View Full Version : Hi, New here...
04-16-2012, 01:22 PM
I have been suffering with dry eyes, mouth and vagina for probably 2 years. I mentioned it to several doctors and no one seemed to be concerned or have any advice for me....I guess they all thought it was perimenopause. I wondered why I had SO many dental problems lately, and now it is making sense.
Recently, I have been noticing that I had a scratched up look to my cheeks and sometimes the bridge of my nose would appear more red. I started to suspect Lupus, although I feel generally well overall with the exception of the dryness.
I got my blood work back today and it was 1:160 and I am being referred to a rheumatologist. I assume it could be Sjogrens and not Lupus...or maybe I have both. I do have Hashimoto's thyroiditis, the autoimmune form and am currently having a slight flareup with that, so maybe everything is connected.
If you have any suggestions for me or can calm me down (I am a wreck right now, because I also found out my uterus is like 3 times it's normal size and I need testing done on that in a couple of days. Curse you, 40's!!!
04-16-2012, 04:59 PM
As I'm learning, these autoimmune diseases are tricky business and can often overlap. It sounds like you have some good first steps in place, with a referral to a rheumatologist. I have no medical advise I can give you, but want to extend a warm welcome.
There is lots of information on this site. Poke around and hopefully you will find some of it helpful.
Take a deep breath. I know it's hard to stay calm when you are worried about your health but you are on the right track and stress can often make matters worse.
And yes, Curse you 40's !
04-16-2012, 05:42 PM
I have Lupus and Sjogrens - (and some other stuff) - so yeah it's not uncommon for them to overlap. The good news is that the treatment is pretty much the same for both, so that's kinda convenient...Plaquenil has helped me a TON, though it took 6 months+ to really feel it. I had a few mild side effects at first, but by 6-8 weeks I was over them. Of course everybody is different, but it works really well for me.
Seems like a lot of dealing with Sjogren's is using something like Plaqunil to try and arrest the disease process, and then learning to deal with the symptoms. There are a lot of helpful products out there - "Biotene" makes a bunch of oral health products that are wonderful for dry mouth, and there are some gels and sprays for dry nose. Xylitol lozenges help me sleep at night because they keep my mouth from drying out and waking me up (at one point a couple years ago, I was waking up as many as 20 times a night to sip water!). And of course they make lots of good products for more...um..."personal" dryness issues.
There are some good Sjogren's forums out there, too...but I have not found one that is as well-moderated as this one. "Sjogrens World Forums" is pretty good...though there are definitely some folks who are just there to sell stuff or be weird. There are also some very knowledgable, kind, and helpful people - you just have to weed through responses a little more skeptically than you do here. Or at least that's my experience.
I hope your docs can help you find the answers....but I am here to tell you that Lupus, Sjogren's and even more stuff on top of those does not have to be horrific. For me, Plaquenil and a few other products knocked them all back pretty well and I feel better than I have for years - but the first step is figuring out what your body is doing. Try not to worry too much about it - the diagnoses are just road signs to treatment.
04-19-2012, 09:23 AM
You have been given some excellent information and I cannot add anything better. I just wanted to make sure that I welcomed you to our family. I do hope that you start to feel better soon and get some answers, we are here to help you as much as we can.
Peace and Blessings
04-19-2012, 08:12 PM
a also wanted to stop by and say hi.
04-21-2012, 07:21 AM
I could not have have said it better, curse you 40's!!! I just wanted to let you know that I can relate to your fear dispite constantly trying to remind myself not to worry about things I can not change! Keep hope and faith that this is just a moment in your life and that the next moment will be better. Hugs! :-)
04-21-2012, 09:45 PM
Welcome to WHL. Sleepy said it all when it comes to Sjogren's. I also have an overlap of AI diseases - Lupus, Sjogren's, RA, Psoriatic Arthritis, Raynaud's and Meniere's and Spasmodic Dysphonia (with possible Spastic Paraplegia) thrown in.
I would suggest that you ask for further testing for SJS, as your symptoms really match it. You might also see an ophthalmologist and ask him to do a Schirmer's test for eye dryness. Mine seems to know more about SJS than my rheumy does. I take Pilocarpine to help my body make more saliva, and it has really helped me.
LOL - my symptoms started when I was in my 40s, too. It's a real pain when docs just try to blame it all on menopause.
04-27-2012, 04:03 AM
hi lisa welcome to whl family look forward to getting to know i to am in my forties and are also have trouble with similar womans problems i have sle and thyroid disease. hugs kim