Just been diagnosed

Don't be scared Glenys. I have had SS 32 years and only found this forum this year. You are ahead of many others in thsat you seem to have been diagnosed quickly and conclusively, and with the more "traditional" SS symptoms. Others on this forum seem to have much more widespread symptoms OR unclear diagnosis, or both. You are also at an advantage in that it sounds like your medical "team" are on the ball. This is crucial, and if ever you feel they are not taking things seriously or responding quickly to changes in symptoms then take charge and ask for new referrals. You MUST take extra care of your mouth and teeth. So glad your dentisit immediately suspected dry mouth and not what i had initially with "you must be doing something wrong with eating or cleaning", so you are in a relatively good space which is something to be grateful for. A word of warning, and i hope nobody takes this too personally, you will read some very scary and confusing posts here. Some people have extreme symptoms which is a huge worry for them, but if you dont currently have them, please do not expend energy on anxiety about the future. It may not happen to you. Also, some people assign every health symptom they experience to SS, and this simply isn't necessarily so. They may just have more than 1 health issue. Every twinge isn't SS. In my case the symptoms I started with 32 years ago of dry mouth and dry eyes remain my only SS symptoms. They have progressed and i have adapted my treatments and behaviours, but Ihave not expanded into other possible symptoms. I hope this is also the case for you and wish you all the best for a great life living with SS.

Interesting example again of how the patient does the research and puts the symptoms together and reaches a conclusion. If you hadn't done that Glenys I'd wager that no-one else would have for a long time.......so well done! We do have to be proactive in our health.

Please let us know when you get your results, meanwhile post any questions that you have as there are others here who will support you.

I too just found this forum on Sjogren’s.  I have had Sjogren’s for several years now.  It seems most people have just what you have, dry eyes, dry mouth, maybe the “Raynaud’s”...white/blue fingers/toes when cold.  Which I too have.  Others like myself have many other symptoms that come along with it.  They will probably start you off with a medication called Plaquenil.  It is a good one if you can take it.  I could not, as it caused damage to my eyes in the first three months, they took me off of it right away.  It is very rare though, as most people never have this problem.  My mother takes it for Lupus, and her eyes are fine.  You must be seen every 3 months at first by your Ophthalmologist.  If your eye specialist is not covered by insurance, this will be due to it being a medical condition.  I use artificial tears daily to help with my eyes, and I chew sugar free gum all day long, and drink water all day long.  I go to the dentist twice a year, and my husband and dentist call me their mad flosser, or flossing queen, as this is the only thing that will save our teeth...along with brushing at the very least, twice a day, and I do more.  I may get old, but I refuse to be an old toothless lady!  LOL  So FLOSS!!!  My Dentist will ask me this before I even sit down...”Are you still flossing?”  I always say Of Course I am!!  Without saliva, bacteria grows, and disease will just take over, and fast!  I am doing everything I can, or at least I think I am, but sometime I hurt so bad, and I am so sick of all of these meds.  It does tend to dry out our joints as well...which can be very painful, but I also have Rheumatoid Arthritis, so my bones and joints are always hurting, they just hurt a bit more with this.  I also have been having problems with my adrenals and kidneys due to this...after a while, it starts to attack our organs, and that is scary!   I am on Prednisone, and was on Methotrexate.  I am not on it right now, as it really caused a lot of problems.  It is so toxic, it was damaging my stomach and my liver.  I have to wait until all that is calmed down, before we can try another medication to help me.

Well now that I have really frightened you...NOT everyone gets this bad, as you will see from others as they respond to your posts.  But it can be a serious thing, so it is important to stay on top of things.  Make sure you go to your RA doctor regularly, and be watchful of any new symptoms, and tell the doctors as they come up.  Take Vit E, B6 and B12, and what ever else your doctors tell you to take.  A really good multi vit too!  It is really important to support our immune systems, because it is now compromised with this!  Keep your doctor appointments!  Read the posts here, and listen to what the people have to say.  It is all important for you to understand now.  It really is not just a silly name.  I had no idea what I was in for in the beginning!!  But, there are new studies, and new information out there to help us.  There is no cure yet, but that doesn’t mean there won’t be soon. 

I hope you will have the mild effects of it like most, but use the artificial tears for you eyes, chew gum, floss and brush.  Invest in warm gloves and socks for the times when your hands and feet get cold.  Even soak them in warm water if needed.  (this works nicely when you are home)   Try not to be too scared!  Chances are, you will not have the same advanced things I have.  My immune system was already compromised with the RA, and now they think I have the Lupus on top of it all.  Just kind of crazy!   

Hi Glenys,

I'd like to echo what several people - particularly Jennifer - have said. SS varies incredibly from one person to the next, and also within the same individual. I've had it for 22 years though, like most people, it took me 10 years to get a diagnosis.

My symptoms over the years have been dry eyes and mouth, peripheral neuropathy (tingling in hands and total loss of sensation in one big toe at one point), joint pains, tendon pains, underactive thyroid and Raynaud's. Like you, I only ever get it in one hand, and usually only the index finger, though it has occasionally affected all the fingers on that hand.

The rheumatologist will definitely prescribe something for you - probably Plaquenil (hydroxychloroquine) to start with. However, you are not obliged to take this if you don't want to. It is true that SS can progress to serious organ damage in a tiny minority of cases but this is extremely rare. For the majority of us it's little more than a nuisance. Don't forget that any forum devoted to a particular disease is likely to attract the people most affected by it, so you will read some scary stories here.

I've never taken any medication for SS. I only saw a conventional (as opposed to homeopathic) rheumatologist once, just out of interest. I knew what the medication options were before I went (I'm a former nurse) and knew that I wouldn't take any of them unless my symptoms got very disabling or I was at risk of organ damage. I'm not saying no one should be on medication. For some people on these boards they make life bearable. However, no medications come without side-effects, so it's always wise to weigh up the risks against the benefits. Sometimes, especially in the early days, watchful waiting and responsible management is preferable to jumping in with a chemical sledge hammer. You can always start the medications later on if you need them.

In my case, SS regularly goes into remission. By this I don't mean I have no symptoms at all during remission periods, but that they become barely noticeable. It also has a tendency to wander around my body, and I rarely have more than one or two symptoms (in serious form, that is) at the same time. In fact, all my symptoms were at their worst in the first few years. Either that or I don't notice them any more! No, they really were worse. Big, painful sores at each corner of my mouth that cracked open and bled every time I opened my mouth to eat, one attack of conjunctivitis after another because of the dry eyes etc. Yet I haven't had any of that for 20 years now, in spite of having mildly dry eyes and mouth most of the time. I can honestly say I feel better now, at age 72, than I did when it first started.

The only organ damage I've suffered is a hit to my thyroid gland. You'll need to make sure that your doctors include thyroid function on blood tests at least once a year, and immediately if you notice you're losing an abnormal amount of hair. The thyroid is particularly sensitive to auto-immune diseases like SS and SLE. The good news is that an underactive thyroid is dead easy to treat - you just pop one or two pills of L-thyroxine (synthetic thyroid hormone) ever morning for the rest of your life and end of problem. And thyroxine not being strictly a medication, it has no side-effects after the first few weeks.

You're obviously the sensible, pulled-together type who's going to manage this condition with no problems. And we're all here if you have any questions. You'll get conflicting advice from us as to medication, of course, but I'm sure you'll be able to navigate all that!