Newbie from Spain

[louiseteve]

Hi there

Thought I should introduce myself rather than just lurking in the background.

I am a 42 years old mother of 2 small boys  and a Brit living in Madrid, Spain.

I was dxd in 1998 with Sjogrens, Antiphospholipid Syndrome and SLE - dx was after 11 years of issues coming and going but always put down to stress.
Initially I didn't worry too much about the SJS as the APS gave me more issues of an instantly serious nature with TIAs and miscarriages. I did however get lucky and after 2 schrimer's tests registering 0 they gave me punctual plugs. Wasn't standard at St Thomas' UK at that time but given the fantastic help it gave me they have since made it standard for SJS patients to be atleast considered.

Anyway, we'll move through the years and just say that I have had good years and bad years and lots of issues with arthritis and muscle problems and I got disabled out of work in May 2001. I did however get stronger and went back on an up and still pretty well ignored the SJS though in 2006 it was noted I had the start of peripheral neuropathy - not told any more than that or offered anything as was pregnant with second son.

I went into a full flare in May 2008 - mainly due to stress with my parents having ops in the UK and my mother in law with colon cancer and my youngest as a sick baby with then undiagnosed issues. We're now August 2010 and it has yet to let up. My diagnosis was changed to Primary SJS with associated Arthritis in 2009 and I started Metho, then moved onto another equivalent when that made me sick, then onto Imurel. But still no let up so in September am doing my first infusion of Rituximab....

Not taken the decision lightly, have read the other posts on it and see that it could be a double edged sword but am trusting in my specialist and the fact that she is always resistant to using any meds unless she is convinced it could make a difference (been with her for 8 years now since now long after I moved to Madrid).

The best news for me is that I have finally worked out that when I have had the electric shock type shudders and odd sensations it's not me going completely mad. Also, now we have nailed that the SJS is my primary issue (though find it funny that also have APS listed as my primary) I know where to focus my energy on being informed and fighting my corner. I shall cross fingers that my infusion is one of the ones that goes slowly but easily and my recovery is gentle and without complications....... (did I mention that I remain the eternal optimist?!) 

So apologies for a long intro and I hope I'll be well enough in the coming months to contribute and not just be a lurker but if not then I promise I will put in my two pennies worth when I can.

Thank you for all being out there to share the journey.

[Cheryl]

Hi Louiseteve,
   It's nice to meet you.  You have a wonderful optimistic attitude, and I wish you the best outcome possible! 
Cheryl

[Joe S.]

Welcome. I follow an alternative system as you will see from my signature.

electric shock type shudders and odd sensations it's not me going completely mad.

I have experienced these for decades. Most of the time I just roll with the punches and take a 1/2 to 1 hour "nap" in response to the pain. When I have to be alert and feel the onset of them I will take a couple of 222's to see me through.

My daughter is on something like Rituximab... She stopped taking it for the birth of her second son and will resume when she stops breast feeding.

As long as you live, always remember to breathe!

[navydad]

welcome and good luck with the Rituxin,,

[Carolina]

Bienvenido a Team Sjogren's.

Of course some of us don't HAVE Sjogren's officially, but.........here we are.

I have those electric shock thingies in my neck, probably from severe Degenerative Disc Disease.

And sometimes I just have a sort of all over jumpy shock.

Weird.

You must post and comment and dump stuff here.

Kisses

Elaine

[Scottietottie]

Hi Louiseteve 

Welcome to Sjogren's world.

There are hosted chats but many of them fall in the middle of the night for Europeans. If you would like to chat in 'real time' sometime there is a hosted chat at 7p.m. GMT on Wednesday evenings. We've nicknamed it "eurochat" but it's for anyone who's around.

Hope you find the site useful.

Take care - Scottie 

[louiseteve]

Thank you everyone - with a bit of luck I might even be able to contribute some useful experiences. I have now added my diagnosis and list of current meds (with their US equivalent name if using a Spanish variety).

As for the live chats, ironically enough I am more likely to be able to 'attend' a middle of the night one than sensible euro one as kids prevent many things occurring before 9pm or later here... no wonder I feel exhausted half the time!! 

[Bucky]

Hi Louiseteve - welcome to the Sjoggie family. 

I hope you find lots of useful information here on the forum and even find some new friends in the mix.    

Many times the doctors we see don't quite "get it" . . . be assured, those of us here get it!! 

It must be difficult for you to not feel well and have two small boys to take care of too.  Hang in there.

Take care and come here as often as you feel up to it.

Bucky

[lynnmarie219]

Hi Louiseteve and welcome to Sjogrens World!

So glad that you found us and introduced yourself to us here. Nice to meet you!

Also want to wish you good luck with your first infusion next month...keep us posted on how it goes for you!

Stay optimistic and keep that great attitude that you have...it will take you far......and always feel free to come here to share your good news and experiences...to vent....laugh or cry...or just have some fun or find some support and friendship whenever you feel comfortable and can make it here! We are always "open". 

[Chickpea]

Hi Louiseteve

Sorry I'm adding my welcome so late.  Your SjS journey sounds a little like mine with mainly neuro issues although I also have completely dry eyes which the Schirmer test revealed.  I was initially diagnosed with MS and I'm pretty disabled now - I tell the story on the staff page if you want to know the gory details!

I think you've got a brilliant attitude combining optimism with trusting your specialist, who sounds like a thoughtful person.  This isn't an easy journey we're on but I'm sure you're making it as good as you can by thinking this way. 

How did you cope with the Methotrexate and Imuran?  Did you have many side effects?  I have a friend with RA who has had two Rituxan infusions and was absolutely fine, just a bit tired after the day in hospital each time.  I was on CellCept - Mycophenolate Mofetil - for a year or so but it didn't slow the progress as much as my rheumy and neuro had hoped.  So earlier this year we tried Cyclophosphamide/Cytoxan which has worked well for some people.  Unfortunately I'm not one of them!  It took me a few months to recover and now I'm waiting to restart CellCept.  Only with hindsight did I realise that it was actually doing something to help, even if only a little. 

Have you met other people with SjS in Madrid?  What's your opinion of the medical system there?

Hope you visit SjS World often and get to know us.  We're a friendly lot!

Thinking of you - Chickpea (in Brighton, south coast of England)