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Trev,
With Allopurinol and Uloric, by the time my SUA gets under control, my liver enzymes are far enough out of scale to worry the doctor's I've seen. Not to mean that they could all be overly cautious, but it has been three different GP's and two Rhumatologists who I've been through this with. I have yet to get the exact numbers, I really need to do that soon. Krystexxa was the only pro-active treatment I've ever had that didn't effect my liver at all, and I was on it for just over three years.
Zip,
I'm keeping my fingers crossed that there's good news tomorrow! And that my insurance will cover it and it won't be cost prohibitive! I discussed your second point in my address to trev above. I've been remiss in not following up on my numbers. I'll see what I can do about that!
Thanks!
John
I don't know when you every get over that “pit in your stomach” feeling, everytime you feel a twinge. I'm 41 now, and had my first attack at 17, and I'm still not over it. But for me, I really know it's coming on when I start to feel like a joint does right after you twist it, but before the swelling kicks in. I've found that if I take indocine right at that point, it will minimize the attack, for me anyway. I can't be on any of the “life-long” drugs because they kill my liver, so consider yourself fortunate to have the option! I will say that you are lucky to be diagnosed as young as you are, and that you are taking it so seriously, because the long-term damage to your joints, aside from the flares can be hell. I've now got osteoarthritis in my knees and ankles, mostly due to not taking it seriously until I was about 30. But no one told me about the long-term consequences, or what really I could do, besides alter my diet. Oh, and most of what I've read says that diet isn't as large a factor as it once was, but the weight is, so congrats on the weight loss (I know how hard it can be, I'm at 209 down from 235, with about 25 more to go), but the less pressure you put on your lower extremeties with the added weight, the better it will be for you long-term. Nice to meet you, feel free to chat any time you'd like!!
Zip,
My liver enzymes were an issue long before the study came around. I'd tried allopurinol years ago, and actually had a primary who would put me on 300mg for a while, then when my liver enzymes got out of whack, take me off. So basically I was starting and stopping allopurinol about every six months, which felt like it was causing more attacks than it was helping! I do understand your skepticism. The study was blind, but I have a very involved GP who did her own blood work during the trial and found out which group I was in. Savient never told me. But my GP could tell by the bloodwork when I was getting the treatment and when I wasn't. She's the one I trust. And I have to say, if there are any negative side effects to having a zero uric acid level, I really didn't see them in the almost two years that I was there. But I agree, if this gets approved, especially if its fairly cost prohibitive, I'd be happy getting the IV every 8-10 weeks, whatever is required for maintenance!
Goutpal,
I will definitely check out that study. I actually live half-way between Cincinnati and Dayton, and while I work in Cincinnati, it just seems easier to tell people that's where I live since it gives most people a sense of reference. I'm excited to check it out and see if I can qualify! Thanks for the info!
John
I've learned to manage the symptoms, and for me, the level of relief that I get makes it worth the hour or two I have to suffer through with the side effects. Although I also admit that I take it at levels that I won't mention here, levels that frighten my doctors. But I've seen it shorten attacks that would have lasted weeks down to just a couple of days. I'm sure that wouldn't be the case with everyone, and the more I read here, the more I realize that there is something physiologically different about me from a lot of other people, but I just thought it would be an option for someone who wasn't getting relief with anything else. I know, as I'm sure we all do, that there have been times when any of us would try anything that made sense and even some things that don't if it would just take the pain away!
(oh, and the last time I took more than 2 .6 colchicine in a day, I was in the bathroom every half hour for twelve hours. Seems I have a sensitivity to that, too! I'm finding out that I have some very wierd reactions to drugs compared to most of you!)
Oh, and with Allopurinol, 300mg wasn't enough to control my SUA, and like with the febuxostat, any time we tried to go to a higher dose, my liver enzymes got out of whack. Now, it's my fault for not knowing which ones, but I've had three different doctors scare the crap out of me with their reactions to my liver enzymes, whichever ones they are. I'm not naive enough to believe that a single doctor can't be wrong or over react, but when you've seen it from three seperate, totally unrelated doctors, it shakes you a little.
I know that the study group wasn't exceptionally large, but I do know that the double blind was split into 3 groups, one group got the placebo, one got the drug every two weeks, and one alternated between getting the drug and the placebo with every other treatment. The first two groups made up 20% of the participants, each. The third group was 60%. So 80% of the participants were getting the drug on some level. I was in the third group, as evidenced by my GP continuing to do SUA level checks on me throughout the study, but that was only for the first 12 months. After that, everyone, including myself, was offered the opportunity to go onto an extended study, where we knew we were getting the drug. After 18 months, the plug was pulled on that part of the study, and I haven't had the drug since. It's been close to 8 months now, and while I haven't had a flare yet, by SUA levels are back up in the high sevens and rising with each test. Yes, I am sure that the SUA levels were zero, because my primary confirmed it with her own tests. Also, during the first part of the study, we would see values start to return after about three weeks, but never getting over three, but then when I'd get the treatment, by my next bloodwork, they'd be back to zero. During the 18 months of getting it every two weeks, it never went above zero. I can't tell you why they aren't publishing the results, and honestly, even though I have no affiliation with them beyond being a volunteer to recieve the treatment, I wouldn't care if there were risks, especially given the results that I saw. Once there is FDA approval, I will definitely inquire about the lifetime supply, but I've gotten the impression that that isn't really a possibility, especially considering the way they abruptly pulled the plug on the continuation study.
I know how it may sound, but no, I have no financial or other connection to Savient, not even as a stock holder. While I don't discount the possibility that the side effects could be linked, I know for me there were absolutely no abberant side effects. And yes, it was a 2 hour IV ever other week, which, while combersome, completely changed my quality of life. Prior to the study, I walked with a cane most days and had many more physical issues than I have now. I realize that there is a chance that Krystexxa (or puricase as it was called during the study) could never hit the market, and even if it does, I may not be able to afford it, but I have to say, the end of the study left me feeling very scared about my future, considering how fast my gout has accelerated over the years and how relatively young I am. I will say that one patient who went through the study (a woman in her 70's), eventually developed a resistance to the treatment and found no positive effects by the end of the study. I also realize that I am in a vast minority of people who can't take any of the maintenance drugs. Needless to say, I've been on an almost completely purine free diet for over 5 years. My understanding about FDA approval was that it was rejected due to concerns with the manufacturing process, not the side effects or efficacy of the drug. But that's neither here nor there. I am leary at this point of taking anything that may mess with my liver, given my obvious sensitivities, but I will research the other option you mentioned. I know it may sound like I work, or at least am pimping for, Savient, but when you've lived in misery for over two decades and something comes along that completely changes your life, it's hard not to sound like a commercial for it. I'm sure the market for it wouldn't be extraordinarily large. As to my liver enzymes, I only noticed that I had a markedly increased sensitivity to alcohol (which I rarely, rarely indulge in) but even a single glass of wine would make me ill. But that was just the latest one, previously, I had no symptoms, just exceedingly elevated liver enzymes. Febuxostat accually got approval while I was still in the trial, so I hadn't tried it until about six months ago. The 40mg dose didn't even slow down my rapidly accelerating Uric acid levels, but the 80 actually kept it at about 3.9 for a couple of months, but then updated blood work concerned all my doctors concerning my liver and they took me off it altogether.
I had been suffering with gout for over 15 years when I had my first attack in that part of my foot, and I had my wife drive me to the emergency room because I thought for sure that I'd broken my foot. It never occurred to me at the time that it was gout, even though I'd been dealing with it in other joints for years. The longest I've had the effects of an attack last was one I had in my elbow that took almost a year to return to normal. I hope this doesn't happen for you!!
The one thing that has always worked for me that I haven't heard anyone mention yet is Indocin. If I take it when I first feel an attack coming on, it has worked for me much better than colchicine and leads to more pain relief. That said, I have had attacks that have lasted for months (specifically in my elbow). I am intolerant of any of the maintenence drugs, so I can't take Allopurinol, Uloric, Probenicid or any of the others. Hope it feels better soon!!
