water intake is what I meant when I referred to “what you’re doing to reduce uric acid”. Unfortunately such measures sometimes make the problem worse.
In the long run, anything that lowers uric acid is helpful of course but when you throw off an equilibrium, you can end up in a situation like yours for a while.Diarrhoea is a routine side effect of heavy colchicine doses. It’s not necessarily a reason to stop using it but if your doctor recommended you don’t take it anymore, it’s probably best to heed that advice.
An alternative might be the steroid-type drugs some people take to clobber their immune system in the hope of stopping flareups but the side effects are potentially pretty bad as well. In your predicament however, somewhat extreme measures may be warranted…
Can you contact your doctor to request some kind of pharmaceutical intervention, whatever they think is least risky in your case? That or order tests to confirm that it’s really gout. Because if it is gout, one should be able to stop it with drugs and it wouldn’t merely prevent you from walking: it would probably be slowly damaging your joints as well. As bad as drug side effects can be, weeks-long flareups have side effects too.
And taking that much Naproxen for weeks on end puts you at risk as well (have you gotten a blood test to monitor the side effects of prolonged use?). It might be better to take something nastier for a few days in order to be able to give your body a break from Naproxen.
Me, I’d put up with diarrhoea. But my doctor OK’d that approach and for all I know there may be a very good reason while your doctor didn’t. Every case is different.Finally, if Naproxen and allopurinol are the only drugs you’re able to take, consider restarting allopurinol right now.
When you have attacks that last days, waiting until they’re fully resolved to take allopurinol makes sense. But that’s apparently not your situation… -
May 28, 2018 at 6:28 pm #7126Will HeiParticipant
Just providing a bit of an update.
I’ve contacted my doctor who has now prescribed me a 5-day course of Prednisolone (35mg per day), which is a steroid based drug. I have noticed very slow improvements whilst on the drug.
Interestingly, I have been checking my UA every day for the past 3 weeks and my UA was going down whilst on the Prednisolone (around 1-1.5 mg/dL and almost 2units lower by the end of the course)… However the day after I finished my course the pain shot back up and so did the UA.
I thought the Prednisolone was only a immune system suppressant but didn’t think it lowers the UA as well?. If that is the case there is probably an argument to start the allopurinol as dropping the UA didn’t really send the flare up into overdrive. But the doctor did advise not to start the allopurinol until at least 2-3 weeks clear of the flare up.
I am going to see the dr again tomorrow and see what the best course of action is and wether I could get a longer course of the Prednisolone.
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September 16, 2018 at 4:12 am #7742Leyah KellyGuest
ust had prolonged and moving gout in both feet and finally did the prednisone TX for 1 week.
not happy with the results, but less pain… i will go on the Colchichine???? for the next attack and see how it goes.
it is 2 pills and then one hour later one pill. Doc. has recommended Prednisone, or the Colchine for the next time… i am at a loss for it all. i will fill both prescriptions.
it all just scares me as far as taking pills go.
Really at a loss when i get the acute bout…
Otherwise…very healthy and eat well. this last attack left me confused and feeling very afraid of the next bout with gout.
this site helped me through that weekend.
thanks
LK[Posted via replying to email update service. But note that you should not reply to email updates. Because there is no way to post these automatically to the forum]
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May 29, 2018 at 6:23 am #7127nobodyParticipant
It looks like 35mg might be too low. I have never taken that drug myself so I don’t know what taking an insufficient dose would feel like but people are often told to take insufficient doses of colchicine and the problem with that is that, while it does help, it doesn’t stop the flare.
The reco about waiting 2-3 weeks is old-fashioned anyway but how long will you have to wait for that unending flare to be cleared? The main risk I think isn’t the flare going into overdrive so much as moving from one place to the next and lasting way too long… which isn’t much of a risk in your case seeing that it’s already happening. -
June 28, 2018 at 1:23 pm #7221Fred DeerParticipant
I have moving gout like you. I found a cure with diclofenac. My first attack lasted 3 months and was hell. It was never diagnosed as gout as it started in my ankle and moved around. Only a kindly nurse had a suspicion it might be gout and prescribed it for me despite being diagnosed with a sprained ankle.
The diclofenac cleared it in 48 hrs. Might be worth a try. It has negated my gout attacks. I take it only when i feel an onset and then it goes within 1-2 hours. If it’s a strong attack that comes on during the I night that means I cant walk when I wake up I might need 3 pills taken about 4 hours apart and then next morning I’m fine. My doctor just gives a box to keep if I need one or 2.
Without it my attacks last 2-3 weeks.
Changing my diet had no effect for me.
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August 28, 2018 at 8:53 pm #7707nobodyParticipant
Hi,
1.
Technically, you did ignore uric acid for years. But yeah, that was very fast… assuming the tophus is indeed made of uric acid. Do you know that for a fact? Were uric acid crystals actually found in your body or did doctors simply guess that you have a gouty tophus?2. + 3.
Though both the 2016 episode and the circumstances of the onset of pain in 2018 are fairly typical of gout, your pain since hasn’t been typical.
Different people need different doses but 1.2mg of colchicine a day plus regular anti-inflammatories would get rid of gout pain within days in most cases.
Maybe you were unlucky and a nerve was damaged. Maybe that will heal in time. Sorry but I don’t know.4.
I’m no doctor but I’d say it’s not a serious concern at this stage. That said, I would strongly recommend monitoring your ALT for further increases. How is your AST doing?
The culprit may not even be allopurinol. If you’ve been taking colchicine constantly, be aware it also raises ALT and that its side effects can get much more serious if you use it daily for months on end.5.
If you have gout, I doubt you could deal with it without medication. It may be worth a try after a couple of years but considering your symptoms and the suspected gouty tophus, it’s too soon to even think about it.
In fact, you might possibly benefit from increasing your allopurinol dose. Repeating the imaging to see if the tophus is shrinking or even disappearing would be informative as to the effectiveness of your current dose (again, assuming this is a gouty tophus).6.
Careful and moderate exercise shouldn’t make your condition worse. Possibly it might improve it but I would recommend taking great care when it comes to exercising a joint affected by a poorly-understood (at best) pathology.7.
Best ask a professional about that. Generally, it’s not recommended but depending on the circumstances it may be OK. For one thing, I’d say you are young enough to walk funny for a while without endangering your other joints.
Even though using a crutch isn’t recommened either, I used a crutch to spare my foot with (so far as I can tell) no effects other than a faster recovery. A crutch would spare the area under the small toe which may be unduly stressed by constantly leaning on it without support. -
August 28, 2018 at 9:35 pm #7708gouthelpParticipant
Hi nobody,
Thanks a lot for the response.
1. No, the doctors just guessed that it might be a gouty tophus and they said it is a small bean size as per the measurements. Synovial fluid has never been aspirated. Gout has been diagnosed purely based on symptoms and urid acid levels. Is there any way to make sure it is indeed gouty tophus?2+3. Going to consult an Orthopedic, but am running out of options now.Changed couple of docs already with no result.
4.Though AST level increased a bit, it’s still within the range..
5. Does Allopurinol melt the crystals or tophus? Doesn’t increasing the dosage cause more elevated liver enzymes?
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August 29, 2018 at 12:02 am #7709nobodyParticipant
More allopurinol should get rid of the tophus faster if it’s indeed made of uric acid.
If allopurinol is what’s stressing your liver, more allopurinol would mean more stress, yes. But it would only be temporary and 69 is no big deal, especially as long as your AST stays put.
100mg per day might be enough in the long run with a few dietary tweaks. You’ll have to see if your liver settles down or not. Maybe once your liver gets used to the stuff, it’ll handle 150mg. If not, there are as you say alternatives to allopurinol (but they can be hard on the liver too).There’s the aspiration thing but there’s also DECT imaging which can detect uric acid crystals non-invasively.
Or there’s the low-tech option: seeing as how you’ve already been on allopurinol a while, you could also simply stick with it for a few more months and see what gives. It needs some time to do its work. -
August 29, 2018 at 8:40 pm #7712gouthelpParticipant
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September 3, 2018 at 9:24 am #7718Keith TaylorParticipant
Hi @satish-nelakurthi @gouthelp
Thank you for adding great gout questions, and responding to replies.
I think you have had great replies from Nobody and d_q. So it would be good if you summarized each of your questions, saying what you have learned and how it has helped you. Then, you should start new topics with any outstanding questions. Because it’s always better to have separate topics for each question unless they are closely related. Meanwhile, I want to focus on the bigger picture.
I am just dreaded thinking if I will be stuck with this inflammation and pain forever. How can I be sure I am going in the right path?
In short:
– Gout does not last forever if you treat it properly.
– You are on the right path when you and your doctor have a schedule for uric acid treatment. But that takes time. So you also need a strategy for dealing with gout attacks until most of your old uric acid crystals have dissolved.Now, I know that every time you ask a gout question, you get more questions once you learn the answers. That is how the learning process works. But it can soon lead to confusion from an overwhelming number of questions. Which is why I put the plan first. Because that gives you a framework to improve your knowledge and then improve your treatment plan.
More importantly, it gives you a timescale. For example, an average time for gout recovery is about 6 months once you get uric acid below 6 mg/dL. At that time, questions about prolonged or lingering gout pain make sense. But before then, you are just experiencing usual gout recovery symptoms. So the question has much less value than something like “how can I stop the pain in my big toe during my uric acid debulking period so that I can walk without a gouty limp?”
Because then you can focus on effective short-term pain control while also being aware that:
a) Your long-term need to control gout is good because you have uric acid below 6 mg/dL.
b) You have considered that good footwear is essential to minimize damage to gout-weakened joints.So, returning to your latest comment. First, I should point out that you need to play an active role in setting a short-term uric acid target. That is the target for the “debulking period” when you get uric acid low enough to dissolve old uric acid crystals. Then when you reach that target and go for 6 months without a gout flare, you can consider yourself gout-free. At which time your doctor can adjust your allopurinol dose to maintain a safe uric acid level.
My view of a good target during debulking is aggressive. Because I believe in the maximum allopurinol dose to get rid of uric acid crystals as soon as possible. But that is only acceptable when kidney function and liver function blood test results are OK. In conclusion, each gout patient must discuss this target with their doctor and agree a dosing/testing schedule that achieves uric acid debulking safely.
The decision on a safe uric acid maintenance level can wait until you have gone 6 months without a gout flare. However, I believe 5 mg/dL is safest. But individual circumstances might mean you have to settle for 6 mg/dL.
Finally, we have to address that big toe pain issue. So I see 3 possibilities:
1. Recurring gout pain because you have only just started to get uric acid under control.
2. Joint damage from gout.
3. Other arthritic condition.If it’s option 3, it’s beyond the scope of this website. But as there is no other explanation at the moment, let’s assume it is gout-related.
For option 1, I believe a steroid shot should have controlled this, but I’m not personally experienced in steroid use. Generally, the approach is:
a) Stop inflammation spreading (colchicine).
b) Reduce existing inflammation (NSAIDs such as ibuprofen, naproxen, etc).
c) Block residual pain (paracetamol or other compatible pain relief).
So you need to discuss this with your doctor to find the combination that works best for you.For option 3, there is some evidence that gouty joint damage can be reversed when uric acid is treated properly. Unfortunately, this is one of the areas of gout management that needs further research (Chhana, Ashika, and Nicola Dalbeth. “Structural joint damage in gout.” Rheumatic diseases clinics of North America 40, no. 2 (2014): 291-309.).
In conclusion, I think you are on the right track with allopurinol. But you might make better progress if you set a lower uric acid target with your doctor. Beyond that, you should keep asking questions here. Also, consider doing a daily posting of your gout symptoms – even if it’s just a report of “no gout symptoms today”. Because then you can look back to see exactly how your gout is improving.
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September 2, 2018 at 3:04 pm #7717d qParticipant
Hi, thanks for taking time to post your concerns.
In all honesty @nobody has answered most of your immediate questions spot on however what can be added is as follows;1. The question here is how long you have had high uric acid prior to your first attack? Your first attack is just a precursor that you have indeed had high uric acid for many years.
2. It’s next to impossible to predict if you’ll have to live with the pain for the rest of your life because; you have only just started treatment and uric acid is toxic to both joints and muscles. The only way to get an indication is by watching if your symptoms are improving or not with time on lower UA levels. As uric acid leaves the body the associated risks are also removed. Your body is incredible at healing itself by the way. So in short, time will tell.
3. Joint damage is a result of neglecting treatment options. If you treat fast you minimise damage (if any). If you live it late, joint damage sets in. Remember, joint pain whilst uric acid levels are declining (below saturation point) is not necessarily a bad sign. It could be that these pains are actually crystals dissolving and your body is simply reacting to the crystal demobilisation [Do you have light inflammation?]. Think of it as a wound, every time you scratch the same location the pain strikes and lingers but every night you go to sleep the body is healing it.
4. This is fully answered by @nobody.
5. See 4.
6. I cannot emphasize enough how important it is not to put too much strain on joints that have had attacks. When uric acid is dissolving anything exertion can mobilise crystals and an attack can follow. If you can get your heart rate up (cardio) avoiding the affected joint that should be good. At least until your symptoms settle.
7. Make sure your shoes are comfortable. Maybe see a podiatrist to keep weight of affected joints whilst they recover using insoles – you shouldn’t have to limp or change walking habits for too long after an attack.
When you reduce your uric acid levels you are more then just dissolving crystals. You are also cleansing your muscles which are saturated with the stuff. You need to maintain low UA levels for months and possibly years to really detoxify. As levels stay low, you will become more acquainted with what pains will probably stick with you and what pains will disappear.
p.s. If you have old blood test results check them to compare what your general history was like.
Good luck.
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September 14, 2018 at 10:58 pm #7735Chase MaclennanParticipant
1. Doesn’t it take years of ignoring Uric acid, that Crystals accumulate and form tophus and eventual joint damage? How is my case explained?
Uric acid can build up in joints without developing gout. Gout is an autoimmune condition where body starts attacking the uric acid deposits. Once someone develops the autoimmune condition any uric acid build up can trigger a gout attack.
2. Is it Gout or the Joint damage to the great toe that is causing this lingering pain? If it is the damage itself, does it mean I will have to live with this my entire life?
I am not sure, it could be either or both.
3. Don’t all the people with Gout have damage happening in their joints? Then why is that I have this lingering pain for months as opposed to occasional come and go pain.
Maybe, some people have more damage than others. You may still have some uric acid in your joints.
4. I am afraid about the elevated liver enzymes. Is it time to look for alternatives to Allopurinol due to its side effects?
I thin allopurinol has less side effects than some other gout medication.
5. Can I stop the medication completely and manage with diet and exercise.
In most cases gout *can* be managed by diet. It may be easier to take the medication which may allow you to eat a more relaxed diet.6. I have starting working out slowly. Will it make my condition even worse?
I would be cautious if the joint is causing pain when you exercise.
7. Scared of damaging the joint, am not walking normally but leaning the weight on one side of the foot. IS that OK?
I’m not sure if this is a good idea.
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