Author Topic: Hi! I'm new here  (Read 2985 times)

WYdry

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Hi! I'm new here
« on: December 28, 2011, 10:45:41 AM »
Hello everyone! I have several auto immune diseases but have been having symptoms of Sjogrens for a year now. Originally my rheumy thought my dry mouth was a side effect of other meds I take but then my eyes got really dry and gritty. Eye doc thinks I have Sj but no one has tested me for it. My blood work is positive for Anti-Ro A but not B. My rheumy says he can only definitively diagnose me with Sj if I have the lip biopsy. I would love some feedback to share with my doc how others were diagnosed. Thanks.

Katybarstool

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Re: Hi! I'm new here
« Reply #1 on: December 28, 2011, 11:07:53 AM »
Welcome WYdry

You have joined a good groupl. Some years ago a rheumy said I 'possibly' had Sjogren's, but apart from giving me Celecoxib for my arthritis didn't treat it. Roll on a couple of years and I was told during an eye test that my eyes were very dry. Not long after that, my dentist referred me to an oral consultant because of my sore, dry mouth. That consultant wss appalled that I wasn't being cared for by a rheumy, so she referred me back to him. He then prescribed Plaquenil, which helped a lot, and I am on annual review.

I have not had a lip biopsy, but I did have positive bloodwork. In fact, I found out that my bloodwork had been positive at least 5 years before I had major symptoms. Those labs were done by an immunologist, who was trying to get to the bottom of my allergy/lug problems.

I guess lots more people will be along with their experiences. Looking forward to getting to know you.

Kathyx

WYdry

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Re: Hi! I'm new here
« Reply #2 on: December 28, 2011, 11:17:10 AM »
Hi Kathy, Sounds familiar! I'm on Plaquenil for the discoid and Savella and Gabapentin for the fibro. I see my rheumy in Jan so I will be discussing more treatment options for all of my symptoms. He thinks most of my symptoms are fibro related but the fibro meds aren't helping the joint pain, brain fog, skin issues and the eyes and teeth. I know there is no cure but I sure would like the symptoms to be better controlled!

A66eyroad

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Re: Hi! I'm new here
« Reply #3 on: December 28, 2011, 11:34:56 AM »
Hello WYdry! Very good screen name, by the way.

Welcome to this online community of friends. Glad to see you jump right in. I love the search box at the top for general info. If you have any specific problems or comments, or if you see a fellow Sjoggie you might be able to help or support, post away!
Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.

Joe S.

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Re: Hi! I'm new here
« Reply #4 on: December 28, 2011, 12:28:33 PM »
Welcome.
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

Patze

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Re: Hi! I'm new here
« Reply #5 on: December 28, 2011, 04:11:43 PM »
Hi WYdry,

Let me also welcome you to the SJS World and family!  Please do look around the board when you have a moment or two as you'll find tons of topics and oodles of information by using the search engine located in the upper right hand side of this page. 

I won't bore you with my story of the lip biopsy. but if you do a search on it, you'll find dozens of topics concerning it.  Yeah, its a wealth of information on topics and there are topics you wouldn't even think to connect with SJS.

If you don't mind my asking, what other AI do you have?  I also have Hashimoto's and several "side" issues; seem to have more problems with the "side issues" than with the AIs these days (SJS is secondary for me).

I was diagnosed with hypothyroid first (had a multi-nodule goiter), and after a needle biopsy, the endo finally figured out that I do indeed have Hashimoto's.  I kept having symptoms that didn't correspond with hypothyroid and I was sent to see a rheumy.  The rheumy thought that I had SJS and that it would eventually show up in my blood.  Nope, still as sero negative as the day I first went to the GP complaining of a wide range of symptoms.

Good luck with your doctors and I hope that it all works out for you.

Take care of yourself -

Patze
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Bucky

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Re: Hi! I'm new here
« Reply #6 on: December 28, 2011, 05:23:51 PM »
Hi WYdry - welcome!   :D

As the others have mentioned, there is a ton of information found on this site - a person could spend hours and hours and hours here and not even skim the surface!  We have a lot of links too to other information that can be found here:  http://sjogrensworld.org/forums/index.php?topic=9459.0

It was my dentist that first mentioned Sjogren's to me as his instruments were sticking to my teeth, tongue and cheek.  He suggested I talk with my GP. The blood work I had done was positive for Sjogren's.  I have Primary Sjogren's.  I did NOT have a lip biopsy as my blood work was positive.

Are you seeing an Ophthalmologist?  I hope you are using preservative-free eye drops versus just over-the-counter drops.

I hope you find a lot of useful/helpful information here.  And in the mix, you'll find some kind, caring people who will become your new cyber friends.   :D

As you've also seen, we discuss more than just life with Sjogren's.  Our Social Board has all kinds of non-Sjogren's related topics.   ;D

Bucky





Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

Pisces24

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Re: Hi! I'm new here
« Reply #7 on: December 28, 2011, 07:03:07 PM »
You do not need a definite diagnosis with a lip biopsy!     I swear these doctors have to have SJS jump up and bite em on the nose before they will positively diagnose it. Geesh!!  >:(

You have to decide about the lip biopsy yourself. But, If I had just gone along with what all the "duh" drs I saw in the 6 YEARS I was given the runaround to get a firm diagnosis, I would have had at least 2 more "fishing expedition" surgeries.

Carolina

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Re: Hi! I'm new here
« Reply #8 on: December 31, 2011, 10:09:17 AM »
Hi WYdry,

Welcome!

You will find lots of information, helpful hints, and support here.

You should be able to get treatment for your symptoms regardless of the tests and diagnosis.

Keep us posted.

Hugs

Elaine
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Meld256

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Re: Hi! I'm new here
« Reply #9 on: December 31, 2011, 12:06:48 PM »
Hi WYdry,

Welcome to the site!   :D 

You've found the right place for great information, encouragement and support.  As said before, you can search for anything, or jump in and ask anything at all.  We have a great bunch of people who will answer and give their experiences.

 I know that some rheumatologists insist on a positive lip biopsy before a Sjogren's diagnosis, but my personal opinion is that it makes no sense.  Some of us have no blood work to prove a diagnosis, (like me) and I was diagnosed by my primary doctor on symptoms alone.

Your eye doc should be able to test your eyes for dryness. I also wonder if they've addressed dryness with you.
You deserve to be treated for your symptoms whether you have a definite diagnosis or not.

It sounds good that you're already on Plaquenil. I also take Savella for Fibro. but it seems to do nothing for the joint pain, and it doesn't seem to help eyes and mouth at all.  There are other meds to help with that; hopefully you'll have some luck talking with them.  Some of us use Exovac for saliva and Restasis drops for eyes. 
We're glad you found us. Please keep us posted.

Take care,
Melinda

susanep

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Re: Hi! I'm new here
« Reply #10 on: December 31, 2011, 07:12:26 PM »
Welcome, and you have come to a good place with wonderful people. I hope you get the answers you need soon.

susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

Cricket

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Re: Hi! I'm new here
« Reply #11 on: December 31, 2011, 08:25:34 PM »
Welcome!
Female 64 yrs. old with:~Lymphoma ~SJS~, Fibro, Neuropathy, Spinal  Stenosis, Degenerative Discs, Shingles Arthritis, Hypo-thyroid.
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