Hi, I have Stage 5 ESRD (GFR 12-15), and I have been on the transplant list for almost three years. I generally feel good and am able to tolerate 45 minutes of aerobic activity (swimming) 3-4 days per week.
Recently (within the last few weeks), I started having itching at night that started to keep me up for a few hours about two weeks ago. I have gone back and read prior posts from the last three years, and based on what I read, I can give you the following information:
- My phosphorous levels were mid-range at my last appointment in February. My next blood work is scheduled for the end of May.
-My Calcium has recently been high normal.
- I used to use Cetaphil 2X per day, but now use CeraVe. I just bought Sarna lotion today. Even 10% hydrocortisone cream does not calm down the itching right away.
-In reading on dietary solutions, I realized that I had started drinking Diet Coke 3-4 times per week recently and eating 1/4-1/2 cup of nuts per day. I will be removing both from my diet now.
What else can I do to relieve the itching? At this point, I am willing to try almost anything.
Thanks in advance for your comments/feedback.
Regards,
ILMAZER54
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ILMA54
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HI Ilma54,Watch also your dairy and eggs. Sneaky little amounts build up. And even if you phosphorous is not terribly high, it may still cause you to itch. Everyone's different. I have psoriasis and I use Curel anti-itch lotion. It goes on thick and really sooths.
Oh my! I’m thinking it’s the soda. I had my transplant in September snd my phosphorus is low. Doc said to drink Diet Coke which raised it rapidly. However, I stopped drinking diet sodas when I was stage 3b and still had itching when I was in ESRD. Anyway, I personally don’t think any of the sodas are good for a person.
Also, dairy and whole wheat bread/cereals high in phosphorus.
Sending good vibes that you get kidney soon 😊
You obviously don't know what damage Diet Coke or any diet drink does to kidneys. The sweetener kills kidneys while the chemical colouring leaches the calcium from your bones, kidneys cannot filter the chemical. People with good kidneys should limit the crap to only 1 medium glass per day. Anyone with CKD shouldn't be touching the stuff at all. Any man made sugar substitute will kill kidneys.
If I were you I would go on elimination diet to start. Basically eat ONLY the approved foods for CKD until the itching goes away. Then add in one food at a time, when the itching starts again you know the recently added food is the culprit and you add that food to your "do not eat" list.
Also, I don't believe in taking creams or anything to "get rid of itching." What it actually does is mask the problem, which you don't want, because itching can be used as a way to tell which foods to avoid further damaging kidney's. If you have itching then troubleshoot your diet until it goes away so you know you're not causing damage. You can get better!
My dad has the same issue with itchy skin and has even more intense issues related to his skin as his KD progresses to stage 5. He has seen itchy skin relief using Neem Oil. I hope it helps you too.Also other's mention of diet will probably make a different too,
Sending you positive energy of healing - I hope you feel well soon.
Hi ILMA54, I'm in stage 4 and as the others have mentioned diet is essential, what may bother me might not bother you and vise versa. But knowing nuts and cokes are very bad I too hope it will clear up soon. I have used Temovate/Clobetasol cream for several yrs and I have to say it is very good. But what I always do before reverting to it is apply ice packs to the area and usually that takes care of it. Keep your skin moist with a good lotion or oil as suggested. Wishing you all the best as those itchy sleepless nights are awful.
Hi! If you find that dietary adjustments haven't made a difference, you may want to consider the possibility of allergens. With CKD, the skin is seemingly already sensitive and seasonal and other irritants can quickly produce a severe itchy rash. After many sleepless nights, my husband, now on dialysis, visited his doctor. After checking everything out, my hubby was told to take child's size Zyrtec - apparently adult size Zyrtec can be harmful to those with CKD. Long story short, it worked! So check with your physician. This may work for you too.
Not sure but if you get rid of the diet coke and nuts hopefully that will cure the itching. If not ask if you can take colostrum. I have it for another reason it tastes horrible, but I bought gel capsules and fill them myself and then take them as needed. My itching was due to autoimmune very early stage 1 liver disease. Good luck.
I use Avveno Oatmeal Lotion and an ice bag on my feet will calm the Inflamation from phosphorus ...placing ice bag on my feet will even help with itching on my back and hands as the blood is soothed and travels..
For a great icebag...pour 3 cups water and 1 cup rubbing Alcohol (90%) in a ziploc bag and keep in freezer...it will get icy but will not freeze solid...more like a slushy and molds easily around wherever you want to put it
I am not sure that I ever looped back with this group. It turned out I had bullous pemphigoid, an autoimmune disease that manifests as blisters all over my body. Before being diagnosed (three months before my transplant), I slept with four or five ice packs every night. They started me on 40 mg of prednisone a day for four days. Then I tapered it to 30 g for four days, etc. The blisters would pop, so once they identified a live donor, there was concern about whether my blisters were bad enough to prevent me from getting a transplant.
What is odd if that the 40 my a day did not affect my sleep at all ( Probably because I spent three months on 3-4 hrs of sleep per night prior to this). By contrast, the 10 my of prednisone post-transplant meant I woke up at 3:30 every morning the first month post transplant.
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GFR dropping fast!
A few questions for the diabetics here that are on insulin. 
GFR Fluctuating suddenly. 
Statins 
