17 years, I might be OK
48M. UA at 5.4 after 6 months on Allo, titrated up to 300mg, started at 100mg. I hesitate to flair this as a Success Story, I’m about 8 weeks since my last gout flare, and still in the familiar grip of fear that I could tip over the edge. I have been through 7 doctors, 4 of them functional/integrative, and have been diagnosed with Psoriatic Arthritis, Lyme Disease, CIRS, and ‘mystery autoimmune,’ and of course Da Gout. I don’t think any of the diagnoses were accurate, until I surrendered in January and went back to a new rheumatologist, I flared so badly in my left elbow/wrist/knee I wound up in the ER, scared and desperate like I’ve been during every flare.
Been dealing with this for 17 years, it takes a lot to NOT say it’s ruined my life. I got sober in October 9 months ago, no brain pills, no alcohol, cold turkey. I’m an AA guy now. I got sober, then lost my job, then flared up so badly in January I thought I might end it all. I have much to be grateful for. I started working with a new rheumatologist (my second) in late January—he pulled fluid from my elbow and looked at all my joints with x-ray and ultrasound. He kept telling me it was just severe gout and I kept telling him it was something else, otherwise I’d be better by now, I’ve seen all these doctors and specialists and alternative types… I’ve done extreme treatments and conventional treatments (allo/colchicine years ago but not for long, tons of prednisone, methotrexate, extreme diets, biologics (Humira/enbrel), foot surgeries, water fasts, exotic supplements, psychics, shamans, expensive Western docs, all the tart cherry juice you can drink, celery juice fasts, stupid fad-of-the-day, you name it) I’ve been a mess. The overwhelming/demoralizing/immobilizing pain in all my extremities over time, one year I had 10 visits to urgent care. I have a huge photo album of exploded painful joints. And you’re telling me it’s JUST gout???
I gave up, I told him I would do anything he said. My UA was only at a 7.5 at my first labs with him, but I was in an acute flare. He started me on 100mg Allo and .6 Colchicine as prophylaxis with prednisone as backup for emergencies. I titrated up to 300mg Allopurinol in early May. He said it was gonna be a rocky 6 months or so, things can get worse before they get better…and he was right: I gutted the last 6 months and went through 4 severe flares (wanted to die), 3 rounds of prednisone taper, and a couple intermittent flares that were painful and annoying but not completely debilitating. I got approved for Ilaris but haven’t taken the shot yet, hopefully won’t have to.
Last week I started feeling a little better—the last 6 months have been hell, the last 17 years have been months of hell punctuated by some decent pain free moments. My UA came back at a 5.4, I wasn’t in an immediate flare, and I broke down sobbing. I still feel a little dodgy, it’ll be awhile before I work through the fear and trauma of it all, and I’m anticipating some more uric acid movement and some pain but hopefully not as bad as the past. I’ve watched my children grow up wondering if I’ll be able to be active with them tomorrow, or next week, or next month. I hiked 6 miles with my dog last week, and went to bed that night without the terror that I might wake up flaring because I overexerted myself—I’ve always been an active athletic person and this disease has kept me from doing the things I love, but I tuned up my bike the other day and I’m looking forward to putting my body back together after all this horror.
Life is hard enough, we’ve all been through so much. If you suspect you have gout or bouts of mystery pain that drives you to suicidal ideation, don’t be like me, go see your rheumatologist and get on Allopurinol if they recommend it. THANK YOU FOR LETTING ME LURK HERE AND GET SUPPORT AND ADVICE. Love, health, and healing to everyone.