How to manage autosomal dominant polycystic kidney disease?

Question

Hello doctor,

I am a 23-year-old female. I weigh 122 kg and am 165 cm tall. I was diagnosed with ADPKD (autosomal dominant polycystic kidney disease) at the age of 17, and I have had complications with my kidneys ever since. I last had a CT scan of my kidneys ten months ago, and they found multiple kidney stones after performing an ultrasound of both my kidneys. I still have all of the scans/ultrasounds if needed. I did not get treated for them; I just drank a lot of water and took acetaminophen for the pain. It is important to mention that I am currently living in a foreign country with my husband and do not have access to proper healthcare, which is why I am reaching out to hopefully get better guidance.

I have been having very bad headaches for the past two months. Sometimes I get nauseous or dizzy. I have also been on a pretty strict diet (I have lost about 17.64 pounds in a month and a half), which might be contributing to the headaches. I know a lot also has to do with my kidneys, but I am worried I might have something worse, like an aneurysm. I do not know what kind of test to do to verify that. Please let me know.

I believe I have hypertension or elevated blood pressure. I just measured it and got 138/87 mm of Hg. I would like to know what kind of medicine I should take to lower my blood pressure while not harming my kidneys or liver. If you need more scans or laboratory reports, I am willing to do them as well.

I know I should have a doctor following my disease closely, but I am in a foreign country, and there is a language barrier. Not to mention, I do not feel like I am in good hands. Please advise me and tell me which kind of high blood pressure medicine I should take.

Kindly help.

Thank you.

Answer 1

Hello,

Welcome to icliniq.com.

I read your query and understood your concern.

I understand your concern regarding your autosomal dominant polycystic kidney disease (ADPKD) status and renal stones. First of all, thank you for providing your detailed medical history.

Now, let us start with your diet and lifestyle:

You need to consume less sodium salt, aiming for less than 5 grams per day.
Drink two to two and a half liters of water per day.
Avoid tea, coffee, alcohol, and smoking if you already partake in any of these habits.
You should aim to lose weight by walking and exercising daily for at least 45 minutes per day.
For your cholesterol, I suggest starting Statins (Atorvastatin 20 mg once at night).
For your blood pressure, start with 40 mg of Telmisartan once after breakfast.
Maintain your blood pressure below 120/70 mm of Hg.
For your headaches, I suggest you get a CT (computed tomography) scan of your head followed by magnetic resonance angiography (MR angiography) to check for an aneurysm.
You should also get a family screening for your brothers and sisters to check for ADPKD.
Regarding your kidney stones, you need to meet with a urologist to determine whether surgery is required.

I hope this has helped you.

Kindly follow up if you have more doubts.

Thank you.

Answer 2

Hello,

Welcome back to icliniq.com.

I read your query and understood your concern.

Telmisartan does not have many side effects if you maintain a good water intake. Statins may occasionally cause muscle cramps and, in rare cases, liver injury. You need to continue these medications to maintain your blood pressure and cholesterol. Statins can be stopped in the future, but Telmisartan should be continued for your ADPKD as well. Yes, you can take Paracetamol with these medications. For cramps and pain, you may also take 80 mg of Drotaverine, which is safe.

Kindly follow up if you have more doubts.

Thank you.

Answer 3

Hello,

Welcome back to icliniq.com.

First I would suggest you go for a CT (computed tomography) head, and you may go for CT angiography; it would take less time, and you would not feel claustrophobic . You can contact a nearby doctor, and for sure you can send it to me for any advice.

Thanks.

Answer 4

Hello,

Welcome back to icliniq.com.

So your CT head is completely normal. Can you tell me if your headache pulsating type or associated with nausea or vomiting? Is it more during stress, tension, or some strenuous activity? You may go for CT cerebral angiography, which would tell us whether there is an aneurysm or not.

Thank you.

Answer 5

Hello,

Welcome back to icliniq.com.

So you were treated for cyst infection, and good to know that your infection has subsided now, because your procalcitonin level, as I saw in your report (attachment removed to protect the patient's identity), shows that it is normal now. So, do not continue antibiotics, the CRP will gradually settle down itself. Just keep drinking 2.5 liters of water per day and continue diet and lifestyle changes.

Thank you.

Answer 6

Hello,

Welcome back to icliniq.com.

If the cysts are causing intractable pain and discomfort or getting infected frequently, then it is best to get them ablated. Brain aneurysms are not very common in ADPKD, and the chances of bleeding are even less common. But if headaches still come, then better to go for CT angiography.

Thank you.