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Sjögren's Syndrome Message Board
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Old 07-13-2008, 12:17 AM   #1
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Natural Remedies for Extraglandular Aspects of Sjogrens?

My neuroopthalmologist suggested taking Omega 3 for the extra glandular issues from my sjogrens. He says that it is not necessarily the amount of fluid that my body is producing but the quality of the fluid (i.e. it is not oily enough). Has anyone had any experience with this?

Are there other natural supplements or remedies that people would suggest? I pretty much have the eyes and mouth under control; it is the lungs, heart and digestion that are withering in dryness (and therefore affecting my muscles as well). Any suggestions at all would be greatly appreciated!!

 
Old 07-13-2008, 03:56 PM   #2
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Re: Natural Remedies for Extraglandular Aspects of Sjogrens?

Hi Patricia-It's me again --and I am glad you are out there cause I too need to talk about this stuff having just been diagnosed with secondary sjogren's , they are callling it secondary because I have another autoimmune disease hashimoto's thyroiditis.
First,--about your thyroid (ooops that was your other post, --but , anyway) what is your tsh level? Some docs will say you are ok if within tsh range that may go up to 5.3 or so. But , apparently most of the population is around 1 or 1.5 and anything much over 2.5 may be hypothyroid. So look at your latest labs and see where your tsh is.
I am so glad to hear you say you have eyes and mouth moisture under control. But please tell me how you did this
what is your regimen for your eyes
what is your regimen for your mouth
I take omega 3 oil daily. I use nordic naturals , lemon flavored. This product is from Norway and touted to be one of the purest--that is toxins in fish oil removed in processing. I use 2 teaspons a day. I like the liquid better than the pill because I don't have to wonder if I am getting the oil because those capsules are thick and have to dissolve in your intestines.
I also use evening primrose oil also from nordic naturals-take two a day-they are small pills.My doctors pcp and optha have both said use omega 3.My eyes are soooo dry and skin too -so I guess I might be worse offf without the oils
For my eyes--lower ducts plugged, daily use of restasis 2 times, refresh plus throughout the day, refresh pm ointment in eyes at night, in am cleanse eye area with occusoft pads to get ointment goop off of my eyes.
For my mouth-biotene toothpaste, prevident 5000 for evening brushing, ACT flouride mouth wash at night.
My skin esp my face is so sensitive and dry and irritable. I use cetaphil gentle lotion cleanser, then cortaid 1% cream, or cetaphil cream.
What do you mean about dry lungs , heart, and digestion???What else is happening?On my x rays they say there is some scarring in my lower lungs. I wonder what that is.There is so much going on for me healthwise now that they found a 3cm tumor in my neck , I am waiting for a second opinion with another surgeon but it has been stated possibly malignant and surgey needs to happen. This may be related to my thyroid disease or not-docs haven't been all that clear with me.
But, I would love to hear what has worked for your eyes and mouth. And, I think omega 3 oil and evening primrose oil would be good for you.

 
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Old 07-13-2008, 11:07 PM   #3
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Re: Natural Remedies for Extraglandular Aspects of Sjogrens?

Thanks Osteoblast. I will have to check my latest thyroid results. I, too, was told my Sjogrens was secondary (already diagnosed with Ocular Myasthenia Gravis and Celiac's). But I have to tell you, now that I am learning about Sjogrens and how the dryness can affect your organs and muscles, it explains almost all of my symptoms.

I feel like my eyes and mouth are somewhat under control because they were never really that bad to begin with. I take Florinef to help me retain fluid and I drink a ton of water and Gatorade every day. I also take salt tablets and eat a lot of salty food. I can tell when I am starting to get dehydrated because my lungs get sluggish (hard to push the air out) and the left side of my face, especially around the outside of my left eye starts to go numb (the vasculitis really kicking in). Additionally, my skin (especially around my fingernails) gets really really dry and cracks. Then I really down the fluids again, and apply heavy duty creams and lotions.

Other than that, I really try to exercise a lot to keep the blood pumping. My blood pressure has been fairly low my whole life (95/65) but has become dangerously low now with the Sjogrens (as low as 80/40 at times).

I alternate between 10 and 12mg of Prednisone daily and take Motilium to aid my digestive fluids and muscles. That is pretty much my regimen right there. Oh, and the estrogen patch as well (vivelle-dot .5mg twice/week - this supposedly helps my heart as well) and now the Omega 3s. I want to get off of the Prednisone soon so my doctor and I will be talking about alternatives this week. Thank you for the tip on evening primrose. I will give that a whirl as well.

Sorry I can't be more helpful on the eyes and mouth. It does sound like you are doing everything I have heard of already. Keep me posted on how you are doing!

 
Old 07-14-2008, 03:19 PM   #4
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osteoblast HB User
Re: Natural Remedies for Extraglandular Aspects of Sjogrens?

Batricia-I have read in a number of places that prednisone is bad for your bones, so if you already have osteoporosis--your doctor should try to find something else if possible for you.
I can't recall , did you say that had a hysterectomy? If not, what are you doing for progesterone?

 
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