remission

[jasonsmith]

Mine has started slow and gets worse over time. Been 15 years since first symptoms. I'm hoping when/if I start treatment. That it stops the progression or maybe initiates a remission.

I figure if the disease can be started at the flick of the switch from say an infection. Then maybe a heavy dose of treatment could stop it.

[lolo1979]

So I just returned from my second appt with my new rheumy, and we talked about this.  Her basic answer is that there just isn't as much known about sjogrens as RA and some of the other AI diseases, and a lot of sjogrens activity is more subjective rather than solely based on bloodwork. So it sounded to me like there just isn't enough data or published info to declare one way or another that sjogrens can go into remission.

I guess it makes sense, since we all have such different experiences with our bloodwork - what it shows, what it doesn't.  There's not even a definitive, agreed upon test to unite us.  Just symptoms. I venture to say that's the reason they can't really declare remissions. What clinical criteria would they base it on? It would be subjective.

In any event, we talked a lot about what causes it.  And again, as we all know - there's no one answer. But she did say estrogen is "definitely" involved.  I wonder if it is instigated by a sudden drop in hormones. It seems a lot of our members talk about menopause kickstarting things.  And for me, mine really kicked in immediately following a miscarriage. I miscarried at 6 weeks, and literally a month later my dry mouth and dry eye problems started overnight.  Then I got pregnant again, carried to term, and flared big time with nerve and joint issues 6 weeks after I gave birth. So i have to believe the sudden drop/change in hormones plays a role.  Still trying to pull myself out of that flare, btw.

Jill/Gold55 - I think you asked if I was taking anything for the sjogrens...I am about 3 months into plaquenil and restasis both. My rheum also gave me a prescription for methotrexate, but I'm holding off on that until I can get through some upcoming work meetings I have to travel for. I'll have to add to my signature line. what about you?

[jasonsmith]

What age does Sjogrens normally start? Maybe that could have something to do with it?

I'm male, and my first symptoms started when I was 15. I think it was started from Mono as one day I messed around with someone. And that night started my sleep problems that rapidly progressed into alot of other things that just grew worse with time. And years later I tested positive for Mono in that I had had it at some point in the past. So I guess I got the Mono when I had fooled around with that person on the day my first symptoms started.

[Scottietottie]

Hi Jason 

The youngest Sjoggie that's ever been in here (well her Mom was in) was actually 4. It seems to be able to start at any age.

Take care - Scottie 

[irish]

I don't think that menopause or estrogen "cause" it but I do think that there is some relationship to the increased symptoms.

I think that I could have had the Sjogrens when I was in high school. In my senior year I started having severe sweating spells and would get so hot that I got a abright read face. My dental cavities started early on also.

The one thing that happened for sure was that I had flares after the delivery of my children.

I also know now that I had a Sjogrens flare during my 2nd pregnancy that lasted the whole 9 months. Many organs involved and after delivery the weakness and aching started in big time. It is really hard to get a handle on this disease. Irish

[gurs]

we'll, being the fact that most women have autoimmune diseases, you would think hormones are somewhat involved. I think the hormone changes are what does it..seems that puberty, childbirth, menopause, etc seem to aggravate it..the hormonal flucuations. Sure viruses and toxins do it as well...we seem to have this faulty gene...

gursie

[Meld256]

I'm another that feels hormones must play a part in some way.  In the year after menopause was when my body went haywire. 

It makes me wonder about my daughter, who is pregnant and whose 23rd birthday is today. She is extremely tired, but hope that is because she's ending her 1st trimester.

She's had some serious dental caries happening in the last year even though she takes care of her teeth, and dry skin issues.  My hope is that none of these are related.  It has recently crossed my mind that they could be, but will continue to hope that she never has the issues that I do.

[Cheryl]

Meld,
Happy birthday to your sweet daughter!  I hope that her problems are not AI connected.  At least the fatigue can be explained by her pregnancy.
Cheryl

[jmkboyer]

It's definitely glandular-based for me.  Mine kicked in a couple months after a car accident--someone turned left in front of me and I hit her at about 45 mph.  My adrenaline went crazy for about 5 days...I was pretty sick although not injured in any way.  2 months later my life fell apart.

I've been off for a couple months but am glad to be back with you understanding people!

MB

[Meld256]

jmkboyer,

Glad you're back!  Hope you're hanging in there well.

Cheryl,
Thanks for the birthday wishes for "my girl." I'll not put too much into the AI connectedness. Maybe her sleepy-tired phase will be over soon.

Won't bore people with a birthing story too much, but I'm up early like I was that Wed. 23 years ago. I was induced, didn't think it was working and at noon everything kicked in gear.  She was born at 2:30 p.m.  WOW, that was fast! 

She's been quick and independent her whole life. From the time she could talk, her favorite words were "I want to do it" and "I do it myself!" I hope she has a child just like her, then Grandma/Grandpa can hand them back. 

[gold55]

what can one really do if it's a hormone issue....especially during pregnancy/delivery.  Even if I would have known, who knows if I would have been given the right replacement therapy to avoid SS kicking in during/after menopause!  I was glad when I lost hormones because it toned down my adult acne....little did I know that I was about to receive an even bigger "gift"

[Skylar]

Does SS ever go into remission?  I thought I read somewhere that it doesn't go into remission like RA does...is this true?  It would be nice if it could give our bodies a break for a few weeks!

Well I got mine to go into complete remission for 2.5 years and I was off all my medication.

It took a major change in my diet from the Standard American Diet to a truly healthy one. After reading The China Study by Dr. Colin Campbell (which I highly recommend everyone read)- where he discusses autoimmune disease etc. and how diet plays a role - I realized that I needed to make a change for my health. He mentioned many different doctors with similar diets and I found Dr. John McDougall's made the most sense for the way I like to eat (he has a website you can google - every time I put a link I get told I'm not allowed to put one in). He currently has research underway for his diet to put MS into remission with Oregon Health & Science University/medical school/neurology department. He also has published on RA etc. in peer reviewed medical journals. This isn't flaky, but based on science.

I was in terrible shape, about to go into a wheelchair because I couldn't walk more than a couple of feet, couldn't get up out of chairs, even my arms/muscles were inflamed - couldn't prepare meals, set a table or anything - too weak. I also had the typical litany of other diagnoses most have - fibromyalgia, OA, allergies, asthma, constant recurrent bronchitis, high blood pressure, high cholesterol etc. And OMG with in a few weeks to a few months I was feeling completely normal and off all medications except Vitamin B12. Even things I've had since a child - allergies - here I was hiking in the woods in rough terrain in the spring and fall during heavy pollen without any prescription allergy medication. No asthma, not even the daily coughing. Even my eyes got moist enough I was off Restasis except in the winter when house was dry from heat. My doctors couldn't believe the changes - they kept calling me a miracle - my PCP made changes to her diet and talks about it to her patients. Unfortunately my rheumy told me that he recognized that the changes in me were incredible and he's never seen anything like it before, but he enjoys the way he eats and he doesn't want to suggest to any of his patients to try changing their diet - Hey if you tried it for a month or two. Makes me sad knowing that a lot of our health issues are completely related to the food we eat.

Unfortunately I had to have extensive, 6 hours of aggressive surgery and it set me into a remission, back to my rheumy and back on Plaquenil and Restasis. I went from feeling completely normal to a mild flare for a couple of months. But that flare is finally going away. I'm at the point now where I'm considering staying on Plaquenil to avoid any future flare - after all I can't predict if I'm ever going to be in a terrible accident undergo incredible stress that could make me flare. Or do I go back off Plaquenil?

BTW, stuff I've suffered from since I was a child - OA, allergies, asthma etc. never came back in this flare and the only meds I'm on now is Plaquenil, Restasis and B12 and Thyroid meds.

I think everyone here should try doing this kind of diet for a month or two - serious, not cheating to see if it works for you.

[jasonsmith]

I hope that diet thing is real and that guy is serious in his research. As it looks like he sells a bunch of stuff. There are alot of good info out there. But I always find you have to watch out with regards to places that have information on health related things, but are also selling a bunch of stuff as well.

But eating healthier is always a good thing.

[Skylar]

I hope that diet thing is real and that guy is serious in his research. As it looks like he sells a bunch of stuff. There are alot of good info out there. But I always find you have to watch out with regards to places that have information on health related things, but are also selling a bunch of stuff as well.

But eating healthier is always a good thing.

I agree with you Jason - some one selling stuff always makes me put my guard up. The research is completely legit. All the information one needs to go on his diet is completely free on his website - and there is tons of information - all free. The best part is Jeff Novick's forum - Jeff is a nutritionist/registered dietician who is currently working with Whole Foods on their new Health Start Initiative. BTW, I do think his books are worth it - but you can borrow them from the library like I did. The one item I don't like is his instant soups - way too salty - he apparently sold that company a few years ago. Dr. McDougall is very passionate about diet affecting health - he recently had a project with Sacramento Food Bank & Family Service where he taught them and their clients to eat this way for free - same as his 10 day program that patients pay to attend. There are other doctors with similar programs -  Dr. Joel Fuhrmann, Dr. Dean Ornish, Dr. Essylstyne, Dr. Pritikin etc. If you have heart disease, some health plans, including medicare will cover you to attend Dr. Ornish or Dr. Pritikin's lifestyle programs to learn their diets.

[jasonsmith]

I hope that diet thing is real and that guy is serious in his research. As it looks like he sells a bunch of stuff. There are alot of good info out there. But I always find you have to watch out with regards to places that have information on health related things, but are also selling a bunch of stuff as well.

But eating healthier is always a good thing.

I agree with you Jason - some one selling stuff always makes me put my guard up. The research is completely legit. All the information one needs to go on his diet is completely free on his website - and there is tons of information - all free. The best part is Jeff Novick's forum - Jeff is a nutritionist/registered dietician who is currently working with Whole Foods on their new Health Start Initiative. BTW, I do think his books are worth it - but you can borrow them from the library like I did. The one item I don't like is his instant soups - way too salty - he apparently sold that company a few years ago. Dr. McDougall is very passionate about diet affecting health - he recently had a project with Sacramento Food Bank & Family Service where he taught them and their clients to eat this way for free - same as his 10 day program that patients pay to attend. There are other doctors with similar programs -  Dr. Joel Fuhrmann, Dr. Dean Ornish, Dr. Essylstyne, Dr. Pritikin etc. If you have heart disease, some health plans, including medicare will cover you to attend Dr. Ornish or Dr. Pritikin's lifestyle programs to learn their diets.

I looked at his diet. But it looked pretty generic to me. i.e. eat fruits and vegetables and not eat bad stuff, etc. And also his diet is vegetarian diet by not eating meat.

I did notice he had not to eat milk and yogurt. But I've always heard those were good to eat. I try to eat yogurt some since I have chronic diarrhea and it is supposed to help replenish good bacteria.

Though, on his diet he gives receipes that have alot of cooking. Some I looked at were like 4 hours to cook a meal.

I plan on eating healthier but I can't do the long cooking. I'm going to look at eating fruits and vegetables and finding easy to cook healthy meals. I wonder if things like the Weight Watchers TV dinners are healthy?

What I'd like to find are healthy easy to cook meals at the local store.