Vitamin D Deficiency????

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alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 5/13/2009 6:12 PM (GMT -7)   
OK . . . so I got a call from the rheumie's office and they say I have a vitamin D deficiency (they feel that this is behind some of the extreme muscle pain/cramping I have) and that I should take 2000 iu's of vit. D2 on a daily basis to help combat it. They said my vit. D levels were approx. 60% below normal.

MY question is this: I may not be a doctor, but I am not dumb . . . don't you need UV to synthesize vit. D????

I have been told to stay out of the sun, I have been told to wear sunblock and protective clothing whenever I go outside to reduce/eliminate my UV exposure because it just wreaks havoc on my skin and on how I feel. Now I am being told to take something that my body is just going to flush unabsorbed unless I, now, increase my UV exposure.

If I increase my UV exposure, my skin issues will flare pretty much uncontrollably (it only takes 15 minutes of unprotected sun to make my "spots" come out to play) and I will be an achy mess for days after . . . BUT, if I increase my UV exposure, I (maybe) won't have this stupid vit. D deficiency.

Hate it, hate it, hate it, hate it, hate it, hate it, hate it . . . . WHAT THE HECK!?!?!?!?!?!

Anyone else have this issue? What do YOU do???



eyes
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy, NCTD


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 5/13/2009 6:22 PM (GMT -7)   
I have read up on this issue in the past, and while we get Vit D from our exposure to the sun's UV rays, we can also absorb it from supplements. In the case of the sun, our bodies produce it naturally (ie synthesize it). Supplements are very often used for those who live further from the sun (think Greenland) or who cannot be in the sun for health reasons. While I haven't yet remembered to buy some Vit D, I fully intend to add it to my regime next time I make it to the Vitamin Store!

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/13/2009 7:44 PM (GMT -7)   
My vitamin D level was dangerously low recently and my doc gave me a prescription vit d pill plus told me to take vit d supplements. She explained that it's because I don't get out in the sun like some folks, which is a catch 22. But I'm fine now. Not to worry. You'll be ok.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/14/2009 8:47 AM (GMT -7)   
P.S. I was in such a hurry last night, but wanted to tell you that the reason you have a vitamin D dificiency could well be due to the fact that you take care of yourself by staying out of the sun. So good for you for that! Now that Spring is here, I spend more time in my garden, and even with a huge hat, long sleeves, and sunblock, I still get some vit d from that. Just a little bit helps.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


coffeelover
Regular Member


Date Joined Feb 2006
Total Posts : 186
   Posted 5/14/2009 1:02 PM (GMT -7)   

There have been lots of posts on here about Vitamin D.  Yes, Vitamin D comes from sunshine and dairy, but we all are supposed to stay well protected from the sun, direct lightbulbs, and florescents or we will flare up really bad. 

The key to taking Vitamin D supplements is to take a Calcium supplement because Vitamin D needs Calcium to be absorbed correctly or the Vitamin D will eventually start to leech it out of your bones.  There are a lot of options at health food stores, if you have a Pharmacist, check with them to see what they recommend.

Good Luck - I have had a lot of sucess with my liquid Vitamin D, has really helped with the muscles cramps/twitching, and joint pain.

shelley

 p.s. It is probably Vitamin D3 that you are talking about, there is a difference, you need to check. 

 

 



"There is a little naughty monkey in all of us!"
 
Mononucleosis / Chronic Fatigue Syndrome 1991, Depression,Endometriosis 1994,Costochondritis,Stage Two Dysplasia 1994,Asthma 1995,Tonsilitus 1999,Lupus Jan 2004,Migraines, Interstitial Cystitis  2005, GI Bleed/problems 2007.
 
Rx:Hydroxycloroquine (Plaquenil) 200mg 2x/day,Hydroxyzine HCL (Antihistamine) 25mg 1-2 pills at night,Albuterol Inhaler  taken as needed, Acidophilus tablets 1billion CFU, Cabergoline 1x/wk, Valtrex 1gm/daily, Vit D 2,000 IU daily, Calcium/magnesium supplement, Senna-Lax laxative daily.
 
 
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/14/2009 2:39 PM (GMT -7)   
I had really low vitamin D levels a few months ago and was on a script for vitamin d for 2 months. Now my levels are fine but I take calcium with d every day. You don't need sun if you take a supplement. I avoid sunlight because I am extremely sun sensitive. I wish you luck and hope you D levels improve soon but remember to take calcium too.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


Stones
New Member


Date Joined Mar 2006
Total Posts : 11
   Posted 5/14/2009 2:45 PM (GMT -7)   
I think the rheumies are on a Vitamin D kick. Yesterday at my visit my test results came back way low too, and I left w/ a scrip for 50k a week of it and also am to take 1000 over the counter daily. I was told they just recently started testing for it because when your body is low on it it takes it from your bones....which enhances your PAIN. So yeah, me too on the Vitamin D thing.

Bright side is that it is eveidence that we're taking care to stay out of the sun ^^
MCTD, Polycystic Kidney Disease, Fibromyalgia - Diagnosed January 2006

Plaquenil 400mg, Methotrexate .8 CC injections, Folic Acid, Prednisone (off and on), Lexapro, Cardizem 360 and Diovan 80 mg (to control high BP related to PKD)....oh yeah, and Nasonex too for allergies. Lyrica (prescribed for Fibro).


honbunnie
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 5/14/2009 5:03 PM (GMT -7)   
Vit D is also associated with several other auto-immune disorders and cancers. Mine was very low at 18 and I have to take Vit D3 50,000 units 3 times per week. I am hoping for pain relief too when it gets in the normal range. Good Luck.

alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 5/14/2009 5:36 PM (GMT -7)   
Thanks all for your responses! I am going to call and verify the D2/D3 thing . . . I thought he said D2, but I may have misheard . . .

I suppose I should give it a whirl since I really have nothing to lose . . . It does kinda stink, though, that if we take care of ourselves & stay out of the sun that this is what we leave ourselves open to!

Thanks again!

Anne
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy, NCTD


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 5/14/2009 8:32 PM (GMT -7)   

This whole Vit D thing is starting to confuse me.  I thought the body requires adequate Vit D to absorb the calcium, not the other way around?  I just had my rheumie appt.  Had a bone density test and was told I have osteoporosis.  Will probably be starting Fosamax.  But was told that the Vit D level had to be checked first (I already know it will be low) because I couldn't start the Fosamax until the Vit D was at a certain level, so that the medicine (Fosamax) could be absorbed. 

I had to get off the 50K weekly dose two years ago because it CAUSED all kinds of muscle spasms and pain.  One year ago I got back on 1,000 per day for 2 mos.  When rechecked, they ran two tests that check levels, one had improved, nearly to the normal range, the other 1,25, I think read into the way too high range and I was told to stop all Vit D supp except for whatever was in my multiple vitamin. 

I wish someone would explain this whole thing to me - I just don't get it. 

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 5/14/2009 8:35 PM (GMT -7)   
I'm with you Lucy -

I was told the Calcium needed the Vit D to be absorbed.

Now the idea that Calcium is needed to absorb Vit D?? Seems odd to me - I'll have to ask my dr next time I see him. Would love pointers if anyone finds the web info to support this.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 5/14/2009 8:46 PM (GMT -7)   
I'm calling my rheumy tomorrow . . . I'll ask and report back :)
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy, NCTD


LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 5/15/2009 4:15 AM (GMT -7)   
Hi Alien, boy that sounds strange! turn I take 50,000 iu of Vitamin D. I really did find some relief from the cramping in my muscles. Compared to all the other stuff we throw into our bodies, I trusted the doc to give that to me. I hope you find your answers as to what will work for you. God bless Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 


coffeelover
Regular Member


Date Joined Feb 2006
Total Posts : 186
   Posted 5/15/2009 6:49 AM (GMT -7)   
There is an endless supply of information on the internet that explains Vit D3 role in the human body. I take mine in liquid form from a specific maker. I have tried several pills and a different liquid, and they all irritated my stomach. That can be discouraging. Keep that in mind. I also try eat and take it at the same time in the am. It needs to be treated like all your regular meds. Education is the key to managing your pills/supplements and overall health.

shelley
"There is a little naughty monkey in all of us!"
 
Mononucleosis / Chronic Fatigue Syndrome 1991, Depression,Endometriosis 1994,Costochondritis,Stage Two Dysplasia 1994,Asthma 1995,Tonsilitus 1999,Lupus Jan 2004,Migraines, Interstitial Cystitis  2005, GI Bleed/problems 2007.
 
Rx:Hydroxycloroquine (Plaquenil) 200mg 2x/day,Hydroxyzine HCL (Antihistamine) 25mg 1-2 pills at night,Albuterol Inhaler  taken as needed, Acidophilus tablets 1billion CFU, Cabergoline 1x/wk, Valtrex 1gm/daily, Vit D 2,000 IU daily, Calcium/magnesium supplement, Senna-Lax laxative daily.
 
 
 


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 5/15/2009 7:13 AM (GMT -7)   
15 min.in the sun helps greatly..........
SnowyLynne


coffeelover
Regular Member


Date Joined Feb 2006
Total Posts : 186
   Posted 5/15/2009 7:15 AM (GMT -7)   
Huh.... really? Because only 5 minutes in the sun will put most Lupies into a wild flare.
"There is a little naughty monkey in all of us!"
 
Mononucleosis / Chronic Fatigue Syndrome 1991, Depression,Endometriosis 1994,Costochondritis,Stage Two Dysplasia 1994,Asthma 1995,Tonsilitus 1999,Lupus Jan 2004,Migraines, Interstitial Cystitis  2005, GI Bleed/problems 2007.
 
Rx:Hydroxycloroquine (Plaquenil) 200mg 2x/day,Hydroxyzine HCL (Antihistamine) 25mg 1-2 pills at night,Albuterol Inhaler  taken as needed, Acidophilus tablets 1billion CFU, Cabergoline 1x/wk, Valtrex 1gm/daily, Vit D 2,000 IU daily, Calcium/magnesium supplement, Senna-Lax laxative daily.
 
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/15/2009 8:28 AM (GMT -7)   
Snowy Lynn probably means filtered sun. I never stand or work out in bright hot sun, but I believe that being outside on a shady day for 15 min. or working in the yard in filtered light helps my body get a good amount of vitamin d.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


coffeelover
Regular Member


Date Joined Feb 2006
Total Posts : 186
   Posted 5/15/2009 8:37 AM (GMT -7)   
The sun can be so extremely dangerous to people with Lupus, especially if they are taking Plaquenil, that I don't want any of the "newbies" getting the wrong idea about Vitamin D. There is a theory that Lupus/AI diseases like MS and Vitamin D problems are connected somehow but until it is clearly defines, people need to do their research.
"There is a little naughty monkey in all of us!"
 
Mononucleosis / Chronic Fatigue Syndrome 1991, Depression,Endometriosis 1994,Costochondritis,Stage Two Dysplasia 1994,Asthma 1995,Tonsilitus 1999,Lupus Jan 2004,Migraines, Interstitial Cystitis  2005, GI Bleed/problems 2007.
 
Rx:Hydroxycloroquine (Plaquenil) 200mg 2x/day,Hydroxyzine HCL (Antihistamine) 25mg 1-2 pills at night,Albuterol Inhaler  taken as needed, Acidophilus tablets 1billion CFU, Cabergoline 1x/wk, Valtrex 1gm/daily, Vit D 2,000 IU daily, Calcium/magnesium supplement, Senna-Lax laxative daily.
 
 
 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 5/15/2009 8:59 PM (GMT -7)   
I'm over from the RA board, and a few months ago I had my levels checked and I have low calcium levels (hypocalcemia)  I was having the muscle pain in my arms and lower legs, really painful.  I take what seems like an excessive amount of calcium, however it has seemed to help.

alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 5/17/2009 5:44 PM (GMT -7)   
OK . . . I have a verdict

The vitamin D deficiency is caused by lack of sunlight (go figure - I avoid the sun and I leave the lights off in my office at work to avoid that too since there is a flourescent directly above my chair). It is vitamin D3 that I am supposed to take (not D2 as I had posted at first - my error . . . sorry). I have been told that vitamin D is necessary to metabolize calcium, not vice versa (by both my doctor and my pharmacist) and without the vitamin d, you run into bone loss, joint pain, muscle pain, spasms, cramping, twitching, osteoporosis, osteomalacia (adult rickets), etc.

One downfall of taking high doses of vitamin D is that it can increase your risk of kidney stones (have had them before, don't want them again).

Anyway . . . that is what I have found out upon clarification with my doctor . . . sorry I didn't get it posted sooner . . .

Anne
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy, NCTD


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 5/17/2009 6:19 PM (GMT -7)   
I knew there was a good reason I take D3 every day! :-) :-)

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 5/17/2009 8:05 PM (GMT -7)   

Thanks for the clarification, Anne - looks like I'll be back on the high doses of Vit D!

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 

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