Vitamin D deficient in the worst way!

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momto3
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   Posted 7/12/2010 3:15 PM (GMT -7)   
Since I've been diagnosed with osteoporosis at 39, my pcp decided it was a good idea to check my calcium and vitamin d levels, and today the nurse called to tell me that my vitamin d level was at 15 shocked The normal level is at 30, so I have to say I was pretty shocked to say the least.  No wonder I can't seem to remember anything, and my family teases me about my poor memory shakehead I think I need more Vitamin D!!! Maybe it is also the source of my joint pain and inflammation, anything is possible.
 
Anyone else tested for vitamin d? what did you find?

wearyRAsufferer
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Date Joined Mar 2010
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   Posted 7/12/2010 7:14 PM (GMT -7)   
I have plenty. I do lie in the sun a lot. I also take 1000 IU per day

momto3
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Date Joined Nov 2006
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   Posted 7/13/2010 7:34 AM (GMT -7)   
When on Methotrexate being in the sun that way is not an option, and I guess what I've been taking hasn't been enough, when you were tested your leves were normal then? Maybe it is all the SPF 70+ sun screen I lather on myself tongue It looks like I will be taking 50,000IU for a bit.

wearyRAsufferer
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Date Joined Mar 2010
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   Posted 7/13/2010 10:09 AM (GMT -7)   
I take 20 mgs of MTX per week. I am of Italian decent and do not burn. My doctor commented last time that it being re-thought out about telling people the sun is harmful. She said it is a great way to get Vitamin D naturally. I try to do my sun bathing after the peak of the sun- like around 3PM.
My Vitamin D is tested every 2 months with the rest of my blood work- it is always very good.
Everyone is different- I wouldn't want to tell you it is OK to be out in the sun unprotected and taking MTX. You might ask your doctor though.

sjkly
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Date Joined Dec 2007
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   Posted 7/13/2010 6:36 PM (GMT -7)   
I am getting sun exposure rashes which my PCP says are from the plaquenil-I will ask my rhuemy about that at my next appointment. So sun exposure for vitamin D is out for me.
I get 200% of RDA from daily multi and calcium pills.

CajunGrl
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Date Joined Mar 2009
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   Posted 7/15/2010 11:00 AM (GMT -7)   
When I first had mine checked, it was 13. This is the second time it has dropped so low. I am starting to think too that some of my pain is coming from low vitamin d levels. It is a fact that some people are put in wheelchairs because their vitamin d is so low.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


aimsgirl16
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Date Joined Jun 2008
Total Posts : 1469
   Posted 7/15/2010 2:50 PM (GMT -7)   
I had my levels checked about 2 months ago and I was at 13 as well. So i was put on 50000 IU once a week for a month and than once a month for 5 months and will be getting it checked again on Monday. When I was taking the D once a week, my joint pain got a bit less, now that I am down to once a month, the pain is back to where it was. I will deffinalty be talking to my doctor about it on Friday!!!

starfield
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Date Joined Jul 2010
Total Posts : 8
   Posted 7/15/2010 7:05 PM (GMT -7)   
my husband has rheumaoid arthritis and I have started supplementing him with 2000 iu vitamin D every day; despite this his arthritis has gotten worse and has moved into his elbow. I still have faith in vitamin D however and still hope that it will help him out in the long run. We have not taken any tests to find out what his level of D is or whether it has gotten better but I am sure he was deficient (no sun) and now after 5 months of supplementing I am keeping my fingers crossed.

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 7/19/2010 7:49 AM (GMT -7)   

Hi Everyone,

Yes, this is the information I was looking for, thank you! I was diagnosed with Osteoporosis, and that is what triggered the vitamin D testing and I also had the 24 urine collection looking for calcium (my daughter had this done and was diagnosed with hypercaclcuria) which will turn out fine I'm sure! My kidney's are in fine working order and don't spill calcium :-) Yes, I'm also on the 50,000 once per week, for eight weeks and I've also heard so much about those with autoimmunes being low in Vitamin D and I always wondered if my joint pain was maybe just low D and nothing more, so maybe I will find out.  At this point, I just want to get a handle on the osteoporosis, no doubt from the nasty MTX. I've stopped the MTX, and I'm hoping that it will end the horrid sun sensitivity as well. I also slather myself in sunscreen daily, SPF 80 or higher, and I still end up with a red rashy self shakehead   Sj, I hope you don't have to stop your plaq, and can figure something out, it is such a wonder drug, I really miss taking it!

Hi Starfield, I never had any testing for vitamin levels and even while on the MTX all these years, my rheumy insists that it has nothing to do with my low red cell count, low B12 count, even though if I stop taking it and I have in the past, and had my CBC taken, my levels have gone right back up.  Depending on which medications your husband takes it doesn't hurt for him to ask for a vitamin D test to see where he sits. In my case at a annual check up, I just happened to ask for a dexa-scan because I fit into some of the critera along with the medication (MTX) but not the age, (39)and that is how I found out, my bones were in danger. I've been having a lot of spine pain, and the month before I was in at the rheumy and I told him that I was having some awful spine pain and he dismissed it and said if it was still there in a few months we would look into it, but now that I've been diagnosed with osteporosis of the hips and spine, his nurse has called twice now because they have not recieved the results from my other clinic. It seems he is very concerned now. If your husband is getting worse be persistant, make sure his doctor knows the extent of his pain and takes appropriate action.

 


golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 7/21/2010 6:54 PM (GMT -7)   
Hi Momto, I was/am low in vitamin D too, can't remember the exact amount but I've been on Vit D supplements for 2 years and when I last asked if I could now go off them, they tested me and said no. I'm still a bit too low even on the supplements. I'm positive its the methotrexate, I live in Australia and I'm with my kids out on soccer fields , athletic fields, swimming pools, constantly exposed to sunshine and still I am low. It has to be the mtx not letting us absorb it or something. My calcium levels were also low but my bone density is good! So hopefully all these supplements will keep it good.

I'm sorry to hear you have osteoporosis at such a young age. But at least its been diagnosed and hopefully they'll be able to treat it. My friend who is coeliac has very bad osteoporosis and they have raised her bone density with treatment, she was breaking bones with coughing! So I know there are meds available, bone cements etc, to toughen you up again.

Best wishes, golitho

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 7/24/2010 10:02 AM (GMT -7)   
Hi Golitho,
 
Are you on the high supplements of 50,000IU? I was given a prescription of these for eight weeks and at that point I will be retested.  I'm thinking it has to be the MTX as well. I did the 24 hour urine collection for calcium/creatinine and both were normal. I admit I'm not in the sun all that much and when I am, I cover in sun screen because with the MTX, it just feels as if the sun is burning my skin, although I never get a sunburn.
 
My primary care doctor basically doesn't want to treat me for the osteoporosis because of my age, so now my rheumy has been notified and they are having difficulty getting my dexa scan results, and the nurse has called me three times, telling me they don't have the results yet, so he is wanting them before my next appointment. I will be curious to see what he says about it.  For now I've stopped the MTX, it has been about three weeks, I can cope with the low red cell/low vitamin b12, which I get from the MTX,  but osteoporosis, is another thing entirely.
 
Wow, that is amazing about your friend, coughing!! However, at least she was able to get help and strengthen her bones.  Yes, there are medications available here for osteoporosis.  I'm sure my rheumy will be able to get me back on track :-)

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/27/2010 10:02 PM (GMT -7)   
Hi Mom, last year I was tested at 19, was put on 50,000 units for 3 months and retested at 13! I even made an attempt to be out in the sun more - even though I (as most of us do) have issues if i'm in for any length of time.  I get retested this week, my new PCP and rheumy don't believe in (get this!), "all this vitamin D hype" - so, I was told to just take 1,000 tablets twice a day for a while....I've been trying to get some sun (though I end up getting burned in 15 minutes instead - and I have olive skin!) and drink more soy milk....we'll see....if it's not any better, I'm going to try and insist on a higher temporary dosage.
 


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 7/28/2010 5:57 PM (GMT -7)   
Camama...how is that possible, that is truly nuts! While I'm not sure of my rheumy's take on Vitamin D, I'm sure he is most likely the same way! When I visit him in September, I will ask what he thinks, all that hype? We know that vitamin D, is critical, but now that I'm off the MTX, I'm really interested to see if the D helps my joint pain etc. that is really interesting! Have you been tested for osteoporosis?? With all these RA meds that have been taken? It sounds like you need a higher dose than the 1,000, I would be persistant, because we all know sometimes you have to be rolleyes
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