Gout w CKD3

[CatOnACloud]

I’m posting for my mom, she has CKD3 and I do as well. She’s had gout in her feet for about two years now. Last bout was so bad She’s 75, in otherwise decent health. Two rounds of dex steroid paks, then some serious prednisone amounts (about 2 weeks, tapered down). Her dr wanted her to go up on Allopurinol from 50mg to 150mg, during her flare! I said no, but she didn’t listen…

At 4 weeks he told her to stop all allopurinol which she thankfully didn’t. He hasn’t prescribed more but he made her go to Podiatry again and yup, bad gouty arthritis, with tophi, this is NOT from purines but her kidneys inability to excrete the uric acid. Her levels are steady at 6. They’ve been worse. But she hasn’t. It’s in her ankles, tops and bottoms of feet, far beyond toes now.

Her appt at rheumatology has taken two weeks of paperwork to setup for october 18. They’re that short staffed. Small area, no choice. With her egfr averaging about 44, she can’t take NSAIDS, so shouldnt somebody (!!!) be giving her more steroids? They’re afraid saying hers is advancing too fast and blahdey blah blah but this is causing damage and all I can say is I hope they give her steroids again until the now EIGHT WEEK flare subsides.

I know about the dangers of steroids, but I never thought I’d see her on tramadol either…oh and colchicine now too. So both allopurinol and colchicine…eee gads. Any commiseration welcome thanks much, Adrienne.

[Bassetmommer NKF Ambassador]

Hi Cat, I too have/had high uric acid. I had one flare in my big toe they think was either gout or a spider bite.... but it was painful either way. I have very bad psoriatic arthritis which is what causes the high acid levels. I was put on allopurinol when I started passing stones, which further damaged my kidneys. I am on 300mg and have been for 7 years or so. I also take very day 60 mml daily of sodium citrate to help get the acid levels down. This really works as well. There are other meds to help with the acid level that are not steroids or NSAIDS. I have not had a flare in my feet since and my acid levels stay very balanced.

[CatOnACloud in reply to Bassetmommer]

Ah thank you that’s helpful to know. I know hers is arthritic based and psoriatic is one to talk about with the dr. I’m so glad they’re staying away for you!

[WYOAnne NKF Ambassador in reply to CatOnACloud]

Please know that after a transplant one of the meds you are on is Prednisone, a steroid. It helps with inflammation. Most recipients are on it for the rest of their life. I know steroids have a lot of side effects, but it can also be "good" for kidneys.

[CatOnACloud in reply to WYOAnne]

Oh sure. I have the worst and the best side effects from steroids myself...but they act like with my mom it's the worst thing and now she has no anti-inflammatory. So it's just UGH I wish there were easy guidelines and easy to follow steps. There aren't of course because we are all different. I feel less alone though thanks to ya'all!

[drmind in reply to CatOnACloud]

I had one gout attack on my toe and it was enough for my to never want another. So sorry for your mom's attacks. However, my uric acid level was around at the time. Started on 100 mg of allopurinol and then had to go up to 200 mg to get the level under 6. I've had no major flare ups since, but one or two mini flare ups that lasted just a day. My nephrologist have me the ok to take the allopurinol.

One important thing I know is that there is something about not taking allopurinol or cholchin during or right after an attack. I'm not sure what it is, but please get this information as it may be causing her more pain. Maybe someone on this forum knows how to manage these medications and can offer information .

Gout runs in my family and my brother suffered for years with one attack after another until he got on allopurinol. Meanwhile without medication you're destroying your joints. I had only one attack and was shocked when an x-ray at the podiatrists office showed multiple crystals already in that one joint.

I pray your mom gets some relief soon. As Bassestmommer said there are additional medications to take, but please get the info on when and how to medicate. . Gout pain is almost unbearable. I suffer for her. Keep us posted.

PS Its my understanding that some people have the crystals removed manually by a physician. Can anyone on this forum offer information on this?

[Chucka]

Hi Cat. I have ckd stage 4 with eGFR around 28. I have been at that stage for a few years now. Last year I started having attacks of gout in my toes. At first I didn’t know what it was and went to urgent care for X-ray thinking I had fractured my big toe. After six months my primary doctor (internal medicine) confirmed gout. I met with my nephrologist to discuss options. Allpurinol is a long term commitment once you start taking it. Someone else on this post mentioned there are windows of time at the start of gout attacks when you are NOT supposed to take allpurinol. That’s what my nephrologist also told me. I can’t tell from your description if your Mom was possibly taking it during the times when you aren’t supposed to. You might want to take a look at that issue. I decided to try to limit gout through diet for now. So I am on a purely vegan diet with no animal proteins, no cheese, no dairy etc. Fish is high in purines and is avoided too. So far I have avoided any new gout attacks.

It’s true that kidney disease affects uric acid levels. But avoiding foods that raise uric acid can also help. I also drink a lot of water with fresh lemon as citric acid can help dissolve gout crystals. I am not taking citrate meds yet but would definitely try them if needed.

Best of luck. Gout is so painful. I wish relief for your Mom. .

[CatOnACloud in reply to Chucka]

Thank you! Aiyee. Nobody is agreeing on what the protocol IS here. She's been on allopourinol for over a year, 50mg a day. Everyone agreed she should be on 150mg a day, but when I said WHOA NOT until this flare is done! Nobody listened to me. Hence, she's on 150mg a day and the flare continues...but they also started colchicine now which is helping some. But nothing is making it recede like steroids did...and I guess this is all for my own information because they don't listen very well to me do they?!

[Wandakay72]

I'm sorry to hear this about your mom. I suffer from Gout, as well. Colchicine never worked for.me. I'm on 100mg of Allopurinol but you're not supposed to take it if you're having flare-up. It's my understanding that it will cause you to flare-up more if taken while inflamed.

[CatOnACloud in reply to Wandakay72]

Hi Wanda. Thank you! Her flare receeded and now she is doing better. Damage is not good, but certainly better not in a flare. If you have flares still you may want to go up on allopurinol? I am hearing 300mg if you suffer from significant flares. Whata beast this is hope you are doing ok.

[Wandakay72 in reply to CatOnACloud]

Hey Cat. At present I've stopped taking Allopurinol. I haven't had any more flare-ups. I'm happy to hear that yourother is doing better.

[Blackknight1989]

Any fluctuations in uric acid will cause a gout flair. I’m stage 4 have been since ‘96. First hour flare in 2002. I’ve had it in nearly every joint all toes, elbows, shoulder, knee, ankle, talus fingers. Additionally had the topi the large knots of uric acid deposits under the skin. Finally referred to a rheumatologist in 2006 who fixed it and I’ve been good since. She prescribe allopurinol and gradually upped until 300mg. She prescribed both prednisone and colchicine as prophylactic to prevent another flare.

I much like your mom would flare take the allopurinol which lowers uric acid and flare again. I would aware in 2005 I had gout in one joint or another the ENTIRE year. I know intuitively that’s not true but it sure felt that way. If you can find a good rheumatologist and they can help. I wish her the best! Oh and you too!

Finally have you ever seen a uric acid crystal under a microscope on a website for example? Looks just like it feels like a razor blade. They call it the King’s disease it is of the devil I say!

[CatOnACloud]

I agree, the devil! You have it about the worst anyone possibly can. I am so happy you have a rhuemy that controlled your flares better. Whew, right?! They got my mom in earlier. Last week. I couldn't go, just had carpal tunnel surgery (went well). The doctor looked like he wanted to cry at how my mom has been treated (and not treated). He wants her up to 300mg allopurinol as well, and to continue the colchicine yay got a 90 day rx. He even sent an rx for prednisone just in case. And to CALL him immediately next flare so he can help. So we just need to move up her allopurinol. Soi far nobody wants to chance it. Ugh.

[Blackknight1989 in reply to CatOnACloud]

She needs, but only at the 5-7 day post flare time, a med to regulate uric acid. There are a few now but allopurinol is the original I think.

I also have OA in nearly every joint and have had 22 OA surgeries but nothing causes pain like gout! I would wish that on anyone it’s the absolute pits! Oh and when she starts whatever they prescribe for uric acid stabilization be sure they prescribe the prophylaxis as well. I took prednisone and another I can’t remember but the issue is the allopurinol will lower uric acid and gues what another flare. Thus a specialist if you can.

[Blackknight1989 in reply to CatOnACloud]

I should have just kept my mouth shut cause you got it all figured out. In took the prednisone and colchicine as well. I took those two and worked up from I think 60/90 to 300 mg of allopurinol. If she or you remember to reminder her to take the allopurinol with the prophylactics she should avoid any kind of fakes like she has had. I let mine go to long. Cause I haven’t had any of that pain in almost 12 years. One of the most painful afflictions to endure ever! At least in my opinion. I hope your mom has a smooth transition it’ll change her life to not have to deal with the alternative anymore. I wish you bothe the very best!

[Blackknight1989 in reply to CatOnACloud]

I understand the reluctance to increase the dose. I say if 200mg can control the problem only take what is needed. I have been on it since 2008 no issues.

I’m glad he is offering to help I have gone to the emergency room for a flare. I never want to have it again period!

[Blackknight1989]

good morning and I feel for your mom. Had my CKD diagnosis in ‘96 but gout didn’t start until 2004. By 2006 I went to a rheumatologist and a good one and got fixed. Goal is to keep uric acid stable as any change up or down will cause gout. When you have gout as bad as she does she need if she can a specialist like a rheumatologist to start and monitor the treatment to end that painful annoying as heck has to be from the devil pain! Gout is a form of arthritis more similar to RA than OA, so while another type of doc can treat it, I’d recommend seeing a specialist just as you would for any other chronic disease. I wish you both the best as I know how miserable that can be. Pretty simple just give a couple of uric acid stabilizing meds and start with 50mg of allopurinol slowly up it until the gout never returns. I’ve not had a bout since 2006! I wish you both the best!

[Blackknight1989]

how’s mom doing now? It’s been a week or 10 days so the meds should be regulated I hope no adverse reactions with the prednisone/colchicine prophylactics. I sure hope she is doing great!