Hello to all, I seem to know a lots about everyone after studying this board so I thought I would take the plunge and introduce myself
My Sjogrens has been humming along with ups and downs for around 6 years now but is now starting to worsen lately.
Extreme fatigue, extra dry eyes, nose and sinus, and stiff and sore joints and muscles and yet my blood work shows near to normal, other than a high ESR as high as 130 a trace of protein and being RA+
I have been taking 400mg Hydroxychloroquine for around 3 years, and has worked wonderfully until the past 4 weeks, my symptoms seems to multiply by 10 overnight for no reason
My Doc started a 2 week dose of 15mg Prednisolone to see if I settle down (I am a week in and feeling full of energy with background aches and pains) and given an information sheet of Methotrexate.
I must say I was a bit daunted at the though of starting Metho until I read the posts of people who are starting on it, I am so interested in seeing your progress. It seems they were written just for me!!
Im glad Im not alone, we all have similar stories in a way
Oh and by the way I am 54 and from Victoria Australia
Thanks for listening, Leanne
Welcome.
While I am glad that you found us, I do not like it that 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.
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.
Welcome, welcome, welcome!
Glad you said Hi. Please feel free to ask lots of questions and to answer others. Knowing we are not alone really helps when nothing else will.
Nope, Leanne, through the magic of the internet, we do not have to be alone.
One thing I've learned is that my "new normal" may change from time to time, sometimes like a roller coaster, up and down.
So your doctor has some "reserves' to call upon when your normal started to change. I'm so glad about that.
And, yes, we get so much reassurance when we know first hand of others who've added drugs and had improvement.
Welcome welcome!
Hugs, Elaine
Hi petal and welcome. Sorry that you had to find us and have been struggling for 6 years or so, but glad you found the forum. You are NOT alone and you will find this group to be informative, educational and very supportive.
I cannot offer you any advice or information on methotrexate - I have not crossed that bridge that, but I do know there are many others on the forum who have will chime in and tell you about their experiences, thoughts, etc.
I have taken predisone for a flare and it helped in many ways so I am hoping you have continued symptom relief with that. I do take Plaquenil and I have found it to be helpful at times, not so helpful at others, but I think with AI that is normal. Unfortunately, I have read that if the plaquenil is not working it is time to start looking for bigger and better "guns" to help fight.
In the meantime, feel free to ask any questions or just post if you are having a difficult day/time, we are here.
Sending positive thoughts and prayers your way.
Hello and welcome, although I would rather not welcome anyone to this infamous club ;)
Welcome Petal!
Nice to meet you, Petal. You have lots of company here. So welcome!
Methotrexate had been a real life preserver for me. And because my doctor monitors my bloodwork monthly, I am doing well where that is concerned.
I seem to remember a few other members from "down under". Maybe they will pop in to say hello as well.
Hello Petal.
Nice to meet you here, despite our sjogrens.
I think your dr. will probably suggest adding another medication to take
along with your Plaquenil.
When Plaquenil alone wasn't cutting it for me, my rheumy added methotrexate.
I now just do well with Plaquenil....for some strange reason I am so much better now.
I am 55.
PS/ I have a friend that is from Kings Island (off the coast of Tasmania).
eye2dry
Heck no, not here, definitely not alone, which is a good thing.
Welcome,
Dee
Thanks to all, what a lovely welcome.
There is so much info in here and I will be calling on advice in the future, its nice to get an opinion from someone who is experiencing the disease
Sending smiles to all, Leanne
Hi Petal - welcome! :D
I'm glad you "took the plunge and introduced yourself". We don't bite . . . at least, most of us don't. LOL
Sjogren's - what an interesting disease, isn't it? Just when you think you have it all figured out one of it's cousins comes along and sidetracks us.
Three important things to remember:
1) No two people present Sjogren's the same exact way. But . . . many of us have similar stories and experiences.
2) Stress is not a Sjoggies friend. Learn to pace yourself and adapt your lifestyle, work, recreation - well, pretty much everything. ;) It's been my own personal experience and the experience of many members here that life as you once knew it is gone - now, there is this new life. By trial and error you will find what works and doesn't work for you.
3) When you come here, you are never alone. Our membership has grown by leaps and bounds through the years (which makes me sad, as more and more people are getting a firm Sjogren's dx or being tested for possible Sjogren's).
If you are looking for a specific topic, if you put that word(s) in the search box to the top right of this page, it will take you to previous threads about all kinds of topics. We not only talk about Sjogren's, but we also have fun topics, group challenges, exchange recipes, share a joke, share family news, etc.
I hope you find this site helpful to you on your Sjogren's journey.
Bucky
Welcome Petal. This disease does differ in all of use and differs in each of us at various times of year and times of life. Now that can sound daunting or scary, but the reality we will all be different in many ways over time and with the seasons. Sometimes the changes are good, sometimes not quite so much.
It is possible to have flares and even to go into a form of remission. Agree with others that stress is an issue, so too it's good to know what other triggers cause flares for you - for some of us it's certain foods, for others exercise, for others something else.
Because SjS is not yet curable, I concentrate on ensuring as much time passes as possible between flares and keeping flares as short as possible (which means good self care).
We're with you.
Hello Petal! Welcome!
Welcome, Petal. As SjoGirl wrote that we are all different. The one thing we have in common is EACH OTHER!
Judy
Perhaps all you need is a steroid boost occasionally. You may not need methotrexate yet. Don't panic!
But, if you find out later that you want to try it, don't be afraid. I took it for 4 months and did really well! My symptoms were greatly reduced. Good luck!