Hello everyone! I was just diagnosed in April of 2014 with SLE. I currently have myself on a lot of vitamins for immune support. The only prescription medication I take is Celebrex for the arthritis pain, which sadly isn't working anymore. I was wondering if anyone else is taking vitamins to help and if so, what are you taking.
I take a bunch of vitamins! I take: fish oil (helps with arthritis), Magnesium, Calcium, B12, D3, Multi-vitamin, Niacin, Melatonin, Vit. A, Biotin, Vit. C, Probiotic, & Turmeric (for inflammation). I can definitely tell when I do not take the fish oil, my knees hurt! I started taking vitamins in June as soon as I was diagnosed with Fibromyalgia and added a few more when I received my Lupus diagnosis in November. I feel better and I only take a low dose of Plaquenil for my Lupus. Even my blood pressure, which is usually only borderline, went down and the doc said it was perfect. So there is something to the vitamins and if it keeps me off of meds or low doses, I'll take them!! You really have to look up good dosages though.
My rhuemy said, that couldn’t take multi vitamins with meds that I have. He did put me on vitamin D due it too low.
All the research I have done on Melatonin says it should be avoided by people with any kind of autoimmune disorders.
I take calcium, magnesium, and D2. I am on a ton of meds, though, and still working through diagnosis, so it's hard for me to tell whether anything or nothing is working? Sorry, I can't be more help!
My Rheumy said it was fine since I also have fibromyalgia and needed the help getting sufficient rest, so it may depend on the severity of the Lupus.
Calla Lilly said:
All the research I have done on Melatonin says it should be avoided by people with any kind of autoimmune disorders.
Thank you…maybe I will have to look into it further. I have fibro also…
Savannahgurl said:
My Rheumy said it was fine since I also have fibromyalgia and needed the help getting sufficient rest, so it may depend on the severity of the Lupus.
Calla Lilly said:All the research I have done on Melatonin says it should be avoided by people with any kind of autoimmune disorders.
hey, me--too I take krill oil (fish oil) , grape seed extract, ginger or garlic supp, things to thin out my blood . I have a thick blood cond. Called APS -antiphospholipid antibody syndrome (huges syndrome)., But my rhmy classifyes it under a connective tissue disease, it caused me 3 misscarriages. I'm the same meds as lupus, even though I test neg for Lupus SLE. Have a little symptoms like sun sensativity & fatigue is the biggest one , & dry eyes. Occ headaches but not often unless I'm exhausted. My back burns at times when I'm cutting veg or making juice but joints don't hurt . Can anyone relate.
I also have a recent SLE diagnosis having been diagnosed this past summer. While I have always been on multivitamins I have not increases the dose at all although the doctor has added folic acid to the Methotrexate. Motrin taken regularly is the only med I have found that helps with the pain.
In addition to my prescription medications, I take a multi-vitamin, B-Complex, D3, C, and Ginseng. I also drink Green Tea every day, and try to eat anti-inflammatory spices whenever possible (such as Ginger, Tumeric, Cumin, Curry, Coriander).
You should also talk to your doctor about vitamin dosages - I take 500mg of Vitamin C twice a day and 2000iu of D3 once a day, on my doctor's recommendation!
Savannahgurl said:
I take a bunch of vitamins! I take: fish oil (helps with arthritis), Magnesium, Calcium, B12, D3, Multi-vitamin, Niacin, Melatonin, Vit. A, Biotin, Vit. C, Probiotic, & Turmeric (for inflammation). I can definitely tell when I do not take the fish oil, my knees hurt! I started taking vitamins in June as soon as I was diagnosed with Fibromyalgia and added a few more when I received my Lupus diagnosis in November. I feel better and I only take a low dose of Plaquenil for my Lupus. Even my blood pressure, which is usually only borderline, went down and the doc said it was perfect. So there is something to the vitamins and if it keeps me off of meds or low doses, I'll take them!! You really have to look up good dosages though.
I take a bunch of vitamins too but would not feel right recommending them since I believe in supplementation not only geared to your challenges but to your particular chemistry. I would recommend finding a Functional Medicine doctor that can help you on your journey with specialized recommendations.
It sounds like you are doing a wonderful job on your own so maybe the help of a specialized Dr. could fill in the gaps.
I do not take any meds, either.
Nice to meet you and good luck :)
I truly believe that Ashwaganda root for joint pain. I have been using it for a couple of months and my hands feel better than they have in years. It helps so much with inflammation.
Hope it will help you.
hi i take plenty of b vits. b-12 500 mcg a day and super b complex, i also take vit c and vit d 4000 units per day.........it really helps too! you have a very merry christmas, i have had lupus for 20 years now, and have been taking these vits. for the past 18yrs..god bless..purrs..catspaw1955
I live breathe and adore curcumin. If i didnt have that i would have died 4 years ago. Dont bw afraid to take alot. Its bettrthan the meds and ibprofen
Not familiar with a "functional medicine" doctor. Are they MD's? Separate from your rheumy? I also take B complex, high dose vit D, magnesium and depakote for migraine. Any further information would be very helpful. Thanks!
Lulu said:
I take a bunch of vitamins too but would not feel right recommending them since I believe in supplementation not only geared to your challenges but to your particular chemistry. I would recommend finding a Functional Medicine doctor that can help you on your journey with specialized recommendations. Let me know if you need help finding one :)
It sounds like you are doing a wonderful job on your own so maybe the help of a specialized Dr. could fill in the gaps.
I do not take any meds, either.
Nice to meet you and good luck :)
I am constantly researching and trying new supplements together. Currently I am taking Schizandra, Milk Thistle, Gingko, Ginseng and St Johns Wort. I use Tumeric all the time when I cook. I also just started taking Aleve PM at time which seems to be helping with my sleep...!!! I will definitely have to look into Ashwaganda.....!!
Wow,
I didn't realize all of the replies I would get when asking about vitamin supplementation! It's nice to see I'm not the only one that uses natural remedies. Since I didn't specify which vitamins I take... I can list them
Fish Oil - 1200 mg twice daily
Flaxseed Oil - 1000 mg three times a day
L-Lysine - 500 mg four times a day
Glucosamine plus MSM 1500 mg/ 500 mg three times a day
Magnesium - 250 mg daily
Folic Acid - 400 mcg daily
Calcium + D3 - 600 mg/ 400 IU twice a day
Zinc - 50 mg daily
Vitamin C - 500 mg daily
Vitamin E - 400 IU twice a day
Super B Complex - 1 tablet daily
SAMe - 400 mg daily
Good question, Daisy. Often, they are not MDs. Functional medicine training is generally some online courses that are largely pseudoscientific in nature available to nurses, naturopaths, chiropractors, etc. for a couple of thousand dollars, in exchange for which they earn a certificate that they can use to set out a shingle as a functional medicine practitioner.
Daisy said:
Not familiar with a "functional medicine" doctor. Are they MD's? Separate from your rheumy? I also take B complex, high dose vit D, magnesium and depakote for migraine. Any further information would be very helpful. Thanks!
Lulu said:I take a bunch of vitamins too but would not feel right recommending them since I believe in supplementation not only geared to your challenges but to your particular chemistry. I would recommend finding a Functional Medicine doctor that can help you on your journey with specialized recommendations. Let me know if you need help finding one :)
It sounds like you are doing a wonderful job on your own so maybe the help of a specialized Dr. could fill in the gaps.
I do not take any meds, either.
Nice to meet you and good luck :)
I take vitamins/supplements as well and slowly weened myself off the prednisone, and am currently weening off of methotrexate. I am down to 3 a wk from 6 a wk. I take Vit D3, Vit K2, B Complex Magnesium, flax seed oil, Folic Acid and Tumeric. So far doing ok, some aches/pains but thats pretty much from my arthritis (OA) and I really didn't feel much better on the prdnisone and had to worry about the side effects so I am happy with the way things are right now. You just have to be careful where you buy the vitamins/minerals because the % may vary so best to go to health store, this advice was given and explained to me from my P/T that I was going to. He was very good at educating and a firm believer in natural remedies over meds, especially in the foods you eat.