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Started on Uloric in Jan 2010 when UA was running around 9 for a year. Within 2 weeks UA was below 5 and has stayed there ever since (was on 40 mg, then 80, back to 40). See rheumatologist every couple months; seems to know what he is doing. Cannot correlate flare ups to diet. I don't drink alcohol, don't eat red meat, gravies, shellfish (used to correlate flare ups to shellfish, so cut it out). Drink plenty of water, normal amount of chicken and pork- doesn't seem to have ever correlated to flare ups; fairly healthy amount of fruit, veggies, wheat bread, etc. Seems more to correlate as a timing pattern; about every 4 weeks, flare up; takes about 10 days to get better.
Flare up is always in one or both big toes, bunion joint. Sometimes so painful can't put any weight on it, sometimes not quite so much and use a cane. Even when not having a flare up, seems there is often at least some small amount of residual pain in one or both bunion joints. Diagnostic ultrasound from radiologist have shown no permanent damage or at one visit, not even any residual inflammation (not during a flare up).
When a flare up first starts, I take 30 mg of prednisone for a few days, then taper down. I also take .3 mg of colchicine for a week or so. The prompt dosage reduces the inflammation and pain, but does not eliminate the flare up. Still takes 7-10 days to get mostly better.
I have one kidney. Live donor transplant from 14 years ago. Kidney is health and working fine, but working fine means about 40%-50% kidney function compared to normal kidney function. So, I cannot take more than .3 mg colchiciine per day; can't take ibuprofein, can't take probeniced. Kidney does not filter UA at normal levels which is why I have gout and have to take Uloric. (tried Allopurinol a year ago; bad reaction; thus the Uloric).
I know that even with lowered UA you still have to clear out old deposits, etc, but I don't think I've ever read where it took more than 6 months for anyone. Is it as simple as I am still clearing out old deposits and this will end in a few more months or is this what it will be like the rest of my life? I had a handful of gout attacks 16 years ago; a few colchicine would always clear it right up- looking back now, they were in the big toe, but were comparatively mild attacks. This was for about a year prior to my kidney transplant when I was down to about 10% kidney function. As soon as I had my transplant, I did not have another flare up for 14 years. About 2 years ago, they started again- gradually become more severe and frequent- about 18 months later, I found gout-pal.com; educated my nephrologist, and started on UA lowering meds.
I am 45 yrs old, 5'10, weigh 145 lbs; so normal BMI of 20. Used to exercise a lot but have not in a year due to gout- can't hardly walk 50% of the time; even when not having a flare up would never be able to jog. Used to ride road bike a lot, but can't get the biking shoes on 50% of the time and about the times I am feeling good enough and think I'll get back into it, I tend to have another flare up. When tolerable, I will tend to walk a reasonable amount. I massage the foot (not on the bunion joint) and take hot baths regularly to keep up blood flow and keep mobility.
I told all this to my rheumatologist a month ago and he said to just keep doing what we are doing; not much else medicine wise we can do due to my kidney situation.
My medical regimen is: For antirejection of kidney: Myfortic, daily 5 mg prednisone, and cyclosporine. For borderline high cholesterol: symvistatin. For osteoporosis: fosamax, vitamin d, calcium. Also take a multivitamin for general health and recommended by nephrologist. Also take vitamin c for gout recommended by research and supported by rheumatologist. (100% of medicines are for or from Kidney situation- high cholestorel is not a diet or bmi issue; my kidney's do not filter at normal levels, so cholesterol is high. Osteoporis is due to long time use of prednisone). (I was a perfectly health 25 yr old college student when I learned my kidney's had become infected by strep from strep throat when I was a kid and had been slowly deteriorating; lab work showed I was already down to 30% function already; 4 years later, my then 55 year old mother donated a kidney and I had pretty good health for a lot of years until the gout hit a couple years ago).
I'm getting pretty frustrated and don't want to lose hope that someday, I will be able to walk normally again. I need to renew my temporary handicap sticker that was for 6 months; when I got it I never imagined I would even need it that long; it expired last month. Over the last 8 months, I've spent hundreds of hours researching and educating myself about gout. By far, the best education has come from my friends at gout-pal. I'm hoping someone has some insight or experience to share with me in this case.
Thanks in advance guys, Dave
Dave, I suggest you have a read of some of Nate's posts, the other guy on here with 1 kidney. If I remember correctly, he was on high dose of Allo, which didn't seem to be doing much for a long time and he was having some really bad attacks… until eventuallly it worked. With your lower level of excretion than those of us with 2 kidneys, you're probably getting a lot of deposits dissolving and then being redeposited again as the uric acid continues circulating, resulting in increased number of flares. Probably why your Rheum lowered your dose, but there's only so far you can lower it and still remain effective. You're just going to have to be patient; don't despair or lose hope that it will get better in time.
In the meantime, this works for me
love the picture of the shoes. I needed a good laugh. I 'll try to figure out how to find Nate's posts.
After posting, I read an article that GP posted. It said to use prophalactic colchicine for 3-6 months while clearing out deposits and if you have reduced kidney function or years of deposits possibly longer than the 3-6 months. That's the first I read about it maybe taking longer than 6 months, so that gives me a bit of renewed hope. I am also going to start taking prophalactice colchicine for a couple months and see if I can avoid a flare up.
As a side note, I have found NewBalance brand walking/cross train shoes in the wide width to be pretty comfortable; has more toe area than most. For work/church shoes, I have a pair of Nunn Bush comfort gel black shoes that are also wide, soft in the toe, and comfortable. During mild flare ups, I can still get the New Balance on if I loosen them. Medium flare ups I can still get into the Nunn Bush. Severe flare ups, forget about it; that's a stay home day.
Little update. My toes are feeling a lot better today after only 3-4 days since the flare up. I think hitting it right way with colchicine and prednisone seems to make a big difference. I hope maybe the flare ups are becoming less severe as time goes on. I read quite a few of Nate's posts and found someone elses that took longer than 6 months to get better. So, I have some renewed hope that maybe in a few more months I will have less frequent flare ups. I didn't need my cane today, so that's a good sign.
As a side note, my last name is Kane and my wife's maiden name is Walker, so I guess it was inevitable. I should have named my first child Wheelchair.
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