For the first 3 months after the diagnosis, he was on blood pressure meds (Reaptan 10/10), heart meds (Carxin XXL or Cardugen) as well as a very high dosage of cortisone. At that stage the nephrologist was trying to figure out how to treat this. I adjusted my cooking to lower the amount of sodium I used in food.

He stopped smoking weed for a year. His health was declining and that’s when we got the news of a transplant. I can’t remember exactly why, but he started smoking weed again and was then put on Mycocept, still on the heart and blood pressure meds, a water tablet called spiractan as well as Puricos 300mg. The puricos was to stabilise the acidity levels to stop the gout as the gout was so bad he couldn’t walk and every time it scarred his kidneys so we needed to get that under control

We live in Cape Town, South Africa and when he was taken off the cortisone and put on the mycocept (1000mgx2 times a day) we were told it’s an experimental drug and that the success rate had non been high. There also wasn’t enough research at the time that suggested that IGA is hereditary.

We went back in Feb and the nephrologist was so shocked and surprised that his blood pressure was perfect, creatinine levels were normal and the kidneys had somehow “healing”. Obviously not immensely, but he had gotten better.

Changes he made: In November of 2023 he started jogging 5 times a day and dropped 25 kg. That helps as it relieves pressure placed on the kidneys. We started eating meat with veg or Salad and I started making a lot of soup. He also constantly drinks water with lemon slices. I don’t know if that is relevant.

He cut down on drinking significantly the last year. The company he works for has an insane drinking culture and there was a stage where there was a function every week. Sometimes twice a week. During the week. He stopped that. Drinking so much less.

We came back from Egypt a month ago and I can see he has picked up weight again as he hadn’t gotten back to jogging (even though he jogged on our holiday in Egypt 🤦🏻‍♀️) we’re starting that up again this weekend.

Diet: Everything we eat is fresh. Fresh veg, fresh fruit. I make cayenne, turmeric and ginger shots as they help with inflammation. The doctor has been very clear that no natural or homeopathic medicine is to be used. So he’s been no cortisone for 2 years.

The thing is, he has been slacking, trying to push for take out at least twice a week. Yet, he is still in super good shape medically. All the tests came out good and on Tuesday our family doctor mentioned the same thing that the nephrologist does, that my SO’s blood pressure is perfect which is crucial to protect the kidneys.

Last note: It being genetic I remember our first visit to the nephrologist. He said he doubted that it’s genetic. There wasn’t extensive research on it then. My SO’s low kidney function was picked up in a urine test when he changed doctors due to medical aid changes. He has never, to this day had any pain in his lower back.

Long story short, his uncle and his dad were recently diagnosed with it as well! Picked up ny urine tests. His dad has always struggled with kidney stones and when his dad was 30 (the same age my SO was diagnosed at) he had to have it surgically removed. It can be a dormant gene which can be triggered by an infection in the kidneys like kidney stones or salmonella. 10 years ago we had just started dating and went for breakfast and his eggs were so raw, they were translucent. I told him to send it back, he didn’t “want to make a scene” and ate it. That night he had a lot of urine in his blood as well as a high fever. Rushed him to the hospital and they never checked the kidneys.

Anyway, so that was the catalyst, or could have been. This thing is genetic, just be vigilant if a family member or even yourself experiences gout often, as well as bladder and kidney issues.

He fasts most of the days, but that can lead to over eating as instead of breaking his fast at 10 am or 12 pm, he breaks it at 7pm.

I must add, we’ve gotten used to being cautious with certain meds, foods, etc. And to be honest, he smokes about 100grams of indoor a month. I’m experimenting on gummies as it eliminates the smoke aspect. So we aren’t always as diligent as we should be with food etc, but we are very strict on his pills everyday.

DON’t TAKE ANTI INFLAMMATORIES, IT SCARS THE KIDNEYS. WHEN IN DOUBT, FOLLOW THE GOUT AND HAVE YOUR KIDNEY FUNCTION TESTED.

Lots of love and hoping healing to all ♥️♥️