Posted , 8 users are following.
I have CKD at stage 5 and my itching has got that bad I don't get much sleep now. I have written to my renal consultant but she is not getting back to me.
I have tried antihistamines, using certain creams and also damp flannels but with no success.
Can anyone suggest anything that has worked for them please?
Many thanks for your time
Runedog
0 likes, 12 replies
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bert74483 Runedog
Posted
Hello, Runedog.
I too am at stage 5 with a GFR of 5 to six and I don't suffer very much from most things but I know about the itching and the leg cramps -- they're enough to drive you insane sometimes.
I have found that quinine sulphate helps the cramps and that an anti-histamine can help with the pruritis, as can, of course, a menthol-based cream or a weak hydrocortisone cream,
Please don't suffer in silence -- let your G.P. or renal nurse know and I'm sure they'll try to help.
God bless and good luck.
Runedog bert74483
Posted
Many thanks for your message sir.
I have tried antihistamines but without much success. Since I refused dialysis my renal team (although they said they would support me) never answer my letters so I cannot move forward with this.
Runedog
bert74483 Runedog
Posted
Hello again, Runedog. I hope you managed to sleep better last night, and I am surprised and saddened you are receiving so little help from your renal team.
I declined to go on the organ register and have also declined dialysis but the local renal team is still very much involved with my care and they are always ready to see me at almost no notice.
I can only suggest that you make a bit of a nuisance of yourself! Remember, it's the squeaky wheel that gets the oil!
I do so hope you will be able to find some relief soon; I know I have been prepared for ever-stronger anti-histamines and a tablet I can't remember the name of (it is an anti-convulsive that seems to be very effective.
I think you might have to lean on them a bit; no dialysis shouldn't mean no treatment.
God bless and good luck.
mikewordman Runedog
Posted
Sorry to hear about your struggles. For me, what worked was a combination of aloe cream (the kind you can easily find in a supermarket) for my skin and Argan shampoo for my scalp. Argan can be bought on Amazon. I also see a variety of anti-itching creams on Amazon which may be of help to you.
I hope that helps!
MrsO-UK_Surrey Runedog
Posted
Runedog, I'm at CKD3, and do get itchy periods, mostly caused by medications for high blood pressure or when adding antibiotics to those medications. At its worst at one time, a skin biopsy pointed to a particular BP medication that was withdrawn. It settled but has just returned due to an antibiotic. Have you tried the prescription-only antihistamine, Fexofenadine? That proved helpful for me when over-the-counter antihistamines failed. E45 itch relief cream also helped somewhat. Dermol 500 to use in the shower as a substitute for soap and DoubleBase gel are both helpful. The latest find for me has been Childs Farm Baby Moisturiser. It's dermatologically-approved for sensitive and eczema-prone skin. It is available at Boots and Super Drug, but it is highly popular so was out-of-stock and Boots and they had to order it in for me. When I went to collect the order, a mother was asking for it for her child. When I asked her about it, she said it was the only thing that worked for her daughter's eczema. It has also been recommended in the Press. I know from experience how awful severe itching is especially when it is relentless and has you walking the floorboards during the night. I do so hope that something of the above proves helpful. Lots of good luck wishes on all fronts.
helen54849 Runedog
Posted
The itching is more than likely caused by high phosphate levels so you will need phosphate binders to take with your food, you also need to be seen by a dietitian who will put you on a low phosphate diet both these things will stop the itching. Can I ask why you are writing to your neph please at stage 5? I was seen for bloods every week from stage 4 on wards, they could see my phosphate was high and I had a dietitian from stage 3. I would phone your renal unit and speak with the consultants secretary and ask for bloods to be done to check your levels and then ask them for a treatment plan. You can rub all the cream on you want but this itching is on the inside and no amount or cream or scratching will help I remember the itch well.
Runedog
Posted
I have seen a renal dietitian who gave me a diet plan.
I have monthly bloods taken so that will go through to my consultant.
I have written twice to my consultant but with no reply.
helen54849 Runedog
Posted
Hi,
That is awful, are you in the UK. If so you can sign up to something called patient view. This is a site where most (not all) of your blood results are available. I find it really useful as it gives your results but also an explanation of what they mean and also if they are up or down the possible reasons for it. When I have bloods done I can view the site and my results are there by 9.30pm. Of course if there is anything of concern my team phone as they have the results quicker. It may be worth asking about that? Your consultant should be empathetic that you will worry about things this is normal and to completely ignore your letters is not good, to get someone to give you a quick call just to say everything is ok or you need to do x would ease your frustration I am sure. I read lots of posts on here where people have issues with their team and it makes me sad as it shouldn't be that way. It is very scary for people like us and sometimes all it takes is for someone to reassure us and say everything is going to be ok. I hope you work things out but until that time things do get better whether you just have dialysis or if you go on to have a transplant it does get better
Runedog helen54849
Posted
Thanks for your message. I am on Patient View so keep an eye on how things are going
Regards
Runedog
chris4432 Runedog
Posted
Hello Runedog, I am taking care of my father, who has CKD stage 5 and bad itching! He has tried many things (mirtazapine, hydroxyzine, many lotions that work for others) with limited relief or heavy side effects. Right now, the best thing that provides the longest relief is "Aloe Vesta" protective ointment #3+. Before that, he used vaseline cream jelly in the white jar with some success (but the Aloe Vesta works better for him). From what the physicians tell us, the itching is the most challenging issue with kidney disease. He just started using gabapentin this week and the results are mixed. I hope the Aloe Vesta helps you!
mel06750 Runedog
Posted
Hi Runedog- I am stage 4 ckd and itching.i find Vicks really good just smoothly spread it on.avoid rubbing hard.i always put it on before sleep and lie on side not back.apparently it's the menthol that does the trick.if I turn over during the night the rubbing of bedclothes returns the itch but just lying on side again the itch goes away in about 10mins.resist the urge to rub or scratch as that always makes it worse.
kind regards
mel (86y)
brianthesnail Runedog
Posted
Hi there
my wife suffers bad with itching as she is now on peritoneal dialysis as her kidney function has dropped to 6 ( yes 6 ) ... however we were advised to avoid any tablets such as antihistimines and were told to use "eurax" which has worked a treat and wont affect kidney function
essentially the itching is just the toxins which cant be removed from the body due to your CKD ...
we were lucky as our gp refered us to a great renal consultant who couldnt do more
we tried calamine lotion and allthough it works it dries the skin and causes rebound intching ,,, go with eurax which is avallible OTC from any chemist
hope this helps