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lfranklin1960
New Member


Date Joined Aug 2015
Total Posts : 1
   Posted 8/6/2015 7:35 AM (GMT -6)   
My partner was just diagnosed with Lupus, Mixed connective tissue disorder and sclerdoma . Does anyone know of some natural things we can do to make it easier. We are still waiting for the Rheumatologist to call us to make an appt. The unknown is so scary, and looking on the internet makes it even worse.
Any advice would be helpful. thank you

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/6/2015 3:16 PM (GMT -6)   
Avoid UV rays, avoid vitamins that boosts the immune system, eat healthy, exercise, see your doctor regularly, and rest when you need to.

Others will come on with their tips.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 8/7/2015 7:02 AM (GMT -6)   
Joy you pretty much nailed it. The only thing I would add is avoid high stress or find ways to cope with it. That's something I personally struggle with very much. I think I freaked the rheumy out last visit when it became apparent how absolutely stressed out I was. It can definitely railroad you with a flare. Don't sweat the dx too much, write down your questions and concerns to ask the rheumy. You'll figure out what works best for you both. I think it's great you're doing this for your partner.
Diagnosed with SLE lupus October 2014.

*NOOGASTRONG*

joe'sprincess
Regular Member


Date Joined Aug 2015
Total Posts : 33
   Posted 8/26/2015 8:05 PM (GMT -6)   
Joy, when you say to avoid vitamins that boosts the immune system do you mean things like Airborne and Emergen-C and stuff like that?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/27/2015 12:07 AM (GMT -6)   
Yes, those are big no-nos.

Also avoid melentonin. It increases your immunity too.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

MrsMacD
Regular Member


Date Joined Jan 2005
Total Posts : 117
   Posted 8/27/2015 1:04 PM (GMT -6)   
I started taking B-12 in the beginning of August. No good too? I had no idea about that.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/27/2015 1:29 PM (GMT -6)   
B-12 is fine.

What you don't want are things advertised to "boost the immune system". Lupus is the fancy name for an over-active immune system, which is what we have. Take our over-active immune systems, boost them up to be even more over-active, and you get a big mess!!!

Also, always tell your Drs at every appointment what you are taking, both prescriptions and over-the-counter. Include vitamins, minerals, and any other supplements. Include if you are trying any special diets that are different than what you would normally eat. I generally take a drug list with me that includes this stuff and my med allergies. Better to tell them multiple times than to have them overlook it!!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/27/2015 1:31 PM (GMT -6)   
Is it prescribed or over the counter?

If prescribed keep taking it, but if over the counter I'd stop it.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/27/2015 1:37 PM (GMT -6)   
Lupus patients are often low in B-12, Dr's often tell us to take an over-the-counter B-12 supplement. It is one of the water-soluble vitamins, so you can't overdose on it, and it IS NOT something that will boost the immune system.

It is quite safe to keep taking it. It helps improve mental processing!


By the way, MELATONIN is also safe. Couchtater is incorrect, it does not "boost the immune system". Of course, always check with your Dr if you have any questions.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

joe'sprincess
Regular Member


Date Joined Aug 2015
Total Posts : 33
   Posted 8/27/2015 4:32 PM (GMT -6)   
Wow, this is good information that I never even thought about. I take Airborne when I have been around someone who is sick...... although I don't know why I worry about it because I have rarely caught colds or flu, ever! I think I had the flu once in my life and a cold only a handful of times!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/27/2015 10:13 PM (GMT -6)   
My pharmacist and my rheumatologist both tell me that melentonin is bad for lupus patients. Talk with your doctor before taking anything.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

MrsMacD
Regular Member


Date Joined Jan 2005
Total Posts : 117
   Posted 8/28/2015 12:34 PM (GMT -6)   
Thanks for the great info!!
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