March 30, 2014 at 11:46 am #16280healeyguyParticipant
Hi All, I need some advice/feedback/comments/input;
I decided to tackle my gout 1 year ago and started taking Allopurinol then. Historically my UA was over 7 and I’ve been under 5 for quite some time (6 months). Recently, on the advice of a Rheumatologist, I added Probenecid to my medication which lowered my UA even further to around 3. I’m very diligent with my diet, am fit and my water consumption would drown a whale. Though, my life has changed significantly over the past 6 months with the pain. My challenge is that I continue to be plagued with pain even after 1 year. furthermore, it’s not so much flare-ups as it is daily background pain with some days being worse than others.
Finally, while I get the pain in the usual places I also get it in the tendons of my arms/elbows, shoulders and tendons of my thumbs and on acute days, in my fingers. It’s not so much in the joints as in the soft tissues.
My questions are:
1) Does anybody else get the pain in their tendons like I have?
2) Is it possible that the elimination of accumulated UA could take this long?
3 It seems to me that the “cure is worse than the disease”. I’m in far more pain since taking allopurinol/probenecid than I ever was before. Prior to taking the medication, I had the occasional flare-up in my toe. Now, it’s constant in my tendons. NORMAL?
4) At this point, I wonder if I’ve created a monster. Thoughts.
Thanks for your feedback…I’m feeling very concerned at present.
March 31, 2014 at 3:53 am #16283
Paul, point 4) is wrong. I can see you are having prolonged problems, but if you had not done something, your gout would be a lot worse, and you would be in a lot more pain than you currently are. You have not created a monster, you are defeating a monster, but it takes time.
1) and 3) You say you are in worse pain than before, but that is what happens with gout. Pain gets worse. Nobody knows how bad your pain would be if you had done nothing. Gout can cause tendinitis. You need to get this checked. You might be unlucky to be suffering long term effects of gout. If this is the case, it is just a coincidence that it is happening after starting allopurinol. Of course, it might be something else unrelated to gout. It’s just guesswork without some medical input.
2) You haven’t told us how long you have had gout. Your uric acid has only been safe for 6 months. The allopurinol you took in your first six months might have helped limit the growth of uric acid deposits, but it will not have done much to reduce them. Being below 5 is a start. I find it shameful that doctors do not react to the evidence, and aim for the lowest uric acid possible. I got mine down to about 3, and got pain free in 6 months. That’s after untreated gout for at least 16 years. If you don’t get it low enough, it slows down the rate at which old uric acid deposits dissolve. While they are still in your body in significant numbers, they are going to cause pain.
To offer any more, I really need better information. How long have you had gout? What is your allopurinol dose. What is your probenecid dose? On balance, I’d say you just need to be more patient, but your extra information might offer other clues.April 2, 2014 at 8:33 am #16295healeyguyParticipant
Hi Keith, Thank you for taking the time to respond to my post. To answer your questions:
1) I don’t know how long I’ve been accumulating UA crystals. I was only officially diagnosed with Gout about 18 months ago, but, on hindsight, I believe I’ve had symptoms for several years. I’ve had accute pain in my right big toe for years which I blamed on a previous injury.
2) With respect to Gout in the forearm tendons. I have had tendonits (micro tears) in my tendons and I wonder if this didn’t exacerbate the Gout in that area? Have you heard of people getting acute pain in their tendons before?
3) I had ultrasound done on my arm (right elbow) and they saw many tears which were treated with a platelet injection.
4) My history with Allopurinol is 1 year. I take 400mg per day. My physician (who is very good) and Rhemtologist sugested Probenecid to get rid of UA that I create myself (without purine input). I started this about 2 months ago. Initially my UA went below 3 but I can’t keep it there. It gradually comes back to about 4. I don’t believe there is anything more I can do with my diet to change this.
5) Do people often take doses of Allopurinol greater than 400mg/day?
6) My dose of Probenecid is 1000mg per day (4x250mg capsules);
7) I wonder if I need to get my UA even lower to rid my body of this pest…I’d rather have a few months of intense pain that have this thing drag on indefinitely.
Thanks Keith….great website.April 3, 2014 at 9:22 am #16296TaveryParticipant
My thoughts to a couple of your responses above.
A UA at 4.0 or less is very, very low. I personally would not try to get it lower. Lots of people do take more than 400mg a day – though this is usually a 300mg dose in the morning and second at night. In most of those cases it is for people will moderate to severe tophi. I don’t believe this is your case.
Getting your UA lower for a few months wont help because it will come back as soon as you stop taking the Probenecid. Your body has a natural UA balance and with time you will automatically return to that balance (though on Allopurinol that number is lower than it would otherwise be). There isn’t much you can do to stop it from going up to that balance point. Most foods have some level of purine level even if very small that you just wont be able to avoid.
Without knowing more about you, here are the key things anyone will gout should be doing.
1. Lose the weight. The majority of gout sufferers are above their ideal weight range. You will have less gout if you lose the extra mass. (though you may experience several flare-ups as the weight comes off)
2. Drink enough water. Keeping your system fluids high will help your kidneys flush the uric acid more easily.
3. Exercise. Movement, increased body heat, increased heart rate, etc…breaks up or “melts” uric crystals so they can be flushed.
4. Consider (with a doctor) NSAIDs that will reduce inflammation so the blood will flow more easily through your system.
5. If you are taking the 400mg all at once, consider moving to 200mg twice a day to keep the drug level more uniform in your body.
6. Time. It sounds like you have several things going on at once. The general change of lifestyle you are going through will start to show results eventually, but it will take time (especially as we get older). Its not a sprint but rather a never-ending marathon. (ugh!)
Just food for thought. I hope it helps!April 8, 2014 at 5:49 am #16299
I know that gout can cause tendinitis, but I’ve never heard of the other way round. Having said that, any damage seems to make gout worse. Certainly, two health conditions together are going to make pain relief difficult. I can’t add much to @tavery’s point 4, except to say that some pharmacists have a clearer idea about pin control than some doctors.
On the allopurinol dosing, it is a fact that on average, doctors have failed to provide a high enough dose to get rid of uric acid deposits quickly. I imagine average doses will rise, as the 2012 Rheumatologist guidelines become more widely read and doctors change their procedures. One thing is clear from the guidelines – doctors should never adopt average or standard allopurinol doses. Gout patients must be treated to target so that uric acid is made safe.
4mg/dL is safe, but it may take some time for old deposits to go. Taking all these points together, it seems to me the best way forward is to carry on and be patient, but also see about effective pain relief.June 22, 2014 at 3:10 pm #16425
We should definetely talk about this more, because…
Tendinitis, exactly my problem. This is what is called an atypical presentation.
This’s also why the final diagnosis of my gout has not been confirmed.
Even worse than this!
I spent a week in a Rheumatology department (rather not to confirm gout, rather to confirm something like ankylosing spondylitis), and nothing was really confirmed but I was assured that it can’t be gout. I even wanted to take colchicine, just to try… they did not concur – “in no way it can be gout” etc.
And I kind of believed them because I had never had any joint pain/inflammation (back then).
A few years passes and… I kind of have joint inflammation. It always gets worse after large meal etc. etc. – it looks and feels like gout. So that is kind of a proof.
So now I’m on 500 mgs of Allopurinol (started just 6 months on a regular basis – before I used to take some but then I always stopped).
It is entirely possible that some kind of additional factor causes gout with this atypical presentation of tendonitis. Simply imagine that there are damages to the tissue that cause chronic state of inflammation in the area. There are multiple consequences of this. Leukocytes are already activated and in large amounts. They are ready to attack and a few small urate cristals may be just enough. Inflammation may cause swelling, thus problems with circulation. This always ends with even more cristal deposits. Why? Imagine a pipe and a narrowing in it. Every larger particle in the sewage gets stuck in this narrowing and then it gets even worse and worse (a kind of bad bad positive feedback). Same thing must be with blood and urate cristals. In this case “the narrowing” is combination of the following factors: initial cristals -> inflammation -> swelling -> decreased blood circulation -> due to decreased blood circulation cold causes even more cristal deposits and then the vicious circle continues…
Maybe we both are genetically inclined to gout associated tendonitis because of inherited decreased blood circulation?
The problem is that after these 6 months of allopurinol my joints (and tendons) are still inflamed…
So, what I am going to do now… I am going to have so-called pulsed ultrasound therapy in the areas of my tendons. Don’t know if this name is completely correct but it’s purpose is to increase circulation, so it may be any other therapy of this kind. Right now I also use ice. But it has very bad side effect – it may simply cause more urate to cristalize. Bummer.
I don’t know if this therapy will be possible, because now I live in a very remote location, that’s why I would like to hear from anyone who had such a therapy performed.
I don’t what else can be done to confirm that this is gout… and to treat it…
Probenecid here (in Europe) is not available (and I’m underexcreter), so what I only can do is to take celery seed extract. It’s a weak diuretic and antiinflammatory.
I’m seriously considering febuxostat…June 23, 2014 at 4:11 am #16430
Milk protein is a good uricosuric. Without uric acid blood test results, it’s hard for me to say more. I would not describe tendinitis in gout as atypical. Untreated gout is almost certain to cause tendon damage.June 23, 2014 at 8:29 am #16435
At least for my doctors tendinitis without joint symptoms is atypical.
For them: no red toe? It’s not gout. As simple as that.
Most unfortunately, because thanks to that assumption I’ve been suffering pain and loosing opporutinities for so many years…
And there still a little confusion but I believe that it is gout. I wish someone could tell for sure, just test me and tell for sure.
Anyways, a few more words on treatment options.
1. It is good to use diclofenac cream and put it in the areas of tendonitis.
2. For many years I used to take vitamins and supplements of all kinds – I also have other problems beside gout. Recently these vitamins finally worked (the correct supplementation was only possible after 23 and me genetic test – I was one of those people who really benefited from this test). But there is one downside of this supplementation over the years: I metabolize glucose and fructose very very quickly. I get hot after even small meal.
That’s crazy. Many supplements have insulin sensitizing effect and I am one prominent example of such an effect. You probably know how fructose causes hyperuricemia – it’s all because metabolic pathways are overwhelmed by fructose and ATP is depleted and ATP is degraded to uric acid. There is also another mechanism – because of energy aboundance purines are produced which then are degraded to uric acid.
In my case both of these pathways are very fast and efficient. That’s why I get a little attack after every meal. I know – small meals frequently would be better but it’s not that easy.
That’s why Allopurinol does not work completely – with 500 mgs of Allopurinol I get 4 mg/dl of uric acid in the morning but not during the day, after meals (I will have to test for it). This dose was self-adjusted to achieve this level. 600 mgs (in divided 2 doses) seems to cause side effects/nausea.
So… this increased metabolism due to vitamins is not a good thing. Like always, too much of good thing is bad.June 24, 2014 at 3:35 am #16440
The only vitamin that I have seen that has proven benefits for gout is vitamin C. http://www.goutpal.com/gout-treatment/gout-cures/vitamin-c-and-gout/
There may be other vitamins and supplements that can help.
When I see your struggles with doctors to recognize I’m reminded of my own fights to get proper treatment. I prepared myself with all the right professional information to argue my case, and finally got the treatment I needed. The difference is, apart from obesity and high cholesterol, I didn’t have any confounding health problems. 900mg allopurinol has always worked fine for me, and I put any early “side effects” down to anxiety. I’m no doctor, so I cannot advise you on your complications. I think the best thing to do is get your doctors to recognize that 4mg/dL is a perfectly good target, then ask for help achieving it. If probenecid isn’t an option, surely they have access to other uricosurics that can support your allopurinol?June 27, 2014 at 2:29 am #16443
I am an underexcreter of uric acid. This was confirmed by 24 hour urine collection many years ago (even with 4 liters of urine I was still only on the low end of the range of uric acid excretion). Besides this, the same thing applies to calcium – am also an underexcreter of calcium with slightly high levels in blood. This means I may have weak kidneys…
But also 23 and me test says that I have mutations in uric acid transporters – but these may also mean nothing and ordinary doctor will tell you that every person has them. That’s the problem with this 23 and me test – the exact impact of these mutations (and sets of mutations) is unknown.
In any case it would be good to have uricosuric added. I asked a few doctors. They do not have any idea about that – the usual answer is: allopurinol is enough, if the production of uric acid is stopped then why would you need an uricosuric?
Could you believe that… they tend to twist the things around, just to get rid of the patient. With gout it is supposed to be no brainer – it’s so common, but because of this it’s undertreated.
The problem with uricosurics here is that only probenecid is doing the good job OR has any clinical confirmation. So if probenecid is unavailable, then simply there is no option – nobody will prescribe anything if they are not certain that this will help. There are many drugs that are supposed to help but the final clinical outcome is that they do not help in comparison to the control group. This is what doctors try to avoid, and I am also concerned about it. If the drug is only slightly effective (and if it is any uricosuric it will be) then it’s no use…
The problem is also with confirming that I have gout. As I described, I am not entirely convinced, the doctors even more so.
A few days ago I came up with yet another idea. I started drinking 5 liters of water a day and turned on the heater in my room. It’s summer here but it’s very very very chilly. And voila, 1,5 days after that the inflammation is gone… or I should rather say the level of inflammation was 30% (so it was a chronic inflammation, not an acute attack) and now it’s like 5%. And hopefully it will get better. I have to keep drinking water…
Keith, what’s the story behind taking 900 mgs of allopurinol?
I’m still thinking about the correct dosage for myself.
The fellow sufferer above wrote:
“In most of those cases it is for people will moderate to severe tophi.”
Did you have tophi? Or this dose was achieved during normal adjustment process?
The problem with me is that I am rather large (120 kgs and 2,3 m tall) and already this translates into the necessity of higher dose. But that’s not all – I also have problems with muscle breakdown (so called myopathy). So this is what hasn’t been taken into account. Even if normally with 500 mgs of allopurinol my uric acid level is 4 mg/dl then after an attack of myopathy it will get higher. So to counteract this, my dose has to be higher. I am also supposed to get drugs for the myopathy (finally) which maybe resolve these problems all together.June 27, 2014 at 8:57 am #16444
My view on 900mg allopurinol per day (the UK max), is simple logic. Gout studies show that uric acid deposits dissolve faster as uric acid levels decrease (http://www.goutpal.com/368/lower-uric-acid-gives-faster-gout-cure/). The current emphasis from rheumatologists is to treat-to-target. Target is based on individual circumstances, and should initially focus on reducing the amount of uric acid deposited in the body and dissolved in blood (the de-bulking phase). I have no confounding factors, so after trying 3 doctors in my group practice, I got the 4th to agree with me. Tophi on my elbows, with a small one on my knee, probably helped my case. However, I believe this is the best approach for all gout patients who can tolerate allopurinol, as it significantly improves quality of life, and reduces the period you are at risk from gout flares.
When allopurinol starts dissolving crystals, it temporarily increases uric acid in the blood. This is basic organic chemistry equilibrium. If doctors can’t see why a uricosuric would help in that situation, they cannot justify their title. Obviously the uricosuric would not be required in the maintenance phase of treatment, but would be highly effective for under-excreters during the de-bulking phase. I just thought I’d check my logic was sound before posting this. I found this:
“Coadministration of allopurinol with probenecid had a significantly greater hypouricemic effect than allopurinol alone despite an associated reduction of plasma oxypurinol concentrations. Australian Clinical Trials Registry ACTRN012606000276550.”
Some general practice doctors have good gout knowledge, but most do not. I always recommend, where there are any doubts or complications, that you consult a rheumatologist. Preferably one that specializes in gout.
It’s good to know that excess water with heat is reducing your inflammation. I’ll update my http://www.goutpal.com/uric-acid/high-uric-acid/gout-sauna/ page to reflect your experience.July 7, 2014 at 6:03 am #16466
The problem is that it has to be probenecid.
Also any from the list here:
would do just fine – but none of these is available in my country.
And if one would like to experiment with furosemide then – suprise suprise – the effect will be just the opposite from the intended.
“These results indicate that furosemide may decrease the urinary excretion of uric acid and oxypurinol by acting on their common renal transport pathway(s).”
And that’s the problem…July 9, 2014 at 11:23 pm #16468
My main surprise is, in this day and age, medicine sources restricted by international boundaries. What does your rheumatologist think about prescribing probenecid for international fulfillment?July 11, 2014 at 2:33 am #16470
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