Itching issues!

[Athena]

Lately I've been having intense itching episodes late at night. I have the strongest urge to scratch on the legs, back, and also face & neck (it's just started now as I write this!). The problem is that I have never had above normal serum phosphate levels, although I do have raised PTH levels. My phosphate & calcium levels are normal however. Does this mean this itching may not be kidney related? I remember I've had the 'itches' years before I was diagnosed with CKD ... Just wondering what could be behind this.

[kristina]

Hello Athena,
I have no idea what the itching is due to, but I also went through such irritating itching-phases ...
It has helped me a lot to use a creamy shower-gel whenever I take my shower
(or some generous amount of baby-oil in the bath together with my "usual" herbal bath-oils)
...But most important for me is, to always put some "easy dissolvable" cream ( I don't like "smutchy" creams...) on my body after each shower/bath.
These creams I get from the baby-section i.e. "Little One's Baby Lotion" etc. They are very practical and they do not cost much money
and I still use them every day and it helps, not only against scratching, but it also helps to keep my body smooth...
Good luck from Kristina.

[cassandra]

I agree with Kristina, but it sounds like high phosphates is causing the itching

Love, Cas

[Athena]

Cas, I would have to agree that it must be from the phosphorous. The itching this time round is more intense. I have to scratch with more pressure than before. When undressing, I seem to get an attack of the itches as well, eg when taking off exercise clothes with perspiration on the skin. The only good news is that the itching is usually short lived.

I wonder how other people have found these itching spells. Do they last for a short time? Can they be exacerbated by different things?

[cassandra]

Dry skin is definitely a contributing factor, but till your phosphates drop, it will keep coming back and intensify I'm afraid. Are you already on binders pre D ?

Love, Cas

NB I'm very impressed with you still doing exercises

[Athena]

Cas, No I'm not on phosphate binders. It must be because my serum phosphorous levels are still in the normal range (although PTH levels are mildly elevated) ... Perhaps I should ask whether I could take them? I once heard that there is a natural means to reduce phosphorous intake (clay minerals?). I've also read that we absorb less phosphorous from plant food instead of animal food.

As for exercise, I still exercise. Today I did 40 minutes on the treadmill. I felt so good after that!

Then I ruined everything by eating some dark chocolate! The exercise and chocolate soon fixed my depression though 

[cassandra]

Well done, and SOME dark chocolate IS worth it   

I don't know about natural phosphate-'binders' or if 'binders' are bad for residual kidney function. I'll have a Google around.

NB my 'incredible itching spells' happened way before they were abnormal according to nephs.

[cassandra]

I couldn't find anything bad for residual renal function, but try not to get (well, insist) not to get either calcium or aluminium based binders

Luck, and love, Cas

[Athena]

I've just spoken to my Neph over the phone & reported this itching problem. Like a lot of things in this disease - nothing is clear cut & straightforward! My serum phosphate levels are within the normal range so he can't prescribe phosphate binders. The last normal test was on 21 Jan. Perhaps because I've been trying to eat a lot since then to gain weight that my phosphate levels have increased since then?

My question is whether skin itching pruritis can occur in pre-dialysis CKD even if phosphate levels are normal? (calcium is also normal but PTH mildly elevated).

My other big question is, if serum phosphate is normal but PTH is elevated - doesn't that mean my kidneys have trouble excreting dietary phosphate levels already? Therefore shouldn't phosphate binders be prescribed?

If anyone can give me any extra details about this whole phosphate-calcium-PTH imbalance in CKD, I'd appreciate it. Unfortunately, the calcitriol (activated Vit D3) I've been prescribed, is not expected to do much to help the PTH levels according to my Neph! 

[Athena]

http://www.nephrologynews.com/articles/109459-phosphate-binding-drug-does-not-improve-heart-health-of-patients-with-mild-kidney-disease

Found this article which states that even having normal phosphate levels at the higher end of normal can be dangerous to cardiovascular health.

[iolaire]

Lately I've been having intense itching episodes late at night. I have the strongest urge to scratch on the legs, back, and also face & neck (it's just started now as I write this!).

This description really sounds like what I was feeling in the weeks leading up to me starting dialysis. 

Within a few weeks I was in the hospital for another reason and at that time the started dialysis so I don't know what happens after the itching, but I believe that was my first sign that it was very close to time start.  In the hospital my major issue was anemia, but that was exacerbated due to internal bleeding from an ulcer, but it could have been related to my kidneys also...  They gave me four sets of blood and a ton of iron to try to get my anemia under control.

At that time I don't remember any other side effects, except for the itching which mostly was in my legs, and was irritating enough that it was making it hard for me to sleep.  I tried elevating my legs and taking Tylenol, and I guess I was getting to sleep.  I remember it bothering me to a point where I talked to my wife about it.  For years pre dialysis my energy level was poor, that and the itching recovered after start of dialysis.

Have you prepared for dialysis?  i.e. had your access/fistula installed, thought about what center is most convenient for you, how you will accommodate the dialysis shifts, figured out transportation, gone thought the training about your dialysis options? 

Also if you are in the US, on insurance, and you end up starting dialysis in the hospital make sure the hospital starts getting your dialysis center placement as soon as you start dialysis.  For some reason they didn't get the paperwork going and they were trying to hold me in the hospital for extra days because they didn't have me assigned to a center and because my insurance would pay for seven days - I'm sure if I was on Medicare they would have not held me....  After the first unneeded hospital day my wife helped throw a fit and got them to rush me out that day...

[Sibella]

I had an itching (legs) attack the end of January. No real problems in February when I was in a location that has more humidity. As soon as I returned to the cold, dry air in Michigan, I had another itching episode. My phosphorus levels are smack in the middle of the normal range. What's really frustrating is trying to link symptoms to something you can change.

[Athena]

Iolaire, thanks for your reply. I don't think I am on the verge of dialysis, otherwise my Nephs would have told me so by now. Skin itching is however a troublesome symptom of CKD. I think it tends to occur more in late stages of CKD. I did ask my Neph whether this might be kidney related and he wasn't quite sure. My serum phosphate levels are in the higher end of the normal range but have never been above normal. I got the impression one would have to be above normal for skin itching as a symptom to occur.

Sibella, that's great that you're smack bang in the middle of the normal phosphate range (that's actually where my potassium resides). Do you take phosphate binders to keep it under control?

Here's a question I haven't yet gotten around to asking my Neph & am wondering whether anyone can advise. If I continue to eat a 'normal diet', could I just supplement with binders to keep my blood phosphorous levels under control? Normal diet for me does not contain junk or fast foods (except for some healthy Subway) of course. I don't drink soda. I do like restaurant food quite often though (pastas especially) but that's about once or twice a week.

[iolaire]

Here's a question I haven't yet gotten around to asking my Neph & am wondering whether anyone can advise. If I continue to eat a 'normal diet', could I just supplement with binders to keep my blood phosphorous levels under control? Normal diet for me does not contain junk or fast foods (except for some healthy Subway) of course. I don't drink soda. I do like restaurant food quite often though (pastas especially) but that's about once or twice a week.

I'm sure it depends on the person and the residual kidney function.  I'm 1.5 years in and have not yet had to seriously change my diet.  I work and I eat some sort of out lunch each day, but I do try to select healthier choices.  I don't view myself as large but my BMI at 28 is in the overweight range since I'm 200 lbs. and 5'11'. Generally I do not eat much commercially processed food.  I do take binders and every so often they have to adjust the IV medicine they give me during dialysis.  But to date my lab work is good and whenever its just out of range is controlled via those medicines.

I believe with time I'll need to focus my eating much more and that I have it easy now. 

[Deanne]

I went through a horrible bout of itching at least a year before I needed dialysis and my phosphorus was normal. I changed to a winter-time body wash that was supposed to be extra moisturizing and the problem went away. Maybe it's the same for you?

[Sibella]

I'm stage IV but am already making better choices and limiting sodium, potassium, and phosphates. No dairy. I think Deanne has a good point about extra moisturizing helping with the itching. My neph has not said anything to me about binders at this point.

[Athena]

I went through a horrible bout of itching at least a year before I needed dialysis and my phosphorus was normal. I changed to a winter-time body wash that was supposed to be extra moisturizing and the problem went away. Maybe it's the same for you?

Deanne, my itching episodes seem to have passed, even though my diet is the same. Pruritis can be caused by many things as I've learned. My Neph suggested it may be due to another drug that was recently introduced for a problem unrelated to the kidneys ... He confesses that Nephs don't quite know what to do when a CKD patient with normal phosphate levels report skin itching problems.

A moisturising body lotion after showering sounds like a great idea. Regardless of whether there is itching issues or not. Thanks for the tip.

[Athena]

I'm stage IV but am already making better choices and limiting sodium, potassium, and phosphates. No dairy. I think Deanne has a good point about extra moisturizing helping with the itching. My neph has not said anything to me about binders at this point.

You're doing great Sibella if you're not taking binders but your phosphate levels are so good. Well done. What is the cause of your CKD, if you don't mind me asking.

[Sibella]

Athena, I just got my results by phone two days ago. Biopsy revealed "moderate arterionephrosclerosis" and "red blood cast of uncertain etiology". In other words, if I understand correctly, they don't know why my kidneys have failed so quickly in the last year and a half. And they didn't find anything they could 'treat'. At Stage IV my next step is getting a fistula started. Luckily, I feel fine at the moment.