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.
I heard at last year’s Annual Dialysis Conference (the pre-meeting session about home HD) that folks who do nocturnal HD should NOT use Cinacalcet. I don’t recall why, but I think it was Dr. Michael Straus from Indiana who said it. Is anyone here from that program?
Bone pain can be caused by oversuppressing parathyroid hormone so your levels are too low, as well as by too-high levels. It’s important to make sure that your target PTH level is correct and that an accurate assay is being used to test your levels.
Hi Kamal,
At one point you said you were taking NeutraPhos for low phos. But then you said it kicked your potassium up too high. Believe you said you were on a 2K at the time. Were you not able to go to a 3K while using the NeutraPhos? How many times a day did you have to take the NeutraPhos? Think you also said that you discontinued using NeutraPhos and went to a Fleets type additive in your dialysate. So, do you now have normal phos?
Do you take a pre and a post phos. when you do labs? It has been pointed out to me that to get a true measure of phos for nocturnal txs , one must take both pre and post.
Is your calcium in range or do you find it runs high with nocturnal txs?
I have read the posts of a number of nocturnal patients online, but I have not read where any of them take Alpha D3 capsules before they go on txs. I have read articles on the importance of this form of Vit. D, but am sketchy on this subject and need to study it out more. Have no idea about brands or dosage necessary.
At your clinic do you take labs to see where your vitamin D level is… if so, what type labs?
Sorry for so many questions, but your answers to my questions will help me to help you.
[QUOTE=Jane;18749]Hi Kamal,
At one point you said you were taking NeutraPhos for low phos. But then you said it kicked your potassium up too high. Believe you said you were on a 2K at the time. Were you not able to go to a 3K while using the NeutraPhos? How many times a day did you have to take the NeutraPhos? Think you also said that you discontinued using NeutraPhos and went to a Fleets type additive in your dialysate. So, do you now have normal phos?[/QUOTE]
I am still taking Neutraphos. My Potassium did not go high. I take one packet of Neutraphos every morning after breakfast. I did switch to a fleet type enema which I started adding to my dialysate. But I started having a headache and thought my sodium was going up because the enema was a sodium compound. Now, I feel the headache was unrelated. I am planning to start adding the enema again. I still don’t have a normal Phosphorus.
Yes, I do both.
My Calcium had become high initially with Nocturnal. I then switched to a low calcium acid solution. I now use a solution that has 2.25 mEq/l of Calcium as compared to 3 mEq/l of Calcium in the solution earlier.
I think these capsules are used to supplement Vitamin D which the kidney normally produces. I have read that some people with similar problems did benefit from Vit D supplements. I am planning to get my Vit D levels tested soon.
I am from India and the protocols here are very different. There is no standard clinic that we go to. Its just a neph that I go to and we discuss and decide what tests to do. As I said, I am going to get my Vit D level tested soon.
Not at all Jane! I really appreciate your response and questions. Please let me know your thoughts on this. It will really help me decide the further course of action.
My levels are high for sure. I am trying to adjust the does of cinacalcet to adjust this. I did a quick google to check on cinacalcet not being used for nocturnal. Did not come up with anything. I probably need to dig deeper. Do you have any links to the abstracts of the conference, Dori?
I may have that info in my office–I’ll have to check on Monday–or email one of my experts for you.
Oops–I was trying to just reply, not edit. I thought I was in a new post, and I wasn’t.Sorry about that, Kamal. Please feel free to repost what you had before.
[QUOTE=Jane;18750]Hi Dori,
What is the difference between an assay and lab tests? Is it just an interchangeable term or is it a certain type of test?[/QUOTE]
They’re the same thing.
[QUOTE=Jane;18756]Kamal,
Is http://kamaldshah.com your correct email as I tried to send you an email, but it would not go through?[/QUOTE]
My email address is kamalshah20@gmail.com.
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.
I also used to have a very high PTH 1500-1800 range. It seems the only thing that really controlled it was when I went on Sensipar. Now They are back to normal.100-300 range
[QUOTE=MiracleMan;18768]I also used to have a very high PTH 1500-1800 range. It seems the only thing that really controlled it was when I went on Sensipar. Now They are back to normal.100-300 range
///MM[/QUOTE]
Hi MM,
I am taking Cinacalcet which I think is the same as Sensipar. What is the dose of Sensipar you are taking? I take 60 mg everyday. I was taking 30 mg till a few days back. I increased it to 60 mg since my last PTH (642).
Kidney_Mom,
Did you previously take a vitamin D analog like Zemplar or Hectorol? What dialysis modality are you on?
Everyone,
Re labs, does anyone here get a measurement of PTH ratio, not just PTH, which is a method said to most accurately measure PTH developed at Scantibodies Labs? There may be a difference of opinion amongst nephrologists as to whether this method is more accurate. Just wondering if anyone is aware of this alternate method?
[QUOTE=kamalshah20;18766]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.
I have never read where a U.S. patient said he was tested for Vit. D. Wondering how the blood was drawn for the test- just a pre tube or some other way?
The test was for 1 alpha, 25 Dihydroxy cholecalciferol, the active form of Vit D3. It was drawn just like any other test - into a tube.
I went to my neph and he has put me on Calcitriol 0.25 mcg per day. He has asked me to take this for a month and then check my Calcium and PTH as this can cause hypercalcemia.
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.
Also, I was looking up Calcitriol on the internet and I found two bits of information - one which said that calcitriol is contraindicated in treating Vit D deficiency (http://www.vitamindcouncil.org/treatment.shtml) and one more that said that paricalcitol (Zemplar) was better than calcitriol (http://content.nejm.org/cgi/content/full/349/5/496) in terms of causing hypercalcemia. I’m wondering then about why I was put on calcitriol as opposed to paricalcitol?
For me, the bone pain subsided very quickly once I got on the correct dose of Hectorol. I recall feeling greatly improved the first month and back to normal by the 2nd month. My PTH went straight down to ormal within a few months despite having gotten at high as 1500. My clinic was using the correct agent, but had been dosing wrong.