renal osteoporosis

[pamster42000]

My daughter was diagnosed with renal osteoporosis and it was very debilitating for her. She ended up using a wheelchair and a walker for short distances. She had very bad bone pain and bone fractures were frequent. Just getting up from the couch and standing up caused a bone fracture one time. She was on pain medications and went to swim therapy. This was the only therapy she could do because it wasn't too strenuous on the bones.

Please do any precautionary measure you can take not to develop this. Talk with your Dr. and and make sure he is doing everything possible to avoid this situation. I am not trying to scare you, just want you to be informed of possible side effects of hemo dialysis over a period of time.

The picture is of Sarah (middle) on her 25th birthday (May 13, 2007). She had to lean on cart to stand for picture.

[okarol]

Bone Disease Management from RenalWeb

Unless closely monitored, renal bone disease (renal osteodystrophy) is a problem that will be experienced by most people suffering from end stage renal disease (ESRD). Renal bone disease is a complex issue and involves many more factors than can be listed in this limited space. Only the very basics are outlined here.

First, the kidneys are involved in the synthesis of vitamin D, which is the most essential factor regulating intestinal absorption of calcium in humans. When the kidneys fail and less vitamin D is created, the amount of calcium absorbed by the intestines is reduced. Calcium is most essential substance for bone maintenance and health. Next, calcium and phosphorus levels in the blood (which are normally regulated by the kidneys) are dependent upon each other. Therefore, when the kidneys fail and the phosphorus level in the blood goes up, the (free) calcium level in the blood decreases. In response to these two factors that lower serum calcium, the body then increases the parathyroid hormone (PTH) level in the blood.  PTH causes calcium to be released from the bones in order to increase the serum calcium level.  Left untreated, an ESRD patient will have bones that are depleted of calcium, brittle, and likely to fracture.

Treatment and prevention of renal bone disease usually include the use of phosphate binders and vitamin D analogs (to reduce PTH levels).  In the past, treatment frequently included the removal of the parathyroid glands.

Normal serum calcium is 8.5-10.8 mg/dL.

Normal serum phosphorus for dialysis patients is 3.5 to 5.5 mg/dl High phosphorus levels also cause itchy skin.

It is recommended that ESRD patients maintain a calcium phosphorous product that is below 70.

from http://www.renalweb.com/topics/out_bonedisease/bonedisease.htm

[Bajanne]

Wow!  This really hit me in the solar plexus, since I have been recently so careless with my binders!!  I need help!

[Zach]

Normal serum calcium is 8.5-10.8 mg/dL.

Normal serum phosphorus for dialysis patients is 3.5 to 5.5 mg/dl High phosphorus levels also cause itchy skin.

It is recommended that ESRD patients maintain a calcium phosphorous product that is below 70.

According to the National Kidney Foundation (U.S.A.):
http://www.kidney.org/professionals/KDOQI/guidelines_bone/Guide6.htm

In CKD Patients With Kidney Failure (Stage 5):

6.2 Serum levels of corrected total calcium should be maintained within the normal range for the laboratory used, preferably toward the lower end (8.4 to 9.5 mg/dL [2.10 to 2.37 mmol/L]). (OPINION)

6.5 The serum calcium-phosphorus product should be maintained at <55 mg/dL. (EVIDENCE)
 

[Jie]

Also, when on dialysis, make sure to use the combination of binders and active vitamin D to maintain PTH within the target range of 150-300, additional to the target ranges of phosphorus and calcium. Too low or too high PTH will result in too low or too fast bone turnover rates and cause bone trouble.

[Jean]

Do ESRD patients regularly have bone density scans? Would that even help?

[pamster42000]

I've been noticing some post about bone pain etc. There is some good info that was provided  from members, just want you to see it if you missed this post.

First picture was taken in 2000 and second picture in March of 2007.

Don't play games when your blood valves are out of range.... having high phosphorus  etc. and bone pain.

I know Sarah probley would  get mad at me for a little bit  for posting her 2007 picture, but  she would of thought about  it and  she would want you guys to understand how your life can change for the worst with PTH imbalance.

[tubes]

I'm sad to say I completely understand. In a previous post I mentioned I was 5'8 and now I'm about 5'4.
I remember when I was 17 and I was told I would need a parathyroidectomy because my pth levels were out of control. I told my neph at the time, "NO". I didnt want to hear it. When I look back on that I think they should of contacted my parents because I was just a kid under my parents guardianship. I tell you I was a very stubborn kid and fought with my doctors on everything. But my parents weren't involved in my care at all. If I was to have surgery they would visit and take me on the day of surgery. Beyond that, they had no clue as to what was going on.
So my pth went unchecked for the next 4 years. When I was about 20-21 is when my mom noticed the effects first. Then I had an appt. and found out what was happening. Scared me and my mom to death. Then 2 months after my 21st birthday I moved in with my grandparents in Kansas. When I saw my new neph for the first time, first thing he told my grandparents and I was that I needed a parathyroidectomy. I saw him in July. He scheduled the surgery for Sept. A few days later we get a call and the surgery had been bumped up to Aug. 1st. My pth, if I remember correctly was around 3000.
I take Sensipar now (30MG tablet) every night. Plus I get something during treatment. Forget what that is. The past 2-3 years I stopped "shrinking" and I've been stable at around 5'4. 
I've never broken any bones besides the obvious vertebrae. The back pain isn't too bad most of the time. I very rarely take pain pills. I do have lortab just in case. My ribs do hurt quite often. Sometimes I feel like I'm being crushed. Which is actually a recent feeling.
I think back to when I was 17 and wonder what would of happened if my neph or a nurse would of called my parents. I believe they should have. You know, just called and said, "Roberts' PTH levels are high and he needs to have them removed". I know my parents would of made/convinced me to have the surgery.
But alas, I'm stuck with what I've become.

[pamster42000]

I remember in May 2005 Sarah looked just fine at her sister's high school graduation. Around September 2006 she started getting bone fractures and around this time she moved back home.  I'm not certain that Sarah knew  her PTH levels were out of range because she always told me things regarding her dialysis etc.

This is the time frame where she had her two seizures, many visits to the ER for uncontrollable blood pressure and bone fractures. many Dr. appts. and dialysis.

In December 2006 she had the parathroidectomy surgery and was taking numerous medications to help her bones.

 I looked into her getting some type of physical therapy because I had concerns about her just getting weak from not being active.

[monrein]

Do ESRD patients regularly have bone density scans? Would that even help?

Yes, I have a bone density done once a year and also take weekly actonel to try to rebuild bone.  I was off of the actonel while on dialysis but was extremely careful with my diet and never ever missed a binder.   Even so I went from having osteopenia to having moderate osteoporosis in 10 months or so.  Now transplanted I exercise regularly and avoid all sodas, especially colas.  I also limit caffeine. 

[Sunny]

Thank you so much for bringing this post up again. Very useful information.

[paris]

Robert and Pam, thank you for sharing your stories.  It makes it all very real when we can see what happens. 

[RichardMEL]

This whole issue has been a major concern for me for some time (and I often think of what happened to eopman) this is why I am very conscious of my labs and watching the PTH, K, PO4, Ca results specially. This month my labs are GREAT everything finally in line, and the PTH at 32.1 is not bad (could be lower, but at one point it dropped to 9, which was too low!). I have to say Renagel and Sensipar, for me, have been godsends. Lowered my PTH by more than half and saved me from a parathyroidectomy of which I am very happy.

Avoiding serious bone disease is all the reason I need to be extra careful about my binders, diet and meds to keep all those labs in line.

[sico]

I experienced pain in my ribs months ago, but that was short lived.

Last blood test i had (3 months ago) my calcium and phosphate were both elevated, have since changed my binders to renagel.
See the neph on Monday after having blood drawn yesterday, they're checking everything. So hopefully my levels  look better.

[cariad]

I am really concerned about this as well. At some point in the past few years, some medical person told me I had scoliosis. I mentioned this to my nephrologist (the one I really loved in CA) and he took a look and said, yeah, but very slight.

I was on calcitriol and phoslo up until last March, and then was told by a local nephrologist (that I can't stand) that i was being overmedicated. My PTH was normal for a non-renal patient, which this nephrologist called 'amazing' (I guess in a shocking way, not in a good way). My phos is never out of range, but hasn't been checked in a while. I have been off both calcitriol and binders for most of the year. All the doctors I speak to have told me that none of these problems are particularly urgent.

My vitamin D was alarmingly low last spring, and the yucky nephrologist told me to just take over-the-counter vit-D, never mentioned sensipar or anything similar. It was the supplement buyer at the co-op who took the time to inform me that I should only buy D-3, and he found me a 5000 iui tablet that was also vegetarian (made from squeezing sheeps wool?) I took about 4 of those a day, and next time my vit-D was checked, it was normal. Does anyone know if this means I am OK, or do I need to still get a prescription for the active variety?

Osteoporosis runs really heavily in my family, and I am the only renal patient of any of them. I haven't studied these issues properly, so do not grasp the details well yet. I really appreciate you sharing Sarah's story, Pam. This area is way too easy to ignore until something goes wrong.... and then it's too late.