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  • in reply to: Too Young for gout! #21485
    Squilliam
    Participant

    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!

    in reply to: Too Young for gout! #19775
    Squilliam
    Participant

    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.

    in reply to: Too Young for gout! #19662
    Squilliam
    Participant

    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!

    in reply to: Its gettting worse and i don't think i ever live without it #19605
    Squilliam
    Participant

    Hey gout boy, I read your story and I totally sympathize man. Hopefully we both can live gout symptom free soon.

    So far from what I’ve read, as long as you can tolerate the medications, xanthine oxidase inhibitors appear to be a mainstay for treatment. Stopping allopurinol seemed to really illicit a very nasty flare, so i’d avoid stopping treatment unless your doctor says so. I’m taking Uloric right now if only because it didn’t turn my stools white like allopurinol.

    Best of luck to ya,

    Squilliam

    in reply to: Too Young for gout! #19604
    Squilliam
    Participant

    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!

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