I was talking to a dear friend of mine yesterday and she was telling me about one of her best friends, who has been diagnosed with Sjogren's Syndrome.
Her friend has been to multiple doctors (25!) and was treated for MS for 6 years before they discovered she actually had Sjogren's Syndrome.
This poor woman needs your help.......If you have Sjogren's and can help answer some questions below, it would be so helpful to her and to everyone who's trying to advocate for her.
She is simply not able to get her pain under control. I don't know the whole story, but it's something about the doctors not wanting to give her pain medication??? She is clearly suffering and needs pain management.
These are the questions I was wondering about:
-What is typically prescribed for severe pain for Sjogren's patients?
-Is there a diet she can follow that will help her?
-Ever heard of IVIG?? It's a drug to treat Sjogren's.
-Anyone being infused with IVIG? She has to have infusions every two weeks and it costs $8,000. Per treatment.
-Any other drugs you or someone you know is taking for Sjogren's?
Ladies, this woman is one of us. This was a woman who was on top of the world. Then she got sick, couldn't work anymore and is now in a very serious situation, physically and mentally. She may have to move, give up her place and a city she's loved. And on top of all of that, she continues to battle with her insurance company every single day over her infusions.
Honestly, we all think this could never happen to us.... But guess what-- it does.
If you have any advice, tips or can share your own story about Sjogren's Syndrome, please feel free to post back to me. I know my girl friend would be most appreciative, since she's trying to advocate for her friend. There is nothing worse than having a dear friend who's sick. I know all too well as I lost my best friend to lung cancer. And trying to advocate for her was one of the toughest things I've ever done.
Any information you can offer will be greatly appreciated. It sounds like she's in desperate need to get her pain controlled and to try and keep her life from totally unraveling.
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.