It is my custom to put the information about vitamin D in a blog. This review, however, deserves more attention than it would get from that position, so I am putting it on a discussion forum. I also know that many of you are lucky enough to have physicians who make sure that you have this information and who make sure that that vitamin D testing and supplementation are a part of your routine in the battle to live as well as possible with lupus. To you, this will be old news. But I tend to worry about those who do not have access to the information and that is why I post some of the information about lupus and vitamin D.
This review article on the Clinical Significance of Vitamin D in Systemic Lupus Erythematosus was published on January 30, 2013. Please enjoy and if your physician has not tested your vitamin D levels or instructed you in appropriate supplementation, you might want to ask them some questions.
Good idea to post this. I have been taking 5,000 mgs of D3 for about 3 months now, and I do notice a difference. I feel better, and am less symptomatic. I will keep taking it.
Thanks for the info…I unfortunately am one of those that do not live near knowledgeable doctors…I’ve gotten no support or information from any of them. Their recommended treatment is to simply put me on an antidepressant, according to them, that makes it all better. My closest rheumatologist ( over an hour away) told me at my first and only consultation ) was that lupus is more of a “mind thing” and at my age I should start expecting aches and pains. I’m 44.
Funny, I just watch dr weil who was pushing his latest book on larry king show on hulu plus....and he was stating facts how little generations after baby boomers are becoming obese and less active. Sure all of you have seen the stats on this.
Sure all of you have had your doctors ask about how active you are daily too! Just 20 minutes of sunlight is enough to each person to get their daily dose of Vitamin D. So if your doctors are saying that most do not have enough...well awfully sad that people are not outside even 20 minutes...just one break at work walking in sunlight is enough!
Yes of course those with sun sensitivities should not walk during sun strongest times and still wear hats period, wear sun protection clothing over areas of your body that tends to break out most.
But even than...if you legs are exposed you will absorb enough vit d my doctor said in just twenty minutes....with sun screen! He said sunscreen does not get in way of your body absorbing vit d.
I can say this too, that every single person that i got out hiking or walking, has learned to love it as much as i have all my life. They also have learned most positive besides improving your health is that connection between you and your spouse or whomever improves. Something about walking that brings out best in most people and as I tell my women friends give them(your husband or child) about twenty minutes of silence..wait until they are ready and next thing your husband will be sharing intimate feelings about their life...same with kids too. So it also a great way to bring families closer.
So this is just another argument that doctors have been pushing us to do....get outside and move!
Best part about this way..you do not need to take another pill....which i really detest. I sure some others must be like me as well. Plus, unless your Vitamins have that seal on side...who knows the true amount in them....time and time again we read how most supplements do not have what they say in them or not amount....I know Dr Weil has spoken about that and why we can get most if not all our vitamins from food and being outside instead of inside watching TV or playing games.
I do understand that some supplements we cannot eat enough to get full amount but Vit D is definitely not one of those, thankfully. So get outside and get your vit D with your walk!!
I live in CA so my vitamin D levels are fine but I also read research that adding a D supplement can also help with chronic back pain. I have three slightly herniated discs and it definitely helps. I also have SLE, Sjs, CFS, vasculitis, Raynauds, Fibro, battle depression, etc… I try very hard to get outside even if it’s below zero ( I live in N CA about an hour from Tahoe). If it’s just too cold I sit in the sun through a window. The sun also helps my mood. If you can get your D from the sun even if it’s just for 5 minutes every few hours. Our bodies absorb it better that way. Hope you all have a good day.
OMG! I can't believe the callousness of those people! You can get the Vite D3 5000 units at Walmart, and just take it on your own! And, find another Rheumy! Yours is a jerk.
Kelly said:
Thanks for the info....I unfortunately am one of those that do not live near knowledgeable doctors......I've gotten no support or information from any of them. Their recommended treatment is to simply put me on an antidepressant, according to them, that makes it all better. My closest rheumatologist ( over an hour away) told me at my first and only consultation ) was that lupus is more of a "mind thing" and at my age I should start expecting aches and pains. I'm 44.
you must live somewhere near me!! closest to me is about hour....guy was nice over 12 years ago before population where he is at more than doubled so his patients also more than doubled especially as lupus became one of more popular diseases now for doctors to try and diagnose. He turned into real jerk only treating patients that are extremely ill or new ones...than after seeing them few times they all say same as rest of his patients in his waiting room.
Kind of sad....i am now finally found one, i hope, that is bit less than two hours away that i heard is good....beats driving all down to Sac which about 3to 4 hours depending on what side and traffic.
I have heard that about lupus from patients in his room and also about fibro from many doctors. Yes i do believe in mind body connection but when you have tests to back your body up that something is wrong.That is just saying women are too emotional! you think we be past that kind of beliefs by now..amazing how slow it changes. Thankfully we have test to shut them up since than it is pure science.
Yes..people north enough do not get as much sun in winter...i often forget that and apologize...but i still believe getting out doors all year long is much healthier way than pill.
Annemarie... i live north of you...but grew up going to south tahoe ...for your weather at zero you must live near Truckee...which often has coldest weather in all lower US. Way too much snow for me! I am about hour from Oregon Border...in Cascades..right were Sierra's and Cascades just about switch from one to other. Where in world do you go to see Rheum? Reno? Hope not all way to Sac? Plus, you and I have about all same things including disc issue...only that for me is least of my problems! I still get out but i do have the clothing plus if you snow shoe or just get out and get moving....you warm up but i am lucky...within 15 minutes of driving we are out of most if not all snow in one direction! So we often will walk there especially now that my dogs are getting older so walking in deep soft snow can be just as hard or harder on them than us.
People...if you every do come to Calif try and see Lake Tahoe! It is beautiful natural high alpine lake that is so huge everyone from back east that i have taken to see it cannot believe how beautiful and how large it is! Course...Yosemite they said same thing...that no matter all photos they saw nothing came close to beauty it is in real life.
Kelly said:
Thanks for the info....I unfortunately am one of those that do not live near knowledgeable doctors......I've gotten no support or information from any of them. Their recommended treatment is to simply put me on an antidepressant, according to them, that makes it all better. My closest rheumatologist ( over an hour away) told me at my first and only consultation ) was that lupus is more of a "mind thing" and at my age I should start expecting aches and pains. I'm 44.
I live a vitamin D winter,I live in Oregon by mt hood,we are lucky to get 3 months of sun in the summer…most of your vitamin D is absorbed thru the retinas of your eyes,so if you wear sun glasses,you will be hard pressed to get the vitamin D levels you need for your lupus…
I just had this done by dr because I was so tired and out of it. Suprise it was really low. The day the results got to my dr he called me and told me that he was putting me on 50,000 units once a week for 6 weeks the to take 2,000 a day after that. I did not know that could affect my SLE.
It seems as tho people with Lupus require much more Vitamin D3 than can be gotten from sunlight. Also, haven't you heard that Lupus people are not to go into sunlight? I had to quit wearing my shorts, and applying sun-block when ever I had to go outside. I had to quit using the sunblock due to becoming allergic to the one I was using. I gave up. LOL! Figured I was damned if I did, damned if I didn't use it.
Ann A. said:
Dear Annmarie
38.9333° N, 119.9833° W
South Lake Tahoe, Coordinates
South Lake Tahoe is above latitude 37, so it is a location where UVB rays are not available all year round. While the altitude means that more UVB rays reach the earth when it is available. UVB - the only portion of sunlight that results in vitamin D synthesis does not pass through window glass.
So you might want to get your blood serum levels of 25(OH)D3 checked. They have probably gone down over the winter.
Good luck and thanks for replying to the discussion.
Annemarie said:
I live in CA so my vitamin D levels are fine but I also read research that adding a D supplement can also help with chronic back pain. I have three slightly herniated discs and it definitely helps. I also have SLE, Sjs, CFS, vasculitis, Raynauds, Fibro, battle depression, etc... I try very hard to get outside even if it's below zero ( I live in N CA about an hour from Tahoe). If it's just too cold I sit in the sun through a window. The sun also helps my mood. If you can get your D from the sun even if it's just for 5 minutes every few hours. Our bodies absorb it better that way. Hope you all have a good day.
Yikes, I am so sorry you are having such a rough time with the sun. I decided to just ignore not going in the sun-I have animals, horses and dogs, and they must be fed, rain or shine. The sun might cause flares, probably does, but not enough to really inconvenience me. I have to say I haven't noticed a cause and effect situation when I go into the sun. However, since I do it every day, that is sort of hard to check out. I do try to wear a hat, and always long pants, but in the summer I can't wear long sleeves or I about die from overheating. I go into a mode with the overheating. Happens when I sleep, too, and I haven't slept with my husband in years, as, if he gets too close when sleeping, I go into hyperdrive on the heat.
I have never had a lab test done on my vitamin D amounts, just have gone by what my holistic Dr tells me when he does the muscle testing. It is apparently as accurate as any lab tests I have ever had done.
You are very well informed, and just wonderful in your willingness to share what you have learned. This whole topic is very interesting to me, and I am learning a ton of information about myself. I began experiencing Lupus symptoms in the form of not sleeping from around 3:00 am to 6:00 am every night, when I was in my early 30s. I hadn't a clue I was ill with anything. The other symptoms came on so very gradually over the years that even when I had to quit working in 95 from being too tired to manage to go to work every day, I still didn't realize that I wouldn't be able to work normally ever again. I would be a whole lot better off financially now had I realized then that I was ill. But, I didn't, and I think that even the recognition of being ill was occluded by the lupus! I believe it is sort of like a drug addict-they don't think they are addicts, because the drugs hide the facts from the individual. They can't be objective, can't get inside their own heads to figure things out, that are obvious to others. I couldn't get inside my own head. I could, had I known, have gotten SSDI at that time, and it would have been much more money than the 640 a month from SS. About 2x as much. Talk about a bummer. Anyway, I am now 63 yrs old, so am just a little younger than you are, but I haven't experienced the illness that goes with the Lupus for as long. When did you get diagnosed with it? It sounds like it took some time for you to discover what was going on with yourself, too.
Wow, you have been thru a lot. My knees are going, but not gone yet. I had to give up going to my rheumy-no money for it-so I had to give up the Plaquenil. Now, with discovering that I am having petit mahls, I won't drive that far, either, even if I can get the money together. Can you believe that I blanked out and locked myself out of the house a few weeks ago? No phone or keys or anything with me, just had gone to get the dogs, blanked before I opened the door to go out, then woke up outside on the sidewalk. I didn't discover I'd locked myself out till I went to go back in with the dogs. Wow, talk about stress! I must have automatically locked it. I had to break the window, and move a wooden night stand inside under the window to make it back in. Knew if I let myself fall the couple feet to the floor I would break something.
Anyway, that is very good that you are learning all this, and so willing to share it with the rest of us.
Ann A. said:
Dx rheumatic fever age 10. Dx discoid lupus at age 21 by biopsy. Dx SLE age 22 by criteria. Dx Hashimoto's age 42. When I was first dx aspirin only approved med. Put on Plaquenil too late to save joints. Three total knee replacement surgeries-3rd caused by autoimmune reaction to prostheses
Retired 2010
Start work MS health and nutrition ed
Vit D is thesis topic
So much research coming out new paradigm
Old academics never die as long as they can still learn something new
Thanks for sharing Anne...my rhuemy has me on 500mgs 3xday and even gave me a prescription to get me "kick-started"....had no clue that there were prescription strength vitamins but as always new info everyday.
I have SLE… I haven’t had trouble with rashes …just everything else. Because as we all know these cold months can be brutal on us, I decided that i would try my own experiment. I started going to/ the tanning bed about 3 times a week but only laying for 5 mins or so…when I owned my pet store…i often dealt with lizards that needed vitamin d which one source is the uva/uvb lighting that is in a sense rhe same you find in a tanning bed …I know for myself that this actually works for me it helps the chill but best of all the pain
I am doing fairly well, considering. After reading some of what the other members here go thru, I don't feel that I am that badly off. I am working on getting a neighbor to drive me into see my Rhuemy when I get the money to go. He is pretty fairly priced, but after having to move last month, I owe so much money to so many people that I have to take care of that first.
Isn't it possible for you to have just one dog? I can't imagine living without a few of my furry friends around me! And, I do love reading what everyone who does research here puts up on the forums. Wow, I have learned alot! I didn't know about the Petit mahls until reading it here. Another piece of the puzzle fell into place.
I also learned that not everyone is allergic to the sun. Maybe not me. LOL! I think you did that research, didn't you? I am sorry, my memory is the pits. Ann A. said:
RJQ
You have full plate yourself.
So sorry to hear that you do not have money for a rhuemy and that you are blanking out. I lock myself out on a regular basis. When the dogs were here I often left the backdoor unlocked. Labs ain't guard dogs but mine would bark like nuts when a stranger came near the gate and that would set off a chain reaction, first the Rottie next door who had included me in her pack and the hound mix on the other side. My neighbors are the kind of people who learn to recognize what the dogs are saying. But the neighbor has a key too.
Please take care of yourself and be as well as you can. You are welcome to anyyhing I learn. Sharing it is the way retain it and update it.
RJQ said:
Wow, you have been thru a lot. My knees are going, but not gone yet. I had to give up going to my rheumy-no money for it-so I had to give up the Plaquenil. Now, with discovering that I am having petit mahls, I won't drive that far, either, even if I can get the money together. Can you believe that I blanked out and locked myself out of the house a few weeks ago? No phone or keys or anything with me, just had gone to get the dogs, blanked before I opened the door to go out, then woke up outside on the sidewalk. I didn't discover I'd locked myself out till I went to go back in with the dogs. Wow, talk about stress! I must have automatically locked it. I had to break the window, and move a wooden night stand inside under the window to make it back in. Knew if I let myself fall the couple feet to the floor I would break something.
Anyway, that is very good that you are learning all this, and so willing to share it with the rest of us.
Ann A. said:
Dx rheumatic fever age 10. Dx discoid lupus at age 21 by biopsy. Dx SLE age 22 by criteria. Dx Hashimoto's age 42. When I was first dx aspirin only approved med. Put on Plaquenil too late to save joints. Three total knee replacement surgeries-3rd caused by autoimmune reaction to prostheses
Retired 2010
Start work MS health and nutrition ed
Vit D is thesis topic
So much research coming out new paradigm
Old academics never die as long as they can still learn something new
Thanks for the link. I will go there after I talk to you. LOL! It sort of makes me angry when people all try to be forgetful in the same way I am, always saying "I know just what you mean, I forget what I just walked into the room for, too." They don't have a clue about my memory. You do! I am sorry to hear you are suffering with the fog so much. My memory is not good, but I don't have the fog any longer. It slowly went away when I quit eating meat for awhile, and was pretty much gone after I found I was allergic to the Nightshades, and quit eating them. It did take awhile, I have to admit. About a year, if memory serves me, which you can take to the bank, it doesn't! LOL! But, that seems about right. I do know it was a long time getting a clear head again, but well worth the wait. It just kept getting better.
Oh, this is too funny! You sound so much like me. Well, we both suffer from the same ailment. I can't remember anything. My husband will ask "who was that" who did something. I should know who, but can't remember. Then, 10 or 15 minutes later, pop, it comes into my head! I tell people I only have 78K of memory. Now days, as you probably know, computers have 5000 or more K of memory. So, you seem to have rightly concluded that computers are where things need to be saved for remembering.
Do you keep a set of house keys somewhere, hidden, so that you can go get them to let yourself in if you lock yourself out? I put a spare set in my cars glovebox. And, my husband disabled the lock that locked me out that night, so I don't think I'll be getting into that difficulty again. I have 2 backups. LOL!
it helps the chill but best of all the pain