Author Topic: 30 years old, had Sjs since I was 20...I'm new to the forum...  (Read 2332 times)

shawnbilton

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So great to find a group of real people with real experience and understanding of what I'm going through.  Great to "meet" yall here!

I'm a guy, 30 years old, married to an amazing/understanding/beautiful registered nurse :)  ...and I've had Sjs since I was 20.

        I've been tested once when I first got it, the doctor said I had nothing.  Still not diagnosed, but I've done enough research and have enough life experience with this to know what it is.  My dentist agrees that I have this at least, and he understands.  I never had a cavity in my life until I was 20.  Now I've had probably around 15 of them, but my new dentist is amazing and so knowledgeable about the effects of sjs and he says we can manage it and save my teeth for years and years to come, so I'm thankful.  I like my smile and it's one of my favorite attributes haha! I love to smile! :)

I have dry eyes, wear contacts, keep eyedrops, chapstick, xylitol gum and mouth sprays with me at all times, and keep some in my truck. I'm the lead singer in my Christian band and youth pastor and worship leader at my church...so the dryness is a never ending problem for my vocals.  I literally drink gallons of water a day...so thirsty all the time.  I just started using the flouride toothpaste from my dentist (has 1.1% sodium floride, compared to pronamel and others with 0.15%) and it's been awesome.

I have seemingly constant mouth ulcers and sore throat issues, especially hard with singing, but it's what I love doing along with playing guitar and leading in churches with our band etc.  I was told by my new dentist about mixing liquid maalox/antacid with children's benedryl (liquid) and swishing it around for a minute or so to treat mouth sores, and it's been life changing!  Just started doing this and it has cut down my mouth sores to almost none, where I used to get one almost daily.  amazing..try it and let me know how it works for you!

I take generic salagen (pilocarpine) and it's great for a couple hours...prescription is for 4 of them daily, so it helps a lot too. 

I would absolutely love to hear from you guys, get settled in this forum and share stories, insight, and experiences with you guys...sometimes the pain is so bad in my mouth/throat/sinuses that I find myself getting either irritatable or down a bit, but I'm praying and doing everything I can against this disease...God is able and whether He heals me or leaves me with this thorn in my life, I will praise Him anyway!  He gives and takes away, and works all things (good or bad) for the good of those who love Him and are called according to His purposes...

...with all that said, I'm here for you, look forward to being a part of this forum, and hope to hear from you all soon!   

we can get through this thing together!!!

-Shawn
« Last Edit: July 11, 2012, 10:25:36 PM by shawnbilton »

Bucky

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #1 on: July 11, 2012, 10:43:12 PM »
Hi Shawn - welcome!   :)

Your dentist sounds like a keeper!  My dentist was the one who suggested I get tested for Sjogrens - and lucky me, I had it.   ::)

We are a worldwide community "mostly" made up of women - however, we do have a dozen or so men on the forum too.  We come from all walks of life, and vary in age from pre-teen up to our 80's.

There is a wealth of information found here - if there are certain topics you are interested in, if you put the word(s) in the search box to the top right of this page it will take you to previous threads about it.  Can't find what you're looking for?  My all means, just ask.   ;)

Be sure and visit our Social board where we discuss all kinds of non-Sjogrens related stuff.  We've got to keep a positive attitude and not let Sjogrens define who we are - it's WHAT we have, not WHO we are.

Again, welcome - I hope you find this site helpful to you on your Sjogrens journey.  When you're here, please remember, "we get it".   ;)  Looking forward to getting to know you.

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!)

susanep

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #2 on: July 12, 2012, 01:53:43 AM »
Shawn welcome to the board. You will find a lot of info here, and caring people. I will have to try the thing for mouth ulcers, because mine are getting so bad, and are constantly there inside of both cheeks.

God Bless
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

Gayle

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #3 on: July 12, 2012, 04:12:00 AM »
Hi Shawn,

Welcome! Your dentist solution sounds interesting, I will be buying those items today! I know you will love this site as the people here are wonderful, caring, understanding and so smart. It is a site you and your wife will enjoy! Keep reading, so much to learn! Look forward to hearing from you again!

Gayle

gurs

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #4 on: July 12, 2012, 04:23:53 AM »
Hi Shawn and welcome.

Im glad you found an option for your mouth sore issue..but cant wrap my head around the childrens benedryl. Its an antihistime, so it would
be adding dryness right? hence, more dental/mouth issues? also, the whole body effect. Even though im sure its a tiny amount, might be adding to your dryness? I guess the salagen might help with those drying effects.

Im jealous if you can wear contacts...would love to get rid of wearing glasses, but eyes just too darn dry.

You have a great attitude and im sure you will love this forum. Everyone is so nice and helpful. I learn something new everyday here!

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

mshistory

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #5 on: July 12, 2012, 05:20:39 AM »
Hi Shawn and welcome to the forum! Sounds like you have a great dentist - now if you can find a great rheumatologist, you're in great shape - ha!
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

gold55

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #6 on: July 12, 2012, 07:59:09 AM »
hey Shawn, thanks for the tip on mouth sores!  Welcome and thank you for sharing your super attitude!!  Jill
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

slccom

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #7 on: July 12, 2012, 12:26:23 PM »
Welcome, Shawn. So sorry you had to find us! Please remember that most of the things you see on this board will not happen to you. No doubt you'll come up with something new and original to share, though!

I used to wear contacts, and had to give them up on the advice of my ophthalmologist. If you aren't already seeing one, as opposed to an optometrist, find one familiar with Sjogren's immediately and ask her/him if you should stop wearing contacts. It is better to stop before you develop eye injury than afterwards.

My teeth are mostly caps, as I have had Sjogren's all my life (I'm 56 now). The capped teeth are holding up extremely well, and the others also quite well. Stay up with the dentist, and ask about Biotene toothpaste and mouthwash to help there.

I so wish I could sing! My parents used to listen to me sing along to the player piano and decided to encourage me to take up the clarinet. I took their advice and am still playing. You might want to think about taking up a wind instrument in case you reach the point where you get too dry.

Sharon

Dolly Dimples

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #8 on: July 12, 2012, 02:58:57 PM »
Hi Shaun and welcome to the best forum on the net!  You have plenty of "dry" friends here.
It saddens me that so many younger people are finding their way to these boards.  I pray your weird mouthwash can help with my mouth sores and ulcers tho' as like you I dont get just irritable, I get to high pitched screaming point at the bad times...
  Your lucky to have a great knowledgable Dentis, as so many of us find lots of people are so ignorant about SS.
     Despite all this, you will find the site quite informative and will get sympathy and advice when your at your lowest, which I hope will not be often for you.
                                                Cheers Dolly x
   
 

sjenny

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #9 on: July 12, 2012, 04:13:05 PM »
Hi Shawn:

I admire your spirit and faith in God.  Hope that you can find help here.  Have you ever tried Restasis for your eyes and/or Evoxac for your mouth and sinuses?  Those two meds worked very well for me. Also, I found Super Lysine + ointment works wonders for mouth sores.

The Evoxac mfg has a patient assistance program also (see http://www.rxassist.org/Search/Prog_Details.cfm?program_Id=234&PD_Id=2326&Drug_Id=2858&Company_Id=118&search_type=2&CFID=9049575&CFTOKEN=57483445)

I have also found relief from the dryness by avoiding wheat, dairy and coffee, which leaves a very healthy diet of meat, fruits and veggies to enjoy.

Regards,
Sue
« Last Edit: July 12, 2012, 04:14:52 PM by sjenny »

matildamillicent

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #10 on: July 12, 2012, 05:27:52 PM »
Hi Shawn, I'm in my early 20s and have had my dry eye symptoms since I was about 6 or 7, joints since I was about 8 and dry mouth since I was about 15. I think that I probably just put up with these symptoms because I didn't know much else. I did have my joints treated with steroid injections but the other symptoms just went unnoticed. I did start getting proper treatment in the past few years. I'm on Plaquenil and that's helped me feel a lot better.

I'm glad you found this website, there are heaps of supportive, educated people here who can answer your questions if you have any!

Belsey1

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #11 on: July 12, 2012, 10:09:20 PM »
I have never had any mouth sores/ulcers.....knock on wood.  I hope to remember your tip if I ever do.  Welcome to the forum.

shawnbilton

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Re: 30 years old, had Sjs since I was 20...I'm new to the forum...
« Reply #12 on: July 12, 2012, 10:44:57 PM »
Thanks so much for the warm welcome guys! 

I've read a ton on this forum already and love to learn more, so contact me anytimethalidomide this group already...and if you get bored and want to hear some of our music, I'd love you to check it out... Facebook.com, YouTube.com, reverbnation.com, etc...all followed by:  /withinthered

Thanks again and God bless!

-Shawn