Do You Have Gout Triggered By Medications?

[jen-cueva]

Hi Colleen, I am sorry to hear that Cullen is experiencing so much pain. I do also have Gout. I did not have any issues until my Kidneys were affected. I have meds to take that do help my gout. Although, as Kevin mentions, these meds can be tough stuff. I am only allowed to take it occasionally.

I am grateful that his heart and lungs are doing well.

[brittany-foster]

Jen,
does gout impact the kidneys too and that’s why they got worse for you or was it caused by something separate? Just interested in this. I also have some kidney troubles and some cysts on my kidneys that are watched yearly and with CT scans that I get. Kidney pain has to be one of the worst pains that I’ve ever felt.

[jen-cueva]

Hey Brittany,
My gout was after my kidney disease. Gout for me is because the kidneys are not flushing things out as they should be. I am glad that your team is keeping an eye on your kidneys and the cysts. The kidney pain ain’t for lightweights, that is for sure. It can be horrible.

[Colleen]

Gout associated with his kidney disease wasn’t mentioned. He hasn’t been diagnosed with gout yet and I haven’t heard back from the doctors. I’ll give them until after Thanksgiving then reach out and ask if anything has been determined. I wander if that medication that you, @ksmith610 and @jimi mentioned will be ok to take as a transplant patient and with those meds. I guess we will cross that bridge when/of we get to it.

I remember people I know who have struggled with gout having to maintain a strict diet to keep symptoms at bay.

Thank you everyone for the information. I appreciate it!

[brittany-foster]

Hey Colleen,
I hope they are able to give you some kind of answers and treatment plan that would work with his other medications and being post transplant. I can see how that would be hard to manage, especially when medications can conflict with one another.

[jen-cueva]

Hi Colleen, I am sorry that you are still waiting to hear back. I hope that you will get in touch with them tomorrow and get some answers. I know that I take meds, colchicine for gout flare-ups. I took allopurinol daily for some time, but it did not help me for some reason to ward off the fare-ups.

It is tough to decipher the medications and making sure that certain ones will not affect the others. I do know when I eat seafood, which I love, I often experience fare-ups.

[brittany-foster]

Hi Colleen,
I get a lot of ankle and leg pain but for me it is caused by the lack of blood flow to that area and poor circulation to my extremities. Something that I do is heat and cold alternating especially at night. It helps to relieve some of it and the soreness that I get. It definitely is a struggle though and I feel bad that he is dealing with that as a side effect from all of his medications. Is he allowed to take anything for his joint pain ? Does he get swelling from it too ? I know that when my legs get pretty bad they start to swell too.

[jimi-mcintosh]

I too have gout, big toe swells up to the size of an orange, no sleep, no shoes and No real relief until
It runs its course. Prevention is sticking to a specific diet and not eating bad food. Ocassionally it serr RTr ms to spread to other areas. I have been on Allopurinol 150 to 300 mg every day.

Colchicine is a very good old drug, that works for gout, heart inflammation, and today the results of a very detailed research study found that it can prevent some heart surgeries, help lower blood pressure. Has to be taken as prescribed, no exceptions.

[brittany-foster]

Jimi ,
I’m sorry you are dealing with this too. I know that it can be frustrating when the medications seem to work some days but not others. Hopefully the medications for you works more often than not! My uncle suffers with gout symptoms and he has had to go to the hospital for swelling on a couple occasions before he was diagnosed. It is hard and a literal PAIN to deal with!

[jo-ann-white]

Was told my gout was triggered by diuretics so cut back to every other day and increased allopurinol to daily from every other day. Take an Advil daily with breakfast to relieve pain. That and exercise bike help as do compression stockings but still wake up with two painful toes every morning.

[jo-ann-white]

Also need to watch diet and limit water intake to no more than 6 glasses.

[Colleen]

Jo Ann, he is watchful of his diet but unfortunately, due to kidney disease, he must drink 2.5 to 3 liters of water a day.

[brittany-foster]

@colleensteele Wow that is a lot of water. I was given just a liter of fluid in the hospital and was SO swollen for a couple days after that even with just the 1 liter . is he body used to that amount by now? Does he ever have swelling from it?

[jen-cueva]

Hi JoAnn, diuretics can certainly contribute to gout. They work on our kidneys. Gout is uric acid buildup that our kidneys cannot flush out.

I am on 3 diuretics, although we have worked on lowering them off and on. I do not take anything, like allopurinol, I only take meds then I have a flare-up. It certainly can be painful.

I also watch my diet, limiting foods that may affect my gout, like seafood. ( I love shrimp and it’s fresh here.) I am on a fluid restriction of 32 ounces of ” free water” and not much else. It’s rough in the summer and I deal with more swelling and thirst.

[jen-cueva]

Hi Colleen and Brittany,
Sorry, I’m late to the party here, hehe

I am like Brittany and retain fluid easier so I’m on fluid restriction. It’s a balance game for me depending on what I’ve eaten, physical activity, and the weather, etc..

Colleen, I think I recall before that you said that your son drinks that much water. I think that’s great for his body. I believe that it is @jimi, who also can tolerate more fluids.

Just for others, remember that we are all different, as in how much fluid we can drink, etc. So it’s been to consult your PH team.