Author Topic: New to sjogren's - Flare & blurry vision?  (Read 1986 times)

Yvette

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New to sjogren's - Flare & blurry vision?
« on: August 29, 2013, 01:09:26 PM »
Hi,
I was recenlty diagnosed March 28, 2013. I am taking plaquenil 200 mgs/2 day, meloxicam 15 mgs, methotrexate 20 mgs/1x/week, and folic acid.
Since diagnosis, I have just been feeling better and better. Aug 16th, I went to Sea World and walked around an entire day. Still was feeling good, only slight pain in feet and nagging hip.
Last Friday and Saturday, I was packing my entire apartment. Monday, I moved to another apartment. Granted, I had movers on Monday. I woke up Tuesday - today feeling like absolute crap. My hands and feet are swollen and hurt. My back muscles and spine are hurting/aching/inflamed. Does anyone else have back issues due to Sjogren's?  Today my vision is so blurry, I can hardly focus my eyes!!!!!
My rheumatologist is on maternity leave, and the NP filling in for her said the only thing she can do is give me prednisone for 2 weeks.
1. Has anyone had this problem after a move or long physical activity?
2. Anyone had the terrible blurry vision increase?
3. Prednisone??? anyone???

The next step she said is to go on something for RA if the methotrexate @ 20 mgs doesn't completely work.
Oh ya, and my meibomian eye glands are so clogged nothing works. Dry eye is my worst nightmare.

Velcro

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Re: New to sjogren's - Flare & blurry vision?
« Reply #1 on: August 29, 2013, 01:52:51 PM »
Welcome Yvette.  Yes, when I overdo it, it sends me into a flare.  Different flares bring different symptoms but mostly I start running low grade fevers, muscles hurt, headache, extra fatigue and just feel horrible.  Short round (2 weeks) of high dose prednisone and tapering back off is what my Doctors do to treat the flare.  I haven't had the blurry vision.

finallyadx

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Re: New to sjogren's - Flare & blurry vision?
« Reply #2 on: August 29, 2013, 02:32:42 PM »
Welcome Yvette - so sorry you received the diagnosis of sjogrens, but glad you found the board.  I was diagnosed in January of this year. 

You will find the members on this board helpful and supportive.

Unfortunately when I overdo, I get a "flare" or start feeling miserable - pain in muscles and joints, headaches, spleen pain, even chest pain, gi distress, etc.  You are fortunate to have found someone who is willing to do plaquenil and methotrexate to begin with.  My rheumy would only start me on plaquenil first (along with a prednisone dose for about three months when first diagnosed).

Prednisone can be your "friend" when you are in a bad flare - you have to be careful with it, but I am sure your NP or covering MD will discuss pros and cons and seriousness of the prednisone.

You will find, in time, what you can do and what you cannot do and how much you can and cannot do and what can possibly throw you into a flare.  There are so many different things that can affect us, overdoing, too much sun, too much heat, etc.

I get blurry vision when I am in a flare, but I am not certain it is "common". 

Hope you can find some relief and start to feel better soon.

Sending positive thoughts and prayers your way.  Keep us posted.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

Joe S.

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Re: New to sjogren's - Flare & blurry vision?
« Reply #3 on: August 29, 2013, 03:18:03 PM »
Yvette, Welcome. There are a lot of things that you can do to help manage your pain and flairs. Here is my general welcome with a few tips. If the vision problems persist more than one day, see a doctor.

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.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism