Well I had my first follow up after being tested positive for SS. The SS test came back positive again. Doc believes that the SS is making the pain in my bones, jaw, hands, fingers etc. My blood test for inflammation in the blood is very high,so she has referred me to a hematology onoclogist to check for lymphoma. She told me SS patients have higher odds of getting this plus me being a breast cancer survior makes the odds even higher. She has put me on Plaquneil, predisone and morphine for pain. She thinks its okay for me to have my surgery on the 16th ( thyroid mass ) but wants me to call surgeon , tell him about ss and meds and get his opinion to go forward or to postpone.. It has been a very long 3+ years of this , so at least I feel I am getting somewhere. I can't pretend that I am not worried, but my moto has been and always will be to KEEP ON KEEPIN ON
bluesheeler, I'm hoping for a favorable outcome for you. We will all be thinking of you and hoping that all goes well. You have a great attitude, and that will help you through this. Please keep us posted.
Hi Blue, first let me congratulate you on being a cancer survivor. I’m sorry you are going through all of this. Life is funny like that. Keeps dishing out more and more, until we are ready to break or do break, but keep going anyway, because there is no where else left to go but up.
I’ve been on the Plaquneil for almost a year and my hair has stopped falling out and I do notice a difference in other ways. I’m also on steroids, but that’s for my fibromyalgia. I’m glad you are getting pain relie with morphine. I too am in a great amount of pain, but is a combination of SS, fibro, back, knees, and just a boat load of other things. I am happy for you that you have a doctor that is addressing SS and your pain. I have found it very hard to find a doctor that will address pain here in California. They believe that everyone is a drug seeker. Blah.
You’re fortunate that it only took 3 years for you to find the SS diagnose. The average is 7+. But any amount of time wondering is torture.
Good luck with your up and coming surgery. You’ll be in my prayers.
Bluesheeler, you have an awesome attitude about this. It's normal and perfectly ok to be concerned but it sounds like you are in good hands. Being methodical and making sure everyone is aware of your condition, etc is the best thing to do. Will be keeping you in prayer and I'm sending gentle hugs. Please keep us posted on how you are doing along the way.
Wishing you the best. You're still new to this revelation, so be good to yourself and don't worry. You seem to have a doctor who really cares. That helps so much.