I have gone from 3b to stage 4 ,I have an appointment to see a Nephrologist but it’s not until Jan 17th.
I was diagnosed about 2009 with stage 3 and just told to cut down on salt ..no other advice so I have tried to find out things for myself and very complicated it is too.
i am 75 now with high blood pressure etc. I have asthma and allergies most every day I have had to take an antihistamine for years now for rashes and itching ..then I find out that cetirizine is bad for my kidneys ,
Tried to not take it but the itching is so intense to the point it feels like a burn, I had noticed that the tablets are not working so well is this because my Kidneys are getting worse and are the anti histamines ok or not
Regards Mrs P
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MrsP70
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YOu are in my shoes as it goes with the itching. I have been on dialysis for a year. I had the best labs I have ever had, even pre-dialysis. NO uremia, low phosphorous and potassium was in range. All the culprits they say cause itching. Clearance from dialysis is over the top number, so that is not the cause. I read an article on the NKF about itching and it just seems, they do not have a clue why. I was up half the night itching. It is horrible to live this way. I have attached the article.
kidney.org/news-stories/itc... they have a new drug out there but it is given at dialysis. I do not know what to tell you except boy, it really sucks. I use a cream called triamcinolone. It works for a while.
I tend to have asthma,hayfever and exczema all my life but this is different now I do use a cream but most days need to take an anti histamine ..I do have an histamine intolerance ( it’s in all foods) but I was wondering if I could keep taking them.
Btw I am in the Uk and have never seen a Nephrologist or a dietician Helpyourself. Here until you. Get to stage 4
I am right there with you again. I had eczema when I was younger. When I got older, I developed psoriasis. It is not either one of those things because I have had that for years. And it looks different as I have no rash at all. This itching just started last month. And it presents differently. I noticed it travels. One spot stops and another pops up. I take antihistamines at night. It doesn't help much but it helps me sleep. Call your GP and ask them what to do. The cream I am on is prescribed by my dermatologist who was little to no help either. The Nephrologist just said it had nothing to do with CKD.... So very wrong.
Know what you mean on level 4 CKD until get a Nephrologist. I am in US in Florida, and on Medicare and level 3b but unable to get referral until level 4. This web forum is good source of information and support. Welcome.
I am also in Florida, on Medicare, and I am stage 3B. I have been seeing a nephrologist for years, (since 3A) first covered by my private insurance, and now Medicare with no issues. Perhaps you should check further into things because that does not seem right at all!
I will check into it. Possibly the Medicare rules have changed. I do have a Physician Assistant now who is monitoring my CKD and have appointment every 3 months. I am in Orlando area.
I am also on Medicare - United Health Care AARP - no paid for supplements and was referred to a nephrologist at stage 3a. No diabetes, no high blood pressure, just GFR of 48. So I don't understand why you can't get a referral.
Hi. I just found out that the itching I have been complaining about recently is actually Eczema. My Dermatologist diagnosed it and prescribed Alclometasone Dipropinate, 0.05% cream which has been very helpful. Once a lean amount in spread on the area, the itching stops. BTW I didn't have a rash with this Eczema until after a few weeks and then since its on my back, it was not readily visual. I notice when researching this medication that it is also used for other skin conditions, such as, dermatitis which I also have. Since this cream contains a moderate steroid, please consult with your medical team if you plan on using it. I have not found anything yet to let me know if it is safe for kidney patients. If anyone does, please let me know. Hope this is helpful and best luck to anyone who is seeking relief for the itching. Its a menace which is not taken serious by most of our doctors.
The itching (and all those little bumps) is definitely related to kidney function. My husband's itching appeared as his kidney function declined and it became severe when he was on dialysis. He was allowed, while on dialysis, to take child-sized Zyrtec. (Apparently medication stays in the body longer with kidney disease and dialysis.) I also sprayed his shoulders and back with over-the-counter Dermoplast. I don't know if these products are available in Europe. His rash (and restless legs) immediately disappeared after my husband received his transplant. It was magic. I really feel for everyone in this situation. Hugs.
Hi Darlenia, I have read that kidney issues can cause RLS. I have mild kidney disease and severe refractory RLS. Was he diagnosed with RLS and taking medication for it? I often wonder if my kidney issues are related.
No, my husband was never given a formal name for his restless leg syndrome. It started as his kidneys declined and became severe after he went on dialysis. Doctors, including his nephrologist, simply told him it was probably due to too much phosphorus (or potassium) in his body and to modify his diet and to take binders with his meals. He did that but it still continued. He found that rubbing "Icy Hot" on them helped the most; he also did some exercises (found on YouTube) to calm them. He couldn't drive in the afternoons and evenings when it appeared. Nights were worst - he couldn't focus and couldn't sleep as his rash itched and his legs jerked and twitched. Interestingly, his transplant happened at night. As he was rolled down the hall towards the operating room, his legs literally rattled on the stretcher. My heart dropped hearing it, thinking the worst. Thankfully, a doctor walking alongside with us merely glanced at them, and ignored it. My husband came out the operating room and the restless legs were gone as was the itchy rash. Truly miraculous. I think, in my husband's case, the "cure" had something to do with the regulatory hormone "erythropoietin" produced inside his new kidney. (While on dialysis, he was being given EPO injections to help with that but I think it fell short.) But it's simply a guess. I really hope you can find a solution. The suffering is real.
Thank you so much for that detailed response Darlenia! It is very interesting how that played out. It truly is miraculous! I do suspect there may be a connection. I’m so happy for your husband and you!
I had terrible night itching a few years ago. My Dr prescribed Hydroxyzine and it seems to have helped. I'm stage 4 and on the transplant wait list, but my eGFR bounced up to 32 when I lost weight and cut the caffeine. I'm special though, my CKD is from chronic dehydration. As your Dr. for other options.
I will ask thank you Barbera I really wish I could see the nephrologist sooner and learn some more about CKD I was stage three for years and last year went to 3b and now 4 all I was told in 2009 was use less salt.
Most of us share this experience. Because there is no "cure" they just push us off until we get closer to the point of dialysis or transplant. Doctors do NOT learn about ways to prevent worsening CKD. Targeted dietary changes can slow the progression of CKD. Controlling any underlying condition that may have caused or contributed to the CKD can slow the progression of CKD. Avoiding things like NAISDs and other drugs that may make the kidneys work harder or cause damage can also prevent worsening CKD. Because my CKD was caused by 30 years of dehydration I went on mega doses of anti diarrheals, avoid caffeine and other dehydrating foods. I drink non stop. To make my kidneys have less work I avoid red meat. I cannot tolerate vegetables, high fiber causes life threatening blockages for me since I don't have a colon. I don't take NAISDs. Because of the unique cause of my CKD I don't avoid salt or potassium. I NEED them to prevent dehydration. My phosphorus is on the low-end of high so I take a binder. MY PTH hormone is off (this is a common CKD side effect) and have a drug for that. I am anemic and take double doses of iron daily. I see and endocrinologist and he concurs that my T2D is NOT the cause of my CKD. It was always been in control. but I've reduced by A1C by using a new medication that allowed me to get off of insulin (which leads to weight gain) and lose 60 pounds. My A1C is in the 5s, which is below the diabetes line. I still have diabetes, because it is controlled by medication.
We are all unique and we need to work with different medical professionals to develop an effective treatment plan for ourselves. Unlike some other diseases, we need to be in the driver's seat. I read, read, read. I asked tons of questions.
I love my primary care Dr. I've had her 25 years. But she also didn't tell me I had CKD until I was at stage 4. I didn't see a nephrologist until I had a crisis event and my eGFR fell to 7 and I was hospitalized. I now have a nephrologist, endocrinologist and a primary care Dr. My primary care Dr. prescribed the hydroxyzine.
Barbara, could you expound on your PTH hormone being off? My parathyroid count has become quite low, my vitamin D levels are above normal, but my calcium is within normal range. I’m taking 100 mcg levothyroxine, but I read my chart and one of my Dr’s mentioned hyperthyroidism, when all these years, I’ve been taking a med for hypothyroidism. My test for TSH W/Reflex to FT4 & Tot T3. Is at .35 which is at the very bottom of normal. Could you tell me more about the drug for low PTH, and what you’re taking for your T2D? If you’re not comfortable disclosing this info, I understand, and will pick my Dr.’s brain next time I see him. Thank you!
I'm not a Dr. and frankly I don't really understand how CKD impacts our PTH, calcium and vitamin D. There is a basic article at kidneyfund.org/living-kidne... from the American Kidney Fund. I take Calcitriol daily. It is active vitamin D - which is different from an over the counter vitamin D tab.
For my T2 I started on Ozempic. It takes 6 months to get to the top dose. I then switched to Wegovey, which is the same drug but has a higher dose. I lost 30 pounds, but I still needed insulin and actually started gaining weight. My endocrinologist switched me to Mounjaro in July 2023. Mounjaro has a similar med to Ozempic, but also another med in the mix. I started at the bottom dose and again it took 6 months to get to the max dose. Once I got to the max dose of MJ I was able to go off insulin entirely. Only then did I actually start consistently losing.
These drugs DO NOT independently cause weight loss. They do bring T2 under control and reduce the need for other T2 meds. Insulin makes you gain weight - regardless of what you eat. 5-7 days a week I eat once a day. Per my endo I had to get below 800 calories a day to lose. Beside the insulin, I'm genetically life-long obese and I'm postmenopausal, all of which makes losing weight very difficult. My metabolism is so slow I get chills when I eat and my body sends all my blood to my digestive system. Because I can't eat veggies and have a high carb diet I could only do that by eating once a day. Depending on the day I try to eat at 2pm. On days I can't eat in the mid afternoon I may end up eating two meals or a meal and a snack. Weekends are usually when I might eat twice. I work out at the YMCA 5 nights a week for 2-4 hours. I usually close it down. My endo had indicated that you can't lose weight from exercise. I could never burn enough calories to lead to lead to weight loss. I'm 61 and have avascular necrosis (bone loss) in my knees and ankles and chronic pain. I ride a recumbent bike or stepper. It is the transplant program and their concern for heart health that mandates I exercise consistently. In a perfect world I'd be able to work on building muscle mass to increase my metabolism. Unfortunately I also have an inoperable parastomal hernia next to my ileostomy (which is why I can't eat veggies) and I have an unused dialysis fistula. I have a 5 pound weight limit from both. When you see celebrities that say they lost weight strictly from exercise and diet you need to remember they have personal trainers and personal chefs. They don't have a 9-5 job. I remember Adele saying she worked with her personal trainer 8 hours a day. Real people can't do that. I was 224 in July 2020 and am now 160. I've plateaued again and am not sure how to kickstart more weight lose. I would need to lose another 60 pounds to make the BMI charts happy. That is probably what I weighed when I was 10 years old. Never gonna happen.
Both Ozempic and Mounjaro, like all medications, have potential side effects. I tapered up to allow for careful monitoring and giving my body time to adjust. I see somebody every 3-4 months. I try to alternate between my endo and nephrologist. I only see my primary once a year for a physical and when I have any sort of seasonal or acute illness.
Finally, I have the same, "untypeable response" to those who say GLP 1 medications are cheating and that my very real health problems are excuses. I'm very sick of being attacked here and elsewhere for the choices I've had to make. I've fought hard to stay alive since I was 15 years old and first developed chronic ulcerative colitis. Despite all my health issues I have a master's level education, have always worked full time or more, have a loving family and a worthy life. I hope Mr. Judgy McJudgerson just leaves me alone after posting this.
Thank you for the detailed reply. I’m amazed at your fortitude, in light of your health situation, and I wish I could take it away for you and everyone else that has serious health conditions. Your mindset is admirable. I lost a lot of weight on Ozempic until it turned on me and caused a severe reaction that left my digestive system in a mess for several months. I’m fearful of starting any thing like it, but I’m starting to regain my hard won loss at a rapid rate. I’m hungry ALL the time. ( I have T2D) I have to figure something out. I feel like my doctors think I’m just old, and all they do is analyze my blood labs every three month and hand out the occasional pill, most of which interact negatively in one way or another. From your charts, I see that you have quite the yo-yo pattern going on. You are hanging in there, and I am impressed! Thank you for taking the time to answer me. I do appreciate it.
Please check into an alkaline diet. I had itching when I had a kidney tumor. They removed my kidney with the tumor. But when my system gets too acidic I still have itching. You can check your urine with PH strips, but always do that later in the day, not upon rising. Our urine will always show acidic first thing in the morning. The alkaline foods are freely available on the internet. An alkaline diet is always necessary for having a healthy body. Good luck!
Can you take benedryl? Stay away from meat, too much protein, tomatoes and avacado. Hope that helps. Your dr must have another medicine for the itching!! Good luck
I have been unable to eat tomato’s,dairy,potato and meat for years , this is what I meant by Drs not treating(listening) the whole of you I also have acid reflux and take Omeprazole which I have by accident found may cause my IBSd I have told various Drs about the food thing and I think they probably think I an a hyperchondriac🙄 but I think now , it may be related to my kidney problems.
Trying to eat the right things is a minefield to get through on your own without any advice . I am now on folic acid for the next two months again probably because I don’t have dairy or maybe it’s because for the past Five years at least I have had diarrhoea nearly every day .
I try to understand what is happening and try to sort myself out and this is what I meant by Drs not looking at the whole picture , just dishing out tablets for different symptoms and one thing causes a knock on effect.
Sorry about the long post 😊
Ps. I take cetirizine for the itch and use e45 itch cream
immodium and buscopan for the IBSd then read the other day I shouldn’t use buscopan and cetirizine with CKD
Trying to cut out the omeprazole has resulted in the more intense itching I think
Mrs. P, you are so right about the lack of support's from medical professionals who ignore the Whole person view! I am at level 3b and I experience rashes often.
I now take a witness with me to be my medical appointments and I take pictures of break outs- that way I am to documenting and it helps me to avoid being diminished by medical professionals. I wish you the best in your journey.
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GFR dropping fast!
Is this the end of weight-training? Ugh. 
GFR
