down with a bump

[harrigan]

Well, having got the SS diagnosis on Thursday, told family and friends to little reaction and thought I was coping really well, I seem to have crash landed today. I feel like its no big deal to my parents, kids or management at work.  I know I had more or less worked it out for myself so it didn't come as a surprise, so it seems silly now to feel all weepy and alone.

Just wondering ... would the steroid injection or starting the Plaquenil (400mg) make me feel like this?  I am ususally fairly easy going but I have got so wound up 3 times in the past few days - stuff at school that I would normally have let go or said nothing about is going round and round in my head.  Am I going to turn into a grumpy bad tempered moaner as well as everything else???  Ailsa

[kim31072]

Steroids can indeed cause changes in mood,depression,hunger,emotions,insomnia etc it is a very common side effect of them

http://drugs.emedtv.com/prednisone/prednisone-side-effects.html

Kim

[Linda196]

Sorry to tell you this, but steroids could definitely cause the mood swings. The good news is, if you had one injection, (I'm thinking to jump start the effect of the Plaquenil) the effects should start to wear off soon. The one time injectable form of steroid therapy is usually given for it's effect to cover a limited period of time, and the adverse effects have the same term.

Your emotional changes are something to keep in mind and bring up if anyone suggests daily steroid therapy.

[Scottietottie]

Hi Ailsa 

I think you're having a very natural reaction. You can prepare yourself for something all you want but there's still that little corner that says "no - not me! It'll get better. I'm wrong"
The confirmation is still a shock to the system.

Also - you know its changed your life and that's what family and friends don't 'get'. You'd get a totally different reaction if you'd gone home and said you had cancer or MS. SjS just isn't well known about. It's not in the public psyche. It's under the radar - so people don't 'get' it.

I get fed up when my kids think that driving half way down the country is no big deal. I remember when it wouldn't have been but it doesn't matter how many times I've said I don't feel great - they basically push it to the back of their minds and that's all there is to it.

Now you've got the label - you are actually the same YOU as you were last week. The difference will be, hopefully, that docs listen more.

Take care - Scottie 

[Chana M]

Hi Ailsa

Just to echo everyone else -  it's a very natural reaction to be weepy and overwhelmed by the diagnosis alone.  Add to that the fact that people you've told just don't 'get it', probably because they've never heard of SjS. 

But I think that the steroids are also playing their part.  I found the side effects of steroids settled down after a while but they were odd while they lasted:  emotional rollercoaster is the best description, coupled with a constant desire to cook.  Not eat, just cook.  Half way through watching a film I'd suddenly be seized by a yearning to bake chocolate chip cookies.  Late at night I was making huge pots of soup.  It was quite bizarre and I didn't like the sense that I was out of control, although my children loved all the food!  Don't ignore these feelings - make a note in your symptom diary - but remember that they are probably temporary.

You're not going to turn into a 'grumpy old moaner' as you say, but you certainly are entitled to moan here with us, tell us how scared and overwhelmed you feel, and let us look after you.  You'll get through this and the Plaquenil will start to kick in.  Just remember:  this too shall pass.

Thinking about you

[DesignerS]

So sorry to hear how you are feeling.  I think, as many have already said, that you are reacting very normal.  There is definately a grieving period, and its tough when not even your closest loved ones understand.  And on top of that, the steroids are real mood changers.    My family dreads it when I take them.  Keep your chin up, we understand on this board.

Designer

[harrigan]

Thanks everyone - that really helps.  I think I would beware of a steroid injection again unless I could go into solitary confinement for a few days afterwards!  Hopefully those side effects will be wearing off now and I can get on and deal with the diagnosis.  Really appreciate all the information, advice and encouragement from everyone, Ailsa XX

[wednesday mc haggis]

harrigan

   cant ad anything to what everyone else has said, i can say i have higher times and lower times, times where i cope great and times where i want to crawl into bed and not get back out.

lets face it its a high to find what you have thats upsetting your whole system is SJS and has a name, the low is its is SJS and it has a name, i seem to have shot through every emotion possible in last few months.

   not being understood an dits not being a big deal to those around you is enough to make you feel lower, fact that youve just been given a DX, and fact that your body is adjusting to meds, well lassie if you werent emotional , youd not be human methinks.

  Dont be hard on yourself , give yourself time, i dont think your going to turn into a moaner, youve gotten through alot in life,especially recently, and youve coped beautifully.

    meds, dx, friends, family   its all going on , be kind to yourself and dont over worry about the moods right now , for me it just made me worse.

   Friends and family may well come round, i think they all go into denial really, i know my parents did, but theyre being more and more supportive, remember youve prepared yourself at least a little for this, theyve had the luxury of not having to, for a while they might be minimising it to spare themselves pain, i know my mum did

T x

[pudmott]

Ailsa

I pretty much knew i had sjogren's for 12 months before i got my official diagnosis. It didnt seem a big deal and i would come here and post and it was all ok. but thenthe doc said to me yes you definately have sjogren's and i felt really really sad. its like while its pnding there is a glimmer of home that its not andmaybe its something else that can be fixed and go away. But when you hear its not something that can be fixed and made to go away then it puts a different perspective on it and there's a whole different ball game you gotta suit up for.

Its normal to grieve and because most people dont know about it they dont react and cause "you dont look sick" they think well it cant be too bad.

What you're feeling is normal. Dont beat yourself up about it. And remember you have friends here that will lend an ear if needed

Pud

[Epson]

Harrigan,

I never know how steroids are going to make feel, sometimes it's ugly and other times I feel like Superman, but I think you're feeling a little overwhelmed by the reality of your diagnoses.  It took me a while to get use to the fact that I have an IA and I still find it hard to believe I have cancer.

After the cancer diagnoses, I have come to appreciate Sjogren's by realizing that there are a lot worse thing you can have.

[harrigan]

I know there's worse things Epsom, sorry - think I just needed to say it's not as alright as i'm pretending it is.  Hope your treatment horrors are lessening; I always enjoy the wry spin you can manage to put on most situations and your enduing good humour!

T, thanks - I know you are pretty much at the same stage with Rheumatologists etc although you have been unwell for much longer.  Until a year or so ago I never had much more than the odd cold.

Pud - that's pretty much what I feel: sad.  Not devastated or anything, just that with 5 kids, teaching full time and parents in their 80s there's not a lot of space to be ill and no-one really knows except wonderful friends on here.

Thanks for all the support, Ailsa XX

PS Chana - had huge chuckles over the cooking side-effects!!  Like yours, my family would love it if I could have that kind of side effect!!!