New: What to Expect?

[Pisces24]

I am totally new to SJS and see for 1st time a Rhemotologist the end of this month. Reading the discussion board I find a lot of different symptoms,etc. For me the symptoms are mild (always been) : some abnormal blood #s, teeth cavity problems, lymph node swelling off & on and easily getting sinus infections. I believe I've had SJS for 8 yrs - but was tested/monitored all that time a lot. = blood tests, biopsy, needle aspiration, MRIs, CTs, Xrays, etc. etc.

My question is the description says a slowly "progressing" disease.  Do medications abate the progression or does it just slowly go downhill with nothing that can be done for it?   Are medications just for when the symptoms get bad?  I guess I am asking someone to look in a crystal ball to predict my future but I really just don't know what to expect. I am just one of those people that look things head on and plan accordingly and I am totally at sea with this.

I am also writing down a bunch of questions for the Rheumotologist so also if you have any good ideas what to ask dr, let me know.

Thanks for all help. 

[Scottietottie]

Hi Pisces 

Welcome to Sjogren's world.    SjS is interminable but NOT terminal. It's also very individual. It is usually slowly progressive but not always. Some people don't find it progresses much at all. A minority find it progresses rapidly. Sometimes it goes in fits and starts and I know I had at least 10 years remission at one point - so that can happen too.

There's no point looking in a crystal ball because none of us know what's round the next corner.  Plaquenil is given to slow progression down - and like I say - progression is slow anyway. There are meds which can get 'flares' under control but I've never needed them yet.

You'll get lots of support in here and find that there is life after diagnoses!! 

Take care - Scottie 

[Patze]

Hi Pisces,

Scottie's right, there is no rhyme or reason with SJS.  You may have symptoms that I don't and vice versa or your symptoms might be very mild while mine are terrible - it's so individual.

My symptoms usually stay mild (except the eyes), and occasionally flare to remind me that it's still here and not going anywhere.  Now to get rid of the fibro, ugh!

Please do keep us updated, and good luck on your appointment. 

Take care -

Patze

[jonnell]

Hi Picses,  I have a four year old with sjs I wish I knew the answer to that question.  But I will tell you something Ive learned from this site.  On of the best medicines for sjs is sleep and rest.  Jenna is a lot better when I can get her to rest and sleep.  When she is exhausted she is in so much pain and so miserable.  I wish they would find a cure for this terrible disease.

[Chickpea]

Hi Pisces

This is THE question, isn't it?!  I often quote Scottie's comment about SjS being 'interminable but not terminal' because I think it's really helpful, both for us and for the people who care for us.

There are lots of really good meds, for SjS itself and for the symptoms.  I'd echo the others and suggest that you read up on Plaquenil which is the gold standard treatment for SjS and lots of us have been using it for a long time.  It can slow down the progression and also alleviate symptoms.  Some people combine it with steroids (prednisolone/prednisone).  Then there are treatments for dry mouth, dry eyes, painful joints etc. 

For a small minority of people - and I'm one of them - things progress a bit quicker and that's when DMARDS (disease modifying drugs) and forms of chemotherapy/immunosuppressants are used.  My experience has been pretty positive so far, and definitely manageable.  I'm happy to answer any questions you have.

So whatever happens, and however quickly SjS goes with you, there are always people here who can help.  Visit often, share your experiences and ask all the questions you need to. 

Take care - Chickpea

[cmacd]

I am also new here.  I have been having swollen saliva glands for about three years and after repeated trips to the ent, for all the various tests, finally saw a rheumatologist last month.  Blood tests confirmed I have the antibodies but I was not provided with all of the details.  I still have to have the lip biopsy.

I am scared.  I have been through a very tough year.  My brother in law, only 49 was diagnosed with and died from stomach cancer in less than one year.  We all thought that he would make it.  I am very close to my sister, and was to him, and the stress of his illness was very difficult for both of us.  I don't want to be a new burden to her.  I am 47, single, no children (love my dog, Carson).  I have always had respiratory problems (since a baby), have asthma, kidney and thyroid issues.  Depression, brought on by stress, is also in my history.

I have brothers and sisters but I am the stable one; the one that everyone goes to when they need anything.  I don't want to be a burden to them either and, actually, I don't want to be vulnerable around them or my friends.  It seems sad that I would rather seek support from strangers but I don't really know where I am headed, or what I am up against, so thought it was best to start learning about this disorder from people already in the know. 

I have been reading many of the posts and will continue to do so.  It is hard to absorb so much information, though, so I need to do this in baby steps.  It gets so overwhelming at times; I find myself very tearful.  I suppose the risk of developing cancer, when those wounds are so raw (my brother in law just died in Feb), is what scares me the most.

Thanks for listening.  I will be reading.

[Linda196]

Hi Cmacd, welcome to Sjogren's World.

I hope you get some relief and comfort from what you read here, and please try to remember that not everyone gets everything that SjS has to offer...some people don't progress past the initial dry mouth and eyes, while others have issues with neuropathy and generalized discomfort. Your journey with SjS will be as individual as all of ours.

While there is documentation of some increase risk of lymphoma with autoimmune disease, the statistics are a bit misleading and the actual percentage of increase is minimal.

I'm sorry you've had such a stressful year, and that may have something to do with the timing of your symptoms...stress is a common trigger for autoimmune disease. Get to know us, ask anything you want, and post whenever you want to comment, I hope it helps.

[KYMOM]

Hi Cmacd, So sorry about your brother in law.  It is hard to lose a loved one.  As with anything we need to take the Sjogren's one day at a time and cope with what is and not with what may be.  I hope you can find a friend to share your troubles with because it really helps to have someone to talk to.  I have found great comfort since joining this site and don't think of those on the site as strangers but new friends who can hopefully help make your days somewhat easier to bear.  You are not alone.  Keep in touch and let us know how you are doing. Roxanne

[Patze]

Hi Cmacd,

Let me also welcome you to the SJS World!  Please do continue reading as there is so much information that it's scary! 

I'm also sorry to hear of your loss, please accept my condolences.

Linda has a very good point, stress will make any AI worse, I know that my symptoms get worse under stress.

I do have a question.  If you're showing the blood markers for SJS, why does the rheumy want you to have a lip biopsy?

Again, welcome and take care -

Patze

[cmacd]

Hi to everyone and those that wrote to my comments.  I know, of course, that stress is a trigger but sometimes it is so hard to control it!  I try not to worry; which makes me worry!  Information is important but it can also be so overwhelming at times. 

Since all of this is new to me I really don't know why the rheumatolgist also wants a lip biopsy.  He is the head of a Canadian SS organization; through Western Hospital.  He just called; said I had the antibody and further investigation would be done to figure out what to do with me next.  He never really gave me any advice.  I will see four specialists including opthamalogist, ent, respiralogist and a RA team.  The tests take all day.  I takes several months to get the whole thing lined up. 

I am going to see my gp (I haven't actually met her yet; my old one retired) on April 27th to discuss things with her.  I suppose coming to a place like this was my way of trying to find out as much as I dare to know and taking some control over my emotions. 

Thanks, again, to everyone here.  Your frank discussions are revealing and sometimes scary, but things that I want to know and to reflect upon.  The overall "upbeat" approach is also helpful. 

I am wishing everyone a special and enjoyable day.  I try to hit the floor with a good attitude but it is oh so hard to get out of bed some mornings.  I just want to pull the covers over my head and turtle but my dog is a good motivator and he helps me find the joy. Even spots of it are worth hunting for.

Carolyn

[Katybarstool]

Hi Carolyn

I really feel for you. You  have had a lot onyoru plate recently, so it's no wonder you want to get bavk under the duvet. Thank goodness for our lovely four-legged friends - they keep us in a routine, if only to make sure they get fed and watered evey day. My old terrier (14ish) is also a joy, and only needs shorts walks now, which fits in with me just fine.

You mention that you are the strong one in the family. I understand that too, but I also know that sometimes we don't allow our loved ones to help us, as we don't want them to think we are weak. I've been through that, but one sister cornered me and suggested it took a tougher cookie to ask for help than to hide everything from others. We will always be here for you, but we can't give you the warmth and affection that your near ones can. Try not to be too strong, you need help from others too - besides, it makes them feel needed

I look forward to getting to know you.

Kathyx

[jonnell]

Hi Carolyn,  Welcome to the forum.  I dont have sjs myself but my 4 year old Jenna does.  She gets so frustrated because she cant do what the other kids are doing.  And summer is also a very bad time for her.  I am a worrier myself everyone says dont worry but they dont understand it is part of who we are.  I find that research is a good stress reliever the more I know about the disease the more I feel I can do for Jenna.  My thoughts and prayers are with you.  Feel free to E mail me if nothing else we can worry together lol.      Hugs and kisses Jonnell and Jenna