Please talk me down!

[RuthWells]

Hi folks,

I haven't had as much time to spend on the forums as I'd like, but hope that y'all won't hold it against me!   I have a new maybe-symptom and am hoping that some of you will be able to stop me from panicking.

I have PKD, and last blood work was in January with GFR of 38%.  I've been progressing pretty slowly for the last couple of years (I was over 50% in October 2005, for reference).  I'm not scheduled for blood work again until July.

My question is for those who have experienced itching as a symptom as their kidneys failed.  In the last few weeks, I have started feeling little pin-prick itches all over my head, face and body and it's driving me nuts.  They come and go, and if I ignore them, the itch subsides pretty quickly.  There are no hives, no bug bits, no nothing that would indicate a reason for itching -- just the itch itself.  And knowing that some people experience itch as part of kidney failure, naturally I'm assuming the worst!! 

[paul.karen]

Well im glad your progression is so slow 

Do you take any meds?  Several meds that i take make me itch.  Usualy the painkillers but that is a side effect i can deal with.

I also have PKD and have not itched that i can recall  less taking meds.

[jbeany]

Have your doctor check your calcium and phosphorous levels.  If they are elevated, that can make you itchy.  There are meds to help the phos level, and it's not unusual to need them quite a while before you actually need to start dialysis.

[paris]

Phosphorous is what I thought of also.   Let us know if you find an answer.   Good to see you again!   

[KICKSTART]

Yes more than likely high phosphorus , its very common. Food that contains lot of protein or dairy is full of it ! (as well as just about everything else!) Get your bloods checked for it , the remedy is simple you take a 'binder' (tablets) with your food .

[MandaMe1986]

I know I am gonna say what everyone else is saying. But have them check your phosphorous.

[RuthWells]

Thank you all so much -- elevated phos makes some sense to me, as I've added back a bit of protein to my diet in the last few months.  Checking my historical blood levels, calcium was at 9.1 (within normal range) back in January, but we haven't been checking phosphorus.  I think I'll reduce protein and see if that handles the issue.  Thank you!!

[okarol]

Here's an article called "Reading labels to control phosphorus"  http://www.davita.com/diet-and-nutrition/diet-basics/a/1695

[dkerr]

I also have PKD and started itching with phosphurus problems, but that didn't really start until my GFR was much lower than yours.  Around 12-15.

[RightSide]

Same thing with me!
My itching, just before starting ESRD, was so bad that I couldn't sleep a wink.  I was being pricked at from all sides.

It turned out to be a combination of high serum phosphorus and high parathyroid hormone (PTH).  The combination of those two is particularly bad.  Because the high PTH leaches calcium out of your bones into your blood, where it combines with the phosphate to form calcium phosphate crystals, an insoluble mineral, which can collect under your skin and drive you nuts with itching.

Your physician should order blood tests to check your PTH, calcium, and phosphorus levels.  My guess is yours will turn out tol be PTH high, phosphorus high, calcium very low. 

You will need to cut your phosphorus intake by altering your diet.  A nutritionist will meet with you and show you how.  You will need to take phosphorus binder meds with your meals, to combine with the phosphorus that's there and keep it from being absorbed.  You will need activated vitamin D, to knock down the PTH level.

And you will need to be PATIENT.  To get your blood numbers into some reasonably normal range will take months.  In the meantime, while waiting for my blood numbers to stabilize, I found that Neurontin helped with those "pins and needles" feelings.

Another med that can help in the meantime is topical Capsaicin--if you can tolerate that "burning" feeling.

[TiffanyJean]

Phosphorus - thats why Richie is always itchy, he sometimes sneaks things when I'm not around or not looking.

if its very concerning then get a blood test sooner rather than later; but if watching what you eat helps then you should just tell your doc about it at your next appointment.

Same thing with me!
My itching, just before starting ESRD, was so bad that I couldn't sleep a wink.  I was being pricked at from all sides.

It turned out to be a combination of high serum phosphorus and high parathyroid hormone (PTH).  The combination of those two is particularly bad.  Because the high PTH leaches calcium out of your bones into your blood, where it combines with the phosphate to form calcium phosphate crystals, an insoluble mineral, which can collect under your skin and drive you nuts with itching.

Your physician should order blood tests to check your PTH, calcium, and phosphorus levels.  My guess is yours will turn out tol be PTH high, phosphorus high, calcium very low. 

You will need to cut your phosphorus intake by altering your diet.  A nutritionist will meet with you and show you how.  You will need to take phosphorus binder meds with your meals, to combine with the phosphorus that's there and keep it from being absorbed.  You will need activated vitamin D, to knock down the PTH level.

And you will need to be PATIENT.  To get your blood numbers into some reasonably normal range will take months.  In the meantime, while waiting for my blood numbers to stabilize, I found that Neurontin helped with those "pins and needles" feelings.

Another med that can help in the meantime is topical Capsaicin--if you can tolerate that "burning" feeling.

As for what RightSide is talking about - the condition that usually develops is called Secondary Hyperparathyroidism.  Richie had his Parathyroidectomy in Feb of this year - his PTH #s were in the 3000 range and had very early signs of starting to get calcium build up in his calf muscles (this condition is called Calciphylaxis) anyways his calcium levels were very low, and his phos was always high, and the PTH was always through the roof. The Secondary Hyperparathyroidism usually can occur in stage 3 renal patients. But PTH, controls the calcium levels in your body, and if your phos is too high then your body doesn't think you have enough calcium. So the PTH triggers your bones to release it. I think that PTH, Phos, and Calcium are some of the important numbers to keep track of for most renal patients.

TJ

[RightSide]

As for what RightSide is talking about - the condition that usually develops is called Secondary Hyperparathyroidism.  Richie had his Parathyroidectomy in Feb of this year - his PTH #s were in the 3000 range and had very early signs of starting to get calcium build up in his calf muscles (this condition is called Calciphylaxis) anyways his calcium levels were very low, and his phos was always high, and the PTH was always through the roof.

Actually, it's called Secondary Hyperparathyroidism when PTH level is high,  but it is still responsive to meds like Zemplar (which I take) or Sensipar, which suppress the secretion of PTH by the parathyroid glands.

It sounds like Richie had Tertiary Hyperparathyroidism.  That's hyperthyroidism that doesn't respond to medication, because the parathyroids have stopped responding to the calcium level in the blood and just keep secreting PTH no matter what.  I assume that Richie went for surgery only after the usual meds failed--that's Tertiary.

Finally, for those of us who take Zemplar (activated vitamin D) to suppress PTH, my nutritionist just told me that there is now some evidence that this form of vitamin D may not do some of the other good things that vitamin D does, like boost the immune system.

Evidently there is another biochemical pathway that enables the inactive form of vitamin D (what you get from milk or vitamin pills or sunshine) to carry out these other useful functions.  If so, then we dialysis patients may need to take both forms of vitamin D: the inactive form to boost the immune system, and the activated form (Zemplar) to suppress PTH.  (Once the kidneys have failed, they are no longer capable of activating--hydroxylating--the inactive form of D.)

This is all very preliminary, but you may want to ask your own nutritionists if they've heard about this.

[TiffanyJean]

As for what RightSide is talking about - the condition that usually develops is called Secondary Hyperparathyroidism.  Richie had his Parathyroidectomy in Feb of this year - his PTH #s were in the 3000 range and had very early signs of starting to get calcium build up in his calf muscles (this condition is called Calciphylaxis) anyways his calcium levels were very low, and his phos was always high, and the PTH was always through the roof.

Actually, it's called Secondary Hyperparathyroidism when PTH level is high,  but it is still responsive to meds like Zemplar (which I take) or Sensipar, which suppress the secretion of PTH by the parathyroid glands.

It sounds like Richie had Tertiary Hyperparathyroidism.  That's hyperthyroidism that doesn't respond to medication, because the parathyroids have stopped responding to the calcium level in the blood and just keep secreting PTH no matter what.  I assume that Richie went for surgery only after the usual meds failed--that's Tertiary.

Right Side - thanks for that term! We were just told that he had secondary hyperparathyroidism, gotta love doctors!! even better was when he started in center HD and had all his pills (one of which was Sensipar we didn't fully understand what it was for) the dietitian explained what it was once she saw that his initial PTH was 5,500 - she thought it was a typo and freaked 

It wasnt until about a year later that we really learned that he was diagnosed with the secondary hyperparathyroidism at his initial ESRD diagnosis the year before. I never saw the term Tertiary Hyperparathyroidism used, so never realized that it was anything other than the secondary condition. Its always nice to have a (true) name for what is (or has happened) to Richie.

He started taking Calcitriol (which is an active form of Vitamin D) a few weeks before the surgery. he now takes that along with calcium. the best part (his favorite thing) aboout having had the surgery, and having NO calcium in his body and having what the doctors called "hungry bone syndrome" was he was told/able to have plenty of calcium rich foods; the best part for him was the milk because that's like his favorite thing ever (was the biggest bummer when he got diagnosed and was told he could have any!). He know is at normal calcium levels and has to watch his intake and is back on the binders.

These things are very important to keep track of - having too low of calcium can cause seizures - which Richie did have; no fun for me. Hes good now.

anyways keep on top of the doctors and really keep track of the numbers - you are your best advocate!!!

TJ