Author Topic: New here!  (Read 4933 times)

Sjocool

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New here!
« on: April 07, 2015, 10:02:23 PM »
Hello!  :) I am brand new to this forum. I am 25 and was recently diagnosed with Sjogren's Syndrome officially two weeks ago after feeling like a pin cushion from weeks of testing. This all came about after my first and terrible flare last month. I'm trying to get out of denial, but I do feel so fortunate to have come across this forum and community. Being very new to all of this, I'm still in the dark with this disease. I had several blood tests performed trying to figure out what was wrong with me. I was positive for Antinuclear Antibodies, with a titer of 1 : 2560, and SSA Ro positive. I'm curious if anyone else has tested similarly? Any medications to stray from? My rheumatologist currently has me on prednisone and methotrexate to calm my body down. I know it takes time to see the positive effects, I just hope to get feeling better soon...
« Last Edit: April 07, 2015, 10:30:10 PM by Sjocool »
Sjogren's Syndrome, Lupus, Restless Leg Syndrome, Photosensitivity, leukopenia | ANA 1:2560, Actin (Smooth Muscle) Antibody (IGG) 108, SS-A Antibody >8, Thyroid Peroxidase Antibodies 9.

finallyadx

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Re: New here!
« Reply #1 on: April 08, 2015, 05:51:58 AM »
Hello sjocool and welcome to the forum.  Sorry you had to find us but glad you did.  I think you will find the group informative, kind and supportive.

I take plaquenil and when I was first diagnosed was given a course of prednisone to "calm" my immune response. 

It sounds like you may have a great rheumy to have started you on prednisone and methotrexate already. 

I also take evoxac for dry mouth and sinuses - it helps with saliva and helps to keep my sinuses more moist (at least that is the way I feel!). 

Keep us posted as how you are doing.

Sending positive thoughts your way and hoping the treatment you are being given works for you.

Kim
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

Nymph

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Re: New here!
« Reply #2 on: April 08, 2015, 06:00:47 AM »
Hi Sjocool!

Welcome.  :)

I am glad that you got answers so quickly, and are already on treatment. I hope that this treatment is effective for you. If not, there are other options, and more being developed.

Let us know if you have any questions, or search the site for whatever you want to know. We have probably talked about it.  ;D

Nicole
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot

susanep

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Re: New here!
« Reply #3 on: April 08, 2015, 07:08:41 AM »
Welcome to the board,

I am glad that you have had testing so you can have the treatment you need. It sounds like things with your Dr. are going in the right direction for starting your treatment.

Hugs,
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

cccourt1942

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Re: New here!
« Reply #4 on: April 08, 2015, 07:30:57 AM »
I am stunned.  Your medication protocol is aggressive.  I am glad you added these drugs were given to "calm" your body.  Let us know if it has.   I was not diagnosed at a young age and really don't know anything about treatment from such an age.  (Actually...I don't know much about treatment at all but that which I have had and read about on this forum.)  You must be miserable to have such intervention.  You must not have sicca at this point in your disease.  My tests were positive for all three (ANA and ro and la)...which was your question. 

And yes...finding this forum will become your go to for many questions and laments.  Welcome and hope you are having a good day!

ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Carolina

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Re: New here!
« Reply #5 on: April 08, 2015, 08:39:14 AM »
Hi, Sjocool:  Love your name!
 
Welcome to the forum.  Take what you need, leave the rest.  All of us are different, certainly from other people (without Immune Disorders) and even from each other.

It is never 'happy' for us when someone new joins, and certainly not someone so young.  BUT, getting a diagnosis that is clear and early intervention is the best possible order of events under the circumstances.

Again, welcome.  Keep us posted on your 'adventure', please.

Hugs,  Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Sjocool

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Re: New here!
« Reply #6 on: April 08, 2015, 11:03:30 AM »
Thanks to each of you for your warm welcoming  :D I was very nervous to start the methotrexate. My rheumatologist assured me he uses it with some of his patients who are children, as well as adults. So far, I haven't seen any horribly negative side-effects. I hope it stays that way. Here's a little background on me. I've worn contact lenses since I was twelve. Ice always attributed my dry eyes to them and nothing more. I've had very bad tooth decay, it doesn't seem to matter that I brush and floss daily. It's rare when I visit the dentist and I don't have less than five Cavities. Last time I was in six months ago, he told me I appeared to be suffering from dry mouth. I again attributed that to sleeping with my mouth open, according to my spouse.
I got very ill the beginning of last month, flu-like symptoms. Woke up one morning to arthritis in what felt like every joint in my body. I felt utterly miserable. I had the flu in January and thought, good grief! Again?! I missed a lot of time off work and made several trips to the doctor to do several tests. I tested positive for rheumatoid factor, low white blood cell count, positive crp, positive ana, positive ssa ro, all virus tests came back negative.
I seem to be getting thrown all sorts of new symptoms over the past few weeks. Some of the main ones are: fatigue, foggy brain, joint swelling and pain, achy muscles, very tender and painful parotid glands, numbness in my chin/face, headache, dizziness, random rashes, dry eyes, dry mouth, fever. I'm starting to get tingly fingers and toes..

I'm hoping to get on plaquenil to help with fatigue in the future. From what I've read on here, that seems to help after about 6 most.
« Last Edit: April 08, 2015, 10:35:50 PM by Sjocool »
Sjogren's Syndrome, Lupus, Restless Leg Syndrome, Photosensitivity, leukopenia | ANA 1:2560, Actin (Smooth Muscle) Antibody (IGG) 108, SS-A Antibody >8, Thyroid Peroxidase Antibodies 9.

grammad97

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Re: New here!
« Reply #7 on: April 08, 2015, 02:35:47 PM »
Hello Sjocool  and welcome.

I am glad you found the site . You will notice we all post our diagnosis and medications at the bottom of our posts. Each one of us has different symptoms and some of us may still be waiting for a diagnosis.

There is a growing group of younger sjoggies on here too.

We all share our experiences with doctors, medications and life with sjogrens as we know it. Try to remember what works for you or me may not work for someone else. It's a quirky thing for sure.
You will get loads of information here but try to not let it overwhelm you.
Primary sjogrens, UCTD; osteoarthritis;osteopenia; HBP ;fibromyalgia;RX-plaquenil, butrans 20mcg patch ;flexaril;hydrocodone5/325;restasis, omega3, vit D, super B complex;s ;gluten free;lisinopril;moderate hearing loss

Liz D.

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Re: New here!
« Reply #8 on: April 08, 2015, 05:11:03 PM »
Welcome Sjocool,

You will find this site a lifesaver. I do! It helps to know you are not alone and that you aren't crazy.

I could have written exactly what you wrote for your experience in getting sick, then diagnosed. All my symptoms I had for years I just chalked it up to something else until I had my first flare and could barely walk. 

That was about 11years ago when I was 40 yrs old. I feel so bad you are so young but after awhile you'll get a  handle on it and start to feel better.

Make sure you have a good primary doctor, dentist,and rheumatologist that all understand what you are going through.

Plaquenil has helped me immensely along with NSAIDSs.

I hope you feel better soon.

Liz D.
55 year old female
Sjogrens Syndrome (diagnosed 2004), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 400 mg; Synthroid 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Hormone Replacement Therapy, vitamins, calcium, flaxseed, biotin

Carolina

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Re: New here!
« Reply #9 on: April 08, 2015, 05:35:59 PM »
Well, Sjocool I read your list of 'goodies' especially the feeling that you 'have the flu' which is what my 'flares' feel like.  Pain in every joint, muscle, ligament, even my teeth hurt, fatigue so I can only sit with my eyes closed, just sit, depression (no point in anything), and burning skin (also itching).  That is a flare for me of my Immune Disorder/

I can't believe you had all those cavities!  You are much too young.  but Sjogren's and the dry mouth are the kiss of death for your teeth and gums.  You must be taking something for added saliva,  PLEASE SAY YOU ARE!

I see my dentist three times a year, I'm so paranoid about my teeth after Sjogren's was diagnosed.

I keep my nose and sinuses as clear as possible.  If I breathe through my mouth due to clogged nose/sinuses then my mouth gets so dry it feels like a completely foreign object.

I take a generic Mucinex every night to thin my mucus, because otherwise it is like glue.

Then I clear my nose with a nasal spray, Simply Saline, followed by Nasocort.  That keeps my nose clear and the 'glue' from choking me all night.

I also use the same sprays in the morning.

I take Benadryl at night and Zyrtec in the daytime, because I need the antihistamine effects.

I take 5 mg of Pilocarpine 5xday for a total of 15mg.  That gives me a reasonable amount of saliva and also increases my tear film.

Pilocarpine is generic Salagen.

I'm going through all this because you are having so many different symptoms.

I take Cymbalta, which is an antidepressant that is also on label for pain, 60 mg. 

and Aleve for pain as well.

We all find what helps us most with pain, Sjocool, and all of the other symptoms we have.

There are things you can do for your parotids, including massages and applications of heat and cold.  I haven't had that problem except once many many years ago, so I can't tell you much about the treatments.

There are many neurological effects from Immune Disorders, as well.  But I think you should address the most important symptoms first and wait to see what happens.

Some things may disappear and stay away for a long time, perhaps forever.  And remember you are taking more than one new medication so you need to try to find a stable place, which can take time.

We call that 'the new normal'.  Welcome to our world.  It is really a great place to be. 

I have four grandchildren near me, and two dogs...I am active in several groups and maintain two websites.  I travel and spent three weeks in Paris last Spring, four weeks traveling the Pacific Northwest in the Fall, and visited friends and family in Florida recently.

At 73 I have a great life, in spite of Immune Disorders.  So relax enjoy your family and your life, once you find some stability.

Hugs,  Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Sjocool

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Re: New here!
« Reply #10 on: April 09, 2015, 10:16:18 PM »
Carolina,

Thanks for your response! I think I feel another flare coming on.. Started feeling those flu-like symptoms last night, getting worse through today. I use bioetene mouth wash which seems to work a little. I suck on sugar-free candies and use tooth paste with xylitol in it. I try to stay away from soda. Although this fatigue makes it so hard to resist at times. I'm not currently on any medication for the dry mouth or dry eyes. It's something I would like to bring up with my Dr. I have some systane eye drops to use once I get some glasses ordered up with a more updated prescription. My rheumy said not to use the drops with contacts and that contacts will soon be out of my life. My contacts are beginning to torment me.

I try to refrain from decongestants and allergy medicine as it can aggravate my restless legs syndrome for some odd reason. But I do need to start taking something for my stuffy sinuses.
I will have to try some massages and adding warmth to my glands.

That's very neat you are able to travel like that! I love the saying that goes something like, "life is meant to be enjoyed, not just endured."
Sjogren's Syndrome, Lupus, Restless Leg Syndrome, Photosensitivity, leukopenia | ANA 1:2560, Actin (Smooth Muscle) Antibody (IGG) 108, SS-A Antibody >8, Thyroid Peroxidase Antibodies 9.

quietdynamics

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Re: New here!
« Reply #11 on: April 10, 2015, 04:28:19 AM »
Sjocool.. Hello, thank you for joining the forum, sharing your sojourning and helping us by sharing.

Last summer I went for an appt at a SJS Center, am a patient
Bottom line was in my situation Plaquinel was not managing chronic inflamation and was damaging organs. So changed in treatment protocol to Methotrexate ( with Prednisone taper over 16 days) Plaquinel dose halved. And labs done weekly to monitor.
Drs goal, hope is to reverse some of the organ damage, and as far as Meth working " we have other options" And yes we talked about the fact that this med. is utilized by children.
Drs. opinion is that disease process has been active much longer than I had thought.. perhaps in my 30's.  I was Dx'd in my 50's

No one here would wish anyone to have any disease process at any age.  I have worked with ill students, some with "no real options". So I will focus on the positive that being Dx'd young and having a Dr. who wants to "take the bull by the horns" is a great accomplishment.

So we are very lucky to have 'options'. And there are currently major strides being pushed beyond pharmaceuticals to help patients/Drs.

My fatigue, daily productivity has improved with the addition of Meth.  In that I am not taking crash/naps daily.. I still do crash. I was required to stop this med (4wks) for vaccinations and really slide back. 

Oral Care:
I never had many cavities. But, have Periodontal issues that started late 30's, late 40's teeth started chipping, and recently learned I have bone loss in jaw.  SJS Dr. had Vit D and B levels checked and I am low by the standard (which he does not use.. he uses a newer ranger --> so I am very low and he Rx' Sublingual )  Vit D is the precursor to Calcium absorption.
I also read on Dentistry.org sites to use a dental water pic.. flossing is not enough. After meals to sip, swish and spit.. Fluoride in water has been shown to be protective for up to 3hrs (?)
And a  topical fluoride interventions applied by your dentist.

"I suck on sugar-free candies"  If you are comfortable switching to sugarless gum with Xylitol.. the chewing action promotes saliva ---> Saliva has protective properties for your teeth, tongue, oral health, the correct ph,  and other great component ( Who knew?)

It also should focus on various palliative and preventive measures, including pharmacological treatment with salivary stimulants, topical fluoride interventions and the use of sugar-free chewing gum to relieve dry-mouth symptoms and improve the patient's quality of life.
http://www.sciencedirect.com/science/article/pii/S0002817714602002
*PDF is in upper left top under Science Direct

The "Sunshine Vitamin" and Periodontal Health: A Vitamin D Update
http://www.oralhealthgroup.com/news/the-sunshine-vitamin-and-periodontal-health-a-vitamin-d-update/1000389424/?&er=NA

In my situation with the new treatment protocol, as it is evaluted, tweaked, etc... then will be addressing other issues. Chipping at the rock.  Some symptoms get teased out with treatment and then can be re-evaluated for probably cause.

Do keep a journal/ symptom, med, notes style diary.  These symptoms are insidious, sometimes appearing slowly (and we have to think back as to when then occurred, or insidious in that we 'get used to them', whereas a healthy person would sit up and take notice) and we are busy with the bulk of life affairs. Changes in meds --> effects. And note positives.. always healthy for our psyche and that of our medical professionals.

Wishing you well.

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

4Kids

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Re: New here!
« Reply #12 on: April 10, 2015, 05:54:59 PM »
Welcome Sjocool!

I am sorry you are suffering like that. You should ask for Salagen or Evoxac to get some saliva and fluid production up. I also use Saliva Sure and Xyliments--both are Xylitol supplements you can take in your mouth. They help stimulate saliva production and also protect your teeth. I glue a Xylimelt to my gums before bed and put a Saliva Sure in as well after taking Salagen. Then I can sleep with my mouth closed.

I also use Nasogel in my nose. Restasis in my eyes and Plaquinel.  I feel best when it is plaquinel, salagen, restates and Nasogel in combination. I think you are feeling much worse than me so I am sorry but it does sometimes help to have the over the counter helpers and they can be hard to find.

I hope your Sjs settles for you soon. You will feel better, eventually.

Hugs
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

Sjocool

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Re: New here!
« Reply #13 on: April 11, 2015, 07:40:18 AM »
Thank you quietdynamic and 4kids for the info! I am definitely interested in getting something for my dry mouth. I will need to try some of xylimints. I found some lozenges near the bioetene products made by ACT that work pretty well and they have xylotil. I am trying to keep a journey of my symptoms. I found a pretty cool app for that. Who knew?
I really have liked my rheumatologist thus far, but I am going to be relocating to another state within a few weeks and I'm nervous things will fall apart or my new rheumatologist will try changing everything. I don't know where to go to find a new one. The one I currently go to is the only one in my current town so that was an easy decision.  :-\
« Last Edit: April 11, 2015, 07:43:12 AM by Sjocool »
Sjogren's Syndrome, Lupus, Restless Leg Syndrome, Photosensitivity, leukopenia | ANA 1:2560, Actin (Smooth Muscle) Antibody (IGG) 108, SS-A Antibody >8, Thyroid Peroxidase Antibodies 9.