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2 DX's

Apr 13, 2016 12:44 PM

Okay, just got out of Dr's office and I have 2 DX's but one he is not to worried about yet but my one #for the second one was really high but he is not going to treat either with medication yet, until I see the Rheumatologist and leave it up to him. The two DX's are LUPUS:the one not worried about yet and the second is

Sjogren's: my #'s were 6 times the normal range.

I have to do alot of research on this, Flappys can you maybe help me here?? I think your the one who has this right? Or is it Alwayz? Anyway I am trying to find out some more information about the disease and it's treatments and drugs and side effects it has on your body (the disease) not the drug. It really has me concerned.

Apr 13, 2016 12:47 PM

Moparmom I'm not the one who has a definitive dx of Sjrogens its Flappsy. They do think I have it though but I didn't know where to start to find out (honestly I didn't and still don't really want to know). Flappsy is on Planequin and she said that it has given her pain relief. I wish you well and pray that you get the help that you need. {{{Hugs}}} 💕🙏🏻🌻

Apr 13, 2016 4:06 PM

Moparmom, I'm so sorry you have both of these. I'm on Plaquenil for Sjogrens. I had one short spell of low iron but have been fine since. My doc said Iron can get dangerously low on Plaquenil, so she runs blood work every 6 mos. I was sent for a baseline eye exam before the Plaquenil, so my eye doc can keep watch for any signs of eye damage. She said in 20 years she's never had a sjogrens patient to suffer eye damage from it.

Unfortunately my rheumy doc hasn't been very helpful about my sjogrens. Other docs have told me things to watch for in their specialities, as sjogrens can affect every organ in the body. I refuse to allow myself to worry that "it's gonna happen to me." But I am researching the rheumatology website, and the sjogrens foundation sites. Right now I am reading "The Sjogrens Syndrome Survival Guide," by Teri P Rumpf & Katherine Morland Hammitt. There are lots of helpful books on Amazon too. I want to be aware of possibilities, but not obsess & stress about it. Do you know your lab levels? Make sure your rheumy doc is walk familiar and willing to help you, and listen. After the rudeness from mine yesterday, I will be changing as soon as I find another. I'll help any way I can. My email is flappyslady81@yahoo.com. Hugs & prayers! 🙂💕🙏🌼 Check this out:
http://www.sjogrens.org

Apr 13, 2016 4:33 PM

That link above takes you to multiple places to look for info. I'm trying to locate one other about joint pains. I'll post if I find it.

Apr 13, 2016 4:43 PM

The normal range is supposed to be -0.09 and mine was +6.2 , I don't want to be obsessed either, I want to learn to know what I'm up against and see what diet's help keep the symptoms at Bay the longest so I can live life with my family and not have to worry about it. I know my doctor told me to listen to my body for any worsening symptoms if they ever present themselves. They could or they may never.

Apr 13, 2016 4:56 PM

Flappys your a Rock Star! Thank You!!

How do you cope with the fatigue? It's awful! I had been taking B-12 but was told my levels were to high and had to stop taking them, even then I was still very tired! Something has to give!

Apr 13, 2016 5:48 PM

Super heros, all here!!! And gentle hugs to all. One should only be allowed one DX per person, if I had anything to say.

Apr 13, 2016 6:07 PM

But it's better to have a DX and get some relief. I hope.
My meds haven't worked yet today. Grands don't understand why I'm not up to anything.

Apr 13, 2016 7:42 PM

Thank You Flappys, when the kids go to sleep tonight I am going to be looking at all the links and information you gave me.

Apr 13, 2016 9:04 PM

You're welcome. I find out something new every time I read up on new sites. One of these links articles States sjogrens can be the cause of my oral year infection, Candidiasis. Lucky me! Lol. 🙂💕🙏🌼

Apr 13, 2016 9:47 PM

Oh boy! Sounds like a ton of fun! NOT!

I talked to my sister tonight, she is in the middle of getting her lice to become an RN, and when she she found out I had Sjogren's she was on the phone calling me I guess they were studying that in class, anyway she said a tip..since it attacks our glands that produce tears saliva ect... Is for us to drink half our body weight in ounces like example... I weigh 240lbs so I would have to drink 120 oz of water per day or a little more. I just got to thinking Man that's alotta water lol! But I'm going to give it a try to see if it helps my dry mouth. Any.

Apr 13, 2016 9:48 PM

Licence not lice oh my word where is my brain?!

Apr 13, 2016 10:12 PM

We understand. I hope that helps. Did she say how many days to continue before you can hope for good results?

Apr 13, 2016 10:23 PM

What is something you all use to relefe the pain I've tried almost everything and nothing seams to work

Apr 14, 2016 3:07 AM

It may sound simplistic but Breathing deep into my lower stomach/ abdomen helps sometimes. Exercises designed to help relaxation like yoga if you can do it. There are posts about pain patches that work for some & I've even had some relief from the OTC salon pas for back pain.

Apr 14, 2016 6:21 AM

7 are you talking about my sisters tip with the water? If so, that tip was to try and keep us hydrated and our glands moist the best way she knows how since the Sjogren's attacks the saliva ands causing your eye's to go dry and throat to be what seems to be constantly dry. That's only half of what I've read so far.

Apr 14, 2016 6:25 AM

Yes, was wondering whether it helps with Sjogren's the same day or whether it takes time.

Apr 14, 2016 6:33 AM

It can take time, especially if you are already dehydrated.

Apr 15, 2016 3:35 PM

Looks like today is a heating pad kinda day, I overdid myself when I volunteered at the school today to help with fundraiser, whole body brom back to my feet are killing me. So it's a relaxing weekend for me and a date with a heating pad the whole weekend lol! Have a blessed weekend everyone!

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