Just diagnosed last week -

[caseybluemax]

Just found out last week I have Sjogren's. My husband wanted me to join a support group so I can keep abreast of any new advances in RX; what to expect; will this disease progress, or just stay 'as is'.
I've noticed I have more 'mood swings' from utter despair to 'it's OK' - (frustrating for my husband).
I wish I wouldn't get SO tired!
I wish food tasted good again - nothing tastes 'right' (which has impacted my cooking ability)
I've learned to use XyliMelts a lot - plus Biotene products - Restatis for my eyes - Plaquenil along with 1/2 Immodium sure helps!
Thanks in advance for any help / encouragement -

[EllaBlue]

Hi casey and WELCOME. I am fairly new to this forum, but the support has meant so much to me!!! I just started having some computer issues, so I hope I can find out soon without missing too much time here.
I think it really helps to have others understand. I know already, my stress has lowered because of people reaching out and caring. We all need to know we matter:)
I too lost so much of my ability to taste!  I am rarely hungry just because nothing gets those taste buds going. I am on the plaquenil for my Lupus with HOPES of it helping my Sjogrens as well.
Please pull up that virtual chair and make yourself at home!
Nice to meet you!!!!
EllaBlue

[Katybarstool]

Hi Casey

A big welcome from me too. I've been a member for maybe four or five years, and check in most days. The support,advice and information I have been given by the very caring members has been astonishing. My life would be so much poorer without them.

Your husband sounds a very sensible man. We all need to learn from one another, and share with one another.

I look forward to getting to know you.

Hugs
Kathyx

[Doxie]

Welcome Casey! You came to the right place.  There is a ton of information here.  Someone is always finding out about something new, or trying new things.  Everyone shares and talks about how things works for them.  You can also do a search, since there has been so much good information in the forum in the past too.

My taste gets weird sometimes too. Sometimes no taste, and then last week, every thing seemed real intense. I guess, there can be ups and down with the taste buds depending on what's going on with the Sjs too!

So sorry that you are dealing with this disease, but I'm glad you found us!

[iraisin]

Welcome Casey.

I hope we help fill the "gap" of understanding and information. Sounds like you're doing good getting on the Plaquenil.

My sense of taste and smell go in and out intermittently - so there's no telling from day to day if I will actually enjoy my food. yes, it's a drag.

[Scottietottie]

Hi Casey 

Welcome to Sjogren's World. This is a good support group.

Sjogren's is a very individual disease. It is usually described as 'slowly progressive' but some people get really ill and others don't seem to find much progression at all. It's unpredictable and there is no point wasting energy worrying about what MAY happen - because it MAY not. Learn to take each day as it comes. Some will be better than others. Enjoy the good ones!
I'm 60 now. Things went wrong in my early 30s. I'm still working. My 'progression' has been slow and some of it is probably ageing rather than SjS!
Mood swings are common. Most people go through a period of mourning for the health they once had. Getting a dx that is forever is hard but there is life after Sjogren's - honest!

I hope you find the forum useful. It is certainly friendly and supportive.

Take care - Scottie