Sjogrens World Forums

Hi im new to this forum and cant wait to start talking to people with the same condition as me,this is the first time i have talked to people outside of my friends and family so will be a whole new experence for me

Welcome Wicked!

Thanks for introducing yourself.  I'm sure you'll soon feel at home here.  Maybe you could post with details of how you got a SjS diagnosis, what your symptoms are and what meds you are on?

Ask all the questions you need to, even little things.  You'll find there's always someone here who has had the same experience, same symptoms, same worries. 

Looking forward to getting to know you.

Take care - Chickpea

Hi ,

Welcome and please do share your journey with us.

I hope you find lots of information, encouragements and join in with our fellowship of sjoggies.

Blessings, kimbo

Thank you for the welcomes:-)I have been suffering with sjs for 11 years now but they only gave it a name about 5 years ago.I have seen so may doctors and have been told so many different things about the condition,at this moment in time i am suffering with swollen arms hands feet and legs,my blood vessels leak and cause painful Purpura :(my teeth are falling out and no one seems to want to help,i also suffer with Chronic fatigue and then there is something about my kidneys but im not really sure what that is.I was 17 when i first noticed a change and that was the purpura on my upper thighs it has now spread to my hands arms feet legs back and tummy.I have the problem with eyes and mouth too

Hi Wicked,

Let me also welcome you to the SJS World and Family!  Please do look around and don't be shy about searching out information, or even asking questions!  There are just oodles of great members here as well, and ask away as there is usually someone about.

I know what you mean about purpura, I've had a lot of run ins with that mess, but mine isn't painful though.  I'm curious, have your doctors said there is anything else going on besides the SJS?

Oh gosh, you poor thing, I sure know what you mean about dental problems!  My teeth were breaking apart at an alarming rate before I had them rebuild the first time (most of my problems were under the gum line).  The decay started again, and I've recently had them rebuilt one last time; the next time, they come out (it's way to expensive and painful to go through another time (and I just hate pain!  ;)).

What meds are you on (if you don't mind my asking)? 

Come often, and hang in there.

Take care -

Patze

Hi as far as i know  there isnt anything else going on,i sometimes wonder tho,i have days were i cant walk because of the swelling in my feet and legs and it really gets me down because i still have to get up and go to work :( im not taking any meds at the moment as they werent working but before i was talking Prednisone,Plaquenil and Azathioprine

Hi Wicked,

By chance, can you get to a major medical center or a teaching hospital as a lot of cutting edge doctors tend to be found around them.

Hang in there and keep us updated, okay?

Patze

I've been to the leading doctor in the country about sjs and they all seem to do and say the same thing,i'll have a look around tho to see if i can find something new.

Wow, that's interesting.  Do you mind if I ask what part of the country you're in?  I ask because maybe one of our members lives in your area or knows a doctor that might be able to help.

By chance, have you contacted the SJS Foundation (as they might have a name or two in your area.  I'm not sure if you need to join them or not, but it may be worth asking.)?  

Hang in there, okay?

Patze

I live in a place called Brighton in the UK and no havent been in contact with the sjs foundation but my mum has told me to get in touch.
Thanks for the help :)

Hi Wicked

You live in Brighton?  So do I!  I've also been in touch with another Sjoggie who lives in Hove.  So there are at least 3 of us in the city.

You said that you used to take Prednisolone, Plaquenil and Azathioprine but that you stopped because they weren't working.  How long did you take them for?  I've been on a wide variety of meds for a year or so and it's hard to know whether they are exactly working or not.  I'm not sure how we can judge it when we have a condition that waxes and wanes, or that is progressive.  It's an interesting issue to think about.

Did you see doctors here in Brighton?  I first saw a neuro at RSCH who thought I had MS.  Two years later he referred me to a rheumatologist colleague who diagnosed SjS with cns involvement.  I saw the neuro last week and he told me that the two of them are starting a research project on SjS with cns involvement so I think we'll probably be finding a lot more people diagnosed with SjS in the Brighton area!

Looking forward to hearing more from you!

Take care - Chickpea

I am a fairley "newbie" also having been finally diagnosed with SJS in March of this year. It took 6 years for them to finally diagnose me and I figure I've had this about 10 years. I also have Hashimoto's and Reynards.  I was finally diagnosed by an immunologist at a teaching hospital. The teaching hospitals actually like puzzles and challenges!!!! I got passed around and over by a lot of drs before I ended up there.  My worse symptom so far with SJS has been my poor teeth as I don't know how much longer the dentist can patch them. I am seeing a immunologist, rheumologist and pulmonologist. I live in Eastern Iowa, USA.

This site is GREAT to talk to others with SJS.  The emotional upheaval can hit you like a ton of bricks - even worse if you don't have family or supportive family. In my 6 years I had one dr tell me he was sure I had some type of cancer but I wasn't sick enough or showing the bad symptoms I should be -- Excuuuuse Me? So I already went through the emotional upheaval with that. So with me the SJS diagnosis was almost a total relief.

As to doctors, remember to be proactive with them. They do forget at times that there are actual human beings to go with all the charts and numbers.  ::)  If you don't tell them or complain, they will think things are fine - the stoic approach doesn't work for any length of time. Let the drs know they should be helping you with your symptoms!                Good Luck!

There are alot of things i really dont know about this condition and i would love to learn more from you all,some of the problems i have dont seem to be the same as others and i understand that we arent all the same.Thank you for all your nice comments and i look forward to talking to you all :)

Hi Wicked  :)

Welcome to Sjogren's world from me too. Sjogren's is an amazingly individual disease. NHS leaflets are not amazinly accurate!! I hope you find the site useful.

Take care - Scottie  :)

Hi Wicked,


Bucky

Hi Wicked and Welcome to Sjogrens World!

Please take all the time you need to look around the site at the various topics (you can use the search feature on the top left hand side of the page if you want to) and if you still have a question...feel free to ask...someone will always be around to offer advice and personal experiences.

This is a safe and comfortable place where people really do understand and get it because we have all been there in one form or another. Sjogrens is very individual and there aren't too many of us that present with the exact same symptoms...but can usually still relate it to something that we have experienced that is very similar.

Welcome to the family!

Hi Wicked,

Like you, I have also had this dreadful disease for 11 years and only recently was diagnosed.  I am also new to the board so we will be learning together.

Best of luck,
Kelly

Howdy do Wicked!?  I live in Minnesota, USA.

It's real nice to meet you! 

This is the best and most accurate place I've found to learn about Sjogren's and the slew of accompanying maladies we often share.

I'm about ready to change dentists because I can't get my guy to care either.  He doesn't seem interested in learning about Sjs and how it should be dealt with.  Meanwhile my front tooth is CRUMBLING!!

About the fatigue!!!  I have the worst fatigue!  It's so debilitating and makes me feel isolated and depressed!  Plaquenil has helped me with that, but not taken it away.  I guess I would say the Plaq helps me get out of bed MOST days, but not always.

I've read all about purpura and am so sorry to hear you are dealing with it right now.  I've had millions of small red dots that do not hurt on the tops of my thighs for the past couple months now.  I think it's petechia.  How did yours start?

Looking forward to knowing you better!
Janna