My first day on here...

[pickles]

I just found this site and joined yesterday.  I am 63 y.o. female with lots of strange things going on.  Though as I read the other posts I think I am very fortunate to only have what I have to complain about.  My prayers go out to those who have been suffering with this for so long.  I was diagnosed formally a year ago, after many years of arthritis and pain in my joints that no one could explain.  For a few years my blood work started coming back suspicious accompanied by migraines and then the dryness started and the dr. finally put it all together.
I am on Celebrex, Pilocarpine-5 mg, Hydroxychloroquine 200 mg, B-12, D3, Tamsulosin and HRT.  Have plugs in my eyes that have been a big help.  I wake up in the night so dry I can hardly lick my lips. 
I am experiencing a lot of muscle pain along with the joint issues and neuropathy.  Reading some of the posts last night led me to think that maybe the Plaquenil might be causing the muscle and joint pain.  Can't see my Rheum., until August.  Wondering if I should try going off it on my own or wait until I see him.  Thoughts?
Thank you to all of you who offer such insight and hope.

[Scottietottie]

Hi Pickles 

Welcome to Sjogren's world.

Have you tried using a humidifier next to your bed? It doesn't stop your mouth being dry but it maybe would stop it being quite as bad during the night.

I don't know about the Plaquenil causing joint pain. A lot of people find that it helps to alleviate it - but everyone is different and can react differently to medications. I would ask your doc before you take yourself off it. It is easy to come off though. No need to taper off it or anything. It is possible just to stop it.

Another thing that may help with the dryness a little is taking fishoil - if you can tolerate it - or flaxseed oil. It's good for the joints too. I take 3000mg of fishoil a day. My opthamologist advised me to take it.

Anyway - I hope you find the site useful.

Take care - Scottie 

[Gayle]

Hi Pickles!

Welcome! I was diagnosed late last year after 27 years of guess work and missteps. I too find I am very fortunate though am advancing with symptoms seemingly daily. I think the heat is bothering me a lot right now. I am on the Plaquenil and think I would be a lot worse without it. I missed it (kind of on purpose/ER travel) for a week and was SOOO sorry I did that. I ended up having to call my dr and ask her to call it in to another state.. So I would not stop it without talking to the Dr first. Plaquenil usually slows or stops the pains for most people.
I think I need the plugs but am very nervous about anyone near my eyes. LOL, can not even wear mascara.
There are many wonderful people here and you will learn so much! Welcome again!

Gayle

[eye2dry]

hi Pickles.

WELCOME!!!!!

How long have you been taking the Plaquenil? I had been told it can take up to 4-6 months to know if it's going to work for you. I had even read somewhere on here...someone said it could be as long a 1 year or MORE.

Plaquenil helped my joint pain and fatigue. I too had my eyes plugged...but mine are cauterized closed...for good. Really helped.

I agree with the other post on a humidifier...also make sure your floor vents that the AC comes out isn't aimed at your side of the bed.....blowing air is drying.

I agree too with the flaxseed capsules.....I believe it works for me.

I would make a call to your rheumy before I got off the Plaquenil by myself. Did your rheumy ever mention that maybe in the future he may add another drug with the Plaquenil...such as methotrexate?

take care...let us know what you decide.

eye2dry

[quietdynamics]

Hello Pickles and Welcome.

Sorry you are in distress.

Are these new meds for you? the Pilocarpine-5mg and the Hydroxychloroquine 200mg ( are those doses the sum total/day?)
Example I take Pilocarpine 5mg x4 and Hydoxy 200mg x 2 / day...and I believe that dose is fairly common.
If this is what the dr is weaning you on you could take a dose of pilocarpine at bedtime to moisten your mouth (good chance you are sleeping with your mouth open , esp if your nasal passage is dry---> wake dry in the Am. put a balm on you lips and inside nasal passage at bedtime (I use a touch virgin olive oil..absorbs quickly and I use it on all of my skin. It is not greasy and has natural antioxidant. And I have it here anyway..
And you could probably take the Hydoxy at bedtime as well. Do not stop the drugs it  need to build up within your system and then equalize for maximum effect .

:I am experiencing a lot of muscle pain along with the joint issues and neuropathy.:
I would call the Rheumy and explain what is happening , they may increase a med over the phone if necessary and call it into your pharmacy. Ask to be put on the cancellation list; if that works for you, For sleep you can try bending your legs and putting pillow under them or when laying on your side put a pillow between you knees.   

Keep a short daily diary to take with you on your apps  ==may show trigger, patterns, etc

[Joe S.]

welcome Pickles

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.

[pickles]

Thanks for the suggestions everyone.  I was able to get a cancellation appt. with my Rheum. tomorrow!  I will ask him about the muscle pain, joint pain, plaquenil, neuropathies adn everything else I can remember tomorrow.  I like this doc., but he never finishes a sentence.  His lab assistant said it is because he is so brilliant, his mouth can't keep up with his brain!  lol!  The funny thing I think he really is!

Does anyone else wake up in the morning aching so bad you feel like you never went to sleep?  I have a full time job, husband, 3 dogs and 4 beautiful grandchildren and would really like to enjoy life a little more.

Looking forward to this appountment.

[quietdynamics]

Great that you got the appt tomorrow.....wow a lot of typos in my post...lol

Post under the "discussion" forum and you will get more responses...

Let us know how you make out tomorrow...

[MissyLouWho?]

Welcome pickles!

The aching in the morning thing~ ask your doc to check you r vitamin D levels.  I had the same thing and my levels were very low.  Once my levels came up, I felt much better.  I woke up feeling like I had done a triathlon in my sleep and now needed to GO to sleep even though I was just waking up! 

Let us know how your appointment went today.  Post that on the other board so we all see it.  Hope it goes well!  Your doc sounds like a smart man, and like his brain works very fast indeed  .  Hope he's a good fit for you.

I hope you love this place as much as we do 

[Meld256]

Hi pickles, and Welcome! 

I'm also sorry to hear you're having more joint and muscle pain.  Getting into the rheumy tomorrow sounds like a good idea, and sounds as if you have that list to ask about.

You've received some great advice, so I'll just wish you a productive appt. with the doc. What others have said is good.  Fish oil can help several things. Vit.D levels can be low for many of us so good to check all the vit. levels, along with B. 

I think you'll find this a welcoming and informative place, full of friendly people.  We're glad you found us!

Please keep us posted about your appt. and take care. We look forward to hearing more from you.  Sounds like you are a busy lady!

Melinda

[Patze]

Hi Pickles,

A big welcome from me too!   I sure hope that you find this board as warm and welcoming as I have all of these years.

Take care now -

Patze

[artistangie]

Hi Pickles I'm new too, nice to meet you!

[Cricket]

Welcome Pickles!  I know you will find this board very helpful and friendly.