Since there are a lot of new things being talked about in reguard to Vitamin D deficiency, I would like to hear specifically what advantages, if any, you guys might have seen from restoring your Vitamin D levels.
I have heard that being low causes Psoriasis, and that having PsA causes you to be deficient so obviously they don't know all about it yet. Recent studies show it is very dangerous to have low levels, and that having correct levels can decrease mortality 50%. One personal note though, 20 years ago I used Dovonex ( a vit D cream) faithfully for 6 weeks, even though I thought it was painful sometimes, and it completely cleared my skin, still, to this day I haven't had a recurrence larger than a dime and I treat it right away with Dovenex and it disappears.
My Vit D was recently tested at 13 and I am on 50,000 iu D2 prescription vit d once a week.
A few months after my PsA first began to get so bad, and after starting Enbrel, I had new muscle pain and was treated with 2 months of prednisone the pain nearly took me out, and I now am wondering if some of our symptoms might be more related to the Vitamin D depletion common in PsA sufferers.... I think my muscle pain is responding to the Vitamin D, plus I could use a little new hope in the pain relief arena, can't we all?
My Rheumy was involved in research for this, ran some tests and I was dangerously low. He placed me on the same dose as you, and I was doing better. I am still on it. I believe he mentioned that there is a correlation between joint damage and VitD defiency.
I can only add that vitamin D is essential for bone metabolism, a lot of vitamin D can be in our diet, but we cannot utilise this vitamin D until it is changed to a usable form by the kidneys.( I know this from Renal Doctors) The other way we can get vit D is by a conversion in fat layers and sunlight., Maybe there is some reason why people with PsA don’t convert vitanin D from their diet well? I feel some research coming on! Will let you know if I find anything…this has really interested me. Thanks
I take 2000iu D2 daily (in most bioavailable form, which makes a difference, as you can be taking high dose vit d and only be absorbing a fraction) , and around three times a year take prescription d3 once a week for 3-4 weeks to boost my levels. I also spend time in the sun every day, as that's the most efficient and effective way of getting Vitamin D, especially for those of us who have issues metabolizing food-based vitamin d (which is fairly common in people with PsA).
For me, Vit. D doesn't make a huge difference in my pain levels, as much of my pain is from aggressive PsA and spondylitis actively damaging my joints, but I do feel better on Vit. D than when I was deficient.
I feel a little ignorant...but I had no idea Vit. D deficiency was so common in people with PsA! I also have very low levels of Vit. D and am on 4000iu 2x a day to increase it. I have found that my levels increase on that dose but I don't think they get to a normal level. I don't know that my pain is greatly affected, but boy are my mood and energy levels. Can I ask Dibi and Gelita, if you don't mind, what were your levels at when the doctor told you it was dangerously low? I sometimes wonder if my doctors aren't taking my Vit. D deficiency seriously enough.
Wow, that is really interesting. I am in the process of being diagnosed, the integrative doctor I see tested my vitamin d levels which were basically non-existant. I have not been consistent taking all of the supplements she has me on since I also started to have digestive issues. My rheumy has never tested or said anything about vitamin D deficiency. I am going to get back on my supplements and see if I have any relief. Is Dovenex a prescription or can you buy it over the counter at whole foods, I may try it on my knuckles and feet.
The biggest difference for me is fatigue. When my D gets too low, It contributes to that terrible drained feeling. I take a 50,000 iu monthly to keep a baseline level up.
I found a vitamin D3 cream with aloe and shea butter that I am going to use on my feet and knuckles, I think it is a great idea and it is natural. I looked up dovonex and it is a prescription ointment. I take 5000 units of D3 twice a day and my level was 15 last time it was checked. I am so happy this topic came up since it had somewhat slipped my mind that I need to stay on top of checking it. Thanks!
I gotta stress, that you have to have the D3 levels blood test....It's not good to just go buy the D3 supplement with a high dose.....I think too high a level can be harmful.
My husband, goes for walks in the sun, he was a 23....I am the same as him, 23......He did get ( maybe in winter) a prescription dose of 8 pills...50,000 units once a week, for 8 weeks, and is now on 400 units a day.
I am to be on 1000mg a day..I have done that 50,000 prescription booster dose, maybe once in 2 yrs...after my PCP checks it all out, or rheummy
I was tested again a few months ago at 15 and was put on a D3 supplement by an integrative doc who is western trained but believes in introducing alternative care along with western medicine. They help me keep my lyme disease and hormone levels in check which can also alter vitamin d levels. My rheumy has never even talked a bout vit D to me. I will have my blood levels rechecked at my visit with my integ doc in a month at my regular check up. I have had low vit D for years, it is very difficult for me to raise it. I am outside daily since I own a dog walking business. I spend many hours outside, although I do use sunscreen, it is kind of a catch 22. Sun damage VS vit d absorption. This discussion has made me realize I need to be vigalent in taking my D and having my levels checked. Sometimes it is exhausting staying on top of my care, which I am sure is a common feeling.
It's been a year. Must check my records and get back to you tonight.
Holly5 said:
I feel a little ignorant...but I had no idea Vit. D deficiency was so common in people with PsA! I also have very low levels of Vit. D and am on 4000iu 2x a day to increase it. I have found that my levels increase on that dose but I don't think they get to a normal level. I don't know that my pain is greatly affected, but boy are my mood and energy levels. Can I ask Dibi and Gelita, if you don't mind, what were your levels at when the doctor told you it was dangerously low? I sometimes wonder if my doctors aren't taking my Vit. D deficiency seriously enough.
The dovonex cream is a synthetic vit d cream used for psoriasis and a prescription is required. The vitamin d3 cream that I researched has been found to heal psoriasis can be bought on amazon. I have not used it yet but read reviews on how well it heals psoriasis especially in difficult areas like feet and hands. The one I bought is a natural vitamin D3 cream 10,000 iu it is 3 oz and 15.58 on amazon it is called ANU med international vitamin D3 cream sold by web vitamin on amazon. You also may be able to purchase an equivalent at whole foods or a health food store. I am not sure how much this cream will impact vitamin d levels your daughter may want to have them checked. Vitamin D toxicity is rare and difficult to achieve unless you take huge amounts like 50,000 units per day for a month, you do need to be careful and take supplements under a doctors care. A healthy person requires about 6oo units of D per day where a deficient person would require more. hope this helps!
This is one of the things I found on google.........will try and blag my way into the hospital ref library now I'm not a student anymore and see if the rheumatology journals have anything else to say ;)
thanks for the info on the cream . My daughters levels were not as low as mine were .. I too also have very very low vit d .. It was at 2 ... but the thing is I cant take the pills .. makes me sick and also constipation bad ... so I am eating all the vitd foritfyed food there is and sit outside in the sun for 10 mins aday... I will let my daughter know about this cream . thanks
Vitamin D is something I can bring up at my next Rheumy visit. Yesterday I saw my local doctor and started on Prendisone for one months treatment for my flare up. I could actually lie on my side last night for more than half an hour and even though I still have pain the level had gone down to a bearable level. It is a year since my last flare up and if I could get some relief from Vitamin D it would help especially when Predisone's use is limited.
Just having been through winter and being inside most of the time could account for a decrease in Vitamin D levels and there is the coincidence of my flare being around the same time last year. I also used a Vitamin D with Vitamin A cream on my skin at the same time as being on Mtx with some large patches of Plaque P clearing and not coming back. Unfortunately I still have two large patches on my back and I have it on my scalp which I am hope one day will go. My scalp did clear but came back with this PsA flare up.
My Vit.D level was 13.7. The acceptable range is between 32.0-100.0. The lower limit of 32.0 is considered to be a threshold for optimal health.
Gelita said:
It's been a year. Must check my records and get back to you tonight.
Holly5 said:
I feel a little ignorant...but I had no idea Vit. D deficiency was so common in people with PsA! I also have very low levels of Vit. D and am on 4000iu 2x a day to increase it. I have found that my levels increase on that dose but I don't think they get to a normal level. I don't know that my pain is greatly affected, but boy are my mood and energy levels. Can I ask Dibi and Gelita, if you don't mind, what were your levels at when the doctor told you it was dangerously low? I sometimes wonder if my doctors aren't taking my Vit. D deficiency seriously enough.
Vitamins are either soluble on water or oils. The ones soluble on water are not dangerous because the body uses it and eliminates the excess, like Vitamin C, so we need to eat foods throughout the day to be safe, or take sustained-release tabs. Vitamin D is soluble in oil, which is accumulated. Too much can make you sick, not enough is also not good. I take 50,000 units a week, not daily. I got Lupus-Like-Syndrome from the use of Humira, and the sun/light hurts my skin. My skin cannot be exposed to the sun nor light.
If you get 10-15 minutes a day of sun, you are fine. Remember that some foods we ingest (some green vegetables, milk, etc.) contain the vit., so we get enough as it is.
Vitamin D works in conjunction with Calcium. One of its job is to help the body absorb the calcium, which we need for healthy joints.
Holly5 said:
I feel a little ignorant...but I had no idea Vit. D deficiency was so common in people with PsA! I also have very low levels of Vit. D and am on 4000iu 2x a day to increase it. I have found that my levels increase on that dose but I don't think they get to a normal level. I don't know that my pain is greatly affected, but boy are my mood and energy levels. Can I ask Dibi and Gelita, if you don't mind, what were your levels at when the doctor told you it was dangerously low? I sometimes wonder if my doctors aren't taking my Vit. D deficiency seriously enough.
