Bone pain

[kamalshah20]

For about a month now, I have been having pain in my bones - mainly in my ribs, my back and my feet. When I sit for a little while and then get up, my walking is a little painful. The pain is not unbearable but it is uncomfortable.

I have had a high PTH for a few months now and have been on cinacalcet. We're still trying to arrive at a 'correct' dose. My PTH is around 640 now. I have also had a low Phosphorus since I've started nocturnal.

I saw my neph a couple of days back and he suspects that the Vitamin D levels are off. I used to take Alpha D3 capsules before I got onto nocturnal.

I was wondering if anyone has any idea about this and if Vit D levels could be linked to bone pain.

Thanks
Kamal
http://kamaldshah.com

[jennyc]

Pain everywhere. When my Pth and Vit D levels were out I had pains in my wrist similar to carpell tunnel and i had lots of bone pain. I am on 60 Sensipar per day and 2x rocaltrol (vit D) per day. It has lowered my pth to reasonable levels and the pains have stopped. the only other time i sometimes get pain is when i take my aranesp (only rarely)

[Chris]

Have you seen a bone specialist yet? May want to get a ful body bone density scan (Dex Scan I think it's called, I forgot since it has been over a years since I had mine). I was put on Zemplar at first and prescription dose of Vitamin D along with Calcium plus Vit D. Now on Actonel, Calcium with Vit D, and Vitamin D over the counter pills once a day.

You may want to ask for more help in the bone area, it will help your pain and bones.

Good Luck

[Goofy]

I was wondering the same thing. I've having a lot of pain in my hands, mainly my knuckles.  My PTH is also very high and I also take Zemplar and vitamin D.

I was thinking it was arthritis but do you think it could be from the kidney disease?

[kamalshah20]

Thanks all for your replies. I think I will get my Vit D levels checked and then, if necessary, start a Vit D supplement.

Thanks
Kamal
http://kamaldshah.com

[Zach]

Kamal,

Best see if you can receive the Vitamin D, such as Hectoral, Zemplar or Calcijex by injection (into the blood tubing while on dialysis).  These forms tend to be more effective that oral doses.

[kamalshah20]

Sure Zach. Will remember to check with the neph about this!

Thanks
Kamal
http://kamaldshah.com

[MissyKew]

i thought the bone pain was just getting old.

[RightSide]

It's most likely high PTH.

When my PTH was 1204, my skin felt like it was getting static electric shocks all over.

You need to knock down that PTH by either vitamin D3 or (if that fails) by cinacalcet.

[RightSide]

Oops, I forgot to mention:

When my PTH was 1204, it was sucking the calcium right out of my bones.  I could barely walk, I collapsed a couple of times, and I hurt so much I had trouble climbing stairs or getting in a car.

It's not enough to knock down the PTH.  Calcium supplements and vitamin D will help remineralize your bones.

[MissyKew]

That is scary Rightside.  Glad you are doing better now.  Thank yoi for the info. 

[kamalshah20]

Thanks for the info!

Kamal

[kamalshah20]

My Vitamin D level result has arrived. It is 3. The normal is supposed to be above 19. So, it is really low. I am beginning to panic now. I am seeing my neph tomorrow with this report.

What do you take when your level is so low?

Kamal
http://kamaldshah.com

[kamalshah20]

For those who are taking Vit D for the bone pain, how much time does it take for the bone pain to reduce after you start taking the Vit D supplement.

Thanks
Kamal
http://kamaldshah.com

[Jie]

When Pth is too high, the bone turnover rate is too high, which could result in bone pain or broken bones. As Zack said, active Vitamin D, such as Hectoral or Zemplar, is needed. Active Vitamin D is a lot more expensive than the regular Vitamin D. Actually, they are one of most expensive drugs. But we need them. The target level of PTH is 150-300 for dialysis patients.

[Goofy]

I mentioned in an other post that I take Zemplar too.  I always ask my neph for samples because it is so expensive. 

[kamalshah20]

Apart from the reduced hypercalcemia, are there other benefits to taking Zemplar over Calcitriol? How is Hectoral different?

Thanks
Kamal
http://kamaldshah.com

[RightSide]

My Vitamin D level result has arrived. It is 3. The normal is supposed to be above 19. So, it is really low. I am beginning to panic now. I am seeing my neph tomorrow with this report.

What do you take when your level is so low?

when I started dialysis,

My vitamin D level was severely low too (though not quite as low as yours).

So my neph put me on TWO different forms of Vitamin D:

Zemplar (cholecalciferol):  Activated vitamin D3, 10 micrograms each dialysis session
Ergocalciferol:  Vitamin D2, 50,000 units once a week orally

That's a hefty dose of vitamin D!!!

A while back, I posted some info on why we might benefit from taking BOTH vitamin D2 and vitamin D3.  This is still an area of ongoing research, however.

My neph feels I've had enough heavy D2 by now, so he's just ended my prescription D2 and he told me to just buy D2 over the counter.  Unfortunately, it's not over every counter.     I have to order D2 over the Internet.

Be patient.  With plenty of vitamin D, and plenty of calcium, you're going to feel great.

[RightSide]

Oops, made a mistake there.

Zemplar is paricalcitol, not cholecalciferol.

[RightSide]

For those who are taking Vit D for the bone pain, how much time does it take for the bone pain to reduce after you start taking the Vit D supplement.

I was on a heavy dose of Zemplar (10 micrograms each dialysis session), and I was chewing up SEVEN Extra-Strength Tums a day, giving me 2,000 mg calcium daily.

On that regimen, it took me about 4 months before I started noticing that the bone pains were getting a little better, and that I was walking easier.  I could chart the decline in my PTH over time with Microsoft Excel.

But it took another couple of months before the bone pains ceased completely. And my PTH has gone back into the normal range (normal for us ESRD folks, that is)--and remained there ever since.

Mission Accomplished.

[kamalshah20]

Rightside, were you taking any cinacalcet (Sensipar) for your PTH or you achieved the reduction with Zemplar alone?

Thanks
Kamal
http://kamaldshah.com

[kitkatz]

I have turned out to be allergic to Zemplar. It makes me itch like crazy!

[Zach]

Rightside, were you taking any cinacalcet (Sensipar) for your PTH or you achieved the reduction with Zemplar alone?

I don't know about RightSide, but I need both Zemplar and Sensipar to keep my PTH in the normal range.

[kamalshah20]

I am also taking both now Zach. I have a very uncomfortable pain in my feet, ribs and back. My neph says it is due to the low Vit D. I'm hoping this will help resolve this pain.

Thanks
Kamal
http://kamaldshah.com

[pamster42000]

I am so glad you have taken an active approach in your bone pain issues. You are saving yourself from developing renal osteoporosis and using a walker, wheelchair, taking numerous pain medications and getting bone fractures easily. Keep up the good work and be involved in your health issues. I don't know you but I am very proud!