Author Topic: Newly Diagnosed and only 20 years old  (Read 3256 times)

monica7590

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Newly Diagnosed and only 20 years old
« on: March 21, 2011, 08:32:47 AM »
Hi my name is Monica and I am 20 years old. I have had dry eyes since high school and last year became contact lens intolerant. My eye doctors put plugs in my tear ducts and told me to get lasik surgery since I am self concious wearing glasses. After the surgery my eyes were so dry I spent a month in bed, I could barely keep them open for most of the day and had to constantly put refresh pm ointment in my eyes day and night. After they got a little better and I was able to move around I got blood work done because I felt my mouth was a little dry and my mom has thyroid problems. My blood work came out positive for ss A and ss B and rhuematoid factor. My rheumatologist told me I am doing everything I can for my eyes between the steroid eye drops and restasis. Last week I developed a severly dry mouth after being in the cold. I have felt my mouth getting dryer lately but all being outside in the cold I found that it was so dry I couldn't get words out. My doctor gave me prednisone to treat it and because I have not being feeling better she increased the dose. Does prednisone help your dry mouth? Do you think this is a flare or have I permanent developed a very dry mouth? I am so scared because I am so young I cannot imagine whats to come and for everyone else out there experiencing dry mouth I have so much sympathy I never realized how debilitating it can be. I am unable to get my mind of it because its so uncomfortable I constantly have to use gum water or biotene spray which only gives relief for a minute.  Ive been crying for days I'm scared I will feel like this forever.

Dry1000

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Re: Newly Diagnosed and only 20 years old
« Reply #1 on: March 21, 2011, 08:58:51 AM »
Monica

              Hi, sorry to hear about your mouth and eye issues. I am 31 years old and was experiencing debilitating symptoms due to the dry mouth as well, after 6 months of plaquinel things got much better and have continued to improve over the past 2 years. Talk to your rheumy about plaquinel.Good Luck.

Bucky

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Re: Newly Diagnosed and only 20 years old
« Reply #2 on: March 21, 2011, 09:33:52 AM »
Hi Monica - welcome.

The dryness in your mouth is a royal pain, isn't it?  Mine seem to come out of the blue and I know exactly the day and hour when mine hit - felt like someone had stuffed a wad of cotton in my mouth and I was suppose to talk?!?  Some of the others take different products for their dry mouth - hopefully, some will stop by and give you some suggestions.  Myself, I just always have water with me which helps, but isn't always convenient.  I also pop Altoids like crazy - something to help with moisture.

We have some other young adults like yourself here on the forum - hoping they'll stop in and introduce themselves.

A suggestion I have for you is to stay on top of your dental care.  With the lack of saliva it is breeding ground for all kinds of cavities and mouth issues.  Make sure your dentist knows you have Sjogren's.

Again, welcome . . I hope you find this site helpful to you on your Sjogren's journey.

Bucky
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amk922

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Re: Newly Diagnosed and only 20 years old
« Reply #3 on: March 21, 2011, 09:41:50 AM »
Hi Monica,
I concur with Dry1000 about Plaquinel.  I was 26 when diagnosed, though my primary complaint at diagnosis was joint and muscle pain.  I had had "itchy" eyes for years that no one could explain, but it all made sense once I got the diagnosis. I was put on Plaquinel and Naproxen right away to treat inflammation. An actual diagnosis is a great thing to have because now you know the cause of the problems and doctors should be able to treat you at the source of your problem (your immune system), not just the symptoms. The prednisone is meant to get your immune system back under control, though it may take longer for some people - I don't know. Usually when I go into a flare I don't need to for more than 10-14 days, tapered. As for dry mouth, if you are on a high dose of prednisone, it's possible you may have developed a case of thrush (yeast) which makes dry mouth seem like a walk in the park and may make it seem like the dry mouth is not better, or even worse. Thrush can be treated with an antifungal medicine. If you stick your tongue out and it looks white-ish, you should ask about that.

Don't lose hope - Don't settle for doctors that tell you there's nothing more they can do. You will find people on these boards being treated with a variety of different medicines, and trying different things from diet change to acupuncture to herbal remedies, etc. Educate yourself on this syndrome so you can ask the right questions.  You are not alone.  We all have days when we wonder when it will end.

Lots of hugs,
Ali

Cheryl

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Re: Newly Diagnosed and only 20 years old
« Reply #4 on: March 21, 2011, 10:11:56 AM »
Monica,
  There is help for your dry mouth.   Ask your rheumatologist about these 2 drugs:  Salagen and Evoxac.  If one of them is appropriate for you, it will stimulate saliva and keep you from going crazy.  Some people are not able to take them, but a lot of us depend on them with no side effect issues.   Best wishes!
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CAT1962

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Re: Newly Diagnosed and only 20 years old
« Reply #5 on: March 21, 2011, 10:28:21 AM »
{{{M}}} Monica, I am sorry for the diagnosis. I am close to having my 13 yr old tested, as well. She has joint pain, DX'd eczema, and dry eyes.

Also, I have an RX for Pilocarpine (Salagen). I have yet to try it. (I have asthma and all notes say not to take with asthma, so I am going to ask the pharmacist first. )

Also, I started Plaquenil over a week ago..waiting for relief here! :)

Etta

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Re: Newly Diagnosed and only 20 years old
« Reply #6 on: March 21, 2011, 10:45:42 AM »
Talk to your rheumy, but as others have said, you need to get on two drugs ASAP: Plaquenil, which  slows the progression of SS, and Evoxac, which will actually make saliva for you.   Don't panic - SS is generally not supposed to be a hugely debilitating condition. The folks who have it the worst will be on this board, the others, which are the majority, are too involved with day to day life to spend much time here.

aussie mum

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Re: Newly Diagnosed and only 20 years old
« Reply #7 on: March 21, 2011, 01:58:24 PM »
Hi Monica, Welcome to this site, you will find lots of great advice here.

I can understand your situation as my daughter was diagnosed at 17, she will be turning 21 soon. It can all be quite overwhelming. While it is not good to get a diagnosis of SJS, at least now you know what you are dealing with and can get the right treatment.

I will leave the medication advice to others, but I have a couple of tips -
 * Try to take someone with you to your Dr's appointments - it helps remember everything.
 * Ask for a copy of your test results.
 * Keep a record of when you start medication and if you have any reactions to it. My daughter went through a bit of trial and error with medication and now it has all become a bit of a blur...
 * Rest when you need it.

Good luck and take care,
Aussie Mum







 
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

Joe S.

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Re: Newly Diagnosed and only 20 years old
« Reply #8 on: March 21, 2011, 06:07:37 PM »
I will welcome you to the forum. Shani is younger by about a year or two. You may relate with her some. I have posted what I have and what I am take as have some others have done this you can use that as a plce to start your research.
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