vitamins for sle

[MonicaT]

hello. I was wondering are there any worthwhile vitamins to take for lupus sle! I take vitamin d and folic acid. Is there anything else this group has found helpful?

thank you

[Lizard28]

My vitamin d and folic acid keep dipping so I get them on prescription, I think the ones from the doc are slightly higher dose, I get my bloods checked every four months and if I needed anything else it would show. You are doing well with those vitamins.

[MonicaT in reply to Lizard28]

thank you i get them on prescription as well. Keep taking them xx

[Poshcards in reply to Lizard28]

you are lucky I have to buy my vit D even though I am below 10 xx

[Hamptons]

I take vit c, b, E, d and zinc, magnesium, potassium and omega 3. I was advised to take peppermint capsules to ease my stomach by rheumatologist.

My vit d levels are low as with many lupus patients so I now have it on prescription.

[Susankulp]

HElko Monica. My name is Susan I live in the USA. I am in Virginia. I saw your question about vitamins for Lupus SLE. I also have a vit D defency. Also all my life I have been Anemic. My iron has been a huge problem for me. I do not absorb iron. I have had 2 iron infusions. Then a hysterectomy which has helped a lot. The iron deficiency caused me to have RestlessegSyndrome. It ruined 40 years of my life. Recently I went to a pain management Dr and they put a pain pump in my left hip. I call it my "RUMP PUMP". It finally got rid of my RLS. I had "episodes" where my whole body was spazing and the pain was so debilitating it would make me incoherent. I lost my husband on Dec. 29, 2019. So being by myself is really scary! I have had a few "episodes" sense then when the pain is so bad I scream out uncontrollably. I am telling you this because Anemia is one of the symptoms of Lupus SLE and the doctors didn't connect the two. I went a long time being told I have "its all in my head Syndrome" ot the old "You just want pain meds!" And yes yes I did I wanted that pain to go away. The pump was put in because of lower back pains but....it is not at the right dose yet. But I also am overwhelminglytired. I cansleep for a week and still be tired. My psychiatrist gives me stimulants to keep me awake but now I am told I have narcolepsy. The one vitamin I can not live without is B~12 SUBLINGUAL. The pills are no help and the shots I take monthly. But the B~12 SUBLINGUAL help me the most. It is b~12 in liquid you put under your tongue for 30 seconds. That has helped me so much. I am sorry to ramble on and on just to get to a B~12 suggestion! I thought if you knew more about my life story living with SLE LUPUS. May help it from happening to you or if anyone reads this and I'd going through the hell I have been living with would not feel alone. In my pain pump I am given either morphine or now dilaudid in a continuous manner. And I can give myself 3 extra doses a day. I hope something I have said can help you! Or someone! I pray you have a great Dr that listens to you when you are explaining what you are going through.

God bless you and your family and I hope they are giving you the support you deserve and need!

Your new friend accross the pond from Spotsylvania, Virginia.

Susan Kulp 🙏

[MonicaT in reply to Susankulp]

bless you and all you have been through. I hope for better health for you and thank you for this information xx

[Sudi]

Hi, I too take Vit D, also Vit B complex as eating properly due to work/shifts or not feeling hungry but having to eat something may not sustain me properly

[MonicaT in reply to Sudi]

ive just ordered b complex. Thank you. Take care xx

[Susankulp in reply to MonicaT]

The B complex is good but it does not give you the effects of the B~12 SUBLINGUAL. These are liquid and you put a dropper full under your tongue for fast absorption. Which is an immediate effect. It is not nasty tasting. The B Complex is also available sublingual butthat did not taste very good. You should ask your PC to order you a blood test for your iron, hemoglobin etc. Anemia is one of the symptoms of Lupus. I can not absorb iron. I had 2 infusions and they did not last even 3 weeks. Do you have problems with your legs or elbows, any joints can have Restless Leg Syndrome. That is a indication you are low in iron. I have been Anemicall my life but they never put the symptoms together to diagnose my Lupus. I suffered for 40 years going from doctor to doctor. They were so sure I just wanted pain meds! And yes I did want pain pills because of the excruciating amount of pain I lived with. I also have Gastroparisis so taking Paquinil is not an option. (Plus those pills causedme to have gas so bad it was making my entire bedroom smell so very bad! You talk about embarrassing 😳 OH MY It was awful! **TMI?**)

B~12 SUBLINGUAL

[MusicalFurbaby]

Hi I take magnesium and Vit D/K spray, but that’s for osteoporosis rather than for lupus specifically. In the past, I have also taken turmeric for joint pain, which made a big difference. Only reason I stopped was because the benefit seemed to wear off after a while, as though the body developed a tolerance to it. I really should go back on it again—I’ve been told that after a pause, returning to turmeric can restart the pain relief you once had!

[nolamornings]

I take turmeric, ginger, cinnamon, omega 3, omega 6, B12, B6, MSM, Reishi mushroom, lysine, and biotin. I was diagnosed with SLE Lupus in 2009. A few years ago, I got tired of all the side effects from man-made medication, so I stopped taking it and switched to natural supplements (with guidance from my rheum). I also made changes to my diet, primarily going gluten free. My symptoms are under control and I feel a lot better.

NOTE: I am NOT suggesting that anyone stop taking their meds. I'm just sharing what has been working for me.

[MonicaT in reply to nolamornings]

so glad this works for you. Xx