newbie with SS

[skygirl]

Hi,
Im 38 and I have an autoimmune disease already,  and I probably developed SS ...
I was having serious dry eye, for more than a month and went ot the opthalmo..he did the tape test.
He suggested it could be SS
Before I had other complaints that doctors would tell me it was allergies or rhinities etc. Now
I put the puzzles together...and It make more sense.
Well for a few months, because of these problems, I havent been sleeping weel etc, I'm afraid of
sleeping..so I force myself to stay up, until Im so terribly tired that I go out...But by doing that
I have been feeling even more tired during the day.
I have appointments with my regular docs and now with a rheumi...

I have many questions

Is this controlable with meds? Does it ever go into remission?

how many of you, have SS and other autoimune conditions, and for how long have you guys had it?

Do you take any meds, like Mtx predisone, plaquenil etc? Are these meds usually covered by insurance?>
Do you work etc?

sorry for so many questions

Monica

[cinmac]

Hi Monica and welcome.

I have what they call serum negative SS, which means my blood tests were negative.  SS is not curable, although it does sometimes go into remission-waxes and wanes.  Some people-actually lots of people have it, and don't even know it because their symptoms never get bad enough to go to a rheaumatologist.  I know I had it for years before it got bad enough to deal with it.  Never felt quite right, but not really acutely ill either, until a major flare 10 yrs ago.  I was very ill for about 18 months, then my eyes improved, my saliva came back and other than fatique and having to protect my eyes from wind, certain type of lighting etc I could do much of what I wanted.  I still had problems with any type of fine visual work and the computer screen so I ended up on disability eventually but it was not as bad as I originally feared it would be.

Now I am in another flare and I hope it will improve too, but I don't know what the future holds.

Right now I am on prednizone, salagen, minocycline and tramadol.  I do hot packs and eyelash rubs twice a day and when my eyes r dry I use Thera tears and Genteal gel.  The eye drops r expensive but many of us have to use preservative free drops which r individually wrapped and I guess pricey to make.  Some SS people use Restasis which is a prescription and quite expensive too.  I did not work for me.  I am getting wrap around sunglasses so that I can be outdoors more and may even go up to moisture goggles if this flare keeps up.

I guess the best answer to your question is that nobody knows how much or even if your disease will progress.  We r all very unique, so while I like to read posts and it is somehow comforting to know I'm not alone in this mess, it is also important to remember that you may never develop some of the complications that others have and the symptoms you do have could change or even go away tomorrow.  My mouth has been as dry as a desert for weeks and last night out of the blue I starting producing saliva again.  Go figure!  I was so excited I woke my husband up to share the moment.

I hope this helps. Keep the faith-who knows what they might develop tomorrow.  I read that they will be using stem cells to treat macular degeneration within 5 yrs, so maybe it will work for SS too.

cinmac 

[skygirl]

Hi
thanks so much for replying....Im very depressed, but I guess I need to deal with it..
any info is always helpfull!

monica

[Dolly Dimples]

  Welcome Skygirl,    Of course your depressed, this is a strange new thing that has happened to your body.. obviously you need to deal with it.
                       
          If you go through some of the past threads here, you will find answers to a lot of your problems...  tho' many of us have different symptoms, no two are identical!
   You certainly should never force yourself from sleep, that is one of the most things that can help us,  we should get plenty of rest , eat well too. and find out all you can to help you through a flare.
  Some days you could  be fine,   you will gain an insight as to how it is as you visit here,and  we  are all here to  help and console one another whenever you need some TLC..you will probably get more replies to your thread, then you will see just how it goes...
                                              Hugs Dolly x

[Chickpea]

Welcome Monica!

You're bound to be feeling overwhelmed by this diagnosis and by sheer exhaustion if you're not sleeping.  I'm glad you've found us so that we can help you through the difficult times.  We're also here for the good times too, and there will be lots of them, I promise you!

I've found it helps to have lots of treats ready for the tough times.  When I can't sleep I put on a cd of gentle classical music - Bach is best - and have a bath with lavender or rose oil.  A friend with RA told me that silky/satin nightwear helps too because you can move more easily in bed so that's a good excuse for some pretty things!  It's also important to get the exercise/rest balance right in your life but make sure that both are as much fun as they can be, with a varied routine.  Try to eat little and often, choosing a variety of foods that tempt your appetite.  Above all, be kind to yourself.

You'll see from the discussion topics that people have a wide variety of symptoms, some people have flares, and other people have dryness issues most of the time.  A very few people develop systemic problems, but there are some really good treatments being developed to help them go into remission.  Most people are on Plaquenil and adjust to it well, especially if you introduce it slowly.  It can take 3-6 months to kick in so you have to be patient, but once it does it can help a lot with exhaustion, dryness and general aches and pains.  Some people add Prednisolone/Prednisone to Plaquenil to help with flares or at the beginning of treatment and then the steroid dose is reduced gradually.  Other people prefer to avoid steroids altogether.  Methotrexate, Imuran and CellCept are used by very few people but they usually have good success with these immunosuppressants.  I'm in the UK so paying for meds isn't an issue but I expect someone from the USA will be able to answer questions about insurance coverage.

If you put 'work' or 'jobs' into the search box you'll find a discussion thread about all the different sorts of work people here do.  It's quite amazing!  As well as lots of nurses and teachers we also have our very own PI.  And we're truly international.

Hope you have a restful weekend.  Post lots and tell us how you are doing.

Take care - Chickpea

[Linda196]

Hello and welcome, Monica.

I also had an immune response disease, and  couple of autoimmune diagnoses before being diagnosed with Sjogren's. I had Hashimoto's thyroiditis for 30 years, Sarcoidosis for 25, and myositis for 5, before the SjS DX nearly 6 years ago. Symptoms of each of them waxed and waned constantly, occasionally being mild enough to qualify as remission.

I take methotrexate, Plaquenil and Prednisone, and my insurance covers all of them but I'm in Canada and our health care and medical insurance is somewhat different than the US. Please try to get to the bottom of your fear of sleeping, because, as Dolly and Chickpea said, restful sleep is very very important in dealing with these diseases.

Never worry about asking questions here, thats how we all learn, because your questions bring out answers that help all of us.

[Butterfly]

Hi Monica! I'm also relatively new to this site and have already found it to be a godsend. I have a cluster of autoimmune disorders: started with Graves back when I was 21. I was diagnosed with vetiligo (the Michael Jackson disease where you lose skin pigment), alopecia areota, and hashimotos in 2000. I developed what I now call the Sjogren's rash after having major surgery. I spent over a year looking for the cause. With the help from my OGBYN I found a great allergist who ran a rather large autoimmune panel of tests. That led me to the diagnosis of Sjogren's and mixed connective tissue disease. I have since developed rheumatoid arthritis. I have tested positive for lupus twice but each time they retest it is negative. Until about a 2 years ago I wasn't bothered much by the sjogren's. Mostly had dry eyes, skin, and mouth. All were easily treated with over the counter meds. I have been in what must be a bad flare for about 6 months now. I am experiencing extreme to the bone fatigue and brain fog. And looking for a good rheumy to help me. I am on the following meds: refresh pm at night to keep my eye lids from sticking to my eye balls; refresh eye drops during the day as needed; cetaphil cream for the dry skin; triaminicolene ointment as needed for the rash and when that doesn't work cordran tape (it's a cortisone tape); saligen to help make saliva (tried evoxac but couldn't take more than 1 tab per day due to the headaches and increased blood pressure it caused); plaquenil for the RA and Sjogren's; flaxx supplements (it helps with the moisture in eyes, skin, intestines); and synthroid for the thyroid issues. I also have osteoporosis and take extra calcium. I live in the US and thankfully have great insurance thru my husband's work. I think there are pharmaceutical companies out there willing to help those who can't afford their meds. I would suggest contacting the manufacture via phone or their websites. I have been unable to work since mid September of last year due to the fatigue and brain fog. I hope to find some type of treatment to decrease the fatigue and brain fog so that I can return to work. I am not currently on disability but will try to get on this if I don't get better soon. My best advise for you is learn as much as you can about this disorder. You will likely have to help educate your doctors so that they can better care for you. Educate yourself on the medications you are prescribed-actions, side effects, etc. I was prescribed another ointment to treat my rash that had a side effect of causing lymphoma in some instances. There's an increase risk of this for those of us who have sjogren's so I declined to take it. My dermatologist prescribed something else that didn't have the side effect. Make sure you have a great physician/patient relationship-this often means kissing some rotten toads along the way to find that prince of a doctor. And be kind to yourself. Listen to your body. Rest when you need to. Hope this helps!
Take care!

[Scottietottie]

Hi Monica 

Welcome to Sjogren's world. I can't add a lot to what the others have said. This is a good place to come for support. I hope you find the site useful.

Take care - Scottie 

[eyeamdry]

Hi Monica,
I take methotrexate and Plaquenil for Sjogrens.  Insurance covers them and they are cheap drugs.  I also take Lyrica for trigeminal neuralgia which is very expensive and my insurance only pays a portion and my share is $90/mo.  Lucy

[jonnell]

Hi Monica,  Welcome to the forum.  I am also 38 I dont have sjs but my 4 year old daughter Jenna does.  She is the youngest at A I Dupont Hospital for Children to ever have sjs.  She had positive blood tests.   Ive found one thing that keeps her flares at a minimum and that is rest.  She just started plaquinil and is on Naproxen(which is the same medicine in Aleve) for the pain.  But the more tired and stressed she is the more pain and symptoms she has.  We also use a humidifier for her room while she sleeps.  I find the chewing sugarless gum helps with her dry mouth and we make sure she has access to water at all times especially in the summer.  She also suffers from Asthma and Joint hypermobility syndrome and wear special shoes for her ankles because she is flat footed and double jointed.  It gets very depressing for us because Jenna doesnt really understand what is going on.   The thing about sjs is it affects everyone differently.  But Jenna has a good rhumy and that is one of the pluses when you have a good doctor that will listen and treat the symptoms not just the test results.  I wish you the best and am here if you need a friend or someone to ask questions to.  My thoughts and prayers are with you.   Hugs and Kisses    Jonnell and Jenna

[lynnmarie219]

Hi Monica...welcome to Sjogrens World!

Don't ever worry about asking questions here...this is the place to do it along with venting, sharing the good and bad times with others who understand, and finding support and friendship!

I was diagnosed with sjogrens and then fibromyalgia almost 5 years ago and currently take plaquenil for the pain and fatigue,  salagen for saliva, and provigil for the severe fatigue. I also take several other medications and use over the counter products due to some of my other issues (some screens related and some not). These include GERD and IBS, asthma, diabetes, low thyroid, and migraines. Its more meds than I would like to take, but I feel that they all help me to continue to lead a full life and work a 40 hour plus week. My insurance covers all of these meds and I have to only pay for the co-pay.

Read all that you can here and I hope you feel comfortable enough to keep coming back! Welcome to the family!

[Patze]

Hi Monica,

Let me also welcome you to the SJS World!  Please peruse the board as there are tons of topics that you might find interesting!

You've been given a lot of good information, so there's not much I can add, but I'll try!

I'm also a sero negative member here, and there are a lot of us here, so if you have any questions, please don't be bashful as there is usually someone that can give you an insight or maybe suggest a new direction to look into - this is such a friendly board!

I was first diagnosed with Hashimoto's going on four years now, and even after I was "stabilized" on Levoxyl, I still had a lot of symptoms that were not being helped by the drug.  I was finally sent to a rheumy about three years ago, but I'm lucky as the rheumy is treating my symptoms, and not the blood work.

Like some of the others, I also suffer from IBS, fibro, and some neuro issues too (along with the thyroid problems), and with the exception of Provigil, my insurance covers all my other drugs (and only a small part of Lyrica), but so far, I can afford them and the copay too.  And like several others here, I also work full time plus these days, and I try to keep up outside activities when I can.

Hang in there and please do come often!

Take care -

Patze

[Pisces24]

I am a newbie to SJS diagnosis too - diag 4/23/09. Previous to that I was told I had indolent lymphoma.

With any disease diagnosis it takes awhile for your mind to accept it.  It is almost like the stages of grieving. You have to go through the other stages to get to the acceptance.  

I had 2 yrs of emotional "H" with diff doctors - sure you have this, no wasn't but we think, no but, sure it is, no that's not panning out, etc. etc. etc.  I didn't sleep, eat, etc good either w/worry. Cancer is a heck of a big word to get your mind around! Especially when the drs make you feel like any day now the boom is gonna fall on you.

But you learn to deal with your life day by day. Yes you make plans but you don't let the diagnosis define who you are. Here is an idea. Think of your diagnosis/disease as a big ole bear that is in your house. It is there to stay unfortunately and bothersome but you can stick the bear in the closet (emotionally speaking), you don't have to have it in your face all the time.  Same with your diagnosis.  Enjoy your life and deal with the durn ole bear/ SJS/ whatever when you have to.
Hope I helped. Good Luck!

[KYMOM]

Monica, welcome to the site.  Have been diagnosed for a year now.  Not currently on any meds.  Have a new round of appts coming up.  Roxanne

[JannaLee]

Skygirl,

If you don't mind my asking (if you do, I won't get hurt feelings) why did you choose the name "sky-girl"?

I struggle with depression and a WEE BIT of anxiety that tends to increase the depression which in turn amps up the anxiety, and so on.....  This emotional stuff all started about 15 years ago.  Looking back on it, I remember starting to feel vaguely "unwell" about then too.  So I went into therapy and started psych meds which helped tremendously but I have never been "cured" of this.

My Sjogren's diagnosis came about a year ago and since then I've read that Sjogren's patients have a much higher incidence of depression than the general population and also 60% higher than Rheumatiod Arthritis patients (who don't have Sjogren's.)

This was a huge relief to me...I found out I'm not crazy because I'm crazy.  I'm crazy because I'm sick.

I don't know if hearing this will give you comfort and I want to also tell you I have met several on this forum who went through severe depression that didn't stay like mine has.

Anyways....I sure hope my remarks aren't making you feel worse.  I just wanted you to know not to be hard on yourself because you are in a rough patch right now.  Don't hold back when you see the doc.  Tell him you are feeling depressed and not sleeping.

ALSO!! I JUST THOUGHT OF THIS!  I once had a psychiatrist tell me "lack of sleep" can increase depression 10 fold!!!  Maybe you could take something to help you sleep?

Empathy and understanding to you, my dear!
Janna