Why did (former) GP prescribe Vit D and sunshine?

• By rascalsmom
• Posted September 13, 2009 at 4:34 pm
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If you are on prednisone, your vitamin D levels are important for maintaining healthy bone density. Many times after going on pred, a person's vitamin D levels drop due to a decrease in macrophage activity. This is just a guess since I'm not your doc or looking at your lab results.

Be careful about information out there that suggests that vitamin D may be related to sarc activity. It isn't necessarily so. However, sunlight is a stress physically, and stress does affect sarc activity for many people.

Just my thoughts, Rascalsmom

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• By BeccaSF
• Posted September 13, 2009 at 6:06 pm
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My GP suggested the exact same thing for the exact same reason that Rascalsmom mentioned, bone density.

I have not begun using it yet as she only just suggested it last Friday, but I hope it doesn't have an adverse affect on my Good/Bad days.

I'll keep you posted after I've tried it for a bit.

~Becca

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• By bkacz
• Posted September 13, 2009 at 6:13 pm
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As far as I know not everyone with sarcoidosis has the problem with vitamin D and calcium. I do have this issue and have to be careful not to take in extra vitamin D or calcium. I've had serious complications because of hypercalcemia and was hospitalized. It is common enough that I'm always surprised when someone is prescribed to take supplements.

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• By PurpleSnowflake
• Posted September 13, 2009 at 6:19 pm
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My Vitamin D is very low and I have to supplement. Not all Sarc patients have a problem with to much D. There is however some important information and blood test your doctor needs to do before deciding. You can read more about this on a thread Priscurl put on here for us. She is very knowledgeable about Vitamin D. If you type her name in the top search engine it will pull up her threads>

God bless and take care

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• By Angelfox
• Posted September 13, 2009 at 8:27 pm
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Hi Purl.
I have been on 40m of pred a day for about 2 mo....now dropped to 30 a day.
My pulmonary Dr. told me while I am on the prednesone I need the VitD and calcium...to maintain bone density. I guess prednesone kills the bone...it sure has my daughters hipbone!!!

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• By priscurl
• Posted September 14, 2009 at 7:46 am
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BluePurl, Angelfox and Rascal'smom.

It is NOT CONTROVERSIAL, it is MEDICAL FACT and just because it doesn't happen to many people with sarcoidosis does not mean that it cannot happen to others who have higher sarcoid granuloma loads than others.

Many Doctors just do not know about this problem. Why? They don't go to conferences,or keep up to date with journal articles, or don't have many patients with sarcoid to get experience. It wasn't something that was known about when they went through medical school. It has only been known about for 15 to 20 years, and in medical circles, this means that the research and scientific information is only just getting out to doctors at the clinical level. There is a twenty to thirty year lag in medical science from laboratory to doctor's office and that is a fact. This gap is not from doing research or doing tests to check. It is the gap from proven fact to clinical practice. If some discovery is made, you could die in the interim 20 years it takes to get all the medical profession up to speed with the new fact. Dr Ding Dong who has been practising for 20 years may not know about it, but Dr Flim Flam who graduated just 3 years ago is sure to know about it.

With regard to vitamin D Sarcoidosis and TB are both granulomatous disease with a level of 1-alpha-hydoxylase activity. Vitamin D given to TB patients improves them and can help cure them. The same does not always happen to sarcoidosis patients. Some actually get sicker with sarcoidosis, others develop problems from chronic hypercalciuria, some others get hypercalcemia like Bkacz.

People who are more likely to get problems with vitamin D sensitivity include people who have extensive disease outside the chest cavity, those whose disease is complicated by other conditions such as diabetes or kidney disease; those whose intake of calcium and D foods is extensive; or who take supplements without being properly monitored by their uncomprehending or ignorant (but well -meaning) doctors; or those who live in tropical or temperate regions which get a lot of sun and heat in summer.

Matters are complicated for both doctors and patients by the fashion to see osteoporosis as a disease. These things are forced along by media hype. This is fine for 99% of the general population who don't have sarcoidosis, or are on therapy and don't have vitamin D sensitivity. Vitamin D sensitivity occurs in sarcoidosis because the sarcoidosis itself is a vitamin D factory. When you top this D source up from other sources, occasionally the body cannot cope with the high calcium loads and hypercalcemia ensues. But hypercalcemia is not the only danger for people with sarcoidosis. Hypercalciuria can be happening for years unbeknown to doctor and patient and be destroying your kidney function. This can even be happening while you are on prednisone.

If you have extensive sarcoid disease, your risk of dying from hypercalcemia by taking D and calcium supplements is far higher than your risk of dying of osteoporosis-related fracture. Hip fractures due to osteoporosis once had a high death rate due to clots and static pneumonia. This is because the conditions of treatment once confined patients to bed for traction. The treatment for fracture and new anti-clot therapies have considerably reduced the risk of females dying from osteoporosis-related fracture, the reason osteoporosis drugs and calcium have been pushed by the pharma and medical fraternities.

Unfortunately, the D question in sarcoidosis has been contaminated by controversy because of a certain person whose name we are not allowed to mention here. However, while this fellow's avoidance of D goes over board to the nth degree, that does not negate the fact that D sensitivity is a problem for some people with sarcoid. Far more than the medical fraternity even realise.

If there is any of the various tests that can uncover a problem with vitamin D and calcium metabolism in sarcoid (and there are several). The one I would most recommend people with obviously bad cases of the disease get (and I don't mean if you have just been diagnosed and have a few lymph nodes in the chest) is the 24hr urine calcium level. Urine calcium which is high over a long time period can cause problems with renal function. It has no symptoms. It won't make you feel sicker, hurt to pee or anything. You may get UTIs or get a thirst now and then. You may have more red cells in the urine than normal. You have to have microscopy of the urine done for that. So I would recommend you get an MSU and 24hr Urine Calcium. Even if you are on prednisone - you can still have a high level of calcium in the urine. This means sarcoid is not controlled even if your ACE, sed rate, serum calcium and D levels are normal. Prednisone affects them, but it won't affect urine calcium level. If it is high, you need to be on more prednisone. Prednisone will make you lose your bones down the toilet, but it won't allow you to loose them at the rate unfettered sarcoidosis disease will. Taking vitamin D while taking prednisone won't help your bones either. Prednisone converts all vitamin D made by sarcoidosis tissue into a non bioactive form of vitamin D, therefore it cannot build up your bones. However, neither will it harm you providing you don't have hypercalciuria. If you do have hypercalciuria, low doses of prednisone will not prevent hypercalciuria or hypercalcemia caused by sarcoidosis. The dose needs upping to get rid of that problem. Most doctors wouldn't treat, but new studies from Holland recommend that it should be treated. See short article q and a below.

It is true, because the prednisone transforms all vitamin D into non bioactive forms of the vitamin, that if you have been on the steroids for some time, you may need to supplement if both your vitamin Ds are low and you live in a geographic area of the world where sunlight is in limited supply, eg Canada, U.K. Scandanavia.

However, both my vitamin Ds are low now, and they were the same (slightly worse) this time last year. By the end of summer both were well in normal range. I even got sick with a sarc attack at the beginning of summer when my D went from 6 to 34 in US units in 2 months. The sun will get it up far safer than supplements post prednisone. If you have a high granuloma load, you could end up in Bkacz position on D and calcium or Fosamax unless your doctor knows about extra kidney made 1-alpha-hydoxylase in sarcoidosis and knows to constantly monitor serum and urine calcium levels. The vitamin D council suggest that if you have sarcoidosis and wish to up D levels then your doctor must be knowledgeable about D and sarcoidosis - not osteoporosis. You need to question doctors and if they don't know about D and sarcoid, don't let them treat you. Say you want to be monitored for possible sudden rises in D and calcium levels which could make you seriously ill.

It is possible to have a Low non active D level with a very high bioactive D level with sarcoid. The more non active D in this situation you get into your system, the higher the bioactive level will rise. This will make urine calcium levels rise also. This is why supplemented sarcoid patients often end up getting hypercalcemia. I told my PCP and gave her some articles about sarcoid and D - she didn't know about it. When my condition worsened she asked me to see a colleague who knew more about sarcoid than she did. This worked out well for both of us. As it turns out, I may have renal failure caused by unfettered hypercalciuria for 20 years. Get the urine checked. It could prolong your life - and I am not kidding. A lady I know of died from sarc related kidney failure barely a month ago and my own doc has had two patients get hypercalcemia related kidney failure - only one survived!!!

Please see the following articles and bear in mind it can be worse on the ground than even these doctors believe. Remember, we are in the trenches fighting the war, they are just the generals directing us. Who knows more about what is happening on the ground??

http://rheumatology.oxfordjournals.org/cgi/content/full/39/7/707 *****

http://www.chestjournal.org/content/109/2/535.full.pdf+html *****

http://www.annals.org/cgi/content/full/127/3/203 ***

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=288112&blobtype=pdf *


http://www.biomedexperts.com/Abstract.bme/10560127/Bone_mineral_density_and _vitamin_D_in_patients_with_sarcoidosis

Managing hypercalciuria in sarcoidosis
May 2003
"How do we address the issue of normocalcemia with hypercalciuria in a patient with sarcoidosis who otherwise requires no therapy?" asks DAVID H. McMULLEN, MD, of Fredericton, NB. He adds, "The patient is asymptomatic, with normal renal function and no history of kidney stones."
Hypercalcemia occurs in about 10% of patients with sarcoidosis; it’s thought to be due to elevated levels of 1,25-dihydroxyvitamin D3 (calcitriol) produced by macrophages within the granulomas. This causes more absorption of calcium from the intestines, leading to an excess in the urine, with or without hypercalcemia. Hypercalciuria is about three times more common than hypercalcemia. Research shows a direct correlation between serum calcitriol levels and 24-hour urinary calcium excretion, supporting the hypothesis that excessive serum calcitriol is responsible for the hypercalciuria in sarcoidosis and is an indicator of active disease. Chronic forms of sarcoidosis and extrathoracic sarcoid involvement are more frequent in hypercalciuric patients than in those with normal urinary calcium levels. Although your patient is asymptomatic, consider doing a complete evaluation to rule out the possibility of extrathoracic disease. Did your patient undergo ophthalmologic examination to rule out the possibility of sarcoid eye disease (uveitis)? If he/she has no extrathoracic disease, then extra vigilance is required for such signs and symptoms. Treatment and prevention of vitamin D metabolite-mediated hypercalcemia/hypercalciuria involves a two-pronged approach. First, pharmacologic inhibition of the abnormal 1-hydroxylation reaction is best accomplished by giving anti-inflammatory doses of glucocorticoids. Second, we can limit the substrates for this reaction by controlling vitamin D intake and sunlight exposure. In addition, advise the patient to boost fluid intake and cut down on salt. If he/she has elevated blood pressure or microscopic hematuria, small doses of hydrochlorothiazide would be useful to curb urinary calcium excretion, while monitoring serum calcium levels for hypercalcemia. MSP [to view our urologists response, please search the urology category]

Thanks for reading, it could save you from extra suffering.
Pris

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• By priscurl
• Posted September 14, 2009 at 7:48 am
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Please do keep us posted Becca.

Make sure that you are monitored for sudden changes in levels.

If you suddenly start developing a thirst and peeing lots, get a serum calcium done ASAP.

Pris

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• By gonenatural
• Posted September 14, 2009 at 8:51 am
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my gp is also pushing the d and calcium intake on me but she doesn't know sqat. she says i am going to get osteoporosis. i already have severe osteoarthritis. an endo placed me on d and i got kidney stones. i don't know if anything else was going on because i didn't pay attention to see if there where smaller side effects. aft 6 months and no or little change in my d numbers and because of the kidney stones he took me off and said it was not good for me to be on it but would never explain why, that is the type of dr he was. he knew a lot, didn't know how to share. the immunologist who dx'd me with systemic sarc said d is fine, a is bad. a is not bad. i sent him a letter about d and why d can be bad for many sarkies. i hope he considers what i sent him for future sarkies. i use to get a lot of uti's suddenly and the dr and i don't know why. reading what pris stated maybe i should have been given a 24 hr calcium urine test. no dr is willing to do it. so taking cranberry tablets has helped me somehow with this issue and no longer get uti's. now i have to find them. misplaced while moving and i am behind.
please consider what pris is telling you. my d is 17. and like pris, both of my d's are low. drs says i will have more joint pain and fatigue at this level. maybe so but i already have a lot of pain and fatigue so i don't know any different and no dr is willing to help with those issues.
no d ever for me!
gn

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• By ncwoolgatherer
• Posted September 14, 2009 at 9:07 am
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Right on, priscurl!!!
You can find a number of good references to share with your docs at the Vitamin D Council's website.
http://www.vitamindcouncil.org/science/research/vitamin-d-and-sarcoidosis.s html

I wish I could say that my docs are on board with my concerns but, in spite of these references, they just look at me like I'm trying to make something out of nothing. They are very resistant to drawing Vit D levels with PTH. Very frustrating!!!

Pris,
Is this something that is automatically included in your regular visits or do you have to fight to get the bloodwork done there too?

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• By jeffmut
• Posted September 14, 2009 at 9:09 am
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Hi There,
I just started taking 2,000 of Vitamin D3 as my Dr. recommended it last month and stated how many people living up north could use more. My level was low. If you want to check my discussion from today it might help, let me know if you want to know more as I am feeling so much better.
Jeff

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• By sharz
• Posted September 14, 2009 at 9:17 am
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I am going through a roller coaster ride myself where at each turn one doc tells me something contrary to the last doc.
One says take vitamin D because my levels are too low another says stay away because my calcium is really high. Stay out of the sun, increase your time in the sun. It's a wonder we don't get whip lash from all the sharp turns. I can tell you that if you find someone you trust and who's information seems to make sense to you, stick with it....otherwise run in the other direction and seek out someone whom you do trust! Good Luck

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• By Dotty-paca
• Posted September 14, 2009 at 4:50 pm
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I have just seen a Dr. that specializes in Sarcoidosis from the national jewish hosp. in Denver. they boast the hosp is the #1hosp. in the nation for complicated lung disease. He told us that Vit D does not effect everyone. and not everyone secrets calcium in there urine. but he did say that is something that Is controversial and highly polorized. he personally did not believe it was a problem. obviously he was right about it being polorized lol.

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• By David2727
• Posted September 15, 2009 at 5:31 pm
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In active sarcoidosis vitamine D is very often low but vitamin D 1.25 is very high. D1.25 can cause hypercalcemia, kidney stones, hypercalciuria, kidney failure, exagerated calcium absorption from food by the body and bone demineralisation (=osteoporosis). Taking vitamine D supplements in this case will only worsen osteoporosis. The only solution is to treat the sarcoidosis which causes the excessive conversion of vitamin D to vitamine 1.25.

David

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