[pokey13]

Hi Everyone,
I haven't posted in awhile, I'm always here reading all the post and trying to cope. I have SLE and ITP (low platelets). I have been treated with Rituxan multiple times in the past few years with ok results, no long remissions though. I take prednisone and plaqunil, synthroid, wellbutrine ,codine,multivitimns and calcium. My last blood test came back very low vitamin D levels. This has happened in the past,, maybe 2 years, rhemy puts me on mega vitamin D for six weeks to get the levels up, but it dosn't seem to be holding. Anyone else have this? And should I be concerned?
I hope your all doing well
~Angela

 

[bugsy]

Hi Angela

I have very low vitamin D levels, my gp put me on vitamin D meds about 9 months ago and i am still taking them. Maybe you didn't take them for very long, 6 weeks to me seems very little especially when they were multi-vitamins, when i take Vitamin D on its own and as far as i know i will be taking it for the rest of my life.

Vitamin D is something that your body produces and it looks like ours don't do it properly, usually people top up their vit D levels by going out in the sun, but as you know we can't do that so we have to take meds instead.

I feel you weren't on the meds for long enough, but i am no doctor i am just going by my own experience.

Good luck :luck: at getting things sorted out.

Take care :bunny: Jo :bunny:

 

[JoD]

has your parathyroid hormone been checked?
http://www.parathyroid.com/low-vitamin-d.htm
Joanne

 

[Raglet]

My rheumie put me on calciferol (vit d) due to low levels, which i understand is quite common in women, and a lot of us with lupus seem to have this problem. I think I had to take 6 immediately, then one a month ever since.

I guess a lot of it depends on what the doseage of the califerol is in terms of how long you have to take it - my tablets are 1.25mg. I have been told that I must continue taking this one tablet a month on an ongoing basis as it will maintain my vit d levels in a healthy range. They test my vit d every now an then to make sure it is ok.

Maybe you need the monthly dose like I am on ? I just take it on 1st of each month to make it easy to remember.

hth

raglet

btw, i love your eyeore avatar - I am sitting here with my eyeore PJ's on, and very comfy they are too.

 

[Katharine]

Hi,

My vit D levels remain constantly lower than they should be. In order to keep them near where they should be my rheumy has me take an ampule of Vitamin D (cholecalciferolum 25,000 U.I.) once every two weeks. In the beginning it was once a week.

I have had to stay on this longterm otherwise the levels go back down again. The form is different but the prinicple seems to be the same as Raglet's once-a-month tablet.

Katharine

 

[KarolH]

Hi there,

I think talking with your doctor about taking a Vitamin D supplement that you stay on for longer then 6 weeks may be helpful.

There are folks that take Vitamin D everyday and do ok with it.

I hope they get this issue ironed out for you.

Keep us posted.:wink2:

 

[goats]

when my doctor gives lectures on lupus for patients and family/friends
one of the things he says everyone should take is Vit D 1000 ui a day
he told us all why and how it works but brain fog time
anyway I find I can concentrate better while I take it everyday
and I can tell when I have forgotten

I hope that helps
goats

 

[Jenkay]

My doc just called today and i'm starting a third round of 8 week 25,000 vit d, mine is always low. I have an appointment next week and will ask her if I should just stay on it as my vit d is barely over the norm with the supplement and without it my vid d is very low.

I just got on the computer to read up about it more and here is your post.

Good luck.

 

[pokey13]

Thanks for all your replys

I do take a supplement everyday 1200mg calcium and 800 IU vitamin D daily but still very low levels.
MY rheumy just put me on 50,000 IU once a week for 12 weeks. So maybe I will have to take a high dose long term.
I was concerned about malabsorption maybe being an issue.

Thanks so much for all your help and putting my mind at ease
~Angela

 

[sjink]

Hi
The doc I saw in lupus clinic this week said he was doing research on Vitamin D and lupus. It is at the lab stage at the moment but I expect some trials will be done eventually. I am certainly off the health food shop for some, he said the amount in my calcichew was lower than the levels he was looking at.

Sara

 

[cispence98]

I also have low Vit D levels, I have been put on RX Vit D 1 x a week, I forget to take it sometimes so I need to start remembering!! Like memory is in surplus for all of us!!
I thought that low levels of Vit D might be related to me being on prednisone for the last few months, that was my way of explaining it, I never looked it up to see if it was even a relation,
Just wanted to let you know your not alone, it sounds more common than less.
I did find the link to hyperparathyroid very interesting and will mention it to my doc!!

 

[highams]

Vitamin D

Interesting stuff on Vitamin D by a Professor Trevor Marshall. I am afraid I cannot post a link but quick search will bring it up. He is also part of the autoimmune research charity - I believe

 

[Blackhawk]

I too have severely low vit D.They found it after I broke my foot in 5 different places in July.They have had me on mega doses of vit D suplements since then.I am now taking 150,000iu 3 times a week.But it is not bring my levels up any at all.Actually my last blood work showed that the level is droping.I had to have a bone density scan done & it showed that I have the bones of a 80yr old & I'm 30yrs old.The doc told me that if I fell just right I would possibally break multiple different bones.I'm at the point that I don't think giving me mega doses of vit D is going to do anything at all.My PTH level is 4x what it's suppose to be.I want to know exactally why my vit D levels are in the tank.So far my doc has done nothing to do try & figure out exactally why my levels are in the tank.I have a extensive medical background & my brother is in medical school yet we can't come w/a good reason why my levels are so low or what is causing it.I do think that my body isn't absorbing the vit D that I am taking.
I'm on such a high level of vit D & my levels are still in the tank I think that if when I see the doc again next week & the blood work isn't any better I'm just going to stop taking the vit D all together.Its just one more drug I would like not having to take.I am already taking 16 different meds that all are taken multiple times a day & would love to not have to worry about taking the vit D any longer.Guess I'll know more after docs appointment next week.

 

[sjink]

Marshall and Vitamin D

My understanding is that the work of Dr Marshall (a researcher not a medical doctor) includes the use of low dose antibiotics and other drugs (I think a blood pressure tablet) and actually excludes taking any extra Vitamin D. You are supposed, I think, to avoid all external sources of the Vitamin including sunlight and also avoid any food containing it. And wear special sunglasses. This idea appears to be controversial and has been criticised for being based on insufficient study and peer review. It was not originally designed for use with lupus but for sarcoidosis. As previous message said there is plenty of info on Dr Marshall on the web, including his work in America on autoimmunity.

My feeling is that if you have a good rheumy who is doing current research you should discuss this idea with her/him. I am going to discuss Vit D with my rheumy next month and will post if I learn anything more.

On another note I feel much better (although sadly never particularly well) for taking a multivitamin, fish oil and Vitamin D. But how you separate out which thing of many helps is always difficult.

 

[Lily]

Hi Blackhawk,

I'm sorry for these troubles you are having with vitamin D and your bones.
With a high PTH level I am wondering if they have also tested your calcium levels and how they are?

With a little detective work it shouldn't be hard to work out what is going on. There are a few reasons for a high PTH level and likewise for low vitamin D levels that are not corrected by supplementation.

Vitamin D is essential for many processes not the least of which is a healthy immune system and strong bones.

I think given your results they should be sending you to an Endocrinologist to sort this out.

How are your kidneys? A high PTH level and low vitamin D are often because of failing kidneys, just wondered if you have had any problems in that respect with your Lupus?

Here is a little more info on PTH and reasons for high levels. Surely your doc has access to this info? If not then I would really urge you to push to get it sorted out.

http://www.labtestsonline.org/understanding/analytes/pth/test.html

sending hugs,

love
Lily

 

[highams]

Vitamin D

Blackhawk,

I agree with Lily, it needs sorting. I have noticed soo many different sites all giving different info on Vit D, from one site saying it only has one function in the body right thru to it being used in almost all body functions!

There is a link on here somewhere to a parathyroid site run by a parathyroid only clinic. The site has some impressive info having studied PTH, calcium & vit D in ALL of the patients they have ever dealt with. With your high PTH may be a good starting point.

Sometimes you have to push the docs yourself. Good Luck

 

[Blackhawk]

My brother who is a doctor & I are trying to figure out what is going on.I am a medic & have been in the medical field for 15yrs yet we're still unsure what is happening.We have multiple different theories that we are testing at this time.I just got my latest blood work in the mail today & it shows that my PTH levels are 4 times higher than the high in the normal range.My calcium levels are in the tank.With me things are either way to high or low.I am trying to force my doc into sending me to see the endocrinologist.He's really pissing me off because he thinks I don't need to see them.They just aren't sure why this is going on.My Vit.D level is a 2.The reference range normal is 20-100ml.If that is not increadible low then I don't know what is.My kidneys function is at the lowest end of the normal range.I do have several different endocrine problems as well.Syndrome X,insulin resistance,& a few others.I just love it when I get to add new dx to the list of the ones I already have.Things are just sucking w/my health right now.There is nothing that is going on w/my health right now that is even close to being ok.My heart is in trouble & so I'm going to have to have surgery on it.Not something that I'm looking forward to having done.If there was one thing that was normal in my body I would be happy.Right now I'm not happy.