Gout Trial Stories

Michael Boyle: My Experience in a Gout Clinical Trial

michaelI have my own business and to be off work for a week, still answering the phone and having all the work back up sucks. And then when you do feel better, it’s like coming back from holiday with no holiday. I’m active, and I’m an aggressive skier, and I couldn’t ski very much last year.

In the last couple of years, it’s gotten from a minor inconvenience of a sore toe and limping, to being in bed for the day or a few days. It started to effect work, so that’s primarily the reason that I came in and started researching clinical trials for gout.

The medication I was on before was working, but it was very reactive and it was sporadic. I wasn’t on it all the time, only during flare-ups. It would take longer to subside when you had an attack – it would take days and weeks to get rid of it. It wasn’t effective.

Anytime you’re doing something and you’re having some success, but there’s room for improvement, you have to be open to it. The benefits are huge – a lifestyle change. Before, I never knew what my uric acid level was. Now, I can tell you within a couple of decimal points. I’m educated, and I know more about my condition, which has improved and has been consistently getting better as my uric acid level continues to drop.

If you had an incurable cancer, would you not seek specialists and exploratory techniques? Of course you would, you’d go outside the norm and try new things. The forms that I signed – I read all of it. You can back out any time you want; you don’t have to answer a question if it’s uncomfortable or for any reason you don’t want to. I can walk out of here today and there’s no obligation to come back again. I do it because I benefit. I would highly recommend it. If people are apprehensive, the key is: you’re not obligated and can walk away at any point.

The entire time, [the research staff] did exactly what they said they’re going to. The staff is friendly, the research assistants are great, and the nurse is terrific.

My Experience with Gout: Ernie

ernieGout is a very painful affliction. It tends to come from nowhere, so it’s not like you feel it coming on and you can take a pill to get rid of it like a headache, you know? When it comes, it comes, and it’s very painful.

So, rather than sit there for four or five hours and try to double up or triple up on medications to see if that would help, go to a clinic. I thought, nothing ventured, nothing gained.

I was going to my doctor and was prescribed medication, but I would still have three of four flare-ups a year. I think I had one flare-up in the entire time that I’ve been in the research program, compared to three or four. Being in this program has certainly helped my ability to fend off attacks and improved my quality of life overall.

I guess everybody has certain preconceived notions as to what clinical trials are. You see all the things in the media and certainly they don’t play up the positive side. It’s all fear of the unknown. So I didn’t know if I was going to wind up with three feet or a tail or something. But it has certainly given me a much more positive outlook on what can be achieved through clinical trials. People should have confidence and realize that what’s holding them back may be the fear of the unknown. As long as you follow the directions given, ideally there should be something positive to come out with.

The research staff has been very accommodating when I’ve had to change my appointments. They’ve been more than accommodating. The clinic has a lot of great people.

My Experience with Gout: Richard

richardI had just gone through a gout attack and I would say that it was a severe one. I was not on bed rest, but I was staying at home. I couldn’t work for about one month and I was taking my pills

I was very excited to learn about the gout trial. This is mainly because I haven’t heard a lot about treatments for gout; it was the first time I came across something that could potentially treat gout. My condition couldn’t be any worse than it already was. I had nothing to lose. Since I enrolled, I haven’t had any flare-ups and I haven’t had any pain.

I can understand how crucial it is for the medical research companies to evolve in finding new treatments, new medicine. I think everybody is different, and that research for developing new medicine that can help a broader range of people is so important.