Vit D in sarc

[Guest guest]

It's probably because of the Vit D content. Vit D, calcium & sarc is a complex, controversial issue. Some people with sarc have problems metabolizing Vit D. They can develop hypercalciuria (high calcium in the urine) and/or hypercalcemia (high calcium in the blood). This can cause a wide range of symptoms & health issues. From the research I've done recently, it seems that the traditional testing for these disorders is inadequate. Most of the info I found was very technical & difficult for me to understand (I was a nurse & certified nurse-midwife for 35 years). I feel that the most reliable info I found was on the Inspire forum. Inspire is an online patient support community sponsored by FSR (Foundation for Sarcoidosis Research). There are two contributors with experience in lab science (Pris & Paradox). As best as I could understand it, their resources seem solid, especially Dr. Om Sharma. Based on this info, I intend to ask my PCP for additional testing at my next visit, especially since I've had chronic renal insufficiency for several years, with no cause found. Here are some excerpts from the Inspire forum, which will hopefully provide at least a starting place for research. Mitch, our own nutritional expert, may have some input as well.

Here is the stuff from Inspire, as well as a link: http://www.inspire.com/groups/stop-sarcoidosis/discussion/vitamin-d-3/?page=1#replies You are wise to persist in educating her since her info is outdated and dangerous! One in six sarcies is affected by D and calcium problems which causes D hypersensitivity or hypercalciuria and hypercalcemia."If you have sarcoid, you might also get a urine calcium done. If you have high levels of calcium in the urine, you are at risk of developing high levels of calcium in the blood if given vitamin D supplements. High doses of prednisone will reduce high levels of calcitriol and calcium caused by sarcoidosis - but likewise, if the calcitriol and PTH level are caused by parathyroid tumors, then prednisone will not help. Therefore, you need to know all three hormone levels, before you embark on a treatment program. One alone is not good enough because there is only a 50/50 chance you will be treated correctly. If you have calcium in the urine on prednisone, the prednisone is not controlling the sarcoidosis properly and taking D supplements or calcium may be risky." This is from Dr Sharma's web site q and a on sarcoidSharma is a sarcoid guru and is the author of a paper on sarcoid and hypercalcemia. Most doctors it would appear, even those treating sarcoid, have not read it, or they wouldn't be so keen to push the vitamin D.See http://www.sarcoidosissharma.com/commonlyaskedquestions.html68. Do I have to observe dietary precautions? About one in ten patients with sarcoidosis has high blood calcium levels. If your calcium level is high. avoid calcium rich substances such as milk, cheese, and any vitamins containing calcium. Also, avoid direct sunshine and vitamin D if your calcium level is high. 69. Should I take vitamin supplements? Be careful about taking calcium supplements and vitamin D if you have sarcoidosis, but other vitamins are harmless. Vitamin therapy is not indicated in the treatment of sarcoidosis, but unless you are taking excessively high does of any vitamins, you can continue your supplements. Do check with your doctor, however, before continuing with very high doses of vitamins.PRisBefore she prescribes suppliments ask her to please read papers on vitamin D and sarcoidosis by Dr Vieth, Dr Holick, Dr Sharma or Dr all are on the Vit D Council.Priscurl is the expert on Vit D here, and her advice is very sound (Thank you, Priscurl, if you're reading follow ups)--It's corraborated by others on this site and in the literature. Several weeks ago, my 25D was low-right at the level of a deficiency so my doctor prescribed 50,000IU of D weekly. Instead of filling the Rx, I made another appt with her and asked her to do a 1,25D test and a PTH (which I originally asked for and she didn't do). A week later and the call came from her: Do not take the Vitamin D I prescribed. Your 1,25D is high. My blood calcium is on the low side, though, so I'm not sure what that means--so back to doing more research--it seems like this will be a life long calling: read, ask, advocate (Rose's emphasis). So--wait for your sarc doc or advocate for yourself with this one! Good luck to you! Sharon

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: acepilot44@...Date: Mon, 10 Jan 2011 08:18:30 -0800Subject: Re: neuropathic pain

Arizona sound great right now, Wisconsin winters really ........ New to this site and have a question regarding intake of dairy, my friend has been advised not to use dairy by her Dr. Is it because of the histamine problem or something else?

To: Neurosarcoidosis Sent: Sun, January 9, 2011 7:23:17 PMSubject: Re: neuropathic pain

I'm wondering if anyone had tried Light Relief or something like it? i am thinking about ordering it. The pain from the cold is too much for me and when i try new meds they seem to give me side effects. I wonder if moving to Arizona or another warm place, in the winter would help. Right now i am not 'dancing'...but trying to stay warm. the cold goes right to the core of my being and i am feeling paralyzed and not getting much done. I still have my tree up. We bought a PS3 with Move for Christmas and I have been smashing bugs on Let's start the Party. It's about all the exercise i can do this time of year. ...and it's fun! p.s. i bought my cats a dvd that they watch on the tv...w/squirrels, birds, bugs and fish. they watch it, too! Life may not always be the party we hoped for, but while we're here we might as well dance!

Mitch, my neuropathy takes many forms, including feeling like knives sticking my feet, to where it really hurts to walk. Other times it feels like my feet will explode & I can hardly stand to have anything touch my feet, including my socks, even tho they are really loose socks. That sensation comes from having my feet dependent too long, so I carry a folding camp stool everywhere I go, to put my feet up. I've also felt like a crab was biting my toes--just the big toes. That's really painful, but doesn't last long. Along with the pain I have numbness. If I've had to drive too much, it feels like there are thick pieces of foam rubber on the bottoms of my feet, so that it's difficult to tell how hard I'm pressing the brake or gas pedal, but at the same time it hurts. Like your pain, it's hard to explain. It sounds crazy. The worst thing for me is to get stuck in a traffic jam on the freeway--stop & go, stop & go--I just cannot stand it, but I have to. Sometimes I cry, sometimes I cuss, I always beg God to get that traffic moving so that I can turn on the cruise control. In addition to all these sensations I periodically get an intense itch that is almost worse than the pain. Nothing relieves it; it's a "hot" itch, if that makes any sense. Like the crab, it doesn't last more than a few minutes, at least so far. All of these sensations have progressed gradually over 8-9 years & started with the feeling that I had pieces of tape stuck on the bottom of my feet. So maybe your pain is not neuropathic, but I never knew neuropathic pain could take so many forms until it happened to me. After researching it, I've learned that many people have different symptoms, depending on which nerves are affected. I've been blessed with both small & large fiber neuropathy--hit the jackpot, I guess. Sorry about the rambling & I hope your mystery pain doesn't return. All of this information is for the group, not necessarily for you. For anyone with neuropathic pain, or wondering if you have it, there is very good info at www.theacpa.org. This is the American Chronic Pain Association & they have wonderful info & resources. On the homepage, there is a place to click Conditions A-Z, then click on neuropathic pain or peripheral neuropathy; or any others that you need info on. At the bottom of the peripheral neuropathy page are links to the Mayo Clinic site & NINDS.NIH, National Institute of Neurological Disorders and Stroke/National Institute of Health. The NINDS site has a lot more info.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

I don't post here very often but I find your comments very helpful. In addition

to what has already been said, here is an excellent reference. , S.

Extrarenal Production of 1,25-Dihydroxyvitamin D and Clinical Implications. It

is Chapter 20 in the textbook entitled Vitamin D---Physiology, Molecular

Biology, and Clinical Applications. ISBN:0-89603-467-4

It is written so that you can understand it and has specific information that

you can take to your doctor regarding diagnosis,screening, prevention, and

treatment particulary in sarcoidosis. I found it in our local university

library.

>

>

>

>

>

>

> Mitch, my neuropathy takes many forms, including feeling like knives sticking

my feet, to where it really hurts to walk. Other times it feels like my feet

will explode & I can hardly stand to have anything touch my feet, including my

socks, even tho they are really loose socks. That sensation comes from having

my feet dependent too long, so I carry a folding camp stool everywhere I go, to

put my feet up. I've also felt like a crab was biting my toes--just the big

toes. That's really painful, but doesn't last long. Along with the pain I have

numbness. If I've had to drive too much, it feels like there are thick pieces

of foam rubber on the bottoms of my feet, so that it's difficult to tell how

hard I'm pressing the brake or gas pedal, but at the same time it hurts. Like

your pain, it's hard to explain. It sounds crazy. The worst thing for me is to

get stuck in a traffic jam on the freeway--stop & go, stop & go--I just cannot

stand it, but I have to. Sometimes I cry, sometimes I cuss, I always beg God to

get that traffic moving so that I can turn on the cruise control. In addition

to all these sensations I periodically get an intense itch that is almost worse

than the pain. Nothing relieves it; it's a " hot " itch, if that makes any sense.

Like the crab, it doesn't last more than a few minutes, at least so far. All of

these sensations have progressed gradually over 8-9 years & started with the

feeling that I had pieces of tape stuck on the bottom of my feet. So maybe your

pain is not neuropathic, but I never knew neuropathic pain could take so many

forms until it happened to me. After researching it, I've learned that many

people have different symptoms, depending on which nerves are affected. I've

been blessed with both small & large fiber neuropathy--hit the jackpot, I guess.

Sorry about the rambling & I hope your mystery pain doesn't return. All of this

information is for the group, not necessarily for you. For anyone with

neuropathic pain, or wondering if you have it, there is very good info at

www.theacpa.org. This is the American Chronic Pain Association & they have

wonderful info & resources. On the homepage, there is a place to click

Conditions A-Z, then click on neuropathic pain or peripheral neuropathy; or

any others that you need info on. At the bottom of the peripheral neuropathy

page are links to the Mayo Clinic site & NINDS.NIH, National Institute of

Neurological Disorders and Stroke/National Institute of Health. The NINDS site

has a lot more info.

>

>

> Ramblin' Rose

> Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

[Guest guest]

Thanks for the input; I'll look it up!

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!)

> To: Neurosarcoidosis > Date: Wed, 12 Jan 2011 16:06:11 +0000> Subject: Re: Vit D in sarc> > > > I don't post here very often but I find your comments very helpful. In addition to what has already been said, here is an excellent reference. , S. Extrarenal Production of 1,25-Dihydroxyvitamin D and Clinical Implications. It is Chapter 20 in the textbook entitled Vitamin D---Physiology, Molecular Biology, and Clinical Applications. ISBN:0-89603-467-4> > It is written so that you can understand it and has specific information that you can take to your doctor regarding diagnosis,screening, prevention, and treatment particulary in sarcoidosis. I found it in our local university library.> > > > > > > > > > > > > > > > > Mitch, my neuropathy takes many forms, including feeling like knives sticking my feet, to where it really hurts to walk. Other times it feels like my feet will explode & I can hardly stand to have anything touch my feet, including my socks, even tho they are really loose socks. That sensation comes from having my feet dependent too long, so I carry a folding camp stool everywhere I go, to put my feet up. I've also felt like a crab was biting my toes--just the big toes. That's really painful, but doesn't last long. Along with the pain I have numbness. If I've had to drive too much, it feels like there are thick pieces of foam rubber on the bottoms of my feet, so that it's difficult to tell how hard I'm pressing the brake or gas pedal, but at the same time it hurts. Like your pain, it's hard to explain. It sounds crazy. The worst thing for me is to get stuck in a traffic jam on the freeway--stop & go, stop & go--I just cannot stand it, but I have to. Sometimes I cry, sometimes I cuss, I always beg God to get that traffic moving so that I can turn on the cruise control. In addition to all these sensations I periodically get an intense itch that is almost worse than the pain. Nothing relieves it; it's a "hot" itch, if that makes any sense. Like the crab, it doesn't last more than a few minutes, at least so far. All of these sensations have progressed gradually over 8-9 years & started with the feeling that I had pieces of tape stuck on the bottom of my feet. So maybe your pain is not neuropathic, but I never knew neuropathic pain could take so many forms until it happened to me. After researching it, I've learned that many people have different symptoms, depending on which nerves are affected. I've been blessed with both small & large fiber neuropathy--hit the jackpot, I guess. Sorry about the rambling & I hope your mystery pain doesn't return. All of this information is for the group, not necessarily for you. For anyone with neuropathic pain, or wondering if you have it, there is very good info at www.theacpa.org. This is the American Chronic Pain Association & they have wonderful info & resources. On the homepage, there is a place to click Conditions A-Z, then click on neuropathic pain or peripheral neuropathy; or any others that you need info on. At the bottom of the peripheral neuropathy page are links to the Mayo Clinic site & NINDS.NIH, National Institute of Neurological Disorders and Stroke/National Institute of Health. The NINDS site has a lot more info.> > > > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >