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CAPISTRANO's Photo CAPISTRANO Posts: 3,435
5/12/14 9:34 A

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I know Vit B12 and Vit D take a long time to build up before you see a difference. It could be as long as 6 months. But you should also have your doctor check your levels the next time you are due for blood tests. My mom is 81 and because of her age, her body is no longer making B12 so she needs a shot 1x a month as it was so deficient.
I had my levels checked a few years back and they were low but supplements were enough to bring them up. I didn't need shots but as I get older, that could change.

I have also read that a more alkaline diet will help lower inflammation in your body and that could help with flares or at least help you feel better. The level of inflammation is key as to how we feel.
Hope this helps
Cathy


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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AUTUMNMDOVE's Photo AUTUMNMDOVE Posts: 146
5/12/14 5:00 A

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I recently did some research and read that taking vitamin B-12, vitamin C and vitamin D can help people with Lupus, I have been taking those vitamins for about a month and a half now, I was wondering how it helps Lupus and when I can see a more drastic difference in my energy and pain levels. Also, is there anything else I can take or do to help me have less flares?

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CAPISTRANO's Photo CAPISTRANO Posts: 3,435
7/13/13 10:44 A

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Hi Mary and welcome to our group! There is lots of info out there about Lupus and here as well. It effects everyone so differently and yes it is a whole new ballgame.

The vit b-12 and vit d will help with your energy. I was very low a few years back too and it took quite awhile for my levels to come up. I also take COQ10(ubiquinol sp?) and that helps too...just 100mg a day. Others here take some different supplements to help with energy levels so it's trial and error depending on how you feel.

Just take it one day at a time and learn to listen to your body. If you need to rest or sleep then you should. We've all had to learn to tune in to our bodies and take care of ourselves. That's an important part of Lupus...if you don't take care of you, then you won't have the energy to take care of your family.

Glad to see you posting...please join us in our weekly thread under the 'weekly check in forum'. We start a new week every Sunday.

Cathy emoticon


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LADYB2013's Photo LADYB2013 SparkPoints: (1,171)
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7/13/13 4:15 A

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hi my name is mary and i am fairly new to lupus. there is just soooooooo much i dont understand. i have had RA for years and fibro, but this is a whole new ballgame. i am proud to be here with you all. i just recently started vit. b-12 to try to get some much needed energy, and i have to take prescribed vit. d for it is severly depleted. i hope yall can offer me advice and help with trying to understand this illness. thanks.
hugss

LADY


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CAPISTRANO's Photo CAPISTRANO Posts: 3,435
4/30/11 8:39 A

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I started back on the vitamin B-12 pills and added CoQ10 and vitamin D. Its not quite 2 months and I do feel a little better but I know it may take longer to feel a better effect, so will continue taking all of them.

Nolenms...how did your doc visit go? Did your doc change your meds? Hope all is well. Check in here occasionally and let us know how you are doing.


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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NOLENMS's Photo NOLENMS Posts: 16
2/14/11 2:20 P

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Thank you all for the information, I go to my GP next week, so I'll ask her about the B-12 and its back to the dermy on 3/10 to decide if the Protopic is doing its job or if I have to move on to another medication.

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CAPISTRANO's Photo CAPISTRANO Posts: 3,435
2/2/11 6:24 P

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Thankyou Rick! Maybe it's time to go back to those B 12 drops!


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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BACKMOON's Photo BACKMOON Posts: 8,038
2/2/11 11:23 A

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Cathy I have a friend who uses the sublingual B12 and he swears by them. I use both liquid and non liquid tabs myself. And it was probably at least a couple of months and honestly the reason I noticed it is because I stopped using them and noticed the lack of energy. I think, as with a lot of things ie: meds, you don't notice so much what they are doing until you stop. If yo can follw that line of reasoning. My Dr. says, he doesn't believe they actually do anything especially since I take a multi vitamin but, if I think it does, by all means use them.

Hope that helps

Rick

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CAPISTRANO's Photo CAPISTRANO Posts: 3,435
2/1/11 9:01 A

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Hi
Just curious about the Vitamin B12. Is there any difference between the potency of a pill form or liquid form. I had heard the liquid was better absorbed.
The liquid I took was a bright pink and you dropped it under the tongue and held it there for 30 seconds but I took it for only a month or 2 and didn't feel any better. Rick, how much longer did you take it before noticing a difference? Thanks


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BACKMOON's Photo BACKMOON Posts: 8,038
2/1/11 8:37 A

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Melissa I looked into the supplements and I am going to consider the Flax seed or the oil and possibly the milk thistle. The COQ10 and Hawthorne Berry however, interact with several of the BP meds I take and I will need to discuss whether it would be beneficial or a hindrance for me, but thank you for the info. You can never have too much info about this disease.

Cathy, I used a B complex for a while and it seemed it took a while before I really noticed that I did seem to have a little more energy. particularly if I was on a restrictive diet. I am going to start taking them again, actually starting this morning. I think they do help me and they make you pee a nice florescence yellow!(LOL)

Rick

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CAPISTRANO's Photo CAPISTRANO Posts: 3,435
1/31/11 9:28 A

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Hi Melissa
Sorry I didn't get back to you. But glad you are feeling better now. Everyday is an adventure with Lupus.
I found the info about the supplements interesting. I have been on a few of those but not at the same time. My doc also wants me on on Vitamin B12 because she said my levels were low, which I did try for a month. I felt no different but maybe in combination with the others you suggested, will help with energy and inflamation.





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BACKMOON's Photo BACKMOON Posts: 8,038
1/29/11 2:40 P

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Thank you Melissa.. I will look into them.

Rick

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NOLENMS's Photo NOLENMS Posts: 16
1/28/11 12:30 P

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Rick, My dr recommends these for everyone, not just those with lupus:

Flaxseed Oil capsules (2-5 daily) for healing and to help with inflammation
Hawthorn Berry Herb for circulation, but can also thin the blood
Milk Thistle (2-5 daily) for liver health
CoQ 10 (100 mg daily) for the nervous & circulatory system, also helps with producing more energy, also studies have shown that this has helped delay dementia with Parkinson's patients.

I'm gonna try them, can't hurt & I could use more energy (maybe I can stop with all the energy drinks and stuff LOL)

Let me know!

Melissa



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NOLENMS's Photo NOLENMS Posts: 16
1/27/11 10:44 A

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OK, I left the list at home, but when I get there, I'll give it to you. The ones I remember are Flaxseed oil and CoQ 10. But I'll be sure to get the entire list and their uses for you. She said ABSOLUTELY NO echinacea or ginsing.

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BACKMOON's Photo BACKMOON Posts: 8,038
1/26/11 8:25 P

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I would be interested in the recommendations from the health food store.
Rick emoticon

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NOLENMS's Photo NOLENMS Posts: 16
1/26/11 3:24 P

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Thank you Rick! I appreciate your wisdom!! Today, I feel really good again! This is just too weird! I was having some stress in my life, but I took care of it for the time being, thats what I'll do, just take things one day at a time!! Its really all any of us can do!! I'm going to try to be on here more often, since I'm getting more serious about being healthy. My Dr has also recommended some items from the health food store, so I may try those too and see if it helps.

Hope to talk to everyone again soon! Its very comforting to know I'm not completely alone in this!!

Melissa

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BACKMOON's Photo BACKMOON Posts: 8,038
1/26/11 11:46 A

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Hi Melissa and welcome to the team!

Generally a "flare" is recognized when symptoms appear. These signs may come and go. You may have swelling and rashes one week and no symptoms at all the next. You may find that your symptoms flare after you’ve been out in the sun or after a hard day at work. This happens to me frequently because Ii don't listen to my Doc and take the proper precautions.

Just before a flare, many people with lupus:
feel very tired, have pain, have a rash, have a fever,have stomach discomfort, have headaches or feel dizziness. It is different though similar for a lot of us.

I have DLE, SLE and Lupus Nephritis and was originally diagnosed in the early 70's. I have a good productive life, though not without difficulty, but I'm happy, have two wonderful children and a very supportive wife.

Lupus.org is a good informative site and they have a magazine you can subscribe to. Learn as much as you can about the disease, ask your Doc questions and if you don't understand what your Doc is saying make him explain it until you do. Knowledge is power and the more power you have the better you can control the disease and not let it control you.

I do hope you will join us on our weekly chat thread because it is good to friends with something in common who understand that you can talk to. and any questions you have we will try to help as best we can.

If you are interested, please check out our Spark pages I know some of us have share some of the difficulties we have had.

Good luck at your Dr. appt.

Rick



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NOLENMS's Photo NOLENMS Posts: 16
1/25/11 10:01 P

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Thank you Dorothy, Like I said I am pretty clueless and the one thing that I think caused mine to originally flare is the sunlight, I was living in Hawaii when this was first noticed. I have seen different doctors for pain in my joints and muscles, and he thought I had carpal tunnel, but when they tested me it wasn't bad enough to cause the pain I was having and in the places I was having it, the backs of my arms, shoulders, elbows, sides of my hands, weird places like that. I've had to have a couple of EKG's because I've had severe chest pains, no explanation on that either, DR said my heart was fine. I have just wondered since I found out about this, if the pains and the Lupus are related, and could it be SLE. I am having more blood work done tomorrow, so we'll see.

Thank you again, its really nice to have someone to talk too

Melissa

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DJ4HEALTH's Photo DJ4HEALTH Posts: 41,779
1/25/11 8:19 P

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That does sound like a flare and in all people it is different and affects different organs too. You are right to say that DL is not as severe as SLE. With the one that you have it sounds like there is something that caused it like medicine or even a plant. With SLE they don't know what causes it and it can attack any organ and sometimes more than one at the same time. Mine likes to hit my chest area and other parts of my body.

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
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NOLENMS's Photo NOLENMS Posts: 16
1/25/11 4:53 P

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I'm really new to having Lupus, I've had it for at least the last 2.5 years, but only very recently been diagnosed with discoid lupus.

Can someone help me to understand what a "flare" is?

Yesterday was a great day, today I can barely keep my eyes open, feel feverish, cold chills, upset stomach (really don't want to go into details! LOL)and I just developed a massive headache.

I'm thinking flu, because it doesn't seem to me that DLE is as serious as SLE. If I'm wrong please tell me, I really am almost clueless on this.
The only information I have read has been on the lupus.org website.


Thank you for any information,

I really appreciate this

Melissa

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