is Sjogrens hereditory

Hi

i was told it's more common in females...it's just such a shame with my daughter getting it so young..Sorry to hear you have it too..Ithink with men having it, it's more of a slower version of it..With the symptoms i have, i just assume its aches and pains coming with age..

Hi women are more likely to have %wise both lupus and sjogrens but saying that I had a brother who had lupus. Doctors are thinking maybe I have other one- sjogrens. Not well a lot really with joint pains, sore eyes and terrible dry mouth. Have sores in nose and nasal probs that sounds petty but together with leg pain its all hard work at the moment 

Hi Frustrated

thank-you for the reply, and for the useful information you've provided.I really appreciate it

Hello again Jir ~

There was a reason I spoke about the Kelloggs Eye Center.  After being diagnosed with sjorgens, I had endured a six week program to get me started wearing "prose lenses".  They are somewhat like contact lenses but they are much larger than regular contacts.  They fill the entire color of the eye area and out almost covering the entire white area...that's why it took so long to finally get them.  They fit you, then make adjustments and send it to Boston and they overnight ship back to my doctor and the fitting goes on and on for almost six weeks. three times a week for three hours each time....never less than that and definitely longer for some.  The idea of using the prose lens is that there's fluid that the doctor perscribes you as to  what to use...anyway, you fill the lens up and "gingerly" open the one eye as wide as possible holding the contact in one hand and the other is stretching the eye as wide as it can go....the contact is full of fluid and it's so soothing to the eye.

After having such dry eyes that the lid stuck to my eyeball and it was extremely painful to try to get the lid off the eyeball. Ok that's just wrong in so many ways!  Anyway, you can wear the lenses for up to 9 hours BUT..and a big but you cannot fall asleep when they are in...if you do fall asleep and it's more than 30 minutes, you have to take them out for the rest of the day...even if you just put them in an hour prior falling asleep...the reason I'm making an issue out of falling asleep is that with most auto immune problems, exhaustion is one most of us fight.  It's sometimes near impossible to stay awake. 

Ok back to the prose lenses....as you can see, the lenses are really a positive to what seems like an endless time of suffering.  The other plus to the lenses is that you see 20/20 when they are in!!! HURRAAHHH!!! Mind you, these are just lenses w/o a prescription...just plain ole'  huge lenses.    I never thought I would ever see that clear again!  I was close to blindness in the left eye and the right was following quickly behind. 

The drops I was told to use before I was diagnosed were eye drops with a gel in it.  Also at bedtime I use the nighttime ointment.  WOW what a difference that makes to wake up with your eyes unglued to the eyeballs!  Perhaps that would make your daughter somewhat comfy.  If she does use this already and she's still not getting any relief, don't walk, rush to the nearest Eye care center...with doctors that only deal with auto immune diseases...these doctors are rare and far and few between ...

NOTE TO anyone...if you're in college, Eye care is big...and especially if you specialize in the auto immune system and the eyes...lots of buckos...my lenses alone were $8 K all of which my insurance paid for with exception of the co-pay...about $500 out of pocket. 

I hope you can get the care your daughter deserves...I'd give her my lenses if that were possible because I'm 61,,,I have a good life and lived one as well...your daughter is just beginning.  My prayers are for you and your family...Please let me know how things are going.  It really does help  to talk/write about it...to people who totally get what you're going through.

Warm regards,

Frustrated

My posts are way too long...I'll try to cut it down!  Well, after you read what I've already posted, that is.  promises promises! 

 

Medifocus Guidebook on Sjogren's Syndrome...this is a guidebook that helps one deal with and live with sjogren's.  From what I've read about sjogrens, most likely it isn't hereditary...I'm going to order this book because it will be full of information all of us can benefit from...ok, ok, don't worry, I'm not going to be "the know-it-all"...I promise.  I'll answer anyone if they are stumped that's if I know...I won't post unless I'm positive what I'm writing because I do read a lot.

your comments are most appreciated----thank-you

Thank-you

Hi Kaka ~

Kako...the symptoms are as what I've experienced. I cannot talk for anyone else.  I know for me, it started in the saliva glands...my mouth was so dry it did swell my cheeks...my ent gave me something to produce saliva.

Are you seeing a Rhuematologist?  I know that for both sarcoidosis and sjogrens, that's the main doc to see.  Both of the diseases are inflammation of a certain area...cannot specify bc each one of us are different.  For me, my sjogrens started in the throat/saliva glands..so dry that the food couldn't even go  down making it stay in place...but, I was so inflammed that I didn't know it didn't go down...so, w/o any warning, I'd vomit forcefully w/o any means of stopping it.  It was terrible for me.  Run, don't walk, to  the Rheumatoid Doctor because your daughter doesn't have to suffer.  And, you may just help stop a situation in the lunch room: projectile vomit.  Kids are rude and think it's ok to pick on someone.  Your daughter doesn't have to suffer.  Get to the doctor asap so other signs don't show up.  It's like dirty dishes...if you keep them up, it's easier to clean.  Analogy!

Keep strong, Kako's little girl.

Help is on its way!!!

Smile and carry on

frustrated61

Kako ~

The projectile vomiting for me was right in the middle of a sentence...it would just fly out of my mouth...so embarrassing.  Kids at school are so mean and I certainly wouldn't want to add that to the list of things she's going through~

Keep strong for her.

Hi

she is seeing a rhuematologist..And has suggested that they will do a small operation on her cheeks inside her mouth to flush the glands through and to make them bigger, so that they won't block again and cause her cheeks to swell up..Plus it also depends on what she eats...Thank-you for the advice.....My actual name is Kyri

Kyri ~ beautiful name, btw.  How do you feel about her having surgey? I just wonder, have they already done the steroids/methotrexate/plaquenil?  All of those are anti-inflammatory but the metho/plaq are also a form of Chemo and that also helps with inflammation...also to help it from coming back.  Just a thought

My name is Katherine

Hi Katherine, the 3 latest tablets she's on are "methotrexate, prednisolone and folic acid..She feels very poorly with them , but the doctor says it will take a few weeks until her body gets used to them..She's also on "Hydroxychlquine, sodium cromilicate and cetirizine

Hi Kyri ~

I feel her pain.  I was very ill on methotrexate but like the doctor said, it does lessen as time goes by.  Make sure she drinks a lot of water and/or her fav drinks.  How's her appetite?  Man oh man, what a nasty rap she has been delivered.  I will definitely say prayers for her...if you don't mind, what's her name and I'll put her on the prayer lists I belong to.  I do believe in the power of prayer...that positive energy does pass along to whomever is being prayed to.  Hugs to your daughter and let her know, what she's experiencing is what Methotrexate/Plaquenil feels like...it means if you're feeling ill, it's doing its job!!

good luck!

frustrated

Thank-you......her appetite has changed due to what she eats..Some of the food feels like it's stuck in her throat, leaving her feelin awful....Do you know whether any of the medication she's on can affect the quality of her hair?

Hi Kyri ~

As far as the hair being effected, yes!  I lost a lot of hair on Methotrexate and Plaquenil.  I did lose all my eyebrows...not cute when a dark-haird person shows up w/o eyebrows...and penciling them on would only draw more attention.  If she's losing a lot of hair, check with her doctor and make sure that's a side effect also, it could be from stress ...stress can do so many things to our bodies.

Again, I'm saying prayers for her and also you!

warmly

frustrated

i can't say that it's obvious she's lost hair, but the condition has changed which has gone dryer and the ends of her hair looks much finer...Does it eventually get back to normal?

That's how mine was at the beginning...it lost its shine and did get dryer...and that's part of the sjogren's disease. !! 

Anyway, try to wrap her hair in Mayonnaise aka Mayo and the true Mayo not Miracle Whip...and make sure it isn't fat free etc...it has to be the real deal...cover her head in the mayo and wrap it in plastic wrap until it's all covered....leave it on for at least three hours and when she washes it, it will really smooth &  feel shiny.  Aftwards. wash hair and then put in a good conditioner, let sit while she washes her body.  Rinse in as cold water as she can...You can do that as often as twice a month but the conditioner can be done daily...remember the cool water..or as cold as you  can stand it.  It may get worse before it gets better just be patient.

 I just came back from the Dermatologist and found out that my sarcoidosis and sjogrens has spread to my skin (the largest organ of the human body)...it stinks. Not literally, just stinks that it's spreading. I'm going to put off seeing the Pulmanologist and Rheumatologist...I just don't want to hear bad news...might be a mistake...what do you think? 

i really don't know what to say..You've been through so much from what you've been telling me..What level of Sjogren's are you? Primary or secondary?

Jeez...you think I'd learn by now to save, save save before I get up and do something...I was writing you what felt like a book and when I came back.....dernnit it was gone Seriously, I wrote for over 45 mins.!  Well,I'm pretty tired right now but I will try to duplicate what i wrote later today...by the way, does it bother you when I post long messages?  Please be honest because I don't want anyone to think to self "ugh, there she is again"  lol  I "could" try to shorten them if that's the case.

I will end in saying that I am secondary sjogrens and level 4 in sarcoidosis...it sucks but what can I do about it...Nodda!  well, will write later...hope your daughter is feeling ok...and how is Mom holding up under this stress...it's bad enough when the adult is going through something horrific...but if I had to watch my daughters go through it...it would literally break my heart...so, how are you doing?

Talk soon

frustrated

no i don't have a problem with how much you write...mum is ok, worried like any other parent but very supportive. We're all looking forward to going on holiday to have a rest tomorrow..Hope you're ok and we'll chat in a couple of weeks when i return...Take Care

Have a nice, restful time