Author Topic: Has anyone been symptomatic free for at least a year?  (Read 11004 times)

Deb 27

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Re: Has anyone been symptomatic free for at least a year?
« Reply #45 on: May 31, 2015, 01:52:10 PM »
I am praying that SjoGirl is right, if people have been symptoms free, they wouldn't be on the forums, they would be too busy living it up!!

It's been a huge struggle for me as well. Sometimes, I think I've discovered something that helps but that doesn't last. We don't have enough fair weather for me to tell if it works. The up and downs drive me nuts.  It's like you have some hope when you feel like your old self and then you wake up one day feeling bad again.

It's been a really rough weekend for me. I even took more meds. Today it's rainy and I think perhaps that's it but who knows. I've tried different diet things and have gluten out of my diet. It seemed to work for a while, but then only for a while.

I see a new rheumy this week and pray he's got some relief for me!

Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

bluegardenia

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Re: Has anyone been symptomatic free for at least a year?
« Reply #46 on: May 31, 2015, 02:20:27 PM »
i have been symptoms free for two years...my  lips biopsy was negative. then in october dryness strated again, they told me that i was hipocondriac... i wanted a second lips biopsy and it was positive. my dryness wa horrible for some months then it got better , so better that for some days i can forget sjogrens but a little stress makes it worse at once. anyway i ve never been like "before". my eyes improved a lot with omega even if my doctors or most of them ,say thats not related. i take vit d and it was good for fatigue, i think. im not on salagen evoxac or pilocarpine, i cannot.
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Scottietottie

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Re: Has anyone been symptomatic free for at least a year?
« Reply #47 on: June 01, 2015, 11:33:32 AM »
Hi - I haven't been totally symptom free but my symptoms have been pretty stable for at least 10 years now.  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

LisaMarie

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Re: Has anyone been symptomatic free for at least a year?
« Reply #48 on: June 01, 2015, 12:52:42 PM »
I still take neurontin and plaquenil.  I can't say that I wouldn't have symptoms if I didn't take them.  But I also know that for the most part, I've felt really really well for about two years now.  There have been weeks where I felt really bad and was afraid it was a flare but realized it was a reaction to trying red light therapy.  I just can't do certain lights so what made me think that I could do that????  Crazy woman.  Stopped doing it and have been feeling wonderful.

Working on a total redo of me now....while training for my first marathon at 50, I decided to build my strength with exercise and nutrition.  Switched to clean eating!  I'm loving it and loving life.  But I still take my meds.
Plaquenil (generic), vitamin D, Amitriptyline, Citalopram

angeldancer

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Re: Has anyone been symptomatic free for at least a year?
« Reply #49 on: June 02, 2015, 06:40:30 PM »
Great Lisamarie!  Changing lifestyles is good.  I don't know much about changing the lifestyle because I have done that.  I think I will try some new vitamins which takes a lot of money. 

I am happy for everyone.  It takes me awhile to get on because I don't have internet and it takes me a long time to make it to the library but I am still here.

Angeldancer
eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,

CaliSjogrenMale

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Re: Has anyone been symptomatic free for at least a year?
« Reply #50 on: June 03, 2015, 06:24:00 PM »
For what it's worth, this website says some go into remission.  Not familiar with this website though so not sure the credibility:

http://m.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/mskpages/Sjogren%27s_syndrome?open

cari

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Re: Has anyone been symptomatic free for at least a year?
« Reply #51 on: June 04, 2015, 06:05:34 AM »
For what it's worth, this website says some go into remission.  Not familiar with this website though so not sure the credibility:

http://m.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/mskpages/Sjogren%27s_syndrome?open

My rheumatologist said that some people go into remission and it doesn't reappear.  I suppose the immune system is complicated and still quite a mystery.  No one really knows why Sjogrens is triggered.   If you aren't complicated (other autoimmune or other problems) I don't see why with proper care and management it can't go into remission for a long time. :)

CaliSjogrenMale

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Re: Has anyone been symptomatic free for at least a year?
« Reply #52 on: June 04, 2015, 10:55:15 AM »
Cari, thank you for this.  This gives me hope. 
For what it's worth, this website says some go into remission.  Not familiar with this website though so not sure the credibility:

http://m.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/mskpages/Sjogren%27s_syndrome?open

My rheumatologist said that some people go into remission and it doesn't reappear.  I suppose the immune system is complicated and still quite a mystery.  No one really knows why Sjogrens is triggered.   If you aren't complicated (other autoimmune or other problems) I don't see why with proper care and management it can't go into remission for a long time. :)

angeldancer

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Re: Has anyone been symptomatic free for at least a year?
« Reply #53 on: June 07, 2015, 07:08:18 AM »
WELL THE ULTIMATE QUEST.....LIVING LIFE TO THE FULLEST WITH WHAT WE GOT!

I pray for everything to get out of my body.  I pray for being able to help others in the midst of their agony.  I pray that I survive all these dreaded conditions and live to be 92.  I desire to be a 92 year old dancer.  I desire to travel the world and show them what perseverance means when you are in so much strife.

My reality is that I have to show that Sjogrens is a debilitating disease.  I have to show that Colon cancer kills as many people as breast cancer.  I have to show that IBS and Crohns and the other stuff plaguing our bodies are real.

My desire is to be symptom free AND HELP OTHERS THROUGH THEIR STUFF!

May peace and many blessings dwell within us.

ANgeldancer
eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,