calcitriol tests

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calcitriol tests

Postby ribeye » Sat Jun 14, 2014 8:53 pm

Are any trials upcoming for high dose calcitriol? I loathe to start gilenya. Has a dosage been found that helps with people, and if so what is a dose I could start with? My gp is curious and I need to give him a figure.

Thanks to all,

Ribeye
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Re: calcitriol tests

Postby CureOrBust » Sun Jun 15, 2014 2:26 am

I did a quick search in google scholar and came across this one study that gives some info regarding dosage. You may want to have your dr read the whole article to avoid adverse events, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1739797/ The full article should be available, either by the link at the bottom of the page, or at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1739797/pdf/v076p01294.pdf

I was on calcitrol for a brief stint (for bone thinning caused by steroids), but had to stop because a 24hr urine test found I was hypercalcimic. One thing which I have noticed (although may not be so good for a female) is that when I take DHEA along with Steroids, I loose a lot less calcium in my urine. Without it, and added calcium supplementation, I can actually see the calcium in my urine. So, my point is, that maybe adding DHEA may reduce your risk of hypercalcimia (remember I am not a DR). When I told my compounders (its only available under prescription and is compounded in Australia) why I was on DHEA, they actually happen to be compounding it for a study being done at the local hospital regarding bone density.
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Re: calcitriol tests

Postby jimmylegs » Sun Jun 15, 2014 8:15 am

you could run your own individual trial if you got your hands on a sample of this stuff
http://en.wikipedia.org/wiki/Calcipotriol
this is going back years now, but i have put this stuff on my skin, then asked the doc to test serum calcitriol to make sure it wasn't going too high. it was actually way high, so i never bothered using it again. but, if high calcitriol is your objective, this analogue would probably do the trick. you'd have to figure out your own case study design though :)
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Re: calcitriol tests

Postby ribeye » Sun Jun 15, 2014 9:54 am

Thanks for the info. I'm looking for the single injected dose that would be out of my system in 6-8 hours. I see that long term usage could be a problem. I sure don't need any more damage.

The topical route would be kinda cool but I may have to bathe in the stuff.

Thanks and good health to all.

Ribeye
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Re: calcitriol tests

Postby jimmylegs » Sun Jun 15, 2014 10:51 am

i wouldn't be able to speculate on the topical amount required for such and such serum result - all i know is my use was minimal and the effect pretty big. but, i have not been able to find anything published linking topical application to serum calcitriol status.
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Re: calcitriol tests

Postby Squeakycat » Mon Jun 16, 2014 5:08 am

ribeye wrote:Are any trials upcoming for high dose calcitriol? I loathe to start gilenya. Has a dosage been found that helps with people, and if so what is a dose I could start with? My gp is curious and I need to give him a figure.

Thanks to all,

Ribeye

Efforts are underway to get a trial organized very soon and there has been some unstructured testing by a few individuals.
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Re: calcitriol tests

Postby PointsNorth » Mon Jun 16, 2014 9:05 pm

Howdy. I'm one of the 'few individuals'. I first went to my Neuro with the following in hand:

Single Calcitriol Dose Beats Back EAE in Mice | Multiple Sclerosis Discovery Forum
http://www.msdiscovery.org/news/new_fin ... k-eae-mice

A pilot study of oral calcitri... [J Neurol Neurosurg Psychiatry. 2005] - PubMed - NCBI
http://www.ncbi.nlm.nih.gov/pubmed/16107372

Rocaltrol (Calcitriol). I got a script for 2.0mcg/day. 60mcg box. I would take higher pulse doses.

After taking panel for PTH, Calcium, Phosphorus, Magnesium and finding everything WNL I started. Our testing protocol left one week between pulse doses of Calcitriol while taking VitD daily. I was already taking 10,000iu/day of D later increasing to 15Kiu.

Seeing the Wingerchuck study (attached) I thought that 5mcg was a reasonable place to start.
5mcg Nothing
7.5mcg Nothing
10mcg Nothing
Decided to jump to 15mcg. After 2.5 days felt strengthening of right quad muscle on the way upstairs to bed. In following days I realized almost complete resolution of clonus.

Bad break of left wrist from fall at home two weeks later. After few weeks in hospital began to notice improvement in spasticity.

After 2.5 months I started to lose all gains when I realized that I had not been taking vitD for a week. A couple weeks later I tried to restart things with a pulse dose of 20mcg Calcitriol making sure to take vitD. I experienced some positive gains but they were not as pronounced as dose#1. And they were relatively short-lived.

In the last 6 weeks I've tried two more pulse doses (15mcg) and had little or no result.

Tried doses of 22.5 & 60mcg during the 'success' of the initial dosing. Nothing except diarrhea. 15-20mcg well tolerated.

Another member of our group, also SPMS, achieved complete elimination of clonus & spasticity in a very short time after dosing. Gains were only kept for 6 weeks.

Early Days.

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Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-
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Re: calcitriol tests

Postby ribeye » Tue Jun 17, 2014 9:21 pm

Just wondered if anyone has tried an injectable form of calcitriol? Would this eliminate the loose bowels or is that just part of heavy dosing? I will give the oral route a try just to test it out. Will post when I do so. I am rrms so will be interesting to see if results differ.

Thanking you all,

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Re: calcitriol tests

Postby PointsNorth » Wed Jun 18, 2014 11:11 am

Ribeye,

CORRECTION
15mcg was LOWEST effective dose while north of 20mcg caused me diahrrea. You might only have 1 or 2 chances at this. Make your 1st try count.

P
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-
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Re: calcitriol tests

Postby CureOrBust » Thu Jun 19, 2014 2:38 am

I once was prescribed calcitrol for bone density, years ago. I have no recollection of the dose nor of any noticeable side effects (ie loose bowels)
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Re: calcitriol tests

Postby Squeakycat » Sun Jun 22, 2014 4:00 pm

jimmylegs wrote:you could run your own individual trial if you got your hands on a sample of this stuff
http://en.wikipedia.org/wiki/Calcipotriol
this is going back years now, but i have put this stuff on my skin, then asked the doc to test serum calcitriol to make sure it wasn't going too high. it was actually way high, so i never bothered using it again. but, if high calcitriol is your objective, this analogue would probably do the trick. you'd have to figure out your own case study design though :)

The topical versions of calcitriol are prescription so there would be no reason to use these in lieu of oral or injectable versions.

The goal of the calcitriol is to make it available in the CNS so the dose is higher than would be needed if it didn't have to cross the BBB.

Topical calcitriol used for psoriasis does cause transient, non-clinical hypercalcemia, but does not have an effect on 25OHD levels so it would seem highly unlikely that it would be of benefit in MS.
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Re: calcitriol tests

Postby Squeakycat » Sun Jun 22, 2014 4:08 pm

ribeye wrote:Thanks for the info. I'm looking for the single injected dose that would be out of my system in 6-8 hours. I see that long term usage could be a problem. I sure don't need any more damage.

The topical route would be kinda cool but I may have to bathe in the stuff.

Thanks and good health to all.

Ribeye

There is an IV form, Calcijex, but the dose is 1 mcg. We won't know until there is a proper clinical trial what dose has same effect in humans as it did in the Hayes EAE study, but the informal testing has shown that the first dose to have any clinically obvious effect is 15 mcg so that becomes an issue.

Calcitriol has a half life of between 3-4 hours. Most is completely used or degraded within 8 hours and completely gone within 24.
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Re: calcitriol tests

Postby Squeakycat » Sun Jun 22, 2014 4:14 pm

One comment on the informal testing that PointsNorth and a few other brave souls have done is that while we are seeing positive clinical effects at a dose of 15 mcg (and diarrhea above 22.5 mcg), we are not able to measure changes in the immune profile to see whether the effect on the immune system is the same as observed by Hayes in her EAE studies.

We could be having effect at a lower dose, but it may also turn out that a significantly higher dose is required to match the effect in EAE.

The only way to determine this is with expensive tests of CSF immune profile done within the context of a proper clinical trial.

It is encouraging that there have been obvious clinical improvements by everyone who has tried calcitriol, but without testing the CNS immune profile, we don't know what dose has the desired effect. The only way to find this is with a proper clinical trial which is being organized and will need our financial help to support it.
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Re: calcitriol tests

Postby Squeakycat » Sun Jun 22, 2014 4:16 pm

ribeye wrote:Just wondered if anyone has tried an injectable form of calcitriol? Would this eliminate the loose bowels or is that just part of heavy dosing? I will give the oral route a try just to test it out. Will post when I do so. I am rrms so will be interesting to see if results differ.

Thanking you all,

Ribeye

One of the people testing calcitriol did inject it IM and experienced diarrhea. Diarrhea seems to be dose related, regardless of the route of administration. I've looked at data submitted to the FDA for approval and see diarrhea (and constipation) in both oral and IV calcitriol.
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Re: calcitriol tests

Postby Squeakycat » Sun Jun 22, 2014 4:20 pm

CureOrBust wrote:I once was prescribed calcitrol for bone density, years ago. I have no recollection of the dose nor of any noticeable side effects (ie loose bowels)

The dose for bone density was most likely in the 0.5 mcg - 1.0 mcg range.

There is a study of a 2.5 mcg/day trial in MS for 48 weeks, mainly looking at the safety of that dose which appeared to have little effect in MS.
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