Sarcoid Macrophage Proliferation and Vitamin 1,25D

As you know, all you good people with sarcoidosis, one of my favourite things to bang on about is avoidance of vitamin D.

As you know, I have been warning you of the dangers of hypercalcemia. This is ONLY a danger if you take high doses of D and are not concurrently taking steroids or hydroxychloroquine, or not in remission but are are not on these two drugs. Most of the time our own bodies cope pretty well with the overload of 1,25D produced by the macrophages.

I read a couple of disturbing things recently on a UK sarcoidosis website. If Marshmellow touts these things there is no scientific evidence to back it up. You must not be lulled into a false sense of security by such apparent facts as this.

I have just been reading a book on Lung Fibrosis by Tomotsu Takishima. This research by Okabe and Fujisawa confirms what I have seen in a few recent abstracts. This UK sarcoid web site's newsletter piqued my interest when they said there was no science to back up the fact that calcitriol caused the growth and recruitment of monocytes.

I may have mentioned in a recent post that my monocyte count was up along with my 25D level which is rather spooky.

I decided you all needed further warning of the dangers of vitamin D, and I found it is in this book edited by Takishima. A precis of the book occurs below:

"Basic and clinical aspects are discussed by expert contributors in this book devoted to stimulating further studies and developing new therapies for pulmonary fibrosis. Current laboratory and basic findings are reviewed in the book's first 19 chapters, while clinical aspects are addressed in the remaining 16 chapters. These aspects include laboratory and bronchalveolar findings, diagnosis, treatment and prognosis of idiopathic pulmonary fibrosis, collagen disease lungs, sarcoidosis, pneumoconiosis, hypersensitive pneumonia, drug-induced pneumonia, ARDS, radiation pneumonia, BOOP, viral pneumonia, and other diseases causing pulmonary fibrosis. The roles of various cytokines, viral infection, and lung injuries in the development and pathogenesis of pulmonary fibrosis are discussed. The definition, classification, and lung functions of pulmonary fibrosis are included as well."

More details
Basic and Clinical Aspects of Pulmonary Fibrosis
By Tamotsu Takishima
Edition: illustrated
Published by CRC Press, 1994
ISBN 0849389275, 9780849389276

In this book on page 271 it describes how calcitriol, which is also know as 1,25 hydroxyvitamin D3 or 1,25 OH D3 or 1,25D for short; causes stimulation and proliferation of monocytes in vitro. Calcitriol also induces activation and maturation of these monocytes from bone marrow, where they are initially formed. Lysozomes prompt the monocytes morphological changes into macrophages. Monocytes under stimulation of calcitriol also morphed into epithelioid and Giant cells. These three types of cells derived from monocytes are only formed under stimulation of calcitriol and all these three types of cells go into the formation of granulomas. Calcitriol stimulates these changes in a dose related manner. Calcitriol is present naturally in tiny amounts, but it only takes a tiny amount to do these things. The highest amount would by 10 to the power of minus ten. The mitosis of monocytes is stimulated by calcitriol. The team of researchers led by Okabe also tested other human hormones to see if they had effects on the monocyte cells. They looked at other metabolites of vitamin D such as 1 hydroxyvitamin D, 25,25 hydroxyvitamin D, our old friend 25 hydroxyvitamin D. They also looked at other hormones such as testosterone and prostaglandins and found that no other hormone had the same effect on monocytes as calcitriol. The monocytes grow in size and divide in the presence of calcitriol whereas, nothing happened in the control cultures.

At the end of this section this is what Okabe et. al. say:

"Our observations ... support the notion that people living in areas where exposure to sunlight is limited would be more susceptible to sarcoidosis. A small increase in D3 levels in serum would favour granuloma formation is such areas."

This was discovered even before they discovered that the granulomatous inflammation produces an enzyme which converts our own bodies production of 25D into calcitriol. Granulomas beget more granulomas so avoid D like the plague.

If you haven't been following my clinical progress please note that over our summer my own D3 has gone from a very low 27 to a 46 when I began to become ill with migraine, granuloma in the retina and then to a within reference range 55 which active pulmonary sarcoidosis confirmed by CT. I am also anemic. My eosinophils, basophils and monocytes are raised compared with earlier tests. It is not always easy to avoid vitamin D. I have been trying to avoid it and I still became ill, but we have had one of our hottest summers ever. I would be much, much sicker had I not studiously been avoiding D in sunlight and in food. Why hang on steroids if you don't have to? Stay out of the sunlight and you will be a lot better.

Pris

By gonenatural
Posted March 4, 2009 at 4:56 am
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thanks pris for the valuable info. i will keep some and share with others here and on the outside as needed with name omitted of course.

By 42many
Posted March 5, 2009 at 10:29 am
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What false facts are you referring to? I've been told from the outset (and read) to avoid D and that active granuloma production increased ACE levels (but not well enough to rely on that test to gauge the disease process).
My disease falered like mad while living in Florida for six years. Initially diagnosed as Lupus.
I returned to the Northwest (Spokane where we have as many sunny days as Florida, but colder so we are covered up) and experienced a remission of about nine months.
I cannot tolerate the heat or the sun. En goes nuts and hair falls out, fatigue and muscle weakness...

By priscurl
Posted March 5, 2009 at 5:50 pm
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Hi 42Many,

Thanks for confirming your personal experience with the sun with us all.

I guess what is considered 'false' is the fact that this scientific work has not been backed up in vivo studies. It was only cells in a petri dish exposed to 1,25D, 25,D, testosterone, prostaglandins etc. However, it is not 'false' science. And it was nothing that was done by Marshamellow and co. as many people are under the assumption that it is, e.g this UK support group. The study was done by a team of Japanese researchers and I think similar experiments have been done by Italian researchers led by Dr Agostini.

However I would say what happens in vitro also happens in vivo too, from my own personal testing over the last few months

In August the D was low. ESR and CRP normal and monocytes 0. In December, D had risen markedly, but still low, CRP had risen but ESR still normal, monocytes were still 0. I was symptomatic at this stage. Recent test in February, D now in normal range, CRP back to normal but ESR had now risen and so had monocytes. Active sarcoid confirmed by CT. I say monocyte rise is an indicator of the sarcoid activity and their proliferation under D.

Pris

By luv2fysh
Posted March 5, 2009 at 9:33 pm
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Hi- Perhaps I just don't have the scientific brain for this, but it's so hard for me to interpret it!

I have skin sarcoids (10 yr history) and recently found evidence of sarcoid on my heart. No evidence anywhere else after MRI and PET scan.

The curious part of this is that my PCP noticed that my D levels were low on my last blood draw (3-4 months ago) and advised that I take 1000iu of D daily.

How can my D be low?

By priscurl
Posted March 5, 2009 at 11:36 pm
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Hi Luv2fysh,

D is low in sarcoid because the sarcoid granulomas prevent the normal bodily production of 25D in the liver by slowing down the process. However, this slowing down is in our favour because that means there is less 25D for the granulomas to turn into 1,25D which is the hormone which causes lots of problems for people with sarc.

Low D in sarcoid should not need supplementation unless Parathyroid hormone, urine and blood calcium as well as 1,25D and ACE have also been checked.

To supplement with D on the basis of a single D test alone is downright dangerous.

We have had seven incidences here of patients being admitted to ER with hypercalcemia after supplementing D and one incident of surgical removal of a kidney stone following a hot summer.

If you begin to get very thirsty or needing the bathroom lots, you must go to the PCP immediately and demand a calcium test.

Pris

By kbrown3112
Posted March 7, 2009 at 11:02 am
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This is a very interesting topic, but I have to wonder whether the benefits of minimizing vit D to decrease granulomas is worth the risk of so many other diseases and disorders that are caused by not getting enough vit D. We know that the amounts of vit D recommended daily have been found to be much lower than what the body really needs, and vit D plays a role major role in bone formation and maintenance as well as its ability to decreasing your chances of getting cancer, other autoimmune diseases, infectious diseases and many, many other things. I would highly encourage anyone to study for themselves the positives and negatives of vit D because science is finding out more and more every day about vit D and its benefits. If you are interested, Scientific American wrote a very good article about vit D, its properties (it also goes in depth about how it is made or synthesized on a chemical level) as well as the many roles it plays in the human body to fight off disease. The article is below:
http://www.sciam.com/article.cfm?id=cell-defenses-and-the-sunshine-vitamin

By priscurl
Posted March 8, 2009 at 3:58 am
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Hi,

None of the benefits of vitamin D apply to people with active sarcoidosis. We get more than enough vitamin D produced by sarcoid granulomas that we don't need any extra from food or the sun. The inflammation produced by sarcoid granulomas is generated by 1,25 hydroxyvitamin D. This vitamin recruits more cells from the bone marrow and blood stream in order to manufacture more inflammatory granulomas. Hi levels of 1,25D = high levels of sarcoid inflammation = cancer risk. Ignoring D avoidance in sarcoidosis may increase your risk of cancer.

If you take supplementary D with active sarcoid inflammation you will end up with hypercalcemia.

My D has gone from 27 to 46 to 55. That increase has caused a reactivation of sarcoid. I was fine when my D was at 27, I wasn't when it got to 46 and higher. It is hard to avoid D in food or sunlight but is worthwhile.

Vitamin D of any sort in sarcoidosis is like Coals to Newcastle. None of what the D lobby says applies in, or to sarcoidosis. One of the heads of the lobby, Dr Michael Holick will admit as much himself. Dr Mercola is another sight which touts the benefits of vitamin D, except for people with sarcoidosis.
My government and the British government classifies administration of vitamin D to people with sarcoidosis as a group of vulnerability. It is only safe to take D in total remission or on prednisone or plaquenil.

Pris

By priscurl
Posted March 8, 2009 at 6:49 am
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This is what one Doctor has on his own site regarding vitamin D.

http://articles.mercola.com/sites/articles/archive/2002/02/23/vitamin-d-def iciency-part-one.aspx

However, at the base of this article under a red heading it has:

"People Who Should Avoid Vitamin D

If you have sarcoidosis, tuberculosis, or lymphoma, it would be best for you to avoid oral vitamin D supplementation based on this test. It is recommended that you perform the 1,25(OH)D test before you supplement with any sun exposure or oral vitamin D as it is a better indicator in people with this health challenge. "

You must test this D not the D the doctor usually does. It will most likely be low. But where this is often low in these diseases, the bioactive, bioavailable form of D is in great excess. Adding more D will only create even more excess of bioactive D which will raise serum calcium levels.

It is beginning to get out there folks.

I witnessed what Citrical D did to my own Dad who had lymphoma. It turned his skeleton into chalk and he lost a lot of height and developed a hunch back. Yet he didn't break any bones, even when he collapsed. This had nothing to do with the fact he was taking Citrical D. It is due to the paranoia around osteoporosis is not warranted. He had severe osteoporosis caused by the disease and worsened by the medicine Citrical D. Any D will make the disease worse.

Pris

By jolt
Posted June 5, 2009 at 5:46 pm
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Based on these Vitamin D threads, I talked one of my docs into some extra tests. I am still waiting for the 1,25 result to come back from North Carolina, and for the 24 hour urine calcium, but here are the other numbers.

25 D is 20.6, that's up from 7 about 6 weeks ago. Besides getting more sun here near Seattle, I also have been weaning from prednisone, and have been at 5 mg for those 6 weeks. I also let the doc talk me into taking the 400mg or whatever is in the One-a-day vitamin for men. I stopped those today.
PTH is 30, which appears to be normal. But I asked them to check testosterone too, and that is 157. Now, I know there can be many reasons for hypogonadism, but I do not think I need to look any farther than the sarcoidosis at this point.
Monocytes are 5.9, but 6 weeks ago they were 13.1. Lymphocytes are low, and Eosinophils are high, but I do not know if they have anything to do with inflammatory processes.
Serum calcium is 9.1, in normal range. I have had several kidney stones the last couple of years, whenever prednisone dose is low or weaning, and so I finally realize thanks to you good people why they occur late summer or fall for me, because they build up over the summer. I passed one a few weeks ago. In anticipation of a high urine calcium, and because of eye issues, I do not believe 5mg is going to cut it for me, especially during the summer. I started myself back on 40mg today, and will test again in a few weeks. So between my PCP, my oncologist, pulmonary, and ophthalmologist, we can decide where to go with the dosage. I have diabetes, so have to start shooting up with insulin again. Maybe I'm a candidate for a different treatment now, at this point I don't see any way to get away from the prednisone.
I will post the other results in a couple of days if anyone is interested. Thanks again for the enlightenment, Steve

By priscurl
Posted June 6, 2009 at 1:15 am
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Hi Steve,

I am really glad that you sensibly have had the blood tests done. Any D analytes results will be affected by prednisone. Prednisone decreases the 1,25D production by sarcoid granulomas. If you are on prednisone you can add about a 1/3rd to the result to get a real idea. Prednisone will also decrease your 25D level long term but the lower the dose of prednisone, the less affect it has on sarcoid granuloma. I didn't make it very clear in what I wrote above. 1,25D and Calcitriol are one and the same thing. It is actually a hormone and not a vitamin. Drs don't won't change it from vitamin to hormone because they fear patients will become frightened of taking a hormone rather than a vitamin. With good reason. Hormones are dangerous things when they go awry, since they maintain balance in our bodies.

Your blood cell results show a pretty typical sarcoid picture. It is pretty common for people with active sarcoid to have low lymphocytes and high eosinophil counts. The fact that the eosinophils and basophils are up a bit, and the lymphocytes down, shows that despite being on prednisone, your sarcoid is not controlled and it will run away again once you are off the pred. No doubt it is all the pred you have had to take which has caused your diabetes. You are an ill chappie, which is why your testosterone level has gone on the blink. We are alive to reproduce, however, when we are ill, all resources are re-routed to keep the organism alive rather than for production of new organisms. Good on you for having the courage to treat yourself, but get help soon because of the diabetes. I too have had to up the dose of prednisone at times. I have found from experience that waiting around for the okey doke of doctors can mean you suffer for several months. I do it, then tell em about it. I have never been scolded yet. It is not uncommon for people with long-standing chronic illnesses to do this, after all, they often have the drugs on hand, and also know the natural history of their disease, but you should always confirm with the doctor that you are doing the correct thing. The fact that you have associated your stones with late summer and early fall shows the role that excess vitamin D plays in sarcoidosis. While not all sarcoid patients suffer from kidney stones or recurrent bouts of hypercalcemia as you do, they will if their doctors test the D level, see it is low, and then put the patients on supplements. People with active sarcoid should never be put on D supplements or even calcium, whether they have a history of kidney stones or not. The only time it is safe to take D vitamins is when the sarcoid is in remission or when on highish doses of prednisone, plaquenil or ketaconazole. They should not be put on Actonel or Fosamax either. One man at this site ended up with hypercalcemia while on low doses of prednisone. Therefore, prednisone has to be high enough for it to be safe to take D.

Pris

By bgreis
Posted June 6, 2009 at 5:46 am
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I am so glad that the word is getting around about vit D and Ca dangers! I am still receiving advice from physicians to suppliment with both! It has been generally accepted for a long time that patients with Lupus should avoid sunlight. I wonder why a urine calcium level isn't checked more often on sarkies, especially when we start having urinary symptoms?

Bev

By priscurl
Posted June 6, 2009 at 8:39 am
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You could try asking for such a test,
up to 63% of sarckies have high urine calcium levels at some stage during their disease. Mine hasn't been high, but it was only ever tested once and it was only just inside the reference range. My PTH was very, very normal. Neither of these results are indicative of vitamin D deficiency, even though my vitamin D was very low at the time. This is why doctors cannot assume a low vitamin D is a low vitamin D with sarcoidosis patients. The vitamin D in sarcoid is low because the body's hormones are suppressing the usual means of manufacture in an effort to avert hypercalcemia because the sarcoid granulomas are also producing vitamin D. However, the sarcoid vitamin D is not fully suppressed because, while the body can stop its normal means of vitamin D production hormonally, it cannot stop the sarcoid granulomas making it, it can only stop the liver making the precursor. This precursor is the vitamin D which is measured by doctors. Doctors never test 1,25D which is actual vitamin D because an enzyme produced in the kidneys breaks any excess vitamin D down. This means 1,25D is always normal in people who don't have an extra source of manufacture like sarcoid granulomas. The rub is, since the kidneys don't make the excess D, the enzyme which breaks down excess D won't work on sarcoid produced D. Sarcoid D is outside the normal system, so it is not recognised. The blood test for vitamin D only measures the liver made vitamin D and not the excess granuloma D. Therefore, high D is not picked up in this test. This is where a doctor and patient who don't know about sarcoid produced vitamin D can get into strife. If the doctor thinks the liver made D looks low, he will give the patient vitamin D tablets. All this supplemental D which goes into the body is called cholecalciferol. So it is already a form of the vitamin D made by the liver which is called calciferol. This calciferol is normally made into calcidiol or 1,25D by the kidney. Except in sarcoid, there is a hormone system telling the body to stop making calciferol because it doesn't want any more calcidiol made - it has too much. On the other hand the doctor thinks your calcidiol level must be low because your calciferol level is low. Problem for sarcies is that while the hormones are keeping liver and kidney production of D in check, the granulomas have a field day and convert all the ingested cholecalciferol into calcidiol or vitamin 1,25D. The idiot doctor has given you the D to up your calciferol level in order to calcify your bones, however, high calcidiol levels do the opposite and pull calcium out of your bones at a faster rate than even prednisone can. In fact, in this situation, prednisone is one of your best friends because it stops the granulomas from producing calcidiol and slows the calcium being pulled from the bones. Should you have too much calcium in the blood, prednisone is what doctors usually give you anyway.
Pris

By StillAliveNwell
Posted June 6, 2009 at 6:37 pm
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Pris, I have so much respect you with all the time and knowledge that you share with the group. I am new here and I never had a problem with D until my pulmonary doctor did a bone density test on me last year. it was low and he prescribed fosamax D for me, and it was very soon thereafter that I had kidney problems. I noticed I was having a difficulty in urinating as well as the frequency to go, going up exponentially. It felt like I had a UTI 24/7 so I took myself off it it immediately and sought out a highly respected Kidney Specialist. He is the one that told me about the body overproducing D and that I was overdosing on it with the supplement. I donot have blood tests now but twice a year and it seems I am more fortunate than most of you. I have copd along with the sarc, and I am on prednisone sparing agents, Plaquenil. Imuran and bactrim. So far the quality of life for me has been amazing. My sarc is in my lungs and my breathing tests went from 42% capacity to 55% since I have been on the regimen. I am so glad that I took a moment to check out this website. The weird thing about our illness, is that no two people share the same story. So I will be reading and learning, and if there is anything I can add to help anyone, I will surely chime in. Once again Pris, thank you for all of the research that you do for the rest of us, you truly are a saint :)

By ncwoolgatherer
Posted June 6, 2009 at 10:56 pm
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Pris
As always you are a wealth of useful information. Went to see my neuro last Tues for follow-up visit. Since I've been off pred for 4 mo. and I've noticed that I feel very ill within 24 of even a few hours of sun, I was determined to get him to order 25,D ,1,25D and PTH to compare to my November results when I was still on pred. (My primary care doc had ordered that for me) My neuro had never heard of what I was talking about and finally agreed to order 25,D only. If it comes back low and he tells me to take D supplement I'm going to insist that we get the whole picture before I do so.

My guess is that he doesn't see that many sarc cases even though he is @ Duke.

By priscurl
Posted June 7, 2009 at 8:03 am
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Hi ncwoolgatherer,

You need 25D to make 1,25D whether you have sarcoid or not. Not only does prednisone substantially reduced the production of 1,25D by sarcoid granulomas, but being on prednisone for long periods can reduce the amount of all D. However, being off prednisone, things can revert quickly, especially if you are not well. If you had a low 25D on prednisone, it could be that you have a deficiency. However, a low 25D off prednisone could be a sign of granulomatous inflamation and not deficiency. This is why the other tests are necessary in sarcoid.

Low 25D in healthies usually means low 1,25D and that spells deficiency.

A low 25D in sarcoid could be a deficiency, but unless the 1,25D and parathyroid done you won't know.

Giving healthies 25D will up their 1,25D only within the normal range and never ever above it. Even if they gobble heaps of D tablets, their 1,25D won't get above the normal range. They can gobble D tablets to the point where it is deadly and their 1,25D will be in range.

This is not the case for sarcies. There are two reasons sarcies have low 25D. 1. is that the hormones have told the liver to stop production of 25D because the sarcoid granulomas are making too much 1,25D so we don't need anymore 25D in the body. The other reason is that any D coming into the body through sun, tablets or food is very quickly converted to 1,25D by the granulomas. Therefore, it gives the appearance of being a deficiency, but it is the exact opposite, it is overproduction.

The difference between a low 25D in deficiency and a low 25D in sarcoidosis lies in the other two analytes. These analytes are 1,25D and parathyroid hormone.
In a deficiency state the 1,25D may be low, but it could also be quite normal. So how do we prove it is a deficiency if the 1,25D is normal. We have to do a parathyroid hormone level. If that test proves to be out of range, then yes, we have a deficiency because the job of parathyroid hormone is to tell the liver to produce more 25D in order for the kidneys to make 1,25D. If there is not enough 25D to be had, the parathyroid hormone will continue to rise in the bloodstream in order to goad the liver into production. But if the person isn't getting enough sune or D in food, they may need to be helped with a supplement.

In sarcoid, the opposite happens, despite the fact the 25D is low, the 1,25D will be high. This is because the most of the 1,25D is not coming into the bloodstream via the normal skin, liver and kidney route. Any 25D coming from the liver is being transformed into 1,25D by sarcoid granulomas. In deficiency, parathyroid rises to tell the liver to produce more 25D, but in sarcoid the granulomas are converting this 25D into copious amounts of 1,25D. The parathyroids detect the high level of 1,25D in the blood and it begins to stop secreting parathyroid hormone. In other words, it lowers parathyroid hormone to tell the liver to stop making 25D. This is one reason 25D appears low, because the parathyroids have decreased production of the stimulatory hormone. So in deficiency parathyroid hormone is high, but in sarcoid it is low.
There is another mechanism by which the body regulates itself and that is enzymes made by the kidney. The kidney turns 25D into 1,25D, but when the kidney detects too much 1,25D has been converted from 25D, it sends out enzymes which break down the 1,25D before it can get to the bones and leach out calcium. In sarcoidosis, the vast amount of 1,25D in the bloodstream was not manufactured by the kidney, but by sarcoid granuloma. The kidney does not secrete the enzyme to degrade the 1,25D made by the granulomas because it does not recognise it. It is alien 1,25D and therefore it is not able to degrade the 1,25D and it continues to build up in the bloodstream and leach calcium from the bones. Prednisone will reverse the situation quickly.

Here it is again

Deficiency 25D low
1,25D low or normal
Parathyroid hormone - high

Active Disease
Sarcoid 25D low
1,25D high
parathyroid hormone low

So you see, a low 25D is not conclusive

Supplementing cholecalciferol will increase 25D and normalise, but never raise 1,25D levels, in deficient persons because of enzymatic control by the kidney.

Supplementing cholecalciferol in sarcoidosis patients will not substantially increase 25D levels in sarcoidosis patients, but will increase and continue to increase 1,25D levels because the enzymatic control is nonexistent.

Supplementing deficient patients will lower PTH levels to normal, and should the patient continue to take the tablets long after deficiency is relieved, their PTH will continue to lower but the 1,25D will never rise, only their 25D. They will get hypercalcemia, but their 1,25D will stay within normal range.

Supplementing sarcoidosis patients will see PTH or parathyroid level, plummet to zero, along with 25D which will remain steadfastly low or normalise, but it will never rise to high limits because of the PTH control. Hypercalcemia will set in long before the 25D has a chance to rise. 1,25D will rise to very high levels because the enzymes don't recognise granuloma converted 1,25D.

Pris

By priscurl
Posted June 7, 2009 at 8:20 am
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Hi StillAliveNwell,

Sadly I am no saint, I can assure you of that. I knew of the problem of D and sarcoid about 3 years before I found this site. I knew D was bad for sarcoid, so I avoided sun in summer and knew not to take D supplements. I knew also, that some people with sarcoid were susceptible to kidney stones and hypercalemia - but these were special cases. What struck me when I came to this site was a string of people who probably would not have developed these problems left to their own devices. At about the time I joined this site, my key specialist suddenly did a vitamin D test and found it to be low. My first question in "treatment decisions" was put to this site. I said I knew D was bad, should I take it or not, since a doctor is telling me I must? I got an email from a lady who told me she took D and ended up with hypercalcemia in hospital. She was not the only one. There were several others that this has happened to. So I decided to read up on it and study it as much as I could and warn people what could happen if they followed their doctor's orders. Paradox also helped by alerting people to the tests. Paradox chiming in helped me. I went to my doctor and told her what I had learned and what Paradox suggested. I had the tests done and was surprised at the results. Had I taken the D supplements, I would have ended up like the first lady who emailed my. Sure, my vitamin D was low, but my urine calcium was just within the reference range and my PTH was absolutely normal, not high as it would be, had I truly had a D deficiency. Therefore, my low D was not a deficiency but an aberration of sarcoid disease. Supplementation would have advanced that disease and caused osteoporosis and a lot worse. Drs are beginning to learn about it, but there are still an awful lot who don't know about it.

Pris

By StillAliveNwell
Posted June 7, 2009 at 1:27 pm
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ok Pris here goes....
I supposedly was in care by one of the world's leading Sarcoid specialists, Dr. O.P.Sharma. Well I have learned more from you in 2 days than all of my doctors combined on my illness. Now maybe what I say next will put some pieces of my puzzle together. I grew up at the Beach in Los Angeles. Since 1971 I spent most of my time at the beach with friends and I also surfed until the early 80's. I formed a rock band and drummed and sang, for me life couldn't be better. In 1973 my right eye became very sensitive to light, so I wore very expensive pilot's sunglasses and that seemed to fix the problem. Everyone thought I was stoned all the time due to the redness. Also in 1973 I had my first kidney stone, actually it was 3 and my girlfriend called an ambulance because I passed out from the pain. They wanted to do surgery but luckily for me I passed all three as they were prepping me for surgery, oh yes I could tell they had passed because the relief I felt made me exhale and sigh for the first time in 2 days. From 1973 to 1990ish I passed another 20 stones, give or take a couple. One was so bad that I literally had to pull it out because it was stuck at you know where, and I couldn't urinate, it was half the size of a dime. In those days I didn't drink a lot of water, but since that day I drink plenty and have had but just a couple of stones and I don't even feel them. So now I have to wonder? Have I possibly had sarc all this time? Were all of these stones due to my time spent in the sun? Because I never got an answer from any of my doctors. In 2001, I woke up one morning and in that same right eye, I woke up blind. I didn't panic, heck I didn't even tell anyone for a day. I went to USC med center to see a specialist and after some tests, it was deemed that both eyes had major hemorrages around the optic nerve and I was told nothing could be done. I shouldn't have listened to them because later at UCLA I was told it could have been saved. So I got glaucoma real bad in that blind eye, went through hell and back with pain and had it removed, and the flack I got about requesting that was amazing. Noone wanted to do it, til I talked to the best at UCLA. Noone has determined why I lost the eye, was it sarcoid? High blood pressure spike? I will never know. I never really monitored my Sarc, because I have chosen to have it be in the background, rather than something I think about. I was bedridden from 1996 to 1998, but I still managed to go to work. For me to wash a load of laundry, it sapped all of my energy for 4 hours. Then one day my life changed, and I truly feel this was the first time that God decided to intervene into my life. My little boston terrier, jumped onto my bed, leash in mouth, cried and cried for me to walk him. I walked him every day before I suddenly was bedridden. Noone in the house was around so I pulled myself out of bed, threw on some clothing and told my pooch, ok but just to the end of the block and back. Well as I walked, I noticed I felt something...it was energy. So I told myself right then, that the dog was going to be my recovery. Long story short, within 6 months, I was walking him 2-3 miles every day and I got my life back. So I learned, movement begets energy! So now I make sure, even when I am <dog tired> I still take a walk and it always reaps a reward for me. I went on oxygen in 2006, 2 liters of liquid oxygen and was going downhill fast. My breathing function was within 5% of needing a lung transplant. I was at UCLA with one of the leading pulmonary specialists in the country, Dr. John Belpario. He was warming me up for the idea of a transplant, but there was a problem. You cannot receive a donated organ within 5 years of having cancer, well I had prostate cancer in 2005 and had it removed. So he told me he was going to put me on prednisone. Well I have used prednisone on and off since 1996. I told him, doc I would rather suffer than use that drug. My gums and teeth get soft from using it and although it gives me great energy and some great relief, to me the side effects weren't worth it. So he then said ok I will put you on steroid sparing meds, it will be the opposite way of dealing with your illness. COPD and SARC. Well since that day of being put on Plaquenil, Imuran, and Bactrim, my breathing and everything has done an about face and although I am not running any marathons, I can get undressed for bed and not lose my breath for 5 minutes. I use little oxygen right now, but here is my question for all of you...How long can i use these drugs? I don't know much about them. The Imuran is an immunosuppresant and the bactrim is a low level anti-biotic and the plaquenil is for Malaria, yet some of the scarring in my lungs seems to have gone away. So please forgive me, but maybe I have mentioned something here to help someone else, and maybe I will get some insight from someone else about my particular case. God Bless you all and thank you for your support!...Bill

By anniebannannie
Posted June 7, 2009 at 4:01 pm
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Im soo lost, Im on a regular dosage of 800 units of vit d daily & 50,000 a week, I shouldnt be on this?? My Dr ordered me on this bc my vit D levels are very low but now im scared to take it with my sarcoid.. I need to be set straight. Please help??

By priscurl
Posted June 8, 2009 at 8:29 am
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Hi StillaliveNwell,

I would say that it is highly likely your kidney stone problem is due to sarcoidosis. As to the eye problem, yes, even that could possibly be due to sarcoidosis but we will probably never know for certain. Sarcoid can cause problems which lead to glaucoma. This last Christmas gone, I got a severe migraine and woke up with a scotoma which is a shadow in the visual field. I went to the doctor when it didn't disappear with the migraine. He sent me to hospital emergency. The doctor thought I had a detached retina. When they checked my eyes at the hospital, they found a lesion right beside the optic nerve which they thought could be sarcoidosis because of my history. A chest x-ray was inconclusive but at CT showed sarcoid. I was put on prednisone, and it cleared. So it is highly probable that most of your problems were due to sarcoidosis and undiagnosed sarcoidosis.

Pris

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