New here! Any other treatment for Primary Sjs (other than Plaquenil)

[SjogrensSucks]

Hello fellow Sjogren's sufferers!

I began having symptoms at 34 during my pregnancy and was diagnosed at 38.  I am 41 now.  I have the primary version.  My life is NOTHING like it used to be.  I feel like I can do maybe about 20% of what I used to do.  I have gained about 35 lbs. in the past 1 1/2 years and feel horrible about how I look.  I have always been thin and used to be quite the fashionista.  Now it's jeans and t-shirts.  I rarely have any energy left at the end of the day except to throw in a load of wash or unload the dishwasher before I go to bed. 

I am in such a bad cycle of feeling fatigued and achey so I don't exercise which makes me feel like I have even less energy which makes me even heavier, etc etc.

I am a single mom with a beautiful Kindergartner at home.  I share custody with her Narcissistic father who continues to make my life miserable and expensive due to legal costs. 

I take Plaquenil and haven't noticed any improvements since I started 6 months ago.  Has anyone had any other treatments that are helpful with the fatigue?  I can deal with the dryness but the fatigue has totally decreased my quality of life.  Also, I work in a school and it seems like I get sick at the drop of a hat.  I don't think I was healthy for more than a week between Thanksgiving and Valentine's Day.

Well it's good to get this stuff off my chest.  Everyday I wish that I didn't have Sjogren's.  It sucks!

[A66eyroad]

Hi and welcome to this wonderful group of people! I'm glad you found us, but sorry you had to look.

A favorite feature in this forum is the search box in the upper right-hand corner. You can plug in any kind of term and get a wealth of information! Of course, you're always welcome to ask anything. No question is too big or too small! 

It won't be long before you'll see a question someone else has posted and you'll be able to reach out and help someone yourself. That's another great thing about this forum -- always someone to help you, and always someone you can help. Since we're from all over the globe, there's almost always someone logged in.

By other treatments, do you mean medicines? Or just palliative stuff? 

Are you taking any medications besides Plaquenil? Some of us post our dx's and meds in our signature. (You can click on your profile --- the little person on the left-hand side of your posting under your screen name -- and add stuff there.) I love my Plaquenil, and my cauterized tear ducts have made my life so much better. Not to mention eyeliner tattoos! 

Other ways I make myself more comfortable is using my heating pad on my feet -- which are always freezing -- whenever I can. I've also stopped wearing makeup, brush my teeth about a zillion times a day (I only use Biotene), and keep a tube of Nivea "A Kiss of Smoothness" and a bottle of water with me no matter what! I use Refresh Plus single-use eyedrops -- because they don't have preservatives.

For my forgetfulness, I keep lists. Some of them are quite elaborate, but others are pretty simple. For example, on one of the cards in my Rolodex on my desk here at work I keep a list of words that I often forget (Preservative is one of them, also Benedryl and Neosporin. Weird, I know, but there it is. ) and another card for people's names that I often forget. I can just pull my Rolodex toward me when they stop by my desk and I can flip to "N" for "Names." That way I remember who they are and look like I'm just working while I'm chatting with them.

My life is very different from the one I'd envisioned even just five years ago. But my mother would say, "That was then and this is now." We have to embrace our new normal. It's tough, but it's do-able. Others on this board have likened being dx'ed with SJS with going through the Elisabeth Kubler-Ross stages of grief for death and dying. For me, some days are just easier than others. Some are tougher.

I'm sorry you're having to go through this, and I'm sorry you've got to also deal with a bad relationship with your ex. Chronic fatigue and pain coupled with the frustration of dealing with someone less than pleasant can't be making you feel any better. Hopefully, you can share all your problems here on the forum and we'll help to lift your spirits! 

[Joe S.]

Welcome SjogrensSucks.

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.

The tones are free and can help with the symptoms.

[Scottietottie]

Hi SjogrensSucks 

Welcome to Sjogrensworld!

How much Plaquenil are you on? I was started off on 200mg a day and it didn't do anything but 400mg a day did.

The other thing is - have you had your thyroid trsted recently? Hypothyroid can also cause extreme fatigue, weight gain and depression.

I hope you find the site useful.

Take care - Scottie 

[SjogrensSucks]

Thank you for the kind words and encouragement.  I take 200 mg per day but maybe I can increase it.  Unfortunately I don't have medical insurance right now.  I have tried investigating alternative therapies such as changes in diets and supplements and I didn't have any success.  All of those alternatives take so much time to research and money to try.  Maybe this isn't the right time in my life.  I will keep checking in with the forums to keep up with you all!

[Meld256]

Hi there, and allow me to say "Welcome!" 

As said, I'm also sorry that you're dealing with these health challenges, but you've come to a good place.  Thre are many friendly, helpful people here and loads of information.

It can be difficult being a single, working parent without having health issues. I hope that the information, support and encouragement you'll receive here will help you. 

We look forward to hearing more from you.
Take care,
Melinda

[Sooki]

Welcome to the group.  Sorry you're feeling so bad.  Having a kindergartener must make it hard to stay away from germs. 

There are many more things a doctor can prescribe beside plaquenil; a good rheumatologist is a treasure.  Many of us, but not all, find relief from plaquenil even though we may add more meds to it over time.  You might try increasing it to 400 per day.  That's what I take.

Many of us have thyroid issues.  The accepted TSH range is far wider than we need.  I feel best when my TSH is around 1.0.  (Higher TSH means thyroid levels too low)  Without enough thyroid hormones, I get a specific kind of fatigue.  I'm okay sitting down, but getting up to do something takes great effort.  Thyroid meds are cheap but it does require repeated blood tests at 6 week intervals to get the level right.

Much improvement though can come through figuring out how to improve things on your own.  You'll find ways to alleviate some of your symptoms.  If you search for specific symptoms here, you'll find lots of suggestions.  Everyone is different and what works for one person may not work for another.

What has given me the most relief over the years has been dietary changes.  Going gluten and dairy free took away my joint pains for years until they got worse and I had to start adding meds.  They come back though, when I eat any gluten at all.  (This wouldn't be true for everyone!)  Sjorgrens.org has a link to an anti-inflammatory diet as well.  Going gluten and dairy free doesn't require any medical expense.  You can just do it for a few weeks and see you feel.  It's important during the test to avoid all wheat, rye, and barley (read labels to find the hidden wheat in licorice, malted flavorings, and soy sauce, etc.). Potatoes and rice are good substitutes. Tests aren't required and often give false negatives anyway.  I also eat a lot of veggies and fruits - good patterns for your kid to start too.

I take the Fab Five supplements that Joe S. recommended and find that they make a huge difference in fatigue and mental alertness.  I'm pretty small and have to cut the doses way down from what Joe takes (I take the lowest strength I can find and then sometimes open capsules and dump some out).  The two most important to me are the Alpha Lipoic Acid and Acetyl-L-carnitine.

Vitamin D3 helped hugely with being able to make it through the winters.  My outlook improved greatly when my levels came up.  Vitamin B-12 helps a lot of people as well.

Don;t lose heart.  Hopefully you can find improvement from the way you feel now.  It takes patience and experimentation.  And it takes being kind to yourself when you're angry and frustrated.