Behcets and vitamin D deficiency

[Shalom-yall]

My Rheumy's office called me this morning and told me my vitamin D levels were dangerously low. Wasn't sure if this is connected to Behcet's, but after doing some research I find that there is a strong connection to vitamin D deficiency and Behcet's, as well as many other autoimmune diseases. Has anyone else with BD had vitamin D deficiency?

[Hidden]

There have been a few discussions about it on here, you might find this one interesting:

behcetsuk.healthunlocked.co...

[wendya432]

I think vitamin d can be low in a lot of autoimmune diseases. Mine has been low, but I am on supplements and now it's higher. I still have to take my 2000 units a day or it dips down again.

[Shalom-yall]

That's what I discovered when I did some research - low Vit D levels w/autoimmune diseases. Well, this is new info to me. I will check out the link! Thanks so much!

[behcetshurtsbeyondwords]

Yes! I have a vitamin D deficiency and Behcet's Disease-- only thing is that I don't think its necessarily caused by the Behcet's (or entirely) because I live up North in Canada-- Basically everyone here is walking around with low vit. d and/or vit. d deficiency. Also the city I live in is located right in a geographical area where we get much less sunlight than elsewhere, so that definitely does not help. However, I have heard that scientists here have found a strong link between chronic low vitamin D levels and Multiple Sclerosis as it has increased immensely here over the last ten years or so-- but they haven't linked any other autoimmune diseases to it, although when you hear of research being done on autoimmunity in Canada, its mainly done on MS. They only suspect that it can increase a person's risk of developing it, and there are many other precursors (environmental and genetic) that make a person susceptible to autoimmune disorders-- so if there is a link between vitamin D and Behcet's, it would only be one small facet of why someone develops it.

[Shalom-yall]

I just started researching the subject. I read that here in America they are studying it more and more as being connected to BD, as so many have low Vit. D. From researching it I do see it mentioned as connected with MS, so my Rheumy is having me tested for MS. But I also found articles, etc. that connect deficiency to several other autoimmune diseases as well.

I'm sure living in an area that gets less sun would make people prone to it. But I live in FLORIDA, the sunshine state, and mine is dangerously low! Go figure!

Thanks! B. Levi

[stormie]

Hi

Yes I had such low vit D they put me on 20,000 units instead of the usual 800. However it may not be linked, there are suggestions that the majority of people in the UK have very low vit D. When a blood test is carried out, it is not standard practice to test for it. After an intensive treatment I can't say it made any difference other than my skin tanning beautifully and staying tanned for longer xxxxxx

[Shalom-yall]

Yeah, I'm on a really high dose also. I hope I get tan, or at least get color back in my skin. My sin isn't just pale, it's almost light grey and my skin tone isn't normally real fair!

As, I said I live in Florida (USA) where it's rare to have low vit D.

Luckily my Rheumy thought it necessary to test for vit D def.

[scruffy1]

good to see that your rheumy checked for the vit d not many docs would as with all the other comments i also have very low vit D and after 9 injections in the last 3 weeks i can safely say it made no difference but on the plus side i get it checked for low vitD when ever i get blood tests and you are living in the right place to have naturally high levels of vit D but if u lived here in ireland where the sun is a rare item to see there would be some excuse lol

keep fighting and never give up regards chris

[Shalom-yall]

Thanks Scruffy! And I'm so jealous that you live in Ireland - and I don't!!

[amietamant]

If you Google the terms Vitamin D and autoimmune, vascultiis, and/or Behcet's, you can read what's known to date. But many factors are involved with these conditions and Vit. D may be related in only a small percentage of patients.

I have complete Behcet's and my Vitamin D levels are actually HIGH, likely from a lifetime of sunshine and fortified dairy products.

[Shalom-yall]

Thanks Amietamant. I have been doing some research on it. Don't know if my def. is related to anything autoimmune, but I would like to find out. I do get sunshine, and drink lots of milk. As for the rest of my diet - not too great. I just want to figure out how to keep this from happening again! I have several leftover sores from the last flare that just won't heal. I'm wondering if this is due to the vit. D def.

[lesleyg]

Hi - if you look back through the questions I posted one around early January this year re Vitamin D deficiency and there were quite a few interesting answers. The endocrinologist told me that there was definite evidence that taking extra Vitamin D was helpful for autoimmune diseases. Saying that - check with your doctor first.

Cheers

Lesley

[Shalom-yall]

I'm glad to know that extra Vit D is helpful for autoimmune diseases! Maybe that' why I've has so many flare in the 18 months or so, one after the other. I'm on 50,000 mg of D2. Sure hope it helps!

Thanks Lesly!

[Shalom-yall]

i read a couple of posts on another BD forum that said they had to avoid the sun - don't know why. I know that most people with lupus (that affects the skin) cannot be in the sun unless they wear protective clothing and a hat. So, what do you do if you can't be in the sun? Is there anything the docs can do?

[Livingbechets]

I m B12 deficient, as well as my mom who has behcets

[Shalom-yall]

Do you get B12 injections? I used to get them regularly and it did make a difference.

[Steamboat]

Living in Australia you would think we get plenty of sun to make enough Vitamin D. So many of the drugs becareful of the sun but I still try and sit outside each day. Still my VitD was undetectable. My rheumatologist applied to the drug committee to get Vit D injections. I was granted it but unfortunately it is a IM injection. I have become so used to not having needle sticks as I have a port I was quite indignant. It has been done and this year it has risen enough for me to have my zometa infusion ( good thing for people wanting to ski)

Felicity

[Shalom-yall]

Hi Falicity. Wow! Undetectable?? What kind of health problems do you have with such low D? As far as I know this is the first time my vit D has been this low. The only thing my Rheumy did was give me 50,000 mg to take once a week for 12 days.

I'm glad yours is up now!

Big hugs to beautiful Australia! ((?)).

[Charms1]

last week i requested my family dr to check my Vit D with a blood test... since i had read many thing that it can be low with BD; and i was correct; it is low & my dr did call in rx for vit D that i have to take one per week for a few months & then have level checked again. i am in the US....

[Charms1]

hummm, i wonder if vit B levels can be tested w/a blood test. i will have to check with my dr....

[Shalom-yall]

I don't know, but I would think so. My mom and I got them because we were always so exhausted! I think you can just ask the doc for them. That's what my mom did, and she got them regularly, about every other month or so.

[Shalom-yall]

Oh, hey Charms! US here too - FLorida!

[Coll1609]

My daughter has B12 injections and also Vit D deficiency was diagnosed with possible Bechets Syndrome last year after four years of being ill with mouth ulcers constant pain in her joints all triggered by a seizure after a routine flu vac it's been a long process but she is now on lots of meds that her Consultant tells her will work in 3-6 months after starting them fingers crossed she can start to live like an 18 year old as opposed to an 80 year old

[Shalom-yall in reply to Coll1609]

So young to have to live like that! I hope the medication works. ((Hugs)) to your baby girl.

[Lupilu]

Yes,complete depletion when I was tested...taking Fultium D daily for two years+ now...back at work so there is hope...blinking horrible condition.good luck with your treatment!