bone, muscle, joint pain

[Sunny]

I have a question about the increasing bone,joint,and muscle pain I'm having in conjunction with high PTH and low vitamin D. I'm pre-dialysis. My latest test for Vitamin D 25 hydroxy is 18 out of a range of 30-100. My doctors at Stanford told me I should be "watching" my PTH and low Vit D problem so I started increasing my over the counter vit D to 1000 mg, but it's not doing anything. I still have bone,joint,and muscle pain. My joints are really beginning to hurt. I do only limited physical activity or I have to indure all over body pain. My day to day medical care is in the hands of my local renal doctor, not my Stanford doctor. Should I be making more of an issue with my local renal doctor about my high PTH and low vitamin D levels? (current GFR 16%)

[pamster42000]

Be very concerned ! Going unchecked over a period of time you may develop renal osteoporosis which is very debilitating. In my daughter's case she had to take numerous pain medications, used a wheelchair and a walker for short distances, Just by leaning her hand on a rail she received a fracture. One time just getting up from the couch she received a fracture. She participated in water therapy because that was the only exercise the Dr. felt safe for her. As like other people with osteoporosis she developed a small curve to her back and she shrank height wise. A person will develop problems with their teeth too.

As long as you keep your blood values in the right range you won't have a problem with this issue. Right now your blood calcium level  is low which is what is causing your PTH to be high. PLEASE discuss this subject with your renal Dr. He will prescribe proper medications to get your levels in the right range.

[monrein]

I think I would be starting D  if my PTH were causing these kinds of bone issues, Sunny.   My GFR was around 16% actually when I did start last time.  I was having lots of symptoms and my neph was concerned about malnutrition and other complications of waiting too long.  Even so, and my PTH never really went too significantly out of range, in  10 months on D I went from having osteopaenia to having moderate osteoporosis that we are now treating somewhat aggressively. 

[pamster42000]

Yes starting dialysis would be a good idea too.....sorry I just got caught up in the bone pain issue and forgot you haven't started yet. I just watched my daughter through the last year of her life with the bone pain she had etc. ..it's just a personal mission to inform others of the complications that may occur.

You can't depend on the Dr. apparently when blood values aren't in range to automatically notice it and do something about it. You have to learn what the blood value results are and and if out of range bring it to their attention and don't let up until something is done.

[kamalshah20]

Hi Sunny,

I have much the same symptoms as you do. I am on dialysis. I am on medication for PTH and low Vit D levels. I just started the Vit D supplements about 10 days back. My 1 alpha dihydroxy level was 3.2 as opposed to a normal of 18. The bone pain is not any better yet.

Thanks
Kamal
http://kamaldshah.com

[silverhead]

Over the counter Vitamin D is not going to have much if any affect on PTH levels, you need prescription "Elemental" D pills such as Zemplar to see a decrease in PTH, and yes bone pain is a serious indicator, don't wait to treat this......

[RightSide]

Over the counter Vitamin D is not going to have much if any affect on PTH levels, you need prescription "Elemental" D pills such as Zemplar to see a decrease in PTH, and yes bone pain is a serious indicator, don't wait to treat this......

The reason why OTC vitamin D can't affect PTH levels much, is that the parathyroid glands only respond to the activated form of vitamin D.

The kind you buy OTC is the inactivated form (usually cholecalciferol--inactivated vitamin D₃).  In a healthy person, this inactivated D is hydroxylated by the liver, and then again by the kidneys, to become the activated form (that's what the "25-hydroxy" in the blood test refers to). 

Sunshine shining on bare skin causes the skin to make inactivated vitamin D.  It gets activated the same way--by the liver and kidneys.

Unfortunately, as the kidneys start to fail, their ability to activate vitamin D decreases.  When the kidneys have totally failed, they can no longer activate vitamin D at all.

As you say, many of us take an analogue of activated D, such as Zemplar.  But even with Zemplar, it took me several months to get my PTH under control.  With OTC vitamin D, I might never have succeeded.

BTW:  The latest medical research suggests that OTC vitamin D₂--ergocalciferol--has other value for us dialysis patients.  I posted about that once before--it seems to boost the bone marrow so you need less Aranesp or Epogen.  But it still won't help lower PTH much.

Whew!  You sure need to learn a lot of biochemistry with ESRD!   

[Jie]

Yes, you need ACTIVE Vit. D.  Don't waste money and time on the over-counter Vit. D. A combination of active Vit. D. and phosphorus binders should be able to deal with these problems.

[Sunny]

Thank you for your perspectives. Your information has been very helpful.
Today when I saw my local nephrologist I was able to have an intelligent conversation about my PTH and vitamin D problems. She will be having my PTH and vitamin D checked with my next blood test and depending on the results, we will then decide what to do next. I think that means trying an Active form of vitamin D. I'll let you know how it goes.