Too Young for gout!

[Squilliam]

Hi everybody,

First of all, thanks to Keith for maintaining such a nice venue for gout sufferers. I’ve lurked a few times but never posted.

I was diagnosed with gout in April of last year after trying to eat a protein rich diet for weight loss. My flare was definitely concentrated in my toe, but it also tends to effect joints throughout my entire body. Since the initial flare my uric acid levels have been between 8 and 9. I’ve definitely had more days *with* pain than without, and the pain is often intense; almost debilitating. Before the flare I had what I believe were gout-like symptoms, but they were manageable and few and far between.

I’ve tried to treat it with allopurinol, uloric, fenofibrate, losartan and of course simply eating ‘right’. Eating right to avoid trigger foods is seriously challenging, and the side effects of the meds are almost as bad as gout itself.

With the xanthine inhibitors, I feel sick and dehydrated; my eyes dry out bad, and on allopurinol my stools even turn white from the lack of bile. Stopping allopurinol or uloric elicits a flare that can best be described as Hell on earth. On fenofibrate, I also feel dehydrated, and my sinuses become so dry that they become infected. Losartan would be ok, except that it doesn’t seem to have any effect and my blood pressure drops lower than I’m comfortable with.

I’m to the point now where this is having a major, sustained impact on my quality of life. I’m at a tipping point, where I’m just about miserable enough to try to just deal with the side effects of the maintstay meds (probably uloric, since it doesn’t seem to tweak my liver badly). I’m concerned though that the side effects are bad enough that they could end up hurting me worse than gout can; at least near-term.

I guess at this point, I’m just looking for anyone’s thoughts or comments. If you have any ideas, or even just encouraging stories/words, I’d love to hear them.

Thanks again everybody.

[Keith Taylor]

31 too young? I’m afraid not. My nephew, who has gout history on both maternal and paternal sides of his family, started mid-20s.

Gout under 40 is unusual, but not rare.

This, combined with your intolerance of several meds, screams “find a good gout rheumatologist!” I don’t know if you’ve had the 24-hour urine test to see if you are under-excreter or over-producer. That is one of the first things a good rheumy will do. It might explain why losartan has no effect, or it might give you additional treatment options.

You seem overly concerned about side effects of medicines that have safely been used to control uric acid by millions of people. I’m concerned that anxiety brought on by these fears might be the real culprit. However, my main concern is that you might not be getting the right medical support during uric acid lowering treatment. When on such treatment, all uric acid tests should be accompanied by kidney function and liver function tests. The results from these give a skilled doctor the information he needs to make sure that the treatment package is right.

As far as long term concerns are concerned, you seem unaware of the worst effects of untreated gout. Uric acid crystals cause permanent and semi-permanent damage to joints. After a few years, they spread into soft tissues causing skin defects, kidney and heart disease, and damage to all organs. This process is slow, but constant. It happens every day that your uric acid level is over 6.5. On cold days, it happens at lower uric acid levels. It happens irrespective of whether you have a gout flare that day, or not. This is the real danger of gout, and it gets worse as you get older, and less able to cope.

Simply put, a well managed treatment plan that suits you, will save your joints now, so you can enjoy your fifties and beyond. Failure to act now will make your 40s agony, your 50s restricted in mobility, and your 60s less likely to happen.

It’s time to tackle those side effects now.

First off, can we exclude Han Chinese, Thai, or Korean ancestry?

Second, did you start allopurinol at the recommended start dose of 100mg?

Third, do you want to consult a rheumatologist now, or cover some of the basics I have mentioned with your family doctor? If it’s the latter, I can give more detailed help about what you need to ask.

I’ve deliberately avoided diet here. The only bad trigger foods that I am aware of are those high in free fatty acids. They are only one of five important diet restrictions that need to be considered. However, there are also good trigger foods that lower uric acid, causing attacks from partially dissolved crystals. If you have gout at 31, it is unlikely that diet changes will have sufficient effect to control gout. Having said that, I do not know your circumstances. If you want to try dietary control, let’s start with your height and weight, what you commonly eat every day (or photos of itemized food bills), and what you would like to eat, feel you but cannot.

[Keith Taylor]

Hi again, @squilliam

I hope what I wrote was helpful. Please let me know if I need to clarify anything. Sometimes I cram too much information in one post, so let me know if you have any more questions.

Also, it’s nice just to share experiences on a day-to-day basis. Another young gout sufferer just joined. Check the profile for @christopher-tran (Gout Boy). The forums work best when members reply to other member’s posts.

[Squilliam]

Hey Keith,

Thanks so much for your thoughtful reply – wasn’t too long 🙂 And sorry I hadn’t gotten back sooner! You hit the nail on the head with finding a good rheumatologist and knowing if I’m an under-excreter or an over-producer.

What’s funny is that I had a Rheumy already, trying to chase down the random aches and pains I’d been having prior to my first true flare. And would you believe that during my first flare I made an appointment with the rheumy, pointed right at my flared, bright red, gouty toe – and the guy denied it was gout and said I had fibromyalgia. So I ran away from that place as fast I could, and went to an urgent care immediately and they confirmed the diagnosis of gout with blood samples for uric acid and used an x-ray for differential. Luckily they prescribed me colchicine on the spot which great. But yes, I am in the process of getting another referral to a different rheumatologist’s office.

Sure, I’d concede I’m a bit anxious about side effects. But the side effects aren’t fictitious; they have an organic basis. Like I said, I’m just not sure that the benefit of the drugs outweigh the risks of the side effects. Sure, I could take Uloric and just use celluvisc eyedrops in my eyes twice a day, but if the medication is making my eyes this dry, what’s it doing to my other organs?

I feel like that’s a fair question. For example, I went to the beach on 100mg of allopurinol one day and felt faint, like the dehydrated kind of faint. I was drinking water regularly that day, but the only thing that seemed to pull me out of it was drinking a few 20ounce bottles of water in short time.

I actually am aware of the long lasting complications of uncontrolled gout and I’m definitely looking for a path to resolve it long term.

To answer your questions:

To my knowledge I’m not Han Chinese, Thai, or Korean ancestry.

Indeed, I started out at 100mg of allopurinol.

I’m working on scheduling another rheumy consult, but I would love to come to the meeting with better questions that I can ask them. If you have some ideas I’d be most grateful. After the experience with my first rheumy, I’m beginning to think we have to really be our own advocates and actively participate in the process.

Thanks again Keith!

[Keith Taylor]

“ I?m beginning to think we have to really be our own advocates and actively participate in the process”

Extremely wise words!

It’s the first time I’ve encountered dry eyes with uric acid lowering medication. My quick look at the research indicates rare occurrences, but these are associated with allopurinol hypersensitivity. I’m surprised it’s happening with both allopurinol and Uloric. I am left wondering if it is not some form of dehydration associated with your kidneys processing the meds. Is it happening when you are sufficiently hydrated? The best judge of correct hydration is urine color. It should be pale straw colored. Anything darker indicates dehydration.

As you can see, I’m not familiar with what is happening here, but I hope your next rheumatologist can offer better explanations. For want of a better explanation, I’m wondering if you are normally a little dehydrated, then the extra work involved in excreting by products of the meds might be making this worse. I’m happy to be wrong with this, as I’m guessing, really.

As for questions for the rheumy, most are a matter of whatever you are unsure of. To give you a framework:

1. Is there any underlying cause of high uric acid? Culprits are environmental toxins, commonly lead, meds for other conditions, and unhealthy eating. Unhealthy eating is best judged by whether you are overweight, and if you eat more than 20% animal flesh. Purine control is over-rated as a gout diet yardstick – if diet is healthy by modern nutrition standards, purines are highly unlikely to be a factor.

2. If there is no underlying cause, then you have to accept uric acid lowering treatment is safer than not having it (which I think you do accept). A 24 hour urine test will determine if uricosurics will be helpful. Your rheumy will probably insist on 2 weeks without allopurinol/Uloric before the test. Armed with all the facts, it becomes time to choose the right treatment to make uric acid safe.

3. Both you and your rheumy need to be aligned on the best uric acid target, short term and long term. Long term is set at 5mg/dL max by the professional guidelines. Short term, I believe uric acid should be as low as possible for around one year to give the best chance of recovery. This is a plan you can develop your ideas on, in this forum, before and after your rheumy meeting.

4. When treatment starts, dosage has to be guided by blood test results. Anything less is unprofessional. 2 weeks after any dose change, you need uric acid, kidney function, and liver function tests. The results of these not only guide dosage changes, but they also guide review of side-effects.

That should give you a framework for a personal plan. Build around it with questions that are based on your personal history. When you login, use the profile to keep your personal gout facts up to date. That’s your area to keep your personal notes, but it also helps people who respond to make sure advice and suggestions suit your profile. You can also update your profile easily by clicking your highlighted name – e.g. @squilliam

The value of a personal gout plan lies in the detail. Making sure you understand each step, and making sure all aspects are tailored for your personal facts, needs, and preferences. Just keep coming back and develop your profile, before and after your rheumy meeting. You’ve got unlimited access, 24/7, so make the most of it.

I’m impressed that you’re reaching out to other gout sufferers. Collectively, we all make living with gout easier for each other. I’m committed to getting this forum back to being as busy as it was before my accident, 4 years ago. Thank you for helping me do that, with your posts.

[Squilliam]

Hey Keith,

Thank you so much for the reply. Just an update on my situation: I reached my tipping point and decided that the side effects of Uloric / Allopurinol were worth the relief that I could experience eventually. I read about how some allopurinol sensitive patients had success with very slowly increasing their dosage so I decided to give that a shot. I actually split my 40mg tablets in half and took a half tablet every other day for a few days, and just yesterday started half a tablet every day. The dryness is definitely annoying, but I’d rather deal with that than neverending gout flare pain.

So I’m starting to see a little light at the end of the tunnel. The flares have increased in frequency since starting uloric, but the intensity isn’t as bad.

Your questions are excellent! I’ve been a little concerned that I might’ve dosed myself with some lead when I was practicing quite frequently on a [lead] pellet gun last year. I’m not sure what to do about it, or if a doctor would do anything about it, but I’m going to bring it up if only because the timing was very near to when I had my first flare. Chelation maybe?

Anyway, I’ll let you know what happens at the rheumy’s and I’ll try to pop in from time to time in the interim to reach out to the others.

Thanks again!

[Keith Taylor]

“The flares have increased in frequency since starting uloric, but the intensity isn’t as bad.”
That was also my experience with allopurinol.

Has anyone else noticed that flares are less intense when taking uric acid lowering meds?

[Squilliam]

Well folks, the nasty sinus infections / dry sinuses returned so I had to back off uloric. I’m basically not taking it right now. Whatever it is that causes the dryness and infections must be related to the mechanism of action because it happened with allopurinol too.

I’m not seeing a lot of light at the end of the tunnel right now, gout-wise.

[Keith Taylor]

Oh, this is bad news indeed. I can see that dry eyes/mouth are an acknowledged side effect of both allopurinol and febuxostat (Uloric) for a few people. Unfortunately, I can’t find any info on how this might be combated specifically. Generally, there have been several successful cases reported, at least for allopurinol, of overcoming some side-effects. The method is to start with very low dose, then very gradually increase it by tiny amounts. The low doses are achieved by using allopurinol solutions.

This is definitely a case for a rheumatologist, but must be one who has experience of managing allopurinol / Uloric intolerance.

There are good search tools at healthgrades.com and rheumatology.org
First step is to contact them, and ask specifically what intolerance experience they have for uric acid lowering meds.

Getting uric acid down from 8 or 9 without meds is a tall order, but that depends how bad your lifestyle is. If it’s something you want to consider, then I’d be happy to work with you to at least give it a go.

I really hope we can find something that works for you.

[Squilliam]

Hey all, thought I’d pop in to give an update. I figure it might help someone with a similar situation in the future. The ‘tl;dr’ here is that I was able to resume Uloric long term and my Uric Acid level is now 6.2.

After discontinuing Uloric, the pain quickly became unbearable, so I resumed it at half dose again. This time, I did everything I could to avoid dry sinuses. I usually take half a tablet of benadryl at night to sleep, so I cut that out. I also found some saline gel that worked great. With these adjustments I’ve been taking half a tablet per day fairly consistently since March without much sinus trouble. I’ve also enjoyed several beers and a little liquor in the last month or so – so this is a HUGE improvement.

I had my uric acid level checked after a vacation weekend where I had maybe 10-12 beers and it was 6.2, so I’m pretty happy with that. I definitely feel better 🙂

Cheers to everyone. Thanks again Keith!

[Keith Taylor]

So, Squilliam, you were right in your headline – you are “Too Young For Gout!”

Really good to hear from you again, especially with such good news. I hope you’ll continue to keep us updated every few months. It’s very encouraging for other gout sufferers, especially young gout sufferers, to see you overcome the difficulties. I know there’s only you and I in this discussion, but over 40 people per month are interested in your progress.

I wonder if the silent viewers are as inspired by your progress as I am. Do any of you visitors who’ve kept quiet so far feel like sharing your experience? As Squilliam has shown, if you are too young for gout, you are never too late to control uric acid.

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