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Living Donation Discussion and News => Living Donation Forum => Topic started by: Orchidlady on November 11, 2018, 09:17:36 PM

Title: Gout
Post by: Orchidlady on November 11, 2018, 09:17:36 PM
My index finger on my left hand started giving me problems about two months ago. The joint was red, warm, and hurt when I bumped or bent it.  I just woke up with it hurting one morning - no trauma or injury. It would get better then go back again to hurting.

I hesitated going to the doctor. I work in private industry, and with the out of pocket a simple doctor office visit will be around $70 cost after the insurance pays - and it's just a finger for pete's sake! I had people tell me it was just arthritis, but I have spots of arthritis and it didn't feel the same.

Finally my husband convinced me I really should get it checked out so I went to my PCP. She pretty much knew what it was but had me get an xray and blood work (so much for getting out of this for $70....) and guess what - it's gout!

She has been a great PCP and really investigates and discusses my situation with the transplant nephrologist in the same building. My husband actually sees her husband as his PCP. She said that the one kidney can put me at risk for high uric acid levels (hubby has some of the same risk but I had no clue it applied to me). Of course, no NSAIDs, and she was a bit reluctant to use any gout medicine at this point due to the one kidney. So I am on a week of prednisone taper, which has helped a lot. Have also been trying to drink more water as I know I don't drink enough. Vitamin C is supposed to help so have been eating pineapple with my lunch. Tart cherries are supposed to help, so morning snack is a fourth cup of dried tart cherries.   Diet is not an issue, as we eat a pretty clean diet and don't eat any of the things on the "no no" list in the literature she sent me.

Many thanks Clark/John for posting the news articles as I was able to search this site and, sure enough, donors seem to have a higher potential for gout.

I guess I am lucky I got this only in a finger and not in my big toe or knee.  Hoping when I take another blood test in three weeks that the uric acid levels are lower.
Title: Re: Gout
Post by: AdrianFR on November 12, 2018, 01:38:11 PM
I have been experiencing pain in my finger joints on and off for the last 2 years or so. It's not that bad but I have noticed that it comes on around the colder times of the year such as now. After I read your post and looked into this further I am pretty sure that this is what is causing my finger joint pain.

I donated my kidney just over 3 years ago. I will keep researching what foods to eat and avoid to help with this.
Title: Re: Gout
Post by: Orchidlady on December 03, 2018, 11:45:50 AM
Just an update - my blood levels indicate there has been a very slight increase in the uric acid levels but it is still above normal. She had checked my kidney function at the same time and doing very well and consistent with acceptable creatinine and gfr. With no family history of gout, she believes it to be a "clearance issue" where the one kidney just can't get rid of the uric acid on a level that two kidneys would. Her concern is that the gout may attack and permanently injure other joints, so now on allopurinol for the gout. It has helped and actually have seen some improvement with stiffness in other joints, so guessing this may have been going on for a while.
Title: Re: Gout
Post by: sherri on December 03, 2018, 05:29:54 PM
sorry to hear about this new pain.

have you reported to your transplant center and asked them how they will make sure this gets into a data base to follow donors.

I believe we are missing a lot of long term side effects from donation. The kidney does a lot more than clear out waste.

I have been having high PTH for two years and now finally found an endocrinologist who is willing to follow my labs more often. there have been articles about donors with high PTH. so frustrating to me that there is no funding for long term donor results. they should be right along with the recipient's labs that are sent in to UNOS.

Title: Re: Gout
Post by: Orchidlady on December 04, 2018, 11:39:23 AM
Thanks Sherri.  I agree - not much follow up being done on us donors on a long term basis. Sorry to hear you are having issues as well. Glad you found someone you can work with.

Appreciate the info about reporting this to the transplant center - I hadn't thought of that. I am going to let my husband's transplant coordinator know. She is very good and conscientious - I know she will get it reported.
Title: Re: Gout
Post by: Lesperance on December 10, 2018, 07:44:59 AM
I believe we are missing a lot of long term side effects from donation. The kidney does a lot more than clear out waste.


So true, Sherri. They definitely should be following up with donors for a lot longer periods of time to ensure they're ok.
Title: Re: Gout
Post by: Fr Pat on December 02, 2019, 12:54:25 AM
I'm just bouncing this thread up to the top, as people on the FaceBook pages have been asking about gout in kidney donors.
Title: Re: Gout
Post by: Orchidlady on December 04, 2019, 11:59:12 AM
Thanks Fr Pat. I hadn't seen that.