Finally, after many, many months of suffering with an all-body itch, I have gotten rid of it. It was so bad that I would wake up bloody in places from scratching at night. I looked like a had the measles or leprosy. It would wake me up in the middle of the night and I would have to grab my back scratcher. And as anyone with this itch will tell you, the more you scratch, the more it itches.
I was in the hospital recently and they gave me gabapentin. The next day...NO ITCH,. I was so aware of it, I almost cried. I was on a large dose, and they were going to end it at the end of the month, or in two weeks.
I asked my PCP to let me continue on 100 mg. I had titrated myself down from 300 once I got home. I was only on 100 mg. I found it got me through the night completely. I will admit, that I do itch sometimes, especially later in the day before I take my dose. But even that is getting better.
So, gabapentin has some requirements for late-stage CKD that the dose is low, 100mg daily. But it works. Boy is it great not to be suffering from it. It has been a month for me. I do not thing I have ever had something so difficult and painful and irritating as the ITCH. If they take my Gabe away from me, I do not know what I will do.
Here is a document for those who like evidence-based info like me.
I think the devil lies in the details. Did they check your phosphate levels? Are you taking any carnitine supplements post dialysis. I do not think gabapentin is the solution here as it will only mask your itch, the day you stop is the day it will reappear. Speak to your doctor about the root cause of this itch. I had a similar problem, and it was due to high phosphate levels. I increased my daily dosage of phosphate binders to remove the excess, and it was almost gone. See if you can find something in your regular blood work.
My phosphorous levels are fine..... so nope, that does work here. True for others it can be a cause but they were down to 4..... My neph does want to talk about it. She gave me an antihistamine that was useless when I pressed the issue. And yes Gabapentin is not a cure but at this point I do not care.
In some patients low levels of carnitine causes dry and itchy skin. I also forgot, you should also have your PTH levels checked during the blood work. That could also be a cause.
I was taking L carnitine before and it did not matter. I stopped it over a month and a half ago.... and no difference and my PTH levels are at the lowest they have been. Lower than they were before this itch began....so nope to that. Sometimes, this sticking itch just happens to people. Rejoice in the fact that for now, I have found relief and it might help others.
Wow I'm really surprised about this. There was a conference talk online that I watched a couple of years ago that talked about quality-of-life for dialysis patients. Pruritus is up there as a very common issue and very important for patients. But Nephrologists don't pay enough attention to it because they concentrate on the more vital/critical stuff.
Hallelujah! My big question is why don't more doctors know about this! Itching that's difficult to treat is torture and most are going through enough. Thank you for sharing this and hopefully giving some people help!
My husband (dialysis patient)'s experience has been that the drs. don't seem to be into the "whole person" (i.e. how the patient feels), but just the lab results and whether they show dialysis is"working." Quality of life issues appear secondary, if considered at all. Hence itching is not a big deal to them...
BTW, your dosing is for Pregabalin not Gabapentin (similar but not the same drug). CKD patients can go up to 150mg. And be careful when you stop it, it should be done gradually.
thats great. im in stage 3 and also have a lot of itching. probably nowhere near as nerve wracking as yours. i can sleep through the night. so far ive tried various creams ( help for short periods) and benedryl which did not help at all. i'll wait for a while before i speak with my neph about gabapentin. i would rather not add another drug to my list until absolutely necessary. also, thanks for the study info.
Unfortunately, that medicine has a bad reaction with my husband. So, he's had to try other skin creams with varying results. The good thing is a donor came forward & has all the right tests. Pretty much a perfect match. The plan is to do the surgery later this spring.
The donor is going on vacation & my husband needs more tests to lower glucose lever & fluid retention, including fluid buildup in the lungs. The fluid build up is minor, but they still want to get it better controlled.
This happened to my mom when her center suddenly started using different dialyzers. As soon as they changed back to the old dialyzer, no more itch. I wonder if you’re allergic to one of the membrane components?
A lot of patients started complaining about itchy skin when they never had that issue before. That’s when we found out they switched dialyzers. After so many complaints, they switched back to the old dialyzers and the itchiness went away.
Funny, I also switched to the new dialyzer. I have some of the older ones. I will have to try those again to see if I do itch. Thanks for alerting me to this.
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