Vitamin D deficiency and fatigue ?

[Ginger]

   Wondering how many of you also have a Vitamin D deficiency or have had their levels checked?  Recently called by the Rheum. after a visit and blood work that my Vit D level is 14

and now have to take 50,000 units weekly for 8-12 wks and 2000 units daily.  I believe he checked the level because I wasn't having any change in the fatigue after being on the

Plaquenil for 3 months.

   Also I forgot to ask him if taking the Plaquenil will improve the level of Anti-SS-A in your blood. Mine was  >8  and the normal is 0.0 - 0.9  .  Does anyone know the answer to this?

   

[purplegirl]

I take Vit D weekly. Co enzyme Q10 and a short course of Vit B injections really helped my fatique.

[LisaMarie]

My level is a 17.  I'm only taking 1000 daily as a supplement.  I'm also taking plaquenil.  But, I also take a sleep aid, and neurontin at night and I am getting a really good night sleep on a regular basis right now (knock on wood).  This has seemed to help me a lot.  There are still days where I sleep 8-10 hours and need a nap after being up for two hours.  But those aren't as often.

[sceezix]

Prior to the dx of SjS we all thought my fatigue and other symptoms were a result of the nonexistent levels of Vitamin D in my system.  I take 10,000 IUs per day and my levels still only reach 26 (30 is the base line normal). I am tested every 4 months.  I now attribute the low levels of D to SjS and the fact that I spent the better half of my life in Seattle with little light from the sun.  I certainly believe that there is a correlation between low Vit D and autoimmune in general.

When I do take my D regularly, I have less pain and fatigue. 

[A66eyroad]

My rheumy said I have a vit D deficiency. I just started taking a multiple vitamin.

I'm hoping that will also help with all the ulcers I get in my mouth and nose...

[Ginger]

Thanks for the replies so far. Interesting to see the link between SJS and low D. I have to be honest and say that I was a little afraid of the twice a day Plaquenil and have only been taking one a day. I did admit that to the Rheumy though. He wants me to go up to at least 1 one day and 2 every other day.  Will see if between this and the Vit D supplement my fatigue will improve. Heres hoping.

[Ginger]

My rheumy said I have a vit D deficiency. I just started taking a multiple vitamin.

I'm hoping that will also help with all the ulcers I get in my mouth and nose...

I think I might have one inside one nostril. Something has been bothering me there for quite awhile. Does the Rheumy give you anything for those?

[Kendo]

Hello all,
I have strange reactions to low Vitamin D, even when my calcium disorder is under good control. I get very weak and out of breath and can barely climb a flight of stairs from the basement carrying a can of beans!

I mentioned this to Rheumy on last visit and he said "some people are like that with low Vit D". My research shows that more and more is being found about Vitamin D as a hormone, not just a vitamin. It also helps support (but not stimulate, according to my naturopath) the immune system. Some people with low Vitamin D who can't get flu shots get some protection from viruses by having good levels of vitamin D. I get problems with just being in the low range (normal range in Canada is 75-250), eg 80 or 90. Can't imagine how dragged out I'd be if actually clinically deficient!

I take 50,000 IU of Vitamin D2 (less active than D3) once a month in summer, twice a week in fall and three times a week in dead of winter. My family doc refused to click off the appropriate box to get a free blood test of Vit D ($30 here in Ontario) yet she is the one who put me on the high doses as my levels were dropping with 5000 IU Vit D3 per day. Good thing work insurance plan covers that!
Kendo

[Iwantmylifeback]

A month ago mine was 11 and I was taking 4000 ii daily. We spend a good deal of time outdoors in the summer camping too.  Can only imagine what winter will bring. Am taking 4000 twice a day.  I think these levels and others as well are from the.lack of absorption in the bowel. Thus why even with supplements I still stay low.  I find as.many as I can in sublingual form./  You need be careful with B12 as too much is really rough on tour heart.  Have the levels checked!

I use a RX called bactroban in my nose.  Its soothing and super at healing.. Neosporin used to work but I now have allergies to whatever they changed in the formula.

[A66eyroad]

Ginger:

There's really nothing the doctor (says he can) do for nasal ulcers; I take a little Vaseline on a Q-tip and cover it up. It usually takes about two weeks to heal.

I can't use saline gel or a neti pot because they're too harsh. FOr prevention I can spray ONCE in each nostril with Ocean saline in the morning and at night. Once I get an ulcer in there, though, the saline burns so I have to discontinue using the saline altogether.

I'm hoping that taking the vitamins will help.

[Navigator]

Are the mouth sores like cankers?   You can ask your rheumy for triamcinolone Paste.  It says put it on the sore 2x a day but it is pretty yukky....grainy. I use it once at night so I sleep thru having it in my mouth.  It works great.  Two to three days or so and the sores are resolved.   No idea what to do about the nasal issue.

I find I get the sores if I am really flaring.

Many of us have low Vit D.  Mine is now 45 or so...and I live in Fl!!!  It is tough to raise it. I take 2000 per day but was on high levels for the first 6 months of my diagnosis.

[A66eyroad]

Yes, like cankers.  I think I'll start a new thread about this.

[Ginger]

Thanks everyone. I will try some of these suggestion. Has anyone tried Aloe gel for the nasal or mouth sores?