itching

[MrsP70]

I am in the UK and have just been told

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

[Bassetmommer NKF Ambassador]

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.

[MrsP70 in reply to Bassetmommer]

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

Thanks for reply

[Bassetmommer NKF Ambassador in reply to MrsP70]

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.

[MrsP70 in reply to Bassetmommer]

I feel that no one treats the Whole of you ..if you understand me

[orangecity41 NKF Ambassador in reply to MrsP70]

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.

[TableTennisMama in reply to orangecity41]

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!

[MrsP70 in reply to TableTennisMama]

I am in the Uk and this is how it is with the NHS

[orangecity41 NKF Ambassador in reply to TableTennisMama]

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.

[Lucido in reply to orangecity41]

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.

[orangecity41 NKF Ambassador in reply to Lucido]

It might be Florida related for Medicare rules. So far the PA works for me and have a urologist who monitors my CKD.

I will check into since have different Advantage Plan.

[jodaer in reply to orangecity41]

I have original Medicare and I don't need to get a referral to any doctor.

[drmind in reply to Bassetmommer]

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.

[Bassetmommer NKF Ambassador in reply to drmind]

th lotion I am on and had cleared is also a steroid. Doesn't help much. But thanks

[Darlenia]

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.

[Merny5 in reply to Darlenia]

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.

[Darlenia in reply to Merny5]

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.

[Merny5 in reply to Darlenia]

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!

[MrsP70]

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.

[NWRobin]

Dear MrsP70,

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!

[MrsP70 in reply to NWRobin]

Will look into to that and give it a go thanks

[KajNybom]

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

[MrsP70 in reply to KajNybom]

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

[Pigletmom in reply to MrsP70]

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.

[CuriousCKD]

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!

[CuriousCKD]

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.

[WildIris]

I recently had a bad, very itchy rash as part of an allergic reaction to a drug, Paxlovid. Antihistamines were the most helpful for the itching, (until my doctor put me on prednisone, which did cure this particular rash). The topical gel with diphenhydramine hcl was the most useful. I was also taking a tablet with loratidine 10 mg, 1 a day.

There are a lot of different antihistamines, broadly classed as drowsy or non-drowsy, but none of them have kidney warnings. I have been taking "doxylamine succinate" for years to help me sleep, with no perceivable effect on my eGFR, though my next blood test is in January, to find out how this whole rash ordeal has affected my eGFR.