I haven't been called by doctor yet, but I can see my results on line, and im pretty low on vitamin D.
My Question: The cause, is it from sunscreen and not much sun.,.or lupus itself, or...plaquinil/hydroxy med doing it...?
Im in Canada, we have a thing called my ehealth where you can see most results if you sign up for it..
Seems lots of people are vitamin d deficient, highly recommend taking a vitamin d supplement, I do and it sure helps with bone aching!
I was till just a month ago, taking calcium with magnesium and vitamin D combination...I just ran out and didn't pick up that combo...just grabbed calcium. Things have sure changed though...not all that long ago they use to stress to be careful taking too much vitamin D... Im betting its happening cause many wear high sunscreen factors now...Many have to...
Well not all of Canada, dgleds. I am anxious to get back to BC just so that I can do that. I have been taking D supplements for years, even when I was a sun worshiper (before diagnoses) so it didn't stop Lupus. Now I take 3000 UI a day to try and cover for the lack of sunshine. I have not had D checked ever so don't know if I am OK or not. If you are not taking D you should be - they claim it is hard to take to much so dive in there, it is good for you - Lupus or not.
Im gonna!!! 
But I been looking up stuff to see what might cause the lack and found one interesting report...I don't take steroids, but it mentions Hydroxy too:
rheumatology.oxfordjournals...
Thank you for sending that but I think I will have to go back to school for a few years to understand it all, lol. I will tell you what I have done this month, but don't tell my husband, he will freak out. I have cut my Hydroxy to 200 a day taken at supper, upped my Omega 3 to the recommended dose and include a lot of omega foods in diet, and taking Calcium Magnesium. Don't ask me why, I just wanted to see what difference it would make. I have been feeling surprisingly good the last few weeks. Yes I still get flushed near lights (sun, computer, sitting near window), my legs are sore in morning but better than they have been and I have been in a pretty good mood. Maybe it is just a good spell, maybe it will change when body realizes it's not getting its Hydroxy fix, but for now I am OK. I have an appointment to see opthamologist on Thursday so a little nervous about that - so much talk on here lately about Hydroxy and eyes. Take care, thanks for link.
Well keep me posted...
My Rhumey forgot he told me I could take 1/ 200 mg every other day and shook his head and said,"Thats very low, but ok then"...He turned around and mumbled, "I think if you came off the hydroxy, you be full blown Lupus"...I feel ok, except my thumbs hurt at times just above the fat fleshy part...Im ok in the sun it seems...What takes me down is stress.,.feels like im a deflated balloon if too much stress...(a different feeling than ever before)...and if Im tired I get little jabs in my chest (but only then)...I often wonder if they have this all right, cause so many things cross over...post meno, hypothyroid etc....But oh well...my only thing ever has been my funny ANA and inflammation...I'll just hang in there
Hi - I don't have Lupus - I have RA plus some auto add-ons Sjogrens and Raynauds. I'm currently taking 4,400 IU of vitamin D. I did get myself tested privately back in September and was 26 - bottom of "insufficient". I then retested myself a few weeks ago and it was 59 - low end of normal range so I reckon it's making a lot of difference to me and the clinic told me to keep on taking this much.
I was seriously depressed last year for the first time in my life and the AdCalD3 that my GP prescribed seemed to make a big difference although I only realised this with hindsight - the black fog just seemed to lift after I'd been taking the AdCalD3 for a few weeks and nothing else much changed. Someone did tell me on the Thyroid UK site that I should get my calcium levels checked too now just in case they are too high as this is dangerous apparently and taking D supplements can cause rise in Calcium levels.
But I haven't felt as awful in myself since I took the AdCalD3. I am off all meds now because of tolerance issues and I seem to be holding out nearly four weeks off Methotrexate and four months off Hydroxy. I do wonder if I might be able to control my autoimmune problems with just the Levothyroxine and thought through supplements but will see what my rheumy says when I see him in ten days time.
You know I have brain fog.,.cant concentrate on small tasks...It will be interesting to see what happens after Vit D....The whole thing is a fine balancing act....Menopause or any hormone thing we go through, can cause imbalances....My thyroid was having fun few years back, just about menopause time, Mom dying, daughter leavin home etc....(All the fun life stuff...not)...Oh well I probably said this above...Just have to see what "comes out in the wash" I guess...I don't have the favorite Rhumey.,.his rating on the "Rate a doc page" is fair...He has been always nice to me though...Others don't like him...Love a second opinion, but would have to come off hydroxy for about 6 months...its super hard to get in to see anyone, but another doctor office friend of friend got me this Rhumey...There are 2 favorite lady Rhumeys in Vancouver that they tried for..one never answered.,.other booked for a while...
I like that idea of "rate my rheumy" - anon of course like the one for teachers! Yes it's so confusing isn't it? I like this community because so many people are like me - just confused by the ever growing mix of autoimmunity, hormones and symptoms and drug responses. Someone on the NRAS site told me that at some point I would just become resigned and accept this complex disease as they have done. I don't know how to accept it when it keeps changing and when I can't hack the drugs they tell me I need?
You should see what hydroxy did to me at the doses they recommend at first...
Even the Doctors aren't really sure about all of it..
I bet back in the olden days WW2 time etc..I bet RA they use to diagnose, coulda been Lupus...
My Gran apparently had bad RA...I had an Aunt that was running on one kidney and lots of problems (her daughter)...I never knew them, cause they were all over in the UK... I tried to asks tons of questions about everyone as I was growing up (glad I did)...Ive sat here at night trying to think of family health and what I know to compare...I have a cousin same side of the family (Dads side) that had cancer of the thyroid...So that side of the family seems to have autoimmune stuff...Yet one Aunt made it to like 92...They all seem to suffer with leg probs, but I don't know what kind of leg probs.
I went and stayed with some elderly relatives that I don't know well in order to get the family history last weekend. They were lovely - both very poorly though but not with autoimmune stuff. I did ask but all we could find was gout and type 2 diabetes - neither of which are autoimmune. Having said this both my parents died suddenly of heart failure before reaching a grand old age and my mum did used to complain a lot of swelling and excruciating pain in her feet and wrists which she called her "rheumatism". I will never know now of course. Hydroxy made my face and lips swell up and caused a painful follicular rash all over my chin but actually of the three DMARDs I've tried so far it was the most effective I feel. I don't think I can bear to try anymore so until the RA comes back as clear cut bona fide RA I'm just going to remain drug free. Hoping the Vit D keeps me well. I was told to add K2 in as well so must get some as I trust those on these HU communities to keep me right on this stuff!
fishy oils. are good...I take A, B complex, C complex (with Rutin and hesperdrin)...calcium and magnesium, low dose E.
.I was taking D as well, but guess not enough...
Hydroxy made me pee brown urine
rotten headache
and 1 good thing...made me lose my appetite. (could live with that one)..
All that disappeared when cut the dose in half, but since cut in half again....
I was diagnosed with osteoporosis 30 years ago. I had had a surgically induced menopause aged 32 and had had many drugs for SLE so it was no surprise. I dutifully swallowed biphosphonates for years thinking they were giving my bones some protection. No one thought to test my vitamin D levels. Eventually I had a bone scan showing that my osteoporosis was very bad indeed and my vitamin D levels were tested and found to be almost non-existent. My spine is a mess and I have developed a curve at the top of my spine. I now have osteoarthritis in my spine. I am in agony. All this and Lupus too. I take vitamin D supplements now and now get Prolia. If you have Lupus get your vitamin D levels tested!! You are at high risk of getting osteoporosis and without vitamin D cant metabolise the treatment. Vitamin D supplements may do little for Lupus but will spare you the disastrous consequences of taking drugs for resultant bone disease without the ability to get the benefit of them.
Rhumey has me on high vit D now for last couple months...
Vitamin D
Vitamin D question
Vitamin D
Vitamin D suggestion
Help understanding test results please
