I finally got an answer from my dermatologist I saw over a week ago. I was lucky it was my annual appointment. Otherwise, I would have had to wait until April. The problem was this blasted itching.
Just to fill in the blanks, I started itching on the back of my head at the beginning of the month. I thought it was dry scalp or psoriasis. But then it was not presenting like psoriasis. It began to travel and anywhere I was warm, like on my back sleeping, it would itch intensely. Then it just spread everywhere. I tried Sarna cream, and then another prescription cream, triamcinolone, and although it worked sort of well, it was short lived. I was grease up like a pig. My scalp still itched bad, and I did not want to put that in my hair. So, I used talc with menthol or tea oil spray for itchy scalps.
So yesterday, I get a call from the dermatologist, and she sent to the pharmacy this new prescription. She said it would work great. I rushed down to get the medicine and got home and researched it. Said it was used for addiction recovery, alcohol withdrawal and way down on some sites it mentions itching and weight loss. Yahoo, a bonus. Weight loss.
I decided to pop one in my mouth at 6 pm. All I can think of the song "White Rabbit" "One who makes you smaller and one that makes you tall"...Holy smokes. I have not been that stoned since 1970. And instead of having a sedative effect, it had just the opposite. I had skipped taking my melatonin, so after two hours of lying there in the dark, holding on to the bed sheets, I got up and took it. That finally helped to get me to sleep.
This morning, I am still sick to my stomach. The itch was gone all night and this morning, it is starting to reappear, but not like it was. Tonight, I will take only 1/2 and see what happens.
"Go ask Alice"......
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Bassetmommer
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Holy cow I've got the itch too but the GP says it's dry skin so I'm trying the stuff you put on in the shower for dry skin. We'll see. I also put on hydrocortisone cream all over at bed time and take a benadryl so I can sleep.
Well, dry skin is part of it and moisturizing helps. But this itch is much more than surface. I did a lot of research on it, and most doctors do not know what causes it and what gets rid of it. This med I am on stop the mechanism that causes itching. It was very amazing going from bleeding skin to no itch with one pill...be it that it knocked me on my butt. As your doctor about it because it is not JUST dry skin. It is call CKD-aP (associated Pruritis) and over 30% of CKD patients get it. Some are on dialysis, some not. kidney.org/kidney-topics/ch....
Bassetmommer, please forgive me for laughing. I know it's not a laughing matter but... you have a way of putting humor in your posts I itch a lot but it moves around and mostly when I'm trying to sleep..
Jodaer, Your reply made my day. I always try to find humor in things. Unfortunately, I do often even if it is inappropriate.
Yes this itch is terrible. I work on the committee for NKF on hot topics and this is one. How many people have this is stagering. One YOUTUBE video with a Nephrologist said 80% of patients get this sometime in later stage CKD. There are things that are obvious causes such as high phosphorous or uremia. But.... a lot of patients, like me, do not have either. Many docs simply answer to do more dialysis, but that can aggravate the situation as dialysis may be the cause and it dries the skin. I have always used moisturizers and although slathering up helped, it did not cure. And also, the itch is stronger at night, which points to a internal mechanism not working, like nerve ends that seem to hurt more at night, because they do. Ever had a tooth ache and tried to sleep?
There is a new product out that is given as a bolus at the very end of dialysis. What ever mechanism that causes this, this product puts it back in. However, you have to do every time you after you do dialysis but before you pull needles, and it is expensive. They use it mostly in center. They are coming out with a pill of the same product. Difelikefalin. "Recently, difelikefalin, a peripheral restricted and selective kappa opioid receptor agonist, proved its efficacy in the treatment of uremic pruritus" Gabapentin is also a common drug for this issue.
Don't settle for a passive answer from your doctor. Just because THEY do not know the cause, does not mean YOU have to suffer.
I'm glad I made your day. Like you I find it better to laugh about something than to cry over it. Thanks for the info. I didn't know all that about itching. I will probably need it =down the road.
Oh my goodness, how ridiculously absurd!I am sorry to say I nearly laughed when reading that...out of interest, what is the medication you are taking? I ask, because I have been suffering from dreadful itching for years - I think it sounds very similar. It could well be that it started after my kidney ( I only ever had one working one anyway) started failing - about thirteen years ago. I would say that it is now worse - if anything - since dialysis.
Like you, any for if warms starts me itching. I try to wear as few clothes as I can manage - whatever the weather. I am actually really looking forward to the winter, during which time I will still be in shortly sleeve shirts and shorts a lot of the time, when at home. I dread being in bed ( that's the worst) - I have only one pair of thin cotton pyjamas I can bear to wear, and can't use a duvet - I lie in top of the bed. Even then I itch. My wife says she can hear me scratching whenever she is awake. I almost feel sometimes as if it is the touch of any material that makes me itch....I come out in tiny little heat spots all over my legs.
What I think I am saying is that the idea of being stoned - if it helps the itch at all sounds wonderful.... especially if it gives me a bit of relaxation from this permanent punishment.
If you tell me what the medication is, I will go strait to my GP and try to get him to let me try it. So far I have been through every known moisturiser ( and steroid creams) - some of which give temporary relief....
Yup, Mich, right there with you. Clothes, especially elastic, are really troublesome. NO more Latex leggings for me. hahahahaha... I am dying here, me in Latex leggings? I would not want to go near any fields with cows in it, especially a bull........
And I wear a Mumu at night so that helps. But before I was on this med, my waist bands drove me crazy. When I went to change my clothes one night, I literally scratch myself raw there and it left red marks. From scratching, I have these little red dots that appear from breaking the skin. That is a telltale sign of this particular itch.
So the drug is Naltrexone. Been around for years. It is used to break people of addiction. Ignore what the information that comes with the drug, because it is mostly about addiction. And it is inexpensive. I had to really dig to find out about the itch relief information, but it is out there. It numbs your receptors that cause itch. Ever see a junkie? They scratch all over and rub their noses a lot.
Because I was so desperate the other night to take it... I did not do my homework. And so I took the full dosage. well, I almost broke out my old hooka.....
I am joking around of course but watch out. I took 50mg, which is what the prescription is for. Yesterday, I had the residual hangover. But I also did not want to eat, which for me is a bonus.
I did my homework (too Late) and it recommends titrating it up at first. I took a half last night. 25 mg. PERFECT. Had some itch on the back of my head, which I got up and put some menthol talcum powder on the back of my head, and that was just enough. And one area, at the fistula, itched and I just gently rubbed it, and I was ok. It will get better as the drug builds up in my body.
I slept 10 hours which is a ridiculously luscious amount of sleep. I needed it. This morning, I have some itch, but lotion will tame it until tonight.
I am amazed at how many people have this and just suffer through. I am a pain in the butt to my doctors because I do not let things go when I know there is a better answer. Yesterday, I saw my nehprologist and she changed her tune about itching. I hope she helps her other patients who have this instead of saying she does not think it has to do with CKD.
Very glad you're being careful about dosages, Bassetmommer. My hubby was told that dialysis doesn't filter out/remove meds very well so dosages have to be cut way back. You may want to check with your nephrologist to see if your situation could be cumulative - where your adjusted dose may build on the prior days amount still left over - so one overdoses again days later. It's a bit scary to hear what you experienced. This community doesn't want to lose you! I'd like to add that it's a truly a gift that this med works - wish my husband knew about it back in the day.
All drugs have something called half-life or how long it stays in your body. And You are correct, that with EDRD, you do build up levels of many things including vitamins. That is why I do monthly labs. We all should who are at end stage or dialysis. My situation was actually fine.... I wrote it tongue and cheek. I took what was the presribed dose, just did not expect the reaction. It did exactly what it was supposed to do. Numb me. I just did not expect it to work so well. I am fine. But I am very cautious about drugs. I usually do due diligence and research anything that goes in my mouth. I was just too anxious to wait. Thanks for the kind words. We are all in this together.
Thanks so much for that information; I will try to get my nephrologist to talk to me ( they often have one at the satellite unit where I have dialysis locally - a DaVita centre, sub contracted by the English National Health). I hope you don't mind if I show him your post as "evidence".Like you, elastic drives me crazy - underwear is torture. I wish I could persuade myself to go commando! 😜 Like you, I break the skin and have all these horrible patches. I cut my nails twice a week, but even the tips of my fingers are enough to do damage. Like you, I have been told the the itching is nothing to do with CKD...
I will try - frankly, I anm not hopeful. Frankly, our health Service can often refuse see past it's own nose. However, life might be a little more bearable if I didn't itch so much - sometimes it even feels like burning . Just now, I have got up from a rest, and my pyjamas trousers are rolled up to the knee to cool the burning patches on my legs and calves.
Many thanks - I have been trawling too, and found the links. I want ammunition for the nephrologist. I am also thinking that some of my fellow patients at the unit may well be silently suffering....I'll ask them.
I'll let you know how I get on, though it may be awhile before I can see someone.
Turtlelover, nope... as I said, I do not have high phosphorous, It is at 4. It was higher, even before dialysis and I never had the itch. So if you read through what I wrote, I explained that it can be the cause or not. Its the not that makes this difficult. Doctors reach for what they know and this has been an issue for years with this itch.
wow what a side effect from medication to funny white rabbit song but I could picture your night from it. Hopefully your half a pill will be better keep us informed.
As you can see, it definitely isn't a case of potassium being too high; for once it is too low - no idea why.On the plus side it means I can wallow in tomatoes - the forbidden fruit
Mich, it is not potassium that causes itch. It is phosphorous and urea or BUN or UN...all the same thing. Your GFR is 18? Wow, I would not be on dialysis with a 18, I started when I was at GFR of 7. I had no symptoms, no edema. It was all lab numbers that made me start. My GFR now is 6 on dialysis,
That egfr of 18 is post a 4 hour dialysis session - it is usually 7 or 8 pre session. Normally, I would expect to see 30 post session - as you can see from the above graph....
Graph showing pre and post dialysis egfr, to check how effective the dialysis is.
Wow, dialysis really works for you. BTW, I took a 1/2 of my wacko pill. NO symptoms, not stoned and NO ITCH. and it pretty much lasts through the day. Some spots but lotion get them quiet.
My husband and have both gone through this itching thing. It is hell but your post was so funny I read it to him. Greased up like a pig! We both finally cleared up. They said he was allergic to blue dye and soap scents. I am the one with stage 4 CKD. They could not diagnosis me. Thank you for the name of the medication you are taking, because if it comes back, we may be needing it!
I tried all sorts of prescription ointments and it just finally cleared up. Clobetasol Propionate was the strongest ointment I used. But it's not for the whole body. Also Triamcinolone Acetonide. Maybe that was already mentioned.
Grayson, yup. I have both. The clobetasol is for the inverse psoriasis I have and have had for years. And I use the Triamcinolone but it doesn't last over night. Helps for the day time. I just have to be careful to not slip out of my chair..... from being so greased up... lolol.
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