Vit D declining after Rx

Back in June at my first Rheumy visit, one of the many tests included Vit D.  He felt they were too low and put me on Vit D 1.25 mg once a week (brand names would be Drisdol, Maximum D3) for 6 weeks.  My next lab was improved for D2 and D Total, D3 declined.  The newest lab draw shows D2 and Total declining and D3 slightly increased.

I've been reading a lot because my first DEXA scan showed serious osteoporosis in lumbar spine (-3.7)  I declined any Rx at this time till he ruled out any other cause of osteo (parathyroid issues, etc.) and all my basic labs came back completely normal.

I'm wondering now if with this autoimmune process (am on Plaquanil and prednisone 5 mg prn) if he will want me to go back on the Vit. D long term.

Any one else track their D levels with and without Rxs?
The tests were done 6/19, 8/17 and 9/18

25-Hydroxy Vit D3              25, 11, 25
Hydroxy Vit D2      less than 4, 38, 20
25 Vit D Total                     25, 49, 34

Labs done by Mayo Med Labs New England.  They only state that Total (D2 +D3) optimum level in the normal population is 25-80.  Rheumy told him he likes them at least in the 40's.

I wonder what effect these wandering values is having on the calcium regulation for my bones.  I also wonder if the Rx Vit D he had me on for 6 weeks was the most appropriate one.

For those with lupus who are on long term Vit D Rxs, can you tell me what kind you were given?  My rheumy said it would also help with my bone pain.  Did it help yours?

[Want to feel well!!!]

Hi,

Sorry you are having difficulty.

About 18 months ago my vit D level was depleted and my rheumy prescribed 50,000 units of vit D per week for 5 weeks to bring up the level.  I then went to 2000 units per day.  I take gel caps which give me no side effects (the binders in the white tablets make me ill).  My Vitamin D 25 Hydroxy hangs around 40.

When I was taking the 50,000 units I was surprised that it did help with pain.  That pain has not returned.

Good luck to you...
Wanna :o)

[Want to feel well!!!]

I made a mistake in my vit-D dose...I was taking 100,000 units per week for 5 weeks.  Sorry for the error.  

Wanna :o)

[sk8flo]

Thanks for your response.  Did your doc prescribe the 2000 gel caps or is it something you got OTC?

I have started taking Citracal with as this form of calcium is not dependant on pH of stomach - good for those of us on Prilosec, etc.

Bone pain did lesson at the time of weekly Vit D, and now the plaquanil has kicked in to lesson the fatigue and I no longer have the long hours of am stiffness.

I just wish I could have a new spine top to bottom:)

[Want to feel well!!!]

The 2000 gel caps are OTC, but was instructed by my rheumy to take them once the  5 weeks of 100,000 units was done.  I get the 2000 unit gel caps through my pharmacy by having them order the gel caps since they do stock them.  I have found that it is much cheaper than ordering them over the Internet.

I found a gel form of calcium as well that is easy on the stomach.  I just stumbled upon it one day and have been using it for about a year...fairly inexpensive.

There was a time my back was very bad, and I had a very bad right side...walked with a limp...no longer there now.  Things can improve.  

Glad the Plaquenil helped you a bit.  Hope you continue to see some improvement.

Wishing you wellness,
Wanna :o)

[sk8flo]

Thanks for your info - I will check it out!

[Want to feel well!!!]

You're welcome.