Author Topic: remission  (Read 1417 times)

Debby

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remission
« on: April 14, 2011, 11:44:50 AM »
So how can I get Sjogrens to go into remission? I am now being tested for Lupus and was wondering if you can do anything about getting that into remission as well.Saw someone make that comment so now I am wondering....PS..my last ANA was 150..does that mean I have Lupus?

DragonflyC

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Re: remission
« Reply #1 on: April 14, 2011, 11:51:50 AM »
Sjogren's does not usually go into a full remission, though you may have times when you feel better than usual. My rheum describes Sjogren's as "stubborn."

Getting lots of rest, avoiding stress, eating well (you can find information about anti-inflamatory diets online), and exercising as best you can (yoga, walking, swimming) will all help, but there is no magic bullet.

As for an elevated ANA, it can mean lots of things. It is not a specific test for any one disease, even though some general practitioners still think of it as the lupus test. An elevated ANA means that--if you also have symptoms--you may have some sort of autoimmune condition. The higher the ANA, the more likely it is to be a connective tissue disease. Sjogren's is an AI connective tissue disease, and it can cause an elevated ANA. It is also possible, however, to have more than one AI condition. Your doctor will need to run further tests for more specific antibodies and will have to take your symptoms into account to determine what's really going on.
SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

Maria3667

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Re: remission
« Reply #2 on: April 14, 2011, 04:10:51 PM »
Hi Debby,

For me Sjogren's has gone into partial remission...

When it first became manifest in me, my eyes were really bad off... I couldn't sleep unless I put a type of moisturizer (like eye Vaseline) in them... My mouth was also really bad, in the first year alone I had about 5 root canal treatments... Over the years however, both mouth and eye problems have improved. I don't do anything special, except take Salagen tablets & of late been taking Ymea for menopause symptoms, which has further improved saliva I think.

For a while I had painful joint problems, but these almost totally subsided when I quit drinking coffee.

So maybe I'm just one of the lucky ones??  ;)

Take care!
46, F. Lyme's Disease (1998), Primary Sjogren's & hypothyroidism (2003), DES-daughter, anxiety disorder.
Seroquel, pilocarpine, natural thyroid hormones, supplements.
Dry mouth - dry eyes - dry skin - cherry hemangiomas - macules - uterine fibroids. Allergies: nickle, methylisothiazolinone

Debby

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Re: remission
« Reply #3 on: April 14, 2011, 06:12:38 PM »
Thanks for the replies! Are those meds you are taking herbal supplements? I asked my doctor about taking some to help with internal inflammation and he said none of that stuff works. I am one that believes doctors dont know everything so was curious if anyone had tried anything. I will also look into the diet. Thanks again! This web site is very helpful

Debby

DragonflyC

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Re: remission
« Reply #4 on: April 15, 2011, 08:52:18 AM »
Plaquenil is a prescription med that has been a big help in calming my aches and pain (esp. joint pain). I take Evoxac (like Salagen), anther prescription medication that increases saliva production.

I also take fish oil supplements, which help with inflammation and may help somewhat with dryness. I recently added D3 (1000 IUs from a supplement and 1000 IUs in my multivitamin), which has made a huge difference. I get fewer mouth sores and haven't had a bad flare since I started taking it. It may be a coincidence, but I think there's probably at least some connection.

For diet, I eat lots of vegetables, cook with olive oil, try not to eat too much meat or fried foods, limit my sodium (not too much--I just know that I feel it if I eat take out Chinese or something with a lot of salt and preservatives). . .it's basically a Mediterranean diet, but with some additional spices (esp. turmeric and ginger). I avoid soy because I have thyroid problems, and I avoid alfalfa sprouts because they can lead to a flare in some people (why take chances?). 
SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

valene2009

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Re: remission
« Reply #5 on: April 15, 2011, 08:55:22 AM »
i basically eat the meditterian way too... i mostly eat salmon and shrimp..occassionaly turkey.. nothing processesed except when i have a chocolate craving or ice cream craving... i limit that to 3-4 x a month tops..
 

irish

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Re: remission
« Reply #6 on: April 15, 2011, 09:44:12 AM »
The problem with all herbal medications and autoimmune disease is that there isn't all that much documented "proof" that it helps. Word of mouth is good enough for some people, but as far as improvement in bodily symptoms in relation to herbal medications goes it is up in the air.

The problem being that any of our diseases can improve at any time for who knows what reason. The fact that we have just started taking a herbal product prior to this improvement may or may not have anything to do with it. Sometimes the same is true for some of the tried and true medications also. Many people swear that the plaquenil isn't working so they quit taking it only to be hit with bad symptoms shortly afterwards. They start taking the plaquenil again and the symptoms disappear so they then know for sure the med is working.

So many things are a crap shoot. I have been on IVIG for going on 5 years and my doc was disappointed that I didn't improve rapidly. That did not surprise me. I told him I had symptoms for so many decades that I did not expect a miraculous improvement overnight. Sure enough, my improvement was slow and after the change to the 3rd product was when I started to show more improvement. Nothing dramatic but only thinking back to what I was like 5 years ago and what things I can tolerate now shows that it helps.

Another thing that can occur is that when people are hit with a disease fast and hard they may often respond more rapidly to treatment than those of us who have been chronically ill for many years. Irish ;D

Skylar

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Re: remission
« Reply #7 on: April 15, 2011, 11:15:50 AM »
So how can I get Sjogrens to go into remission? I am now being tested for Lupus and was wondering if you can do anything about getting that into remission as well.Saw someone make that comment so now I am wondering....PS..my last ANA was 150..does that mean I have Lupus?
Perhaps you read something I posted? Mine went into remission for two years. I still had some mild neuropathy left in my hands and feet but basically everything felt more normal that I could ever remember. With permission of my Rheumatologist I went off Plaquenil and with permission of my Ophthalmologist is stopped Restasis except for during heating season in winter - in one eye - he was amazed how good my eyes looked. I also put my allergies, asthma and OA etc. into remission and so far those are still in remission and I was shocked because I didn't know diet could affect these. In fact I was off all prescription medication for the last two years, except B12. My flare is very mild and probably due major surgery recently. I've been back on Plaquenil for a few weeks and I'm surprised at how effective it has been and so quickly which wasn't my experience the first time I took it.

The diet I follow is similar to an old diet that was used successfully in patients with Multiple Sclerosis by Dr. Roy Swank (I was originally Dx with MS) but updated by Dr. John McDougall who currently has an ongoing study with this diet on patients with MS at Oregon Health & Science University. I know it's hard to change your diet but I was so ill that I felt I had no choice and I'm so thankful I did. It doesn't hurt to try this diet for a few weeks to see if it works for you - but you do have to commit to following the rules without cheating constantly - so best to try it after the holidays LOL when there is less food temptation.

Debby

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Re: remission
« Reply #8 on: April 15, 2011, 12:39:38 PM »
Thanks everyone! I will definitely look into the diet part. I do believe nutrition can help with a lot of things. Have a great weekend everyone!