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Hi, I'm new here, and have CKD with Lupus. I had the horrible itching problem head to toe for over a year. It drove me nearly insane and I have scars from scratching. After being hospitalized and getting my potassium and phosphorus levels under control, the itching is almost gone! I believe I have read that extreme itching can be a side effect of the high blood phosophorus levels. I take a phosphate binder for now and avoid all dairy and foods with high phosphates. Hope you get some relief soon.
Replies to "Hi, I'm new here, and have CKD with Lupus. I had the horrible itching problem head..."
Welcome to Connect, @beverlynm,
Thank you so much for joining this discussion and especially for sharing such valuable insight. I found an article related to CKD and severe itching, in one of the scientific journals, which might interest you, as well: http://bit.ly/2rOxKm2
@beverlynm, we look forward to getting to know you better; when were you diagnosed with kidney disease and lupus?
@beverlynm Were the phosphorus levels normal before you started taking the binders?
@beverlynm Were your labs for both potassium and phosphorus with range? My husband has not taken binders, as his labs have always been good. He could not take food by mouth for almost a year because his salivary glands were destroyed by radiation. He has devised a technique of using bitty, bitty sips of water with food so he can chew. He is ready to get rid of the PEG tube. He eats many small courses throughout the day.
His itching is truly painful, but his labs remain within normal range. Wondering if normal is normal for the individual. The doctors are not very helpful, as IT IS ONLY ITCHING!
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@beverlynm, I am happy for you that you have found the cause and especially relief of your itching! What good news and what a relief this must be for you:-) And before I go on, I want to welcome you to Connect. We are about sharing and supporting each other, but it sounds like you already know that. Thank you for sharing this information with us.
I once had extreme itching, but for another reason (liver disease) and I know how awful it is! My family said that I looked like a bear when I rubbed my back against my favorite doorway scratching post!
I am sorry that it took a hospitalization for you to get a diagnosis for the cause. Do you mind if I ask you a question? with CKD do they routinely check for potassium and phosphorus levels?
I hope that you continue to maintain your protocol for relief. And I wish you successful treatment and containment of your CKD.
I would like to invite you to look at some of our other discussions. And please know that you are most welcome to join in anywhere with questions, or comments, or just to offer words of encouragement to any of us.
I look forward to meeting you again, soon.
Rosemary