Newbie...hello

[sceezix]

Hi, My name is Stacey; I am 7 mo. into my formal diagnoses of Sjogrens.  I knew years ago something was wrong because of several Iritis bouts beginning at the age of 19 and more recently when my legs ached, deep down inside my bones, from hips to toes.  I have chosen to fight this AI with nutrition as long as I can and have since removed dairy, eggs, meat, sugar and anything processed from my diet.  I am a raw vegan and have been relatively pain free for the last month. My Rheumy isn't too happy with me; he would prefer I take MTX.  I made a deal with myself that when and if the pain and symptoms became too much, I would begin MTX--for now, I'm feeling good with organic nutrition and supplements.

So far my symptoms have been limited to dry eyes and arthritic pain in my tail bone, legs and heels and rare bouts with Iritis in my left eye.  Keeping the stress at bay seems to help tremendously. 

Although I am not taking meds, I would like more information about MTX and success anyone has had or any long term side effects, if any.  Also, if anyone has alternative methods that have been helpful.

Looking forward to learning from you all....

[Gayle]

Hi Sceezix,

I know nothing about MTX but just wanted to welcome you to the boards. You will find amazing people on here, loving, smart, friendly and understanding. Glad your diet is helping so much. I am trying to go vegan... it is hard but I am working on it.
Have a great day!
Gayle

[Winnie]

Hi!  I can't say much on MTX but did your doctor suggest plaquenil at all?  You can search both meds at the top and find a realm of information on them.  I take plaquenil and I believe it has helped my fatigue and joint pain.  I have become allergic/intolerant to eggs, dairy and peanuts.  I have something going on with gluten too.  So my diet resembles yours.  I hope you find our site informative and supportive.  It has been a blessing to me.

Winnie

[Joe S.]

I am not able to take MTX.
While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren's – 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. Don't 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 Sjogren's 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 S's of Sjogrens.

[susanep]

Welcome Stacey,

I am glad you found us, but as Joe said, wish you didn't have the need to. I have had the deep pain you speak of, and I am on many meds, but I have been diagnosed a while now, and things have progressed. I also have lupus, and fibromyalgia, etc.so it gets a bit complicated.

You might as suggested ask about plaquenil. I could not keep my arms raised long enough to wash my hair or at one point even brush my hair until on was on this when at my worse point before being diagnosed.

You might also jot down the things you notice from day to day, and that way you can jot down any new issues that turn up, but I hope they don't.

There is a lot of good info on this board, along with many wonderful, caring people who just want to share, and help.

susanep

[iraisin]

Hi Stacey, welcome. Sorry you're having to live with this, I hope it stays mild for you.

I pretty much did the same thing you did. It does help. But I'll explain what happened to me. I am Italian, so going vegan was REALLY hard. Especially since my dad makes lasagna with his own "special recipe" for both the sauce and the sausage that goes in it. mmmm, mmmm.

Anyway, I made a LOT of changes, worked hard at it, felt a lot better - then boom, I got hit with a flare. I felt that since I was trying so hard and making so many sacrifices I had worked this beast out and it would all be smooth sailing as long as I had stayed on the straight and narrow. Well, the flare really upset me. I got very frustrated about it.

I'm staying good with the diet and life changes, but still flare regardless. So just be prepared, the changes help, but there is no cure for this and you will still go through the "slumps" of sjogren's. Don't believe your hopes that the changes are going to "cure" you of the path Sjogren's has planned for you.

Good news!  You will feel better between the flares.

Some of us have our supplements listed at the bottom of our individual posts. Capture some of them and do some research on what they do and bounce them  off of your symptoms and see if you think they will help you.

Good luck!

[Autumn]

Hi Stacie
I recently received my official diagnosis. I've been reading a lot and found so many helpful people responded to my first post, with very good advice. I'm so early into medication, I don't think I can offer much advice there. From what I see posted, I believe I am fortunate to be the mild-moderate category. I'm hoping to stay there, hope you can too.

I discovered the anti-inflammatory food pyramid and giving it a try. Lots of fruit and vegetables, you might want to take a look.  Good luck with your plan

[Sleepy In Seattle]

Hello and welcome!

I was Dx'd with Sjogren's and Lupus last fall. I have gone GF and cow-product-free (no beef no cow dairy), and never did eat much in the way of sugar and processed foods. I don't avoid them totally, but I am picky...the processed foods I eat are the "organic, guilt-free, preservative-free" versions. I do eat goat dairy and eggs, and organic chicken and fish (mostly wild-caught salmon). We go to restaurants a couple times a week, so no guarantees on those, but we try to go to good ones and order carefully.

In other words - I do all this stuff with moderation.

I take Zyflammend and a bunch of other supplements - antioxidants, vitamin D, B-complex, Dr. Weil's Multi, CoQ10, probiotics, fish oil, DHEA (low dose), Magnesium Glycinate, niacin, vitamin C...um, I think that's it. Oh, and Sam-E (it seems to help keep me upbeat). Most of those are on a doctor's advice, or at least with his approval. I feel really strongly that I want a good partnership with my doc, so I don't do stuff without telling him.

For medications, I take a daily aspirin because I also have a clotting disorder called APS. I also take Plaquenil (400mg) and that has never caused me any trouble. It did make me feel quite a bit better after about 5 months - the fatigue lifted, and the joint pains lessened quite a bit. Unfortunately, the diseases fought back and attacked my right ear - I am now mostly deaf over there.

Following the sudden deafness, my Rheum put me on a high dose of Prednisone for a month (OMG - it was WONDERFUL - I felt SOOOOO good!!!! Which, sadly, is an indication that the diseases were really dragging me down and confirmed the bloodwork and symptoms which indicated I had them in the first place). Of course if you take steroids long enough they'll kill you, so I was weaned off that and onto Methotrexate. Obviously the diet and supplements and Plaquenil were not enough on their own, and the diseases continued to attack my body....we didn't want them to progress to other organs or for me to lose my other ear, so that was really the only reasonable course of action; to start on Mtx.

I don't love the Mtx, but it's not awful. I seem to have a cast-iron stomach, because both Plaquenil and Mtx make lots of people sick - not me. I always take them with a meal, and I take a daily dose-and-a-half of probiotics - I think it helps a lot. And if you end up taking Mtx, you should take prescription folic acid as well - it helps a lot with the side effects. Just this week I went from taking it once a week (25mg) to twice a week (12.5mg each dose) to hopefully make me feel less icky in the 24 hours following the dose. It seems to work pretty well...I take it before bed and feel okay the next morning. It just made me kinda achy and sleepy for a while.

Anyway - I sure didn't ever intend to take so many drugs, but if the choice is taking them or letting these diseases eat me alive, I will take them - and hope something better comes along. And in the meantime, I eat well, take my supplements, and try to be as healthy as I can while still enjoying life and not living like a monk.

I hope that helps....good luck to you and let us know how you're progressing through figuring all this out! We are here to help and to listen.

[eyeamdry]

I have been taking MTX and Plaquenil for about 5 years, since my diagnosis for SJS and fibromyalgia.  I also take other meds.  When I was diagnosed, I was very sick and could only lay on my stomach, my back, thigh muscles and everything hurt so much. 

I was told the medicines would take months to work so I didn't expect much.  You take MTX once a week.  The dr determines the dose for you and you take this # of pills once a week.  I took my first dose and didn't have anything that made me take notice about the drug.  Then on day 6, I began to think of taking the next dose the following day.  I thought for a minute, "that I felt some better."  It was enough better than I did notice it.  I've been taking it since.  The great part to me was that I noticed it right away.  I can't say now what it helps and what it doesn't.  I know it helps my joint pain and possibly some muscle pain. 

I do not believe MTX or Plaquenil does anything for my dryness (considerable), but others on the forum think it helps them.  We are all very different.  Lucy

[sceezix]

Thanks everyone!!! I didn't have my notifications turned on, so I just realized you all replied.  I feel so welcome =) 

I can't take Plaquinil because it affects your eyes and I have arthritis in my eyes (Iritis); MTX is supposed to help all my symptoms.  However, I don't want to take it if I can avoid it.  Right now, I am feeling great...so time will tell.  My diet seems to be helping tremendously and low stress (right now) helps.  I have incorporated meditation, yoga, breathing exercises into my regimen to keep my stress in check.  Also, I have started back at the gym after 6 months of not being able to walk very well, let alone work out. I find that even when I don't feel like working out, if I do, I feel so much better and have less pain in the end. 

Peace and veggies,

Stacey~~