sjogrens diagnosed

[harrigan]

Hi - not sure if I should post this in newbies or elsewhere, but as I am only a month old on the forum, I'll go for here! (Please move it if it's wrong)

I went for my follow up appointment with the Rheumatologist today, having had bloods and 1st exam  4 weeks ago.  He said straight away it is sjogrens and I was so taken aback that I didn't ask which blood tests proved it etc.  I was only in 5 mins - he is not a great conversationalist - and he told me to see the rheumatology nurse who would explain meds etc.  Thankfully, she was much nicer!  I'll be on 400mg plaquenil and had to have a steroid injection to deal with pain and inflammation in the meantime.  I also got eyedrops.  I think I still have to carry on with the amytriptaline - nobody said.  Does that sound right?

Feeling a bit shell-shocked with all the leaflets, tablets and list of appointments to come.  I also have a niggling feeling that it might not be quite right.   I thought I'd read on here that if you have other symptoms than sore eyes and dry mouth, then the Sjogrens was 2ndary.  The Dr said that the pain and swelling in joints and deformities in fingers and toes is caused by sjogrens, not rheumatoid arthritis.  Is that right?  I was a bit reluctant to ask him again as I was finding it hard to take it all in. 

I would be grateful for any advice please!  Anything I should know or should have asked?  Thanks XXX Ailsa

[pudmott]

HI Harrigan,

Wow you certainly to take in at the moment. I have moved your post to general discussion as it will get more responses for you here.

To answer some of your questions primary Sjogren's is when you have Sjogren's and no other auto immune diseases. Secondry Sjogrens is when you have Sjogren's and one or more other auto immune diseases succh as lupus, hashimotos RA etc.

To answer another question, it is correct that you can have other symptoms such as pain and swelling of fingers an toes. Also fatigue , GI issues other oragn involement and such. Not everyone gets that some people just get a few symtpoms some get a whole range. THis is a very individual disease and you'll soon come to learn what your symptoms are.

As for your meds the new ones you have been put on are pretty much the same as what a lot here are on. As for the amityptaline the best thing to do is ring the rheumy practice back and ask them.

This will be quite a shoxk for you even though you may have had suspicions. I know it was for me when i was finally diagnosed. There will probably be a lot of emotions as well. They are all valid and its quite normal to feel really overwhelmedabout it all

Ask any questions you are not sure about. Im sure you will have heaps

You have heaps of support here from your sjoggie family

Pud

[Chana M]

Hi Ailsa

That's a pretty overwhelming way to get the news.  The good thing is that you were prepared for the diagnosis because you've been hanging out with the disreputable crowd here in SjS World!  It does seem odd that the rheumatologist only took a couple of minutes to give you such big news.  Did he hand you the (virtually useless) leaflet too?  That's what I got after waiting over 2 years for a diagnosis.

Just to echo what Pud says about primary/secondary SjS - you'll find that there's an array of symptoms that come under the SjS umbrella.  Some people are very dry, others have central nervous system symptoms that mimic MS, some people have all sorts of exciting complications.  My general advice would be to keep going with your symptom diary and note down everything that is out of the ordinary, even if you're not sure it's a SjS symptom.  Any digestive issues, nosebleeds, aches and pains.  Or maybe the way you react to viruses/coughs and colds.  Then you'll build up a set of questions to ask at future appointments.

What advice were you given about starting Plaquenil?  It sounds as though you've been given the full dose - did they suggest starting it gradually?  Most of us here have done so, following Pooh's advice about starting with half tablets and taking them with yogurt.  You're welcome to message me if I can help with this, or you could look through old posts where there's loads of info on Plaquenil.  Ditto amitriptyline which lots of us use for nerve pain, although I've changed to nortriptyline because it causes fewer dry issues.

Last thought - allow yourself time to adjust to the diagnosis.  It's a huge deal to be diagnosed with any AI or long term medical condition, and you've probably got all sorts of worries and fears.  We are here to help you through this - just ask for what you need.

Thinking of you

[Scottietottie]

Hi Harrigan 

I'm on 400mg Plaquenil and am also on Amitipyline so one isn't contra to the other I don't think.  When I was put on Plaq I was told to build up to the whole dose slowly. One tablet every second day to bein with. That for a week and then one every day. After another week I added another one on alternate days and after a month I was on the 400.  Importnat to take it with food as well. (Definitely not at the same time as antacids - read the leaflet!)

It's a pity the rheumy wasn't more friendly but I'm glad the nurse was.

Take care - Scottie 

(The shell shocked feeling will subside - give it time!)

[JannaLee]

Oh Harri,

I'm so sorry you have Sjogren's Syndrome.

About having it as Primary or Secondary to another Auto Immune disease.  I completely understand your concerns about mis/partial diagnosis.

I think you should call the Dr. Office and ask for a copy of all your lab work.  (Actually you should probably make a practice of ALWAYA getting a copy of everything from here on out.)

Then look it all up yourself and/or come here and we will help you.  Along with your list of symptoms, and the published criteria for RA diagnosis you will be able to get an idea if you should ask for more lab work and be able to talk in an informed way with your doctor at the next visit.

This is the way medicine is practiced these days, I'm sorry to say.  It seems a proactive role is required to assure adequate medical care and since these diseases are kind of a big deal we really have to become educated and keep after it.

Wishing I were there to lend my shoulder!
We are here for you,
Janna

PS I was diagnosed with primary Sjogren's 1 year ago and my doctor has told me to expect a Lupus diagnosis sometime down the road.  He said these diseases have a way of "morphing into one another" and I look like I'm headed that way.  I'm telling you this, so you'll know a definitive diagnosis isn't always immediate because of the fickle way these diseases present and develop.

Honestly, if I had more hair, I'd pull it out from frustration!

[eyeamdry]

Janna Lee, I wonder if your doc knows what he's talking about when he says to expect a dx of Lupus "down the road."  That sounds like a kind of stupid thing to say if you think about it.  I have primary SJ and was dx two years ago and my rheum or GP never said anything about expecting a lupus dx to follow.  Not that anything would surprise me, but your doc sort of laid a bad deck of cards in front of you, I think scaring you unnecessarily.  I do have "all" of the problems and not just the eyes and mouth stuff.  Feel well compared to before treatment.  Lucy  Sorry, didn't mean to hijack thread. 

[harrigan]

Thanks everyone for the advice and support - it was so helpful knowing what I was prepared for because of the advice on this site.  Your support and encouragement are invaluable.

As for the Plaquenil, he told me to take 400mg a day, no advice to build up slowly.  Unfortunately I read your advice straight after taking my 1st 2 tablets (with breakfast).  I have a full day's teaching today... So I will just have to see what happens.....

Does the steroid injection I had make you feel sort of startled?  I slept very lightly with loads of stuff going through my head and got up before 5am. Thought I may as well get on and do things as lie there fretting.  So, week's shopping is done and put away at least.  If it's a side effect of the injection, will it wear off soon? 

Have a good weekend everyone xxx Ailsa

[wednesday mc haggis]

Aisla

sorry you got this DX, but i know how stressed youve been and what youve been going through from your posts to get to this stage.

take it a day at a time, i can see your rheumy went to the devoid of bed manner school, really some ppl !!  Were all here for you and able to listen and help if we can, youve gotten this far, and you ll get through this day at a time.

T x

[harrigan]

Thanks T - how are you doing too?  Did you try the amytriptaline?  You still waiting to see NHS Rheumy? Hope you are feeling a bit better on the new diet and you are still showing off that ring!!

[wednesday mc haggis]

Harrigan

    thnaks for asking considering the time your having.
no doc put me on venlafaxine, took a horrid reaction, beginning to feel better now , still to see HNS theumy and right now awiting my SS a SSb results, fingers crossed it shows something, and finally someone listens lol , felt alot better on diet, bloating down and energy up a bit, just waiitng this rheumy with hope, take care of you, and may your journey with SJS be as easy as possible
T x

[beverley]

Ailsa,
I was put straight on 400 mg Plaquenil without any build up and also Naproxen (two tabs twice a day) which I vary according to how I am.  I didn't have any bad side effects from the Plaq and as it takes quite a while to get into the system I don't think you'll have any worries.

It seems harsh to be thrown in as you have been, but I don't think it's uncommon.  It's how it was for me and I have survived although it would be better to be gently introduced.  Unfortunately the disease doesn't know this and often it's a major flare that reveals it.  Hope you get all the help you need - you are in the right place - the guys here are great.

Beverley

[Jaws]

Hi Harrigan

Sending you best wishes, and thinking of you.  I'm sure you have mixed feelings about this - on one hand the relief that you have a diagnosis to explain symptoms, but on the other hand, feeling 'pushed out' too soon by the Rheumatologist.  If they did not even explain on what basis you were diagnosed (which blood test I mean) and answer all your questions, you must have felt rushed.  I'm glad the nurse spent more time with you.

Take care x