Flaxseed Oil

[perry]

great tips... thanks.  I'm going to get some hemp seed oil and see how that goes over with my college age boys!

[fatburningmachine]

I take the liquid Flaxseed oil and not the pills also.. This was the way it was recommended for me to take it. I feel it is making a difference

[Sophiamama]

I have taken fish oil and flaxseed oil every day for the last 5 months and I can't say that I've really noticed any improvement.  I doesn't seem to bother my stomache but I always take them w/ a meal.  It's my first time on this site.  I am a 38-year-old woman who was diagnosed with Sjogren's about 5 months ago.  I have very dry eyes, mouth and lips.  I also suffer from fatigue, general body soreness which feels like the flu, and muscle weakness.  I use serum tears, systane (over the counter), and restasis for the dry eyes which provides some relief.  I take very good care of my teeth, use biotene products and chew a lot of gum (trident with xylotol) but still have decay and erosion.  I take hydroxychloroquine (Planquenil) and NSAIDs but I don't feel that there's been significant improvement.   

My question:  Does anyone have any experience with taking biological drugs (Kineret, Remicade, etc.) for Sjogren's?  There is a clinical trial going on in Norway currently that is using Kineret to treat the fatigue associated with Sjogren's.  I wish there was something else that I could do to improve the way I feel.  I miss feeling "normal" and wish I had some more energy.  My Rheumy seems very conservative when it comes to treatment, and wants to stick with Planquenil.   

[Dolly Dimples]

  Welcome Sophiamama,
                                      You seem to be doing everything right, so I'm sorry to hear that nothing seems to be relieving your symptoms..

                              I was very interested in the Flaxseed Oil thread, and was going to give it a go..

                             Sorry I have not heard nor tried any of the Kineret et'c trials, I am only on Naproxen myself,
                                    but the Plaquenil appears to be the main treatment as yet..

                                     Someone may reply to your query, and know of these trials, let's hope so!..

                                       We all wish to be feeling normal again , but that elusive cure just doesen't seem to be round the corner yet!!
                                          Do join us again and let us know how you are... Good Luck, Dolly
                                             

[Patze]

Hi Sophiamama,

Let me also welcome you to the SJS World!  Please look around as there are tons of topics that you might find interesting.

I take fish oil everyday, and I haven't really seen any difference in my eyes.  Oh well, maybe one day, there'll be something developed soon so we can have a better quality of life.

I can't speak of any of the biological drugs (Kineret, Remicade, etc.), as I've never been on any of them so far, but I know some of the members here have been.  Hopefully a few will stop by and give you some information about them and how it's affecting their lives.

Take care -

Patze

[Catilee]

Hi-
My eye doctor also recommended flaxssed oil to help the dryness in my eyes. I started taking it about a year ago.(2-3 x day) At my last eye exam, he said my eyes were not as dry.  Before I started this he was thinking of prescription remedy. Still to it. We all take differrent amounts of time to respond to medications and supplements.

[perry]

Would it make sense to take a flax seed, hemp seed, and a fish oil each day. maybe in lower doses!

Yay, I finally have a rheumy apt at Brigham and Womens!

[Chickpea]

Hi Sophiamama

I'm sorry you're feeling so exhausted at the moment.  I wonder whether your rheumy is giving Plaquenil time to work before thinking about other meds?  Most people here find it takes 3-6 months to show much difference but for many people it's all they need to deal with the major impact of dryness and fatigue.  Others need more meds, specifically immunosuppressants/chemo.

I've been on CellCept for 8 months and there are a few other people here who are also on it; quite a few are also on methotrexate.  Rheumies tend to use these more aggressive treatments for people whose immune systems are causing damage to particular organs: kidneys or more often the central nervous system.   I'm happy to give you more information if that would help.

Maybe NSAIDs aren't sufficient pain relief?  Have you also tried a cover of Paracetamol ie 8 tablets a day?  Some of us also find low dose amitriptyline/nortriptyline at night is helpful for neuropathic pain. 

Thinking of you - Chickpea

[ErinG]

Missyb,

How does the liquid oil taste?  I was wondering yesterday when I saw it in the case at the supermarket.

Years ago my ophtho had told me to take Omega-3 supplements but I fell out of the habit a while back.  I think I'll ask my rheumy next time if I should start it up again.