Does anyone handle sjs naturally?

[Tivia]

I was wondering if there are any people here that dont take drugs to handle sjogrens? But instead manage with otc and natural remedies. I ask because I am sick of seeing doctors all the time, and getting another script. I am dry all over no surprise there, but I am thinking what are they giving me all this stuff for? And then changing it to something else next visit, I want a natural way because I am not severe enough imo for all this crap they are piling on me 

[Christine435]

OMG, that is funny. We did post them at the same time!

[finallyadx]

I think Joe has some natural remedies that he works with...I hope he reads this - I think he may have some great insight.  There are also hollistic drs and functional medicine drs that treat sjs with "natural" remedies, whether or not they work or are affective, I do not know.  Remember, everyone reacts differently to medications and natural remedies.  My theory is to keep trying until I find something that works!!!

[Sleepy In Seattle]

You can always find somebody who will blame YOU for being sick (you eat wrong, you use bad shampoo, you're too fat, you're too thin, etc etc etc) and who will sell you something "natural" (a supplement, a pill, a diet plan, a yoga routine, etc) that will "cure" anything from warts to cancer....

My opinions (for what they're worth):
- Autoimmune diseases can kill you: don't mess with them. If you need chemical treatment, GET IT. It's not perfect, but it CAN save your life in some cases.
- Yes, there's a lot you can do "naturally" to help yourself feel better - BUT IT'S NOT A CURE. It's important to go in for regular blood tests, etc, and to have a good working relationship with your doctor.
- What helps or does not help may be very different for you than anybody else - everybody's body chemistry and disease process is different. You have to experiment and see what helps YOU.
- Don't do stupid, crazy, snake-oil crap.

Here are the things that have helped me a lot: they don't REPLACE standard treatment, but they do make it more effective for me, reduce strain on my body (from disease AND medication), and I believe they also save me from having to take MORE medication. They do not CURE the disease - they are tools to help manage it. They help ME - other things might help you. This is just my experience:

- Eating mostly an anti-inflammatory "paleo" diet gives me a lot more energy - I am gluten-free, dairy-free, and soy-free. I eat very few grains at all - mostly organic meats, veggies, and fruits. I do not follow it 100% - I slip up sometimes - but I do follow that sort of eating plan probably 98%-99% of the time.
- I have found that I do okay with goat's milk products and VERY aged cheeses (Parmesan, Romano, etc) if I don't overdo it. I also don't seem to have a problem with nightshade plants, but many people do (peppers, eggplant, tomatoes, etc).
- I lost about 25lbs once I got treatment and felt a bit better and I definitely feel better when I am on the thin side of normal. I think it's just generally less stress and inflammation in my body.
- I eat lots of pineapple (fresh, not canned), which has a natural anti-inflammatory compound called bromelain. It seems to help with joint pain.
- I do not eat hardly any processed food - too much unknown junk in it.
- I take a variety of supplements - various ones for various reasons - but I check them all with my doctor and make sure he knows I am on them. The ones that seem to help the most are vitamin D, CoQ10, Zyflammend, turmeric, and fish oil. I also take prescription strength folic acid to counteract side effects of methotrexate.
- I get lots of sleep, and daily exercise. I try not to overdo it - when I fail, I pay the price.
- I don't drink any alcohol (well, the occasional sip or two or wine) because things are already hard enough on my poor liver. I miss it like crazy - I was never a heavy drinker but I DO like a glass of red with dinner. It sucks!
- I don't eat much sugar at all - but I do have a little dark chocolate most days.
- I know it's probably not great for me but I drink coffee almost every day - it gives me energy and dangit, I gotta have SOME vices! 

I hope some of that helps. Basically, I think you just have to use caution, good sense, and know that YOUR body is COMPLETELY UNIQUE. Listen to it, and it will guide you. Get a doctor you can trust and work with, then DO IT. Remember there is no CURE (yet), only coping. And don't ever lose hope! 

[Debbie B]

Oh my goodness...I do many of the same things as the last poster...sleepyinseattle. The diet for me has been key. No wheat and no nightshades and no junk. I also indulge ina  bot of dark chocolate every day too. Evening Primrose oil has been the latest thing that has helped my eyes. I dont take any medication at all just fish oil vitamins sea buckthorn oil. Bioidentical progesterone has also helped.

[jazzlover]

I try to eat very much like "Seattle" .. I do believe it helps. I found out I have SJS about 5 yrs ago.. I'm sure I've had it longer than that. I've been GF for about 6-7 yrs and dairy free for two. I now eat as much organic as possible and as much green stuff as I can handle!

I don't drink any sodas (haven't in years), no junk food, no processed food, no sugar. I've been very strict with this for about 6 months and I'm doing better as far as the dryness and the pain. This winter was MUCH better than last winter, that is for sure!!

I've never taken any of the SJS drugs. I tried taking plaquenil about 12 yrs ago for Lyme & Co and my stomach could not handle it... so I'm not going there. I do have saliva, thank goodness, and my dry eyes are sort of tolerable. It depends upon the day and what other meds I've had to take for this or that. I've found that most meds just make the dryness worse.

[SjoGirl]

I made similar diet changes to those of Seattle, very hard, but worthwhile. I also tried supplements, but a year into those changes I did not find the natural route sufficient to manage the fatigue, aches, brain fog, and other issues.

I am working my way off of a PPI and a happy to be doing so as even my PCP worries about the side effects of long term use. However, I am better on plaquenil than I was without it and feel good more days than not. Without it I am not sure I would be able to continue to work and I'm too young to quit. I also expect that without the meds I might develop even more AIs than the three I already have now.

FYI, even a holistic practictioner I used to visit didn't question me taking medication. Being a person who didn't even like to take an asprin before all this I understand your frustration and concern. In the end, the decision whether or not to take medications is a personal one that only you can make. Good luck as you make it.

[Joe S.]

This is from my Sjogren's welcome.

I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

The tonations for mumps help especially when testosterone tonation is added. There are tones for most symptoms. You can find some of them at www.chakraforce.com listen to each tone for 3 to 5 minutes in sequence twice per day.

[cargillwitch]

Yes I do!
I have tried salagen but I really am just not  good at prescription meds( funny coming from a nurse I know!)

I have played with my diet- I was a 27 year vegetarian when I was diagnosed and have reintroduced organic eggs and salmon. I am grain free, dairy free and soy free. Living on a farm I am able to source organic vegetables easily and they comprise a large percentage of my diet.

I have taken many different herbs, supplements etc. to deal with symptoms . I give them a trial run of a several months. I grow and tincture many of my own-. Red clover.,valerian root, lemon balm, nettle( good for anemia).

I find many symptoms wax and wane on their own, whether I really "treat" them or not. I have noted my own hormonal cycle greatly impacts periods of excelerated sympyoms ( ovulation through to menstruation the worst time).

I modify my work schedule, nap when I can and make sure I hike/walk/run a minimum of an hour a day, usually longer. No matter how stiff or tired I am! It probably is the most consistanly effective strategy I employ for fatigue, insomnia, joint and muscle pain.

I have many, many family members with autoimmune diseases and have seen the long term effects of often prescribed meds actually cause their deaths- not the underlying disease. It makes me extremely wary of  using medications long term- at 44, I am hoping to utilize lifestyle /dietary modifications for as long as possible !

[Sleepy In Seattle]

Here's the flip side of this issue - and in a way, I think it shows how effective natural methods are - but also how dangerous they can be.

I have no proof of this, it's just my experience.

About 8 years ago when my symptoms got really bad, and my doctor wasn't really being helpful, I tried all sorts of natural remedies - some on my own, and some on the advice of naturopaths. Back then, for whatever reason, everybody wanted to BOOST my immune system with natural herbs, mushrooms, etc.

Well, we boosted it - and now I have autoimmune disease.

Of course, I probably would have developed Lupus/Sjs/etc anyway, but I am pretty convinced that taking all those natural immune-boosters probably helped trigger them and made them worse, because I got sicker and sicker on those herbs. They were effective - but they were the OPPOSITE of what I needed, and their use was based on a whole set of false assumptions about what was happening in my body.

So I think that having the advice and understanding that "regular" medicine gives us is critical - all the blood tests and whatnot - even if we use it to guide us into "natural" treatments. Often the "natural" route goes a bit light on testing and scientific understanding. Maybe a combination of the two, where they work together to support each other, is the best approach.

Just my personal experience and opinion.

[Cindy]

Sleepy in Seattle I agree with you. I think a combination of the 2 work best. I take plaquenil, I started with 200 a day now Im on 300 a day. This is my first full year since being diagnosed. I take supplements that helps me. I dont want to be without supplements or plaquenil. I take plaquenil because of my joint pain and because even though some say it helps to slow down progression and some say theres no proof, I really want to believe it helps to slow progression.

[engy]

I use a combination also.

My doctor is a D.O. but very holistic. She has no problem with plaquenil for the treatment of Sjogrens.

I think it's important to find doctors that will listen and try things you want. It is not easy, I understand going from doctor to doctor. My journey has been long likecothers with numerous doctors.

Good luck & I think the previous posts were very thorough!!

[Styx]

I would advise against this.

Styx

[LEANY]

It seems every time I have a flare I learn to live with a new pain or symptom and it goes away after time and then I am prepared for it the next time it hits. I agree with Sleepy in Seattle. I have found the leaner I am the better I feel. I avoid all processed foods, eat small meals but allow myself a bit of chocolate every day. And yes I must have a cup of coffee, I know i shouldn't but I must. I also think exercise is the best, yes it can hurt a little but the benefit is terrific. I am afraid of drugs because I am so drug intolerant so have not gone the plaquenil route as of yet. I have found stress is a great factor in when I have the worst flares so if you can keep your stress level low or not at all it helps greatly.I have been lucky this year for I retired with an early out and my stress has decreased immensely.

[Tivia]

I take the bare minimum of drugs to get by, she said I could take plaq if I wanted now. But really I feel she is just tossing it out there, that are she is not telling me everything. She is the hardest doctor to talk to, I cant get straight answers. Next time I am going to come right out and say..stop beating around the bush, how advanced is it, what all is involved. Because her sending me to nephrologists neurologist hemotologists without saying why is confusing